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Archived Updates - Second Relapse [July 2010 - August 2012]


The latest (August 31, 8 a.m.): Dylan's MRI was moved up to next Tuesday, the 4th at 4 p.m. Since it is so late in the day, we may not have results until Wednesday. Our oncologist is out of town, so we will be talking to an alternate of his. This will tell us if the Erbitux worked or not, and whether or not to continue on it. When our oncologist returns, we may revisit our discussion of the bone marrow transplant. For now, please keep us close to heart late Tuesday afternoon.

Also, check out the new logo Chandler made for this site from the SuperDylan T-shirt, upper left. Kind of looks like a banner waving in the wind. He has been helping me out with our websites, and is learning a lot about site design. In other tech areas, he has already surpassed me! (A chip off the old block, I recall that at his age I taught myself the BASIC computing language).

Dylan's open house at school was last night. We are so grateful for his teachers at his new school. They said he works so hard. However, he did lie on one homework assignment by saying he was stronger than me! (He later explained that he meant he is more advanced than I am in karate, where I am not even a white belt -- touché!). I have forgotten to mention that, as part of his IEP, he is riding the bus to school -- by himself! It's like a private chauffer with a supersized Hummer limo (though, he notes, sans candy, soda, pizza, TV, A/C, lights and music, as he had in his real Hummer limo for his 9th birthday. His bus driver is so nice, too!

The latest (August 27, 11 a.m.): Dylan had a good first week of school, although an ear infection took him out Friday. He's alright now and back in school today. His open house night at school is this week and I can't wait to meet his new teacher. His teacher shared a moment in class that Dylan was moved by the story they're reading, The Trumpet of the Swan. Dylan raised his hand and shared that he liked the main character, the mute swan Louie, because "although he is defective, he still can fly."

The latest (August 20, 8 a.m.): Chandler and I had a great time in San Francisco, starting with a visit to my aunt and uncle's house, where they treated us to pizza, brownies, ice cream, and a rare VHS of the 10th anniversary of Les Misérables! Chandler did not sing for them, but he was pretty tired from singing during the six hour car ride up there.

We drove to the Golden Gate Bridge, but it was fogged over, and then went down the curvy section of Lombard Street, then to our hotel and had a special Les Mis menu at the Grand Cafe. Les Misérables was all we expected and more. Chandler has not stopped talking about it, all aspects of it from analysis to awe. We got a few signatures at the stage door afterwards, and photos with the actors who played Jean Valjean and Madame Thénardier.

The next day, we went to Fisherman's Wharf and Pier 39, including the sea lions, wax museum, Ripley's museum and the sourdough museum, all before lunch! We were happy to come home, and we have a lot of good "recon" for a family trip in the near future....

A friend is taking Chandler to Mary Poppins this week, and another couple of friends took him to War Horse a couple of weeks ago. It's been a good summer for him!

Jana and Dylan had a lot of fun at home, working on a 1,000-piece New Yorker puzzle, hanging out with friends, seeing The Odd Life of Timothy Green, and eating out. Dylan felt well enough to go to school today, in fact he went eagerly -- yelling at mom to hurry up!

His eagerness was rewarded when he was greeted by his classmates with a sign that read "Welcome Back Dylan!"

The latest (August 17, 6 a.m.): After a long morning nap and a marathon of Disney Channel, Nickelodeon and Cartoon Network, Dylan got a haircut yesterday, as well as a kind and warm note from his new teacher, who is a male, new, and already well-loved at the school. Maybe Dylan will feel like going by again today after I read it to him.

Chandler is in full-on Les Mis mode: researching all the people who are performing in the show we are seeing; watching countless YouTube clips of various performances (and the trailer for the upcoming film); singing songs from the show constantly -- I mean that literally; and already planning his Enjolras Halloween costume (currently looking for a red vest, size Medium). On the way in to San Francisco, we're going to visit my Aunt and her family, and she has already put "I Dreamed A Dream" out on the piano for her to play and him to sing. If he lets me, I'll try to get video on my phone. :)

The latest (August 16, 11 a.m.): Dylan ate a TON once we got home yesterday, slept mostly through the night until he needed a cuddle with mommy. He has headaches when he moves, and can't lie on his back because of the location of the incision; that will improve, and already has. But overall he is doing well: He has been eating more, and even went to school to say hi to his new class and teacher today.

We are not taking the San Francisco trip after all, only Chandler and I are going up Saturday to catch Les Mis and come back on Sunday. Dylan was worried about his head hurting, and his toes still bother him, and so we agree that he and Jana should just stay here and avoid the bumping car ride and amount of walking required. We'll take the family trip if and when fate allows. Maybe over Thanksgiving break....

The latest (August 15, 4 p.m.): DYLAN IS HOME!

The latest (August 15, 7 a.m.): We took Dylan to the E.R. yesterday morning, after he was drowsy and unresponsive other than vomiting violently. He had no fever. We got to the E.R. at Children's, and they ran a CT scan and X-rays, to see if anything was noticeably wrong with the shunt that drains the cerebral-spinal fluid (CSF) out of his head and down to his bladder. They also pulled a little bit of CSF to test it for infections.

Nothing was wrong on the scans, but they did show that the ventricles in Dylan's brain were larger than the previous scan, which means more fluid buildup, which points to either a shunt malfunction or issues in the brain that are a side effect of the Erbitux he had been taking. His CSF was not infected -- it was clear -- a good sign both regarding infections as well as cancer cells. They then drained a lot more of the CSF fluid (about 20 ccs) out of his shunt, and that made him come awake a little bit. The neurosurgeon on duty recommended we go in and replace the shunt.

The shunt he has in there was placed a few years ago (a replacement of the original one placed five years ago), and is programmable. It was put in there for a therapy we were going to do in New York that did not pan out, and the shunt has to be reprogrammed with a magnet by a neuro doctor after each MRI (because of the strong magnetic field). Sometimes it takes hours for neuro to show up and fix the shunt after an MRI so we can go home, so we will not miss the programmable shunt. The surgeon cut along the same scar Dylan had originally and once the hair grows back it will cover it.

The surgery took a couple of hours -- Dylan was the last kid at the hospital last night to have surgery. Chandler and I waited for him to wake up from the anesthesia and get settled back in his room, before we headed home to sleep at midnight. Unfortunately, we returned to find that the one shared room on the whole floor was ours, and that we were sharing it with a baby -- Dylan hates sharing a room with babies, because they cry too much and disturb him.

I hope he is feeling better today. Chandler and I are heading out there in a bit (once he wakes up). They said Dylan could come home today as long as he is eating and responsive. He was already a good sight better after the surgery, so I really hope he is fully back to normal today, and we can all come home (and keep our San Francisco trip for this weekend).

As always, we are so appreciative for all the friends who have sent well wishes, prayers, thoughts and all kinds of offers to help. If it takes a village, then we have a metropolis of support!

More tomorrow, if I can get on a computer at the hospital -- if we are still there (my computer crashed, and that was already an old backup laptop). *sigh*

The latest (August 14, 9 a.m.): Dylan has been throwing up since 4 a.m. He had headaches, but those seem to have passed. He is not going to school, and may end up going to the E.R. Please keep us close to heart. More later.... [UPDATE 10 a.m.: We have been told to bring him to the E.R. at Children's for a CT scan asap. All four of us are going.]

The latest (August 12, 11 p.m.): Dylan decided to go to Camp Ronald McDonald at the last minute and, after quickly packing him a bag and his meds, and after a tense drive to the drop-off, they let him go! He and Chandler had a great time, and did not want to come home [see photo of them to the right]. There are many photos of their fun times on my Facebook page. The counselors had the nicest things to say about both boys.

Both of Dylan's big toes are bloody around the edges and it's very painful for him to move around much at all. Jana is treating as well as we can. Hopefully since he's off the Erbitux, perhaps things will subside. We are rescheduling his MRI, and aren't sure if he should continue the Erbitux this week after having last week off. Our oncologist is out of the country for a month, and we aren't sure if and when we'll be able to get Dylan in for an MRI. Right now, the next opening isn't until late September, so we are hoping for a cancellation.

Dylan starts school tomorrow. Chandler's school doesn't start for nearly another month!

I'm excited to be taking the family up to San Francisco this weekend, to see Les Miserables with Chandler before the tour ends, and to show the boys the city after having told them so much about it.  More about our trip with next Monday's update....

The latest (August 6, 6 a.m.): We enjoyed the rest of my family's stay with a trip to the Santa Monica Pier, more time by the pool, and a couple more adventures eating out. The boys miss them terribly, and are already counting the days until Christmas.
Dylan has been having more severe pain in his big toes and two of his fingers, and the toenails appear to be separating -- one started bleeding last night. He also has been throwing up and having stomachaches. He has been staying off his feet, which is hard for such an active kid. The rash on his face has been better, but the skin is dry and scaly now. We are soaking his feet and moisturizing his face. The extra dose of anti-seizure medication also seems to be making him sleep more, and perhaps to be more irritable.
Thankfully, he is off the Erbitux next week and so can catch a break. His MRI is Wednesday morning. We will have results that same afternoon as our oncologist is leaving town for a month and wanted to make a decision on whether or not to continue with the Erbitux before he leaves. We also will learn whether or not we need to start giving him weekly GM-CSF injections at home. I'll update again Thursday morning with the results and next plan of treatment.
After completing Les Mis camp last week with a fun tour, Chandler leaves later this morning for Camp Ronald McDonald for Good Times, in Idylwild for a week. Dylan is too homesick to go, and has the scan mid-week anyway, so he is staying for the last week of his sports camp that he loves, as long as his toes will let him. Otherwise, we may spend the week with him in the pool....

The latest (July 30, 8 a.m.): We had a great weekend. Dylan had a pool party to celebrate five years of surviving cancer and its therapies. My parents and sister came to town, and we all went to see Chandler in his summer school production of Les Miserables. It was 3 hours long and I never checked my watch once. We were riveted throughout and even Dylan loved it (especially the battle scenes, he said, and most especially when Chandler's character died!). Chandler has matured dramatically since his last show, in his voice, his acting, his stage presence, and his relationships with the other actors. I am so proud of both my boys.
We spent most of yesterday at the hotel where my family is staying. We walked along Ocean Blvd yesterday with my parents, and the Promenade as well, stopping for some gelato in the afternoon. Dylan had some thumb pain, a side effect of the Erbitux, but Tylenol helped. The boys had a slumber party with Aunt Ann in her room last night and are STILL asleep as I write this. :)
Chandler's theater troupe goes on tour this week, performing at various venues around Los Angeles, with today's being the biggest trip down to Disney's California Adventure park to perform and then play the rest of the day and night. Also, a song Chandler sings backup on was just released. He is in the kids' choir backing Youngblood Hawke on this song, "We Come Running"
Jana is rebooting her personal training business, studying for a new certification to be able to teach groups, and forming a fitness boot camp for the Brentwood area. We will be revamping her website and sending out information in the coming weeks....
The latest (July 27, 8 a.m.): Dylan slept through most of the procedure yesterday (and then was up until half-past midnight!), and is only showing a more acne-like rash on his face, which is to be expected. He is feeling fine this morning, and he is eager to go to camp, where today's theme is Venice, and Dylan is excited to tell the coaches that he has been there -- both in Italy and the quaint, local part of town.

We were given a prescription for Clindamycin gel to make it go away, and we can use a steroid cream if he has any itching, which so far he has not. We scheduled his next MRI for August 8.

Chandler had rave reviews after last night's performance of Les Mis for his school's summer drama camp. He has two more official shows at school, and then they tour all next week (including California Great Adventure). I am hoping they take lots of pictures so I can share some on Facebook, as I have done with Dylan at Coach Steve's Summer of Fun camp: both camps have made both boys so happy this summer. Chandler and I shopped for the makings of a basic French meal, such as we had in Paris (Vaucresson, technically) with friends last year while traveling for Dylan's treatment, so he could get into character: A baguette sandwich, with cheese and butter, with some basil.
Historical note: five years ago today, also a Friday, we took Dylan for his first MRI one day after I was done at work. I worked at MySpace then and we went to a place in Beverly Hills called Advanced Radiology. They met me there, so we had two cars. I bought them dinner to go at Delfini, an Italian restaurant across the street. They had no contrast to give him, no anesthesiologist, and no one to read the results, because those people had left for the day. The technician was there to run the test, and then said they could give us a reading Monday. 
They let Jana come in with him, but not me, and ran the scan like it was just another routine procedure. But the look on the tech's face when he saw the mass in Dylan's head told Jana all that was necessary to know it was a parent's worst nightmare. I drove Dylan home, playing loud music, as we followed Jana. I could see her weeping uncontrollably in her rear-view mirror. We went to Cedars the next day and they bumped Dylan up to the first surgery on Sunday, and that's where it all changed (and this blog began). 
We celebrate Dylan's life this weekend, and our family's endurance, and the help of friends, strangers and providence on the journey.

The latest (July 26, 8 a.m.): Dylan had no rash or pain yesterday, although he did have a minor rash this morning, we put a little hydrocortisone cream on it, but did not give him Benadryl, so he can enjoy camp (they give him Benadryl today at the hospital anyway, as a precaution before the chemo). 
Hopefully the side effects will only be sporadic and manageable with the over-the-counter medicines. I take him in today for his next infusion of Erbitux. I hope he is feeling well for my family's visit.... 
Chandler's first performance of Les Mis is tonight. Keep him in your thoughts as well! Break a leg, Chandler! [Note: he is playing Enjolras.]

The latest (July 25, 7 a.m.): Last night Dylan had a rash on his face and his big toes hurt around the nails. This is a common reaction to the Erbitux that he has been taking. We gave him Tylenol and Benadryl for the pain and the rash. He goes in Thursday for the next dose, so we will address these issues then. Apparently getting on an antibiotic like Minocycline helps, and the side effects reduce with time and go away once off the Erbitux.
Our oncologist emailed to say Dylan must stay out of the sun. Since it's summer and he loves camp so much, that is unlikely. So we have to make sure he's lathered with 45 SPF sunscreen. He also said to buy him some larger, soft shoes to wear.

Based on what I've read, there appears to be no correlation between the side effects and the efficacy of the medicine against the cancer. Many doctors tell their patients that it means it's working, likely because it will make the patient feel better. We can only hope it's working.

We are all excited that my mom, dad and sister is coming to visit for a few days. They arrive this coming Saturday. We are celebrating the 5-year anniversary of Dylan's first surgeries, and we are also going to see Chandler in one of his Les Mis performances from his summer camp.

The latest (July 22, 7 a.m.): Dylan had that same seizure feeling last night during a fun playdate. He said he felt really hot and sat near mom, zoned out for a bit, then went to sleep for a while. He said he felt scared when he had the feeling and is worried he'll have another big seizure. He is on Keppra for seizures. We are keeping an eye on him. [NOTE: Our oncologist later said if he has any seizures, then we need to bring him in to the E.R. He also increased Dylan's Keppra dose from 2 times per day to 3. That seems to be helping.]

The latest (July 21, 7 a.m.): Dylan did alright on the Erbitux but last night he zoned out, similar to the petit mal seizures he had previous to the big one he had. We even went out for pizza, but he just complained of being cold and tired, so we left and ate at home. He watched a little TV, then slept through the night. He seems alright today, looking forward to a playdate and counting the days until my parents and aunt visit a week from today.

The latest (July 19, 7 a.m.): Dylan went in for a regular checkup and blood work yesterday (that lasted six hours, including drive time). He is doing so well on the Erbitux that, instead of giving it to him every other week, they are going to switch to weekly (every Thursday), and keep an eye on him. Which means he is being given another dose of the Erbitux today at 1 p.m. I'll update again tomorrow with how he did. We are hoping for the best, but side effects mean that the chemo is working, so in a strange way, we are hoping he feels a little bad after getting it.

The bone marrow procedure remains on-hold. We will have an MRI after 4 weeks of the Erbitux (about 2 more) and then we will have another MRI to see if it's working on the remaining cancer masses that are still inside. If it is working we may do another month, or we may go straight into the BMT. If it is not working, we aren't sure what else we can try.

The latest (July 12, 6 a.m.): Dylan started on the Erbitux antibody therapy yesterday. He had no side-effects. The treatment is outpatient, so he came home after they watched him for two hours to make sure he was doing alright. He slept through the night, and came in early this morning to ask us to throw him a party for all the surgeries he has survived! The kid is definitely back to normal!

The latest (July 11, 12 p.m.): Dylan is not starting the Erbitux therapy today. There was a scheduling snafu at the hospital. We are supposedly starting tomorrow. I'll update again on Friday if he does it, otherwise on Monday.

The latest (July 9, 6 a.m.): .We had a good weekend house-sitting, and Jana enjoyed her trip to Nashville. Dylan is almost fully recovered from his brain surgery and his hair is growing in to cover the scar on the right side. He has been vomiting occasionally, but it may just be that his stomach is still recovering from the trauma. Otherwise, he went to camp all day for three straight days last week and is sleeping through the night again. He starts the antibody treatment (info below) on Wednesday.

The latest (July 2, 6 a.m.): .We met with Dylan's oncologist Friday to discuss next steps. There is indeed live tumor in his head and some was left behind, although we can hopefully say Dylan is back in "minimal" disease state, which is a requirement for the bone marrow transplant procedure. 
However, we are first going to try the antibody therapy as it is still a promising approach (Dylan would only be the second kid with a solid tumor to try it). The antibody drug is called Erbitux, and he would get it via IV, outpatient, every two weeks starting next Wednesday. No major side effects are expected (mostly headaches, nausea, possible spinal pain). If there are no side effects, the concern is that the antibody is not killing the cancer cells, which would cause the inflammation that causes the side effects. So, in a weird way, we actually hope he has some issues, but not so much as to interfere with his summer. 
The medical mechanism of the antibody is called "antibody-dependent cell-mediated cytoxicity," or ADCC, which attaches antibodies to fighter cells created by the bone marrow that help block the growth hormone that allows cancer cells to grow, called the EGF recptor.
Depending on how he does on the Erbitux, they may have us administer GM-CSF at home via subcutaneous shots, which will stimulate his marrow to increase production of "monocytes" that help target the cancer cells.
Dylan regained strength through the week, going to his favorite sports camp every day for longer and longer. He is still napping during the day, but for shorter and shorter amounts of time. He should be back to normal soon. He has already regained his ornery spirit, fighting with Chandler as I write this.... :)
We had a nice weekend, with our friend and former cooking coach, Stacy, spending the night last night on her way through L.A. on a visit. We cooked with her for old times' sake (Cauliflower crust pizza), but she flies back to Utah, and we miss her so much, we don't want her to leave! We are housesitting for a friend this week and weekend, but Jana flies home alone Thursday through Sunday for her nephew's wedding in Nashville, so it's going to be "guy's time" this weekend at our summer vacation abode!

The latest (June 27, 8 a.m.): Dylan is getting stronger every day. His headaches are practically gone (he had a brief one yesterday morning). He can walk and run sturdily now. He did have a nightmare last night, but is otherwise sleeping soundly.His remaining issues are still having trouble finding words, although this aphasia has gotten a lot better. He seems to have a problem with his left jaw near the cheekbone. We're seeing the oncologist Friday and the neurosurgeon Monday, so I'll update again after those visits.
Providentially, Dylan's favorite summer activity, Coach Steve's sports camp, literally across the street from our apartment, started Monday. We walked Dylan over and asked if he could just watch and maybe kick a ball around. He lasted for a half hour, then came home and rested, then rallied and went back for another half hour, then rested again, then went back for pizza at lunch and stayed for another hour. Then, yesterday, he went for the whole morning, came home for an hour, then went back for the rest of the day. We are hoping he can make it through the whole day by the end of the week.
Chandler started one camp, a musical theater program at school where they are putting on Les Mis, one of his favorites (which we are going to see in San Francisco in August).
We are all excited to have our old pal, Stacy, staying with us Sunday night on her way through L.A. She came by for a half hour to see Dylan at camp and introduce us to her two nieces. We are dreaming up what we want to cook with her on Sunday. 

The latest (June 25, 6 a.m.): We had a fun weekend, with Dylan improving day by day. He only has fatigue now and his aphasia has improved, but is still causing him problems expressing himself. His headaches are mild now, and he refuses Tylenol, not needing it. His teacher came by for a visit and to play a few games, and he went to a friends house to play with her kitten. We all attended a birthday party on Saturday and then Chandler had two other parties to attend and he also had a sleepover.
Much of Dylan's irritability appears to be gone: things that used to bother him no longer do (like Chandler's loud singing in the house) and he often sits serenely, like a little Buddha, watching us all with a little bemusement. 

The latest (June 22, 9 a.m.): I forgot to mention earlier this morning that we got some preliminary results from the biopsy of the tumor. There was live tumor in there, so we know for sure it was not all dead. We also do not know how much of it was alive, and how much live tissue is still inside. We meet with our oncologist on June 29 to discuss the final results and our next steps of treatment.

The latest (June 22, 6 a.m.): Dylan was awake for most of the day yesterday and slept through the night. He still has a constant headache that is worse when he is vertical and he still is having problems communicating. And I don't believe I mentioned his left eye is turned inward (because they had to remove it for the surgery to access part of his brain), so he is also having trouble reading and seeing. His balance is back to normal and he even ran down the sidewalk for a half a block yesterday. 
He is constantly craving entertainment, but can't focus for long because of the headaches. Dylan had a friend come over to play with him and he tried, but it only lasted a half hour or so. Later, he asked me, Jana and Chandler to put on a circus for him, which he loved. I juggled, Chandler did his diabolo and Jana did silly things while we all wore bright red or rainbow wigs. I'm so sad we don't have a picture of it! Dylan had been given money by his aunt Linda, to take the family out to dinner before the surgery, but the timing didn't work out, so Dylan asked if he could treat us to dinner last night, which we did. He did alright through the meal, but we had to leave before dessert since his head was hurting too much. His attitude seems more positive. He is laughing and smiling a little more.
If you've read this blog for any length of time, you know I try to include Chandler with these updates. He has been an awesome help with Dylan and around the house and it has been a little like a family vacation with us all around the house for most of the day. He has some movies and parties this weekend and starts his theater camp next week. He got all honors in school this year and his teachers all wrote glowing reviews. I'm so glad he is in a place where he can be himself to the fullest.

The latest (June 21, 6 a.m.): Dylan had a long nap after we got home from the hospital. He did a lot of walking there, and we bought him a huge wrought iron dragon from the gift store, for being so brave. At first last night, he seemed even worse, but that must have been because he was drowsy, because things seemed to get better as the evening progressed. He slept through the night and did not get sick, which was a huge relief. But he did talk in his sleep all night, practicing words, which kept Jana up because she loved listening to his cute little voice. :)

The latest (June 20, 6 a.m.): Dylan made some advances yesterday, working hard to get better, but still despairing of how hard it is, and was shocked when he saw himself in the bathroom mirror. I had to keep telling him it will get better. Again, Jana was up most of the night last night with him, but this time he was vomiting all night. He was ravenously hungry at times, and may have had too much for his stomach which has been practically empty for a week. We see the neurosurgeon this morning for a post-op visit and will ask him about the issues Dylan has been facing. I'll update again in the afternoon. NOTE (2 p.m.): Dylan's neurologist said Dylan's swelling and stitches look good, and suspected a problem with the shunt in his head, which has to be reprogrammed after every MRI. The last MRI, the neurologist had trouble resetting the shunt (it is done with a magnet), and so they checked it today and it was indeed off, in the direction of overdraining his cerebral-spinal fluid. They reset it and said this should help stop the headaches and vomiting. The doctor also said the aphasia should get better with time, but it's hard to say for sure. We need to keep an eye on him for the next couple of days....

The latest (June 19, 7 a.m.): Dylan did better yesterday: he ate a lot, was awake for longer periods, asked for playdates, and even watched a few television shows. He also had his first visitors: TJ from school, who brought a gift and get well cards from school, and Abby, who has been friends with Chandler since they both were little. A friend of one of Dylan's karate instructors also sent TONS of toys for him to play with while recovering.
Psychologically, he is down and keeps saying he "can't do this." I reassured him that all the things he is suffering will get better, and it's not like when he had the stroke. He is very scared, he says, "of everything." It breaks my heart to see him like this and hear him say such things.
Unfortunately, Jana was up for much of the night with Dylan, who said he needed to pee, but couldn't and still can't. She called the doctor on-call, and he said it might be a urinary infection. They first suggested bringing him out to the E.R. at Children's Hospital, but they said she could also just bring him to the pediatrician, which is what she plans if he is still having trouble when he wakes up. More later....  [Note: Dylan got up and peed at 8:30, ate some coffee cake, drank some water, watched a show on TV and fell back asleep.]

The latest (June 18, 8 a.m.): Dylan has been sleeping almost continually since he came home, which is to be expected. He has been improving every day as far as the pain, swelling and bruising go. He is still having trouble with language, and finding the right word (see below). He is eating more and more, and can focus for a little while on television, but can't get past a few minutes without needing to turn it off, even his favorite show, Ben 10. The main concern now is his balance, which is still very wobbly. We don't want him to fall and hit his head.
Dylan will miss the end-of-school year party today, but there is another chance to see his classmates tomorrow before summer. He finishes taking the steroids that have been upsetting his stomach (even with Zantac and Zofran), so that should help him eat and drink more, which will help him heal faster. I am exhausted, having voluntarily taken the night shift three nights in a row, which included the tough task of getting him to take food with his meds at 3 in the morning. Ouch!
We have a post-op meeting Wednesday and should hopefully get biopsy results and next steps on treatment this week some time....

The latest (June 17, 6 a.m.): Dylan recovered so quickly from his brain surgery that they let him come home yesterday afternoon! We were so glad to be home for the weekend, and for Father's Day, although he spent the rest of the day sleeping and whimpering, seemingly sensitive to light and noise, though he said he was not in pain. I hope he gets back to his old self soon. He will also be glad to join his classmates for the end of year festivities next week.
He has a long scar curving around the left side of his head which is bugging him and painful to the touch. He also has moderate swelling on the left side, which is forcing his left eye closed, and has given him a black eye on that side. He was on morphine at first, but only on Tylenol now (along with a steroid to reduce the swelling); but he is still a bit down and nauseated from the surgery and drugs, but you can tell he is glad to be home. 
We have also noticed that he is having trouble recalling words while talking and sometimes comes up with a muddle of words. This may be because of the surgery or maybe because of the heavy drugs, or perhaps both. One of the neurosurgeons said this would get better, as the drugs and surgery insult wear off, and as his synapses rebuild. Right now, it is as if he has aphasia, which Jana has a mild case of after suffering a head injury in a car wreck and a subsequent week-long coma in high school, in which the sufferer cannot find the word they are trying to think of and either substitutes another word or uses other words to describe the thing he's after.
We have a post-op meeting Wednesday, and should also learn the biopsy results and the next steps from our oncologist during the week. I'll update again when we have more information.
We're all exhausted, and we're deeply grateful for some of Chandler's Crossroads schoolmates, who have been bringing us dinners so Jana doesn't have to worry about what to cook.
Although Dylan does not need blood donations, I was reminded of how important it is to donate. If you are in L.A. and wish to donate to Children's Hospital, please visit this page: Otherwise, you can look up a donation center here: 

The latest (June 16, 2 p.m.): Dylan is home! I'll update the blog in the a.m. 

The latest (June 15, 7 a.m.): Dylan's brain surgery went well, according to plan. The neurosurgeon said that the tumor was easily delineated against the healthy brain tissue, and that he did not see rampant disease when he was in there. He said he was able to get one lesion out entirely, which was the size of a golf ball, but that the second large one was harder to reach and near a sensitive area of the brain, so some was likely left inside, although it is not certain if what was left is still alive. 
Most of the stuff looked like medulloblastoma (rather than a new, mutated type of cancer), and most of it appeared to be "necrotic," or, dead. We won't know for sure for a week or so, while we wait for the results of the biopsy. The surgeon said Dylan should feel better once he has healed from the surgery, because there will be less pressure in his head. We hope this means he will be less irritable and tired.
Dylan drowsed most of the day, waking briefly to say hi to a friend who he met at the Ronald McDonald House in Boston who was passing through LA on the way back to his home in Peru. Dylan's friend gave him a handball, in memory of all the ballgames they played in Boston last year. Jana spent the night with him last night; tonight's my turn. It helps that we got the "Presidential Suite" on the floor, which is also in the newly built hospital building, so everything is new and clean, and all rooms are single, not shared.
Chandler spent the night before and the entire day with a friend and is busy with other friends today at a pool party and a Dodger game tonight.
Dylan is doing OK, but he really wants to come home. We hope he can be home for Father's Day. He has a post-op MRI tonight and the nurses say he might be able to come home tomorrow!

The latest (June 11, 7 a.m.): Dylan's brain surgery is this Thursday. I will update again on Friday.
We had a fun weekend, hanging with friends at the beach and being treated to brunch with another family on Sunday (including a brief circus performance by the kids of their self-titled "Cirque du So Lame"). 
Chandler, who finished school, had yet another bat-mitzvah to attend and he joined some friends at the Santa Monica Pier for the first summer blast. The big moment from the week was attending a Rotary luncheon where Chandler was awarded a scholarship for being a good citizen at his school (the only one from his school so honored!). I was so proud.
I was impressed by a French film, Declaration of War, which just came out on DVD, in depicting the suffering of a young couple whose son has a brain tumor. The rollercoaster of emotions is beautifully portrayed. It is hard to watch (the boy does not die, though), but gives you a taste of what we have been through these past five years. More info:

The latest (June 5, 6 a.m.): We met with the neurosurgeon to schedule Dylan's biopsy. He said they would try to remove any tumor while they are in there if they see any, so this is not just a biopsy, but a possible resection as well. The surgery is on Thursday, June 14 at 11 a.m. The surgery should last 4-6 hours and he should be in the hospital for a couple of days to recover. We don't expect any serious complications, but we are concerned nevertheless. We also aren't sure when we'll have results of the biopsy.

The latest (June 4, 6 a.m.): We meet with the neurosurgeon at Children's Hospital this afternoon to discuss and schedule the biopsy to determine what is growing in Dylan's head, or if it is just scar tissue. Dylan's had a cold all weekend, but will hopefully be over it by the surgery (since he will need sedation). We aren't sure how easy it is to schedule the surgeries, but we have been led to believe the surgery itself will be relatively easy, as far as brain surgeries go. We have never met this surgeon as all previous surgeries have been at Cedars Sinai. More info to come after our meeting....
If you didn't see it yet, here is Chandler's latest smash-hit performance, this time of the Jackson Five song "I Want You Back," only on Facebook:

The latest (May 30, 8 a.m.): Dylan's last-but-definitely-not-least birthday party was last night at his karate dojo, hosted by some of his group class' moms. There is one boy in particular that Dylan has taken under his wing: he even gave his little protege his birthday patch to put on his karate gi -- Dylan's gi is already full of patches! They had a Ben10 theme to the party, knowing how much Dylan loves it, including a Ben10 pinata! We are so grateful; Dylan was still beaming from the party this morning.

The latest (May 29, 6 a.m.): Dylan had a great birthday weekend (and it's not over yet -- he has one more party tonight at his karate dojo!). 
We have not heard about the next steps in his cancer battle, which would be the biopsy of whatever it is that's growing. Our hope is that it's just scar tissue and that we can move forward with treatment. Hopefully we will hear today.
I was profiled for a new site called Disney Dads, run by the Disney company to help dads be better dads. Check out the rest of the site, you dads out there! Here is my interview:

The latest (May 24, 3 p.m.): Dylan had his PET scan today and it showed entirely dark, which means there's no live tumor in there, so, since they don't know what is growing in there, they have to perform a biopsy. They can't prescribe an action, be it antibody or bone marrow transplant (or something else), without knowing more. Hopefully it is just scar tissue, and then we can proceed with treatment as planned. We will meet with the neurosurgeon next week to schedule the brain surgery. Our oncologist feels it will be a very easy procedure. We reassured Dylan that he would not need to learn how to walk and talk and eat again, that this would be an easy operation for which he would be unconscious. Stay tuned for more information....

The latest (May 21, 7 a.m.): Dylan's birthday is Saturday, He had a whiffle ball party (the first of many parties), but spinal headaches kept him on his back for the first part of the party. He rallied later, once the Advil had kicked in and was able to enjoy his friends playing indoor games. We may reschedule the whiffle ball game. 
The doctor wrote to say that the spinal fluid was clear; no tumor cells were detected. We haven't heard on his PET scan scheduling yet. Hopefully we will hear this week.
Dylan also had a sleepover Saturday night (as did Chandler, though his was away), and we celebrated Dylan's birthday yesterday after church with donuts and Sprite Zero. He also has another birthday party this week at school, one next week at his dojo with his karate class, and a dinner and moviegoing venture planned for his actual birthday.
Speaking of movies, a huge thank you to all of you who purchased DVDs from Dylan's list. Although the BMT procedure is on hold, we still may be going through it, in which case they will definitely be used. And we don't know what his reaction to this new antibody drug will be, he may be laid out in the living room all summer, in which case having those movies will be a huge blessing. 

The latest (May 16, 1 p.m.): We met with Dylan's oncologist this morning, after Dylan had a lumbar puncture (spinal tap) to pull some cerebral-spinal fluid out to check for cancer cells (no results yet). The doctor had wanted more time with us to show us the scans, but he only had a few minutes to catch me up on what he had discussed with Jana after the MRI on Monday.
The doctor will check the spinal fluid for suspect cells, and has ordered a PET scan to see if the new areas on the MRI show any signs of life. If both show negative, we still need to determine what is growing in there, so a biopsy might be required, but we really hope to avoid that step.
The tumors have definitely grown, in a couple of areas, and only in his brain (his spine is clean, thankfully). Given this development, the bone marrow transplant is on hold until we can see if an alternative treatment is effective. 
The new treatment is an antibody, which we tried before, but this is a different kind, with a different kind of mechanism (called ADCC), designed, in effect to latch on to cancer cells and help turn on the body's immunity to fight against them. The drug has been in use for decades with other kinds of cancer but has only been tried on one other pediatric medulloblastoma patient, and he has been in remission for ten months, so we have high hopes. The drug is called Erbitux, more info here:
The Erbitux is not given in his shunt, "intrathecally," as it was with the antibody treatment in New York, but intravenously which means more side effects. Side effects mean the drug is working, but can also mean seizures and other meningitis-type issues that result from the swelling putting pressure on the brain (skin rash, liver issues, general pain and headaches). Dylan is on anti-seizure medication and may need to be also put on steroids and painkillers, depending on how he handles it. 
The doctor wants to start Dylan on the Erbitux right away (likely next week), and said the treatment is outpatient, does not require us to travel (except to East Los Angeles to Children's Hospital), and only needs one shot once per week (unless we have to be admitted because of toxicity). We may still do the BMT, if the antibody is working and we can get Dylan's disease under control again, that would be one reason to do it. Then again, the oncologist said, we may find that the antibody is all we need. There's no telling. We won't know much more than that for a couple of months, after giving the antibody a chance to work.
Last, both the oncologist and the nurse case manager emphasized how special Dylan's case is: At this point children with his disease are either cured or dead, and most definitely not in as great shape as Dylan. This is uncharted territory for all of us. And they understand how this must be so confusing for and hard on us all. Not only have we been on an emotional roller coaster of remissions, relapses, and potential new cures for half a decade, but now to have the whole BMT procedure rug pulled out from under us is almost too much to bear. 
I'll update again once we have the results of the spinal fluid....

The latest (May 15, 3 p.m.): Dylan's oncologist just called to say that Dylan's tumors show some kind of ghostly growth on the scans. This is serious cause for concern, since to go into the bone marrow transplant procedure, the requirements are that the tumors be responding to chemo and that they are in minimal disease state, which no longer holds, he fears.
We are going in tomorrow after all, but instead of taking Dylan's marrow tomorrow, they are going to take a spinal tap sample. We are also setting up another PET scan, which will tell us if that is indeed live tumors. They have not cancelled the BMT procedure, but it is all on hold now until we know more. We are also keeping Dylan's birthday parties for this weekend, when we would have had them anyway, and Dylan will be home for his birthday, which is good, although he was disappointed, having gotten all ready in his mind for the whole procedure.
There is one promising antibody procedure that we may be able to try instead that is showing results with some other kids. We are meeting with the doctor tomorrow to discuss this and see when the PET scan is scheduled for. Stay tuned for more information as our future seems to be changing every day!

The latest (May 14, 6 a.m.): Dylan's latest MRI is today (he also has a CT scan). This is to set a baseline before the bone marrow transplant (BMT) procedure. He also gets his bone marrow sampled on Wednesday.
We have the start date for Dylan's BMT procedure: Friday, May 25 (technially, the 24th, when he will have a "double lumen" put into his chest, since his port is not enough for all the chemo they are going to give him. The procedure lasts at least six weeks, with six months of quarantine after that, so we will need much help (blood and platelet donations, meals, rides for Chandler, gas cards, etc.). I will post needs as we have them.
Dylan's birthday is May 26 so, unfortunately, he will be in the hospital when he hits double digits. That won't stop us from celebrating, though. He wants to have a few different parties: a karate party, a movie party, a family party, all before he goes into the BMT procedure, so we are trying to set those all up.
I was out of town last week at a conference for children's ministry (I volunteer at our church, writing Bible stories at the kids' level of development, without talking down to them, while putting the stories in historical and cultural context). I was so glad to get back home, though. Dylan is cramming in playdates and sleepovers, knowing he has precious little time left before the BMT and quarantine. Chandler, although he has met his minimum of community service hours required by school, has continued to go out there and help the world be a better place. This weekend, he took care of some rescue kittens with some classmates.
While I was out of town, I missed a lot:  Chandler sang backup for singer/songwriter Linda Perry on "The Talk." The song is called "Letter to God," haunting and powerful. Here is a link to watch it: They had a "circus" at school, where he did a juggling routine with a couple of classmates using the diabolo. He also had his last track meet and their track end of year party, as well as a BBQ for the up-and-coming 7th graders at school.  Dylan went to a family festival for his former school at one of his favorite places, The Santa Monica Pier, rode nearly all the rides, and came home with a Domo toy dressed up as Superman: perfect for him.
Saturday, Dylan had a sleepover, Chandler had a B'nai Mitzvah, and Jana and I attended a carnevale-themed fundraiser for Chandler's school. 
Jana is such a great mom, so we wanted to be sure she knew that yesterday. We celebrated Mother's Day by eating out and not letting her cook, playing sports at the park, stocking up the fridge for her and working on a science project for Chandler that turned out to be fun to make. We couldn't have packed more fun into the weekend if we had tried!

The latest (May 4, 9 a.m.): No news on the start date as of yet. Dylan is back at the hospital this morning to do all the same tests he did all over again. The first time it was to get insurance's approval. This time it's to set a baseline for the test, which has to be done within 30 days of admission. The insurance approval took so long to get, that it is forcing Dylan (and Jana) to have to go through it all over again. Today's tests are relatively quick and painless: EKG/Echo and pulmonary (breathing/lung function). 
Chandler is now working on three more TV shoots with the children's choir group. More about them here: 
We had to scramble to get him a work permit and a "Coogan account." Big-time stuff!

The latest (April 27, 9 a.m.): We have been given a tentative start date of May 24 or 25, although we are asking them to push that so Dylan can be out on his birthday (the 26th). Dylan will need to repeat all the tests he did to qualify, now to serve as a baseline since the tests need to be within the 30-day window of admission. The donor, who is in Germany, does not need to travel here, but is not able to donate until June 6, so the rest of the dates depend on that one. That is all we know right now. Hopefully we'll get more solid dates next week....

Yesterday Chandler spent the day downtown filming his first commercial -- he had a great time, but was tired after standing and singing all day. It was a foreign commercial for a company called Tele2, a major European telecom, that has humorous commercials with a talking black sheep, Frank, a la the Aflac duck(view some of them here and here). This commercial uses Josh Groban's song "You Raise Me Up" and is set in a church with a children's choir in robes (nothing new to Chandler, who has been singing in our church for years). Jana reported a fact error, that Groban himself was going to be in the commercial, but it's just his song. Chandler was fascinated by the whole experience, although he said his eyes were blurry this morning after all the smoke machines.

The latest (April 23, 7 a.m.): We still don't have any new information on the start of the bone marrow procedure. We hope to hear more info this week.

Dylan had an ophthalmology appointment Wednesday. He has refused to wear his glasses since he got them a couple of years ago (he suffers from "sixth nerve palsy" after the brain surgery, so his eyes do not work together). He and Jana have gone round and round about wearing his glasses while reading and writing. He has claimed all along that they don't help. Well, it turns out he was right! The ophthalmologist said he doesn't need glasses. He will even be able to drive a car, she said!

We are sad that our friend Brant is leaving town soon. He had taken over as cooking coach for the boys. He'll be gone for a couple of months, but that also should coincide with the time Dylan will be in the hospital for his bone marrow transplant.

The latest (April 9, 7 a.m.): We got good news from our bone marrow coordinator on Friday, that insurance had approved the procedure. We are so relieved. We don't know a  start day yet, so we are still playing the waiting game, but this is a major hurdle past.

The boys had a fun Easter, with lots of candy, a smashingly fun Easter egg hunt party, and a successful lemonade/cookie sale yesterday for Children's Hospital (Dylan's idea).

The latest (April 2, 8 a.m.): I raised about $2,000 for the Pediatric Brain Tumor Foundation ($1,700+ on the chipin link, and a few other folks donated directly to the PBTF). Thanks to all who donated.

We aren't sure, but we think the bone marrow request was submitted to insurance last Friday. The people at the hospital are certain that the request will be declined and then they start a back-and-forth with our oncologist. Hopefully this part of the process will be quick. Dylan cannot wait very long as the oral chemo he has been taking has a high risk of developing leukemia or other cancers that would exponentially decrease his chances of survival.

The latest (March 19, 10 a.m.): I ran and completed the Los Angeles marathon yesterday. I ran in Dylan's honor to raise funds for kids' cancer research. To donate to my cause, click this chipin link, which will be up until Sunday, in case you were waiting to see if I could do it before donating:
I felt good the whole time, and I finished in 5 hours, 22 minutes, which is a respectable time for a first marathon. I had hoped to do it faster, but developed a blister at about mile 16 that slowed me down. The best part was getting hugs from my family at mile 22 -- that helped me make it the rest of the way. See the photo to the right of my hug from Dylan. I had a lot of supporters in that part of town, which helped me get through "the wall" and finish strong, with a smile, while others were clearly suffering.

I feel pretty good today; a little sore, but I am able to get around. Thanks to everyone who supported me through the training and during the race! Not sure if I will run them, but I have already signed up for San Diego in June and Honolulu in December!

Chandler left this morning for four days with his class at school on a camping trip to Joshua Tree. We will miss him, but we know this will be a great experience for him, creating lots of great memories!

Jana took Dylan out to Children's Hospital today for some more tests that need to be done to get insurance coverage of the upcoming bone marrow transplant procedure. We still have not been able to get the ophthalmology appointment scheduled, and she is hoping she can just slip him in since they will be there anyway. That will be the last of the tests we need to run, and then it will be the waiting game again while the donor in Germany goes through tests of his own to ensure he is healthy enough to donate, and won't give Dylan any diseases.

The latest (March 12, 5 a.m.): After the MRI, we brought Dylan's class pet, a tortoise named Laser Bubbles, home for the weekend. Dylan took extra special care of her (yes, Laser Bubbles is a female), and had his friend Sean over to show her off.  Dylan was so gentle and loving toward her; he has learned a lot about caring for people during his cancer journey. Laser Bubbles loves kale even more than I do, and runs a little faster than me, too! (Slow and steady wins the race, as they say.) Dylan asked Jana, "What are tortoises for, anyway? Just to fascinate people?"
On that topic, I am running the Los Angeles marathon this Sunday. Wish me luck! I am running in Dylan's honor to raise funds for kids' cancer research. To donate to my cause, click this chipin link: Los Angeles residents come out and cheer for me: I'll be wearing a blue T-shirt with Team SuperDylan on it and a SD logo that looks like the Superman logo, and bib #4156.
I was honored to see that Dr. Timothy Noakes, who wrote the runner's bible, the 1000-page Lore of Running, is linking to my Brentwood Diet page in a letter to a colleague. He had previously espoused the carbo-loading, pre-race meals, but has recently converted to a low-carb diet (he lost his father and brother to diabetes), has lost weight, and is feeling better than ever. I wrote him to share my own experience and ask his advice on carbo-loading, and eating carbs during a run, which he said is not necessary, at least not up to 13-15 miles. He wrote me back an encouraging and informative email, and is now referencing my diet page to offer people motivation and inspiration! Having had trouble keeping my weight off following the usual dietary plans, I have used his advice to get that back under control just in time to run the marathon. I have had some twinges of sciatic pain from all the pounding, and am hoping I don't feel them during the marathon now that I am a little lighter than a few weeks ago. You can read Dr. Noakes' letter here.
Both boys had sleepovers with friends this weekend, and both also went with friends to the Santa Monica Pier. It was one of the best weekends of the year for the David boys!
This Thursday is my last day at Participant Media/ I will miss the friends I made there, and the opportunity to work more closely to what I believed was my calling when I came to L.A. for film school so long ago. Alas, they could not find a good fit for me in a permanent position, and I need to take that as an indicator that I should focus on directly supporting my family with my presence, now that they need me more than ever with Dylan's bone marrow procedure starting in a few weeks (their estimate, though we do not have a set date of admission yet).
I also hope to use any spare time to work on writing our story up in book form, taking it much deeper than this blog can. I have been looking at self-publishing options, since that is becoming increasingly popular; I know how hard it is for a first-time author to get published using the old-fashioned methods.

The latest (March 9, 5 p.m.): Dylan's MRI results were stable, which is good news! The doctor we met with thinks the tumors may have grown slightly, but it also may just be a technical glitch because Dylan moved slightly during the "slice" in question, throwing off the reading. The basic point is that he is still in "minimal disease" and thus eligible for the bone marrow transplant, and his tumors have not grown dramatically, as has happened before with other treatments -- and as the doctors have seen before with a resistance to the oral chemo etoposide that he is currently taking. We will start back on the etoposide on Monday. Dylan has one more test, in ophthalmology, which we hope will be scheduled for next week. After that, we wait for the word from insurance to approve the bone marrow transplant procedure, and then we need the donor in Germany to pass his own tests to be able to donate his marrow. Stay tuned, friends and family, for more news in the coming weeks. And thank you from all of us for your spiritual and moral support!

The latest (March 8, 3 p.m.): Jana just called me to say the MRI scheduling head called, and she got us an MRI slot tomorrow (Friday, March 9) at 12:30 p.m. The scheduler knows us, and kept her eyes peeled for any cancellations. It doesn't hurt that Jana is so friendly when so many parents are stressed and all-too-eager to show their aggravation and frustration with hospital logistics (including myself!).
We appreciate your continued prayers/thoughts/energy for good results. Even though this scan is for insurance purposes (more info is in the below update from this morning), we haven't had an MRI in a while, and we are hoping it shows the tumors have continued to shrink or are stable. We hope to have results around 4 p.m. and a meeting with Dr. Dhall (who knows our case: our oncologist, Dr. Finlay, is out of town), primarily to determine if we should keep Dylan on the oral etoposide he has been successfully taking for half a year.

The latest (March 8, 6 a.m.): Jana, Dylan and I spent the day yesterday at Children's Hospital getting many tests done. It went well, all things considered. Although I previously wrote these tests were to establish a baseline for the bone marrow procedure, I learned that actually they're just to get our insurance company to approve the procedure in the first place. We may need to repeat many, if not all, of the tests, as they are supposed to be run within 30 days of the admission to serve as a baseline. We did learn that Dylan's hearing has improved a bit since he was tested four years ago. Dylan also saw our oncologist, Dr. Finlay, to talk to him about these burning sensations he has been feeling. The doctor does not think it is tumor-related since that would manifest only on one side of the body or another, but rather thinks it is probably related to a medication he is taking (either the oral etoposide chemo, which he has been on for six months, or the anti-seizure meds he has been taking for more than a year, cumulatively affecting him).
The MRI scan was not yesterday, though, as they could not schedule one until a full month from now. We went by the MRI scheduling department and convinced them to move it up to March 17. Dylan also did not get his eyes tested by the ophthalmology department, but this is a very tiring test for him since he has strabismus (his eyes do not work well together) as a result of a stroke he had during his brain surgery in 2007. This will hopefully be scheduled for next week, although their scheduling is just as difficult as the MRI was. We have a case manager working on this for us, thankfully.
Chandler had his first track meet yesterday and we arrived just in time to watch him run the 200. I was SO proud of him. We are so glad to see him enjoying track, as he did swimming, as it will hopefully lead to a life of active athleticism for him. Having just discovered a love for running myself of late, and been an avid biker for most of my life, and also since he and I both struggle with food/weight issues, I am glad of this development. I only wish I had found a love for movement as early in my life as he has. He has also been taking an intensive four-hour-per-week dance class (jazz, tap and ballet), along with his regular piano lessons. I am amazed at his dedication to self-growth.
My dad came to L.A. this week for a convention downtown, and so we met him Tuesday night at the Stinking Rose, a family-favorite, garlic-in-everything (even the ice cream!) restaurant halfway between our home and his hotel. The boys love garlic almost as much as my dad, so we all had a great time.

The latest (March 5, 5 a.m.): The bone marrow team called last week to schedule a whole battery of organ tests (MRI, CT scan, blood work, hearing tests, ophthalmology assessments, pulmonary function tests, echocardiogram, EKG, and dental X-rays -- plus testing his patience to go through all of this) for Dylan, to set a baseline for the procedure. Those are all happening this Wednesday, which means a whole day at the hospital for us. We have not heard anything more about the donor, our insurance coverage, or a start date. 
He has complained the last couple of days of feeling weirds and having burning sensations in his feet last night, and this morning all over, inside his body. He is not running a fever. Of course, any little thing raises fears that his tumors have grown resistant to the oral etoposide chemo he is taking and have started growing again. The MRI on Wednesday should hopefully allay our fears.
People at Chandler's school, Crossroads, have been reaching out to us in support after a mom emailed the 6th grade on our behalf. Crossroads also has a Good Neighbor Committee that will reach out to the whole school for greater needs like blood and platelet donations, gas cards, meals, etc. We are waiting for the start date to take that step. 
Dylan's school community is also becoming aware of the procedure. Dylan's class has a tortoise, named Laser Bubbles by the students, that you can bring home for the weekend as a pet, and so, when Jana asked for it soon -- because we may not have many weekends left before the procedure -- the kids started to ask what a bone marrow transplant is. Dylan's teacher tried to explain, and Dylan himself told the class he might die. He was mystified that the kids said nothing, but Jana explained to him later how kids his age aren't prepared for a peer to be facing such a serious consequence of a hospital procedure.
The boys made anise/honey/almond ice cream with Brant, our new CoachArt coach and friend of Stacy's (who moved to Utah, sniff, sniff). I didn't eat any since I'm in training (see below), but reportedly it was delicious. We did Facetime with Stacy to say hi, and make plans to maybe visit her in Utah in a couple of weeks, if we haven't started the transplant by then.
Chandler and I saw Spamalot at Pantages on Saturday. It was great fun. He has seen Monty Python and the Holy Grail, so he really enjoyed seeing it in musical format. Meanwhile, Dylan and his friend, Sean, played all day, including putting on a touching finger-puppet show they gave little kids at the local park.
Yesterday, we had brunch with my second cousin, Brian, who is a guitarist and singer/songwriter. We went to Souplantation, the boys' favorite, which we call "Supercelebration" after my mom called it that: one of her classic Mrs. Malapropisms. You can hear some of Brian's music here: Dylan went to a videogame birthday party yesterday also. 

The latest (February 16, 7 a.m.): We met with the bone marrow team yesterday for the second meeting. This meeting was to go over any remaining questions we may have, and to sign the consent forms to begin the process. We learned that the donor who is a match lives in Germany, which is why things are taking a little bit longer than we had hoped. He has given a blood sample for them to ensure that he will be a 9 out of 10 match for Dylan. They do not go below 9 out of 10 because of the graft/host problems. Dylan did not have a 10/10 match in the database of about 13 million people. They warned us again that the procedure alone could kill him.
Our main question was: when do we get started? Although we will get a solid date in a couple of weeks, they were not able to give us one, other than to say they usually get started within an average of six weeks. They have to get the donor to pass a physical (there is one backup donor in case he does not); and they have to also get our insurance to approve the procedure (they likely will not, since it's experimental; so then a lot of back-and-forth happens, until the insurance company finally relents); and finally, they have to coordinate when an open room will be available in the bone marrow transplant wing. Since the procedure lasts for six weeks in the hospital, the best timing would be to start right after I run the marathon March 18 (so Dylan can be out of the hospital to cheer for me), and get him out of the hospital by the time his birthday in late May arrives. He would not be able to have a birthday party since he will still be in quarantine, but it would be nice to have him home for that day. We can have a birthday party for him before we start the procedure.
We signed all the paperwork (including Dylan, who must also give consent), and now have to play the waiting game again for more solid dates and info. We still can opt out of doing it, up until the last minute, but now things seem a little more certain. Even so, we are not sure about putting Dylan and all of us through it. We also met with a social worker who represents the family during medical meetings. She was glad to know we have such great support systems among our friends, church, school and online. If we do go into this ordeal, we will need to call upon as many of you as are able to help us for support.
The bone marrow unit is in the new hospital building that just recently opened. However, they do not have showers for parents nearby or a functional laundry facility for parents in the building. We went next door to the Ronald McDonald House for a tour, to see if we want to stay there for some nights instead of in the room (or at least keep the RM house as a second home-base).
Dylan has grown increasingly irritable and hostile, with outbursts of rage over the most minor of insults occurring hourly, it seems. I can only imagine it's either a cumulative side effect of the chemo he is taking, or it's just plain outrage at all that he has had to go through and all he has been robbed of, although he can't articulate it. It is wearing Jana down, though. We are hoping for a lightening of his mood, or strength for us parents, or both. Thank you.
The boys were happy to both have a sleepover last weekend. Neither has had one for a while. We were sad to have our last CoachArt cooking session on Valentine's Day. Our coach, Stacy, is moving to Utah this weekend. We will miss her, although she promises to come back to visit and cook with us; and her friend, Brant, who has cooked with us a few times, says he will get set up with CoachArt and take Stacy's place, although he says he will not cook as healthily as Stacy! But we are happy for Stacy and this latest new adventure she is embarking upon.

The latest (January 30, 7 a.m.): The bone marrow team at Children's Hospital called last week to say they have found a match for Dylan. The match is on 9 out of the 10 markers they use to type the marrow, so it's pretty close. Although we still aren't sure about doing the bone marrow transplant, at least it is an option. 
We are supposed to have a meeting with the team to discuss dates and the plan of treatment in more depth. We do know it's a brutal treatment, maybe the toughest of all he's had, and he'll be inpatient for at least six weeks, with Jana and me taking turns with him while the other is with Chandler. It is a very hard decision to make as a parent, and he has to offer informed consent as well. Stay tuned for more information….
Meanwhile, I am so proud of both my boys. This weekend Dylan earned his blue-with-green-stripe belt and Chandler played at his first piano recital. They both impressed me with their skill in both arts, both way beyond where I was in martial arts or piano at their age. 
Chandler's current play, "Romeo and Juliet, or The Old 'You-Know-I-Really-Love-You-But-My-Father-Really-Hates-You' Blues" starts this weekend at the Morgan-Wixson. Chandler plays Paris. You can get tickets here.

The latest (January 23, 7 a.m.): It's a sad day: a high school friend of Jana's buries her son today, who succumbed to the same brain tumors Dylan is fighting. Rest in peace, brave, young Clinton. You fought the good fight and are in a better place. We are sad not to be able to attend the funeral, since it is in Tennessee. Our hearts go out to mom, Kim, and the rest of the family. Of course, this also raises the dark specter of what our own future holds, and makes us value our time together that much more....

The latest (January 16, 6 p.m.): In keeping with our philosophy of creating great memories, and as a belated birthday present for Chandler, and an early one for me (mine is in early Feb), we took a vacation to Las Vegas to see the Cirque du Soleil show with all-Beatles music called LOVE. Chandler has inherited my Beatlemania and so I thought it was a great event to share with him. I was happy to see that Dylan also loved the show, both the acrobatics as well as the music. Jana and I did not know that he knows most of the lyrics from Come Together, probably from watching American Idol for a few years running now. 
It was an amazing trip, the second of ours that was our family only, and we got to experience the good (the glitz and fun things to do, like the indoor amusement park at Circus Circus), the bad (the outrageously overpriced everything) and the ugly (the seedy underbelly of "Sin City," including the ubiquitous naked women advertisements). We enjoyed many nice restaurants from Serendipity 3 to a buffet with every kind of cuisine imaginable, to ritzy Italian to classic New York deli. And we walked nearly everywhere, with SuperDylan being a trooper extraordinaire. Jana lost $5 playing slots and the boys decided that was more than enough, concerned she may form a gambling habit. The boys had some of their biggest fights, but also spent some great time in the hotel pool and goofing around with each other, and with me and Jana. It was a been-there, done-that, one-time trip and, now that we have seen LOVE, there's no compelling reason to go there again. 
We have another trip planned for Utah in February, and may also find time to get up to Yosemite during the boys' spring break. (All future plans are pending our finding a bone marrow donor and starting the transplant procedure, of course.)

The latest (January 12, 5 a.m.): Dylan's MRI results were "stable," according to our oncologist, which is not as good as when the tumors were shrinking, but at least they are not growing. We are awaiting his blood test results before we start him back on the oral etoposide pills that have been helping to shrink the tumors over the past months. His CSF flow study (more below) was inconclusive and they want to approach the same study again, but this time from the spine, which would be a similar procedure to a spinal tap, with the hope that they could administer the chemo from both the shunt in his head and directly into his spine, attacking any cancer cells from both directions. That spinal procedure has yet to be scheduled. Last, the bone marrow donor search continues, but we have been assured that it is not a concern that it is taking this long to find a match.
If you want to join the bone marrow registry (all you do at this point is swab your cheek), please do so here (register free with the promo code PIF070109). You do not have to be in Los Angeles to be eligible, nor do you have to come here to donate if you are a match; we can take a bone marrow donation from anywhere in the world:

The latest (January 9, 5 a.m.): CHANDLER TURNS 12 TODAY -- HAPPY BIRTHDAY, CHANDLER!!!!!!!!!!!! (that's 12 exclamation marks)
Dylan has two big tests at Children's Hospital this week. Today, he has a "CSF flow study," which will determine if his cerebral-spinal fluid is flowing well enough in his brain and down his spine so that the doctors can administer chemo through the shunt in his head instead of taking pills. This would cause fewer side effects and be more effective at fighting the cancer inside there. He had this kind of "intrathecal" treatment before, but the CSF was not flowing well enough for the medicine to get down into his spine. Our oncologist thinks it may have been blocked by tumors that are now shrinking or gone, so our hope is that it is flowing freely. We were supposed to have this test on Friday, but we had another snafu when they injected the radioactive material into Dylan's shunt in his head, but forgot to turn the shunt off, so the material all flowed down into his stomach to be passed out through the urine. This is what they do to determine if the shunt is working, but is NOT the test we ordered, to determine if the CSF is flowing. Luckily, Jana was on it like a mama bear protecting her cub from jackals, so she got back on the books for today and will be totally sure they do it right this time. If at first…
Wednesday is Dylan's next MRI. The past five have all been good new, because the oral etoposide chemo pills he has been taking have been working to shrink the tumors and even making some undetectable. However, this approach is not permanent, and so we are hoping the CSF/intrathecal approach can be alternated.
Still no word on the bone marrow search, which is a reprieve for us from having to make any major decisions, but also a concern since it is taking so long: we may have to face the bone marrow transplant with a less-than-deal match, which can cause serious, even lethal, side effects if the body decides to reject the donor's marrow as a foreign substance.
I ran my first half-marathon in Irvine on Saturday, finishing in 2 hours and 2 minutes: a solid time for a newbie, especially considering I had shin splints and a lingering chest cold. What's more, I weighed nearly 300 pounds a year ago and could not walk up a flight of stairs without being winded! More info on my running, and the cause I support, below. 
Dylan and Jana were there at the finish line to cheer for me, but Chandler couldn't be there, because he had a rehearsal for Romeo and Juliet (he's playing Paris). The show is Saturdays and Sundays at the Morgan-Wixson Theatre in Santa Monica. You can go ahead and buy tickets at this link:

The latest (January 2, 3 p.m. Central Time): We return to L.A. today, after spending the week in Birmingham with my family, and the star of the show was little Lucy, my six-month-old niece. Dylan was so sweet with her, patting her gently and telling her all about life; Chandler sang her songs, which brought her biggest smiles of the holiday season. We ate out a lot, saw movies, played lots of video games, and enjoyed our new presents, weirdest of which was a huge floating fish: a mylar balloon clownfish that you weigh down so it neither rises nor sinks and which has a fin attached that you navigate around the room with a remote control. More about this unique gift here:
We also had a blast New Year's Eve at a friend of Jana's home, where there were tons of kids and lots of food. Dylan started counting down the days until next year's New Year's Eve, because he said, "then you get to play fun games on the Wii and eat food all night long!"
Dylan has a CSF flow study this week, to determine if he can be administered a drug through his shunt in his head (intrathecally). Meds given this way have far fewer side effects than those given intravenously. He also has an MRI next Wednesday, the 11th, in the afternoon.
We are all returning home sick, having caught cold that's going around. My mom made a humorous reference to the film Contagion, which I was brought on board at Participant Media to work on. I am still working there on contract....
I have a half marathon on Saturday, wish me luck! I ran 12 miles, with plenty left in the tank, across hilly terrain in rural Tennessee, so the half in Irvine should be a piece of cake. :)  More about the Southern California Half Marathon here:
Last, and absolutely not least, Chandler's birthday is next Monday. He will be 12. Happy early birthday, Chandler!!!

The latest (December 26, 9 a.m. Central Time): We had a wonderful Christmas, starting last week in Nashville with Jana's family, and saw some great friends and their kids at Chuck E. Cheese, which we haven't been to in years. We included Chandler and Dylan for the first time in their traditional Dirty Santa (white elephant gift exchange) and the gift Chandler picked out to wrap -- a Justin Bieber toothbrush that plays two songs -- was the hit of the party (Chandler is decidedly not a Biebster, by the way: it was an ironic choice for him, but it turned out his cousin is a huge fan and snatched the toothbrush up with that peculiar mania such followers exhibit).
We drove down to Birmingham on Christmas Eve to be with my extended family, including the newest member, my niece Lucy, now six months old. Although Dylan is a fighter, he is extraordinarily gentle and sweet with Lucy. He spent hours trying to make her smile, patting her gently on the head. Chandler sang songs to her and made her smile from ear to ear. An although it was a little leaner than most years because of the economy and my being laid off, we all were still plenty satisfied with our gifts and grateful to have one more year with all our family members in good health. No word yet on the bone marrow donor search. I imagine the holidays slows the hunt down significantly.
If you want to join the bone marrow registry (all you do at this point is swab your cheek), please do so here (register free with the promo code PIF070109). You do not have to be in Los Angeles to be eligible, nor do you have to come here to donate if you are a match; we can take a bone marrow donation from anywhere in the world:
My running is going well. I had a taper week planned and had a 7-mile run last Saturday, but have a 12-miler coming up this Saturday (hoping for good weather here in the South; it has been raining and cold, mostly. Otherwise I may have to do all 12 at the Y on a treadmill.), and then my first ever half-marathon the following week back in California (more info here: We plan to spend the rest of our Birmingham stay seeing movies, shopping and relaxing. Then we'll head back up to Nashville near the end of the week to fly home and get back to normal. 

The latest (December 12, 5 a.m.): We met with Dylan's oncologist at Children's Hospital on Monday to discuss our concerns about the bone marrow transplant procedure. He understands our concern, and said he would be worried if we weren't concerned. Especially because Dylan is in such good health: why put him through something like that now? Only two other kids with Dylan's type of cancer have been given this treatment. One died from the toxicity of the treatment itself, the other sailed through the treatment alright, but apparently relapsed within a few months (spots on the scans are not growing, even off chemo, so they aren't sure what is happening). Of course, Dylan's outcome may be either of those, or a complete cure. No one can say, of course.
The the oral etoposide he is taking is not a permanent solution, because it can cause leukemia, and also because the type of cancer Dylan has is known for mutating a resistant strain, eventually. However, there is no rush to decide, because they have yet to find a donor; so we are off the hook for a while….
The only other approach we may be able to try is to give Dylan three drugs intrathecally (through the shunt in his head), which, since it's injected into the cerebral spinal fluid directly, does not cause the blood count side-effects that other methods do. The three drugs would be etoposide, thiotepa and topotecan. Long-time readers may recall how we tried to give Dylan an intrathecal drug when we were at Sloan Kettering in New York a couple of years ago, but it didn't work because his cerebral spinal fluid (CSF) was not flowing. The doctor here thinks that may have been because the fluid was blocked by tumors which, now that they have shrunk, may be flowing better. We will do a CSF flow study after the holidays, to see if this is a final alternative. Then, we may be able to alternate the oral etoposide with the intrathecal approach every other month for a while.
Dylan has been having a really hard time lately with other kids who laugh at him, because of his issues with balance, eye-hand coordination, and cognitive difficulties: all results of the treatments he has been getting. The kids mean no harm. In karate, Jana came to pick him up, and found him crying harder than she's ever seen. His friends are all advancing in their belts, while he is stagnating at his. His sensei was crushed when he heard this, and sat down with Dylan for a long time, talking about his own learning disabilities, and giving him his confidence back. God bless him. If we do go into the BMT procedure, that will be even more progress that will be delayed by this disease. It is just heartbreaking to see, when, before he got sick, he was years ahead of kids his age in physical capabilities. And his friends are all outgrowing him and some are moving on to other, more able, friends.
Otherwise, the boys have had a good week. Since we couldn't work out a schedule for our CoachArt cooking coach to come over last week, she came twice, making scrumptious dinners both time that we all enjoyed together. Dylan had to make an instructional video for school, and so he chose to show the class how to cook following a recipe. We all watched the lunar eclipse early Saturday morning, and then I ran 9 miles (9.5, actually) for my marathon training (more info below). Chandler's debate team won their big debate during the week, he is continuing to shine in "Seussical," which runs for one more weekend, and his "Lullaby" song for Christmas Eve is getting some views. You can watch it here:
We are all getting excited about seeing our families next week! We went and saw "A Christmas Carol" at the Glendale Centre Theatre last night, which is becoming an annual tradition for our family. More on this excellent show here:

The latest (December 5, 5 a.m.): Dylan's MRI on Wednesday resulted in more good news: the tumors in his brain have shrunk a little more, and the tumors that were in his spine are undetectable. His blood counts are solid, and the nurse case manager called Dylan a "miracle boy!"
However, we can only continue the oral etoposide he's on for another month or two, because it has been known to cause leukemia if used too long. Additionally, any other drug we can give him has the same leukemia risk; and the tumors would most likely be resistant to them. The only remaining possibility for cure, and it is a long shot, is the bone marrow transplant (BMT).
Since Dylan needs to be in "minimal" disease state to do the BMT, our oncologist feels he has reached this point, and is pushing for us to get started as soon as possible. But first, we need to find a donor. The BMT team at Children's has been searching, but so far has not found a match.
If you want to join the bone marrow registry (all you do at this point is swab your cheek), please do so here (register free with the promo code PIF070109). You do not have to be in Los Angeles to be eligible, nor do you have to come here to donate if you are a match; we can take a bone marrow donation from anywhere in the world:
Jana and I are on the fence about doing the BMT. We realize this may jeopardize Dylan's chances of survival, but it is unproven, highly experimental and, to be brutally realistic, if this should be Dylan's last few months in this world, we would rather not spend it putting him through hell, keeping him separated from his friends and normal life, which is what we can expect. We are meeting with our oncologist today to discuss this option in more depth….
[Note: Please do not send us alternative therapies that you may have heard about. We have heard about and seen them all, or at least enough to keep our heads spinning with decisions that have little to no medical basis. We have faith in our doctors and our God and that is enough. We appreciate your good intentions, though. Thanks for understanding and respecting our wishes on this.]
In other news, the boys enjoyed their aunt Linda's visit. She saw Chandler in Seussical (which is now entirely sold out!), and was very impressed with the production. Other than helping out a lot with shopping, laundry and such, she also went to hot yoga with Jana and Chandler, played hours of games with us, and joined us at some fun restaurants (Buca di Beppo, Bar Food), including a festive final meal at Cheesecake Factory (try their new "Skinnylicious" menu for low-calorie alternatives to their usual gluttonous fare). They miss her already, but are excited to see her again, and all of our families, in a couple of weeks.
Last, and certainly not least, we are grateful to the Will Rogers Motion Picture Pioneers Foundation for helping us with our insurance payments this month. More information about this excellent organization here:

The latest (November 28, 7 a.m.): Dylan's next MRI is Wednesday. We hope for continued good news. Thanks to all of you who keep us close to heart. 
The boys are excited that their aunt Linda is coming to town to see Chandler in "Seussical" this weekend.
We went and saw Hugo and The Muppets this weekend, both great movies! We also had a fun game night at a friend's house on Friday night, right after Dylan had scored a touchdown in a football game he was invited to play in by a friend.

The latest (November 14, 6 a.m.): We are all doing well. Dylan's only noticeable effect from the chemo pills he has been taking is some hair loss. 
We all went to see Chandler's latest musical, Seussical at the Morgan-Wixson Theatre over the weekend. It was absolutely amazing. Chandler's biggest show yet and the talent is abundant. The direction and choreography are also superb. Info on tickets is below. It is a huge cast of nearly 40 people, mostly kids, and is a guaranteed good time for any family.The musical plays Saturdays and Sundays at 2 pm through December 17 (except December 11).  Learn more at this link: If you want to go ahead and buy tickets (which are selling out fast), you can at this link:
I ran the Brentwood 10k on Sunday on the way to the marathon in March. I've enjoyed the support and advice I've been getting. Dylan was at the finish, cheering me on with a megaphone, and he ran the last 25 yards with me across the finish line. I am extremely proud of Chandler, who ran the 5k the same day with Jana. He did great, but is really sore today! More details below on the marathon, and the cause I'm running for:

The latest (November 7, 5 a.m.): Dylan's MRI results from last week were good: the tumors continue to shrink and there are no new lesions they could see. We are elated that the good news continues under the current regimen: the oral etoposide. 
However, we also met with the bone marrow transplant team and they told us more about what to expect should we decide to pursue that treatment. Dylan could be in for a really rough time, from mouth sores that could be severe, to life-threatening infections, to his body rejecting the donor's marrow, to permanent side effects including even more stunted growth, and the raised possibility of developing another cancer later in life. We are all very wary of taking this route, and hoping for clarity in what may be our toughest decision yet.
The boys had a fun Halloween, trick or treating for miles until they just wore out from exhaustion. They both sold their candy to a group that sends the candy overseas to our troops. Since both boys love buying stuff with their money more than they love candy, this was a no-brainer decision. 
Chandler's latest musical, Seussical, starts Saturday. Info on tickets is below. It is a huge cast of nearly 40 people and is a guaranteed good time for any family.The musical plays Saturdays and Sundays at 2 pm from November 12 - December 17.  Learn more at this link: If you want to go ahead and buy tickets, you can at this link:
Finally, this Sunday I have my first running race since I committed to running the L.A. Marathon, a 10k in Brentwood. It will be the farthest I have run in years (10 miles is my personal record in distance, so it will not be the farthest ever).

The latest (October 31, 6 a.m.): Halloween is Dylan's favorite holiday. He is going as SpiderMonkey, an alien character from his favorite show Ben10. Chandler is going as a glow-in-the-dark stick figure man. 
Dylan has an MRI on Thursday at noon. Please keep us close to heart at that time. We are also going to visit the Bone Marrow Transplant unit now that they are in the new building that Children's Hospital built. We did a bone marrow transplant before, but that was with Dylan's marrow. This procedure would be using a donor. He is still on the oral etopiside that is working, but cancer has a way of mutating a resistant strain to any medicine that is working, so we have to go to the bone marrow transplant to try to eradicate all cancer cells that could be in his brain or spine.
Chandler recorded a song for his children's choir director, that she also wrote, and they videotaped him singing it in the studio and put it online. The song is called "Lullaby" and is for Christmas Eve. It is already getting rave reviews. Watch it here:

The latest (October 24, 6 a.m.): We had a blast at the annual WeCan family camp, up near Idyllwild. They use the Ronald McDonald camp for kids with cancer, which the boys attend during other parts of the year without us. This once-per-year camp is for the whole family and is a special time in our lives. The weather was amazing, and it was nice to have time devoted entirely to the family. Chandler was bummed to miss a rehearsal of Seussical, his current musical at the Morgan-Wixson, but he knows all the numbers very well. 
Highlights of the weekend were shooting archery, the awesome food, seeing families again from previous years, and watching Chandler sing "Let It Be" at the campfire and then Dylan doing his "I threw it on the ground" comedy routine. Many of the other family members say this is their favorite weekend of the year, because they can be reminded that they are not alone and other families can help with the struggle and the healing. If you are looking for any charity to support, we highly recommend WeCan for your tax-deductible donations. More info here:

The latest (October 10, 7 a.m.): Dylan ended up feeling poorly after all. We had a sleep-over on Friday night, but he started to get the headaches -- not as badly as usual, but enough to keep him on his back the whole time, and most of Saturday. He rallied back yesterday and is doing alright again today.

The latest (October 7, 7 a.m.): After the good news on the MRI from Tuesday, Dylan's PET scan on Wednesday was even better: most, if not all, of the tumors in his brain are dead. We were blown away by this great news. However, as the oncologist says: the PET scan is not a microscope: It can only tell us that the predominance of the masses are dead, but cannot tell us that they are 100% dead.
Dylan then had an LP (spinal tap) Thursday to take a look at his spinal fluid for cancer cells. The oncologist detected one cluster of "suspicious" cells, but that was all, and is the same as last time, which is still relatively good news, and is not cause for concern, he said. Dylan was a little sore today from the spinal tap, so he stayed home from school today. Thankfully, he does not seem to be having the painful "spinal headaches" that are an occasional result of the procedure. Poor Jana has had to drive back and forth to Children's Hospital four times this week, plus trips to Dylan's new school. I appreciate how much she has to do above and beyond the call of maternal duty. She is equally exhausted. :(
We have been blessed again with regular visits from our CoachArt coach Stacy, who has been cooking with us every week again, and she even invited us to her awesome water tasting and delicious food tasting birthday party. She had a friend, Brant, come over this week, who helped cook the latest meal, a nice coconut curry, and who wants to create a photojournalism story around Dylan's struggle and triumph. 
We also have another organization, called Make A Film Foundation, that wants to help Dylan make a video about his illness and include the cooking as part of it.  Lastly, we are also supposed to have the video of Chandler singing the Christmas Lullaby song online soon. So watch for lots of photos and video coming soon!

The latest (October 5, 7 a.m.): Dylan's MRI from yesterday was great: his tumors continue to shrink and much of the swelling that was there last time is gone. The doctor ordered a PET scan for today, to see if the tumors are taking up glucose or not (which would mean that they are dead, if they are not). It will take a while to get results on that scan, so I will hopefully have more info on that for Monday's update. The doctor also ordered another month of the oral etopiside and said that if the tumors continue to shrink, we would put off the bone marrow transplant until after Christmas, which would mean we'd get all the major holidays out of the hospital, which is great news.
We want to take advantage of having Dylan out of the hospital for these last few months until he is inpatient at the bone marrow transplant unit at CHLA, which will last at least six weeks. On Sunday, we cashed some coupons that my co-workers at Fox Audience Network and Myspace Ad Ops had given me for Dylan, to get into Disneyland and dinner at Medieval Times. We took one friend each to come with Dylan and Chandler and had an absolutely fantastic day. The weather and traffic were incredible, to begin with. 
We rode: Space Mountain, The Matterhorn (twice), Indiana Jones, Star Tours, Finding Nemo, Haunted Mansion, Mad Tea Party, Tarzan's Treehouse, Mr. Toad's Wild Ride, Small World, Astro Orbiters, Rancho del Zocalo mexican for lunch, Billy Hill and the Hillbillies at the Golden Horseshoe for ice cream sundaes, and make-your-own-lightsabers at the Starcade. We wanted to ride Splash Mountain, but ran out of time. All recommended. We had the equivalent of a free Fast Pass, having gotten a handicapped card for Dylan.
Then we went to Medieval Times where actors on horseback and in medieval garb ride in a rodeo-style theater in the round, and you root for your knight based on color (we were yellow) to win all the sword fights and jousts. The kids screamed for the yellow knight louder than I have ever heard them, and woke up the next morning hoarse, but happy with the great memories.
If you haven't heard yet, I am running the Los Angeles Marathon to raise funds for pediatric brain tumor research. Info is below from last week's update:

The latest (Sep 26, 7 a.m.): Dylan is still doing well on his second month of oral etoposide. His blood counts are fine. He has had some hair loss, but that is so far the only noticeable side effect. The next MRI is on Oct 4 with a PET/CT scan the following day. We meet with the oncologist after the MRI to discuss the results and possibly going into the bone marrow transplant. I'll update again after that. Please keep us close to heart during those days.
Now that I have lost more than 100 pounds on the Brentwood Diet, I am running the L.A. Marathon March 18 to raise funds for cancer research. I will most likely donate the funds to the Pediatric Brain Tumor Foundation that supports research into a cure for what Dylan has. There are many worthy charities and it is hard to choose just one, but I think this is the best use of the funds we raise. More informative links are below, but here is the link to donate funds:
I mention "we" because a few people have said they also wish to join "Team SuperDylan LA2012." There are no team meetings, but if you want to coordinate with me on training and meet up the day of the race, please contact me. Since so many of you are not in L.A. or do not want to run a marathon, you can be anywhere and run any race, just point people to the ChipIn link I will post next week to help the team raise the funds. I am using Hal Higdon's training programs, first his novice 10k program which, if you start today on week 2, it will line up perfectly with a 10k in Brentwood. Then after the 10k, I go straight into his novice marathon training program. There is a half-marathon in Irvine that also lines up.
I had a Running Gait Assessment done at Phase IV training center recently, to get some help with my running technique and find out where my heart zones are for maximum training. Links are below to Phase IV, as well as my tools to use to attain 180 steps per minute in my running cadence. I have also made a playlist on iTunes with all 180 beats per minute songs (or 90, and you just run double-time). Chandler is constantly singing the songs from the musical, Seussical, at Morgan-Wixson Theatre. The musical plays Saturdays and Sundays at 2 pm from November 12 - December 17. Learn more at this link: If you want to go ahead and buy tickets, you can at this link:

The latest (Sep 12, 6 a.m.): Dylan is doing well so far on his second month of oral etoposide. He has had some hair loss, but that is so far the only noticeable side effect. The next MRI is on Oct 4 with a PET/CT scan the following day.
Chandler did a great job in the opera he performed in on Saturday and he was cast in yet another musical at Morgan-Wixson Theatre tited Seussical. This is their huge Annual Youth Musical -- the first Chandler has been able to participate in, and he is so excited! He is playing the Mayor of Whoville and they had their first read-through of the show last night. The musical plays Saturdays and Sundays at 2 pm from November 12 - December 17. Learn more at this link: If you want to go ahead and buy tickets, you can at this link:
CONTAGION won the box office and knocked Participant Media's other film THE HELP out of the top slot. So glad that both films are doing well. Go see them if you haven't already! And if you missed the link, here is the website I've been working on in relation to the film:

The latest (Sep 6, 6 a.m.): Dylan's blood tests came out great so, along with the great MRI results that showed the oral etoposide is shrinking his brain tumors, this means he can continue on it for another month. We'll have another MRI on October 4 and a PET/CT scan on October 5, to see if the tumors have shrunken even more, and to see if they are taking up any glucose -- if they are not, it means the tumors are dead and not growing, which is our great hope. 
Chandler had a big singing weekend: he auditioned for the next musical at Morgan-Wixson, called Seussical, based on the works of Dr. Seuss, and then learned that he has a call-back for the Mayor of Whoville; he sang for his first paying gig, taping a song called "Lullaby" that our church's children's choir director wrote, and also videotaping it for YouTube (link forthcoming); and last, but not least, went to a full run-through of the new opera El Canguro that he is one of only three kids cast. It happens to tackle the issues of both the destruction of the rainforests and human trafficking. If you like modern opera, please come see it downtown this Saturday at 7 pm at the AT&T Center. Here is the website: Here is a good introductory article about the opera:
Jana and the boys enjoyed a night in Malibu at a house that some friends had rented for the long weekend, while I stayed home to rest and relax after a stressful, but ultimately successful weekend. I worked on some writing projects I have going on, and did a lot of reading and movie watching and now feel rejuvenated.

The latest (Sep 1, 6 a.m.): Dylan had his MRI yesterday, after a night of bad dreams and a week of stress in the household, with me as the lead Mr. Grumpypants, to my shame. I've not only been dismayed by the delay of the site I was managing at work, but the Boston Children's Hospital staff had not sent the MRI they took last month, so I had to scramble to have their imaging center FedEx a copy via priority overnight on my nickel. Dylan had trouble staying still for the MRI, so it took more than three hours and started late. Thankfully, we had some friends from a brain tumor support group called WeCan that sat with us for a while during our wait.
The scans I ordered from Boston arrived just in the nick of time for Dylan's oncologist to have enough time to compare the scans and meet with us before his next appointment. We were just getting ready to send the boys to the playroom so we could talk to the oncologist in private when he waltzed into the room with a huge smile on his face.
The oral etoposide Dylan has been taking for a month is working: the tumors have all shrunk, a couple have even disappeared! The tumors have "necrosed," meaning they are dying off, and melting away on every single spot there was in his brain. The oncologist was so pleased, and Dylan beamed as I gave him a high-five. I physically felt a load lift from my shoulders.
They took a blood draw to make sure the chemo is not hitting Dylan's platelets and liver panels too hard, and the doctor set up an MRI and also a PET/CT scan for a month from now. The latter scan will tell us if the masses in Dylan's brain are dead inside or not. The MRI can only tell us if there is a mass, but the PET/CT can tell us if they are using up any glucose or not. If not, that is even better news.
Currently the disease is not minimal enough for the stem cell transplant that we have planned. Hopefully another month of progress will shrink it down to that level, and we can go into that phase in the fall. The doctor was also markedly impressed with my dramatic weight loss, which mirrors the shrinking tumors, though he thinks I might be too thin now that I am smaller than he is! :)
I started weeping for joy as I waited for a refill of etoposide at the hospital pharmacy. We are awaiting word on Dylan's blood counts to ensure that he can keep taking the medicine, and will start him back on it next week if so … so keep that positivity coming since the battle is won, but the war is far from over.
In other good news from yesterday, the website for the Contagion social action campaign at work launched. Please visit it and interact with everything. Watch the compelling videos, click on all the timelines (one on each of the 5 pages, with cool infographics for each one), visit all the different pages, play the Facebook game, vote early and often on the poll and quiz, and share the heck out of the site online. Here is the link:
I am so grateful for Participant and TakePart having come along at just the right time; not only a company with a mission I firmly believe in, but one with people who really care about what truly matters in life. I happen to be reading the Pulitzer Prize winner for nonfiction, which is a history of cancer titled The Emperor of all Maladies. I was surprised to find that it tells the history of the Dana Farber Center and Jimmy Fund Clinic in Boston, where we just were; it covers the start of modern marketing of cancer research using current advertising and marketing practices and show business icons to raise awareness. The chapter titled "The Goodness of Show Business" moved me to tears (a lot of those lately) as it tells the story of "Jimmy" of the Jimmy Fund was on the radio in the '40s. As they brought in all the famous baseball players of the time into Jimmy's room as a surprise, his gasps and "golly gees" helped raise a lot of money over the airwaves. The Red Sox are huge supporters of the Jimmy Fund clinic to this day, and that helped Dylan change his allegiance from the Yankees! It was the first instance in the war on cancer of Participant Productions credo: that the power of entertainment can be channeled to change the world for the better. Amazing how Dylan's story, this book and my new job all tie in miraculously.
Speaking of powerful entertainment, the opera that Chandler is in next weekend (Sept 10) is selling well. It happens to tackle the issues of both the destruction of the rainforests and human trafficking. If you like modern opera, please come see it downtown at the AT&T Center. Here is the website:

The latest (Aug 29, 6 a.m.):   Jana and the boys came home from Nashville Friday. They had fun with Jana's family at the lake house, and went waterskiing, even Dylan!
Dylan has an MRI on Wednesday to see if the oral etoposide he has been on for a month is working or not. Please stand with us; send good thoughts, prayers and energy our way. We are rapidly running out of options, with the bone marrow transplant the next, and close to last, step. See the archived updates for more info.
Chandler was cast in a part in a new opera titled El Canguro, part of the 2011 California International Theatre Festival, that premieres on September 10 downtown. He is excited to be involved in something so different from the musical theater he has been involved with the past five years, and something so unique and modernistic. Learn more about the opera at the website here:
Chandler also will be getting paid this Sunday to sing a Christmas song that he has done before with the children's choir at church -- his first paying gig! They are going to video the recording session for posting and promoting to other churches on YouTube, which will get him exposure (he dreams of having an agent who can get him on TV or on stage at some of the bigger theaters here). Once I have the YouTube link, I will, of course, post it here.
The latest (Aug 22, 7 a.m.):  I returned to Los Angeles late last night so I could go back to work in the office, where we are busily getting ready to launch the special site I have been project-managing. The site is a social action campaign around the film Contagion and I'll be posting a lot more about it when we launch (supposed to be on Friday).
I left Jana and the boys in Nashville after we drove back up from Florida yesterday, where we spent a week with my family, meeting our new arrival, Lucy, my sister Kate's two-month-old daughter. She is adorable! The boys loved spending time with my folks, my sisters, my brother-in-law and my parents' dog, Brewster. We were in the Destin area of the Gulf Coast, and I enjoyed visiting Seaside, where The Truman Show was filmed. The white sand beaches and warm weather were also impressive. I stuck to my diet as well as could be expected, given the fact that we ate out nearly every night, but I am also glad to be back home where I can get back on track and forge ahead toward my goal. I will not know how much damage I did until my weigh-in on Friday but, even so, my family was greatly impressed with how disciplined I was.
We also enjoyed Jana's family in Nashville, with the highlight of the time with them being Jana's mother's wedding. It was so sweet, simple, and short, with a few hymns, scripture and prayer to bless the septuagenarians in this new romantic venture. It is amazing to see such love and faith and one can only hope not only to live so long, but so fully as well. They will be enjoying Jana's family and lake house this week, returning Friday.
Dylan is doing well, having gotten a solid blood test in Florida, as the low-dose chemo, etoposide, which he is on is not having any ill effects. We hope it is working. His next MRI is on the 31st, so that will tell us more. Jana has noticed one of Dylan's eyes seems to be closing, which is not a good sign, but it's hard to be sure as I did not see this myself. We have not heard yet about any bone marrow matches from the national registries.
Chandler has the opportunity to be in an opera (!) along with some other children that will be in L.A. on September 10, about child trafficking and the rain forests. We are going to learn more about it soon, but you can go ahead and visit the website for the opera here:

The latest (Aug 9, 7 a.m.): Chandler is NOT a match for Dylan as a bone marrow donor. W e need to find a donor and, although the registries are very robust nowadays, but there's no guarantee the donor will want to go through with it, or drop everything for some kid they don't know, so it may be a while. If you want to join the registry to see if you're a match (all you do at this point is swab your cheek), please do so here (register free with the promo code PIF070109). You do not have to be in Los Angeles to be eligible, nor do you have to come here to donate if you are a match; we can take a bone marrow donation from anywhere in the world:
The boys return from camp this afternoon. We are so excited!

The latest ( Aug 8, 7 a.m.): Chandler and Dylan return from camp tomorrow afternoon, where they have been for a few days. It's up in the beautiful high-desert, near Idyllwild, and is sponsored by the Ronald McDonald charities, who build the invaluable Ronald McDonald Houses, where we have stayed in New York and Boston. Dylan had some trouble at first, and wanted to come home, but by the next day, was happy to stay and I think he will now not want to leave! Apparently he has been doing well on the oral Etoposide (see last week's update, link below for Archived Updates - Second Relapse), or we would have heard about it.
Thanks to everyone who has expressed support for our family in so many ways. We are so appreciative. It truly does take a village, especially when we are so far from family. Speaking of which, we are excited to be going on vacation with our extended families starting this Friday. I will still be working remotely on the Contagion film campaign for social action at TakePart. Jana and I have been going on a lot of dates (including yoga and walk/runs together), and went to see a romcom where the Contagion trailer was playing. The theater was buzzing positively after the trailer played -- I think this film is going to be big, and hopefully so also the site. Keep the URL bookmarked, as the new site will be launching close to the end of the month! Here it is:

The latest ( Aug 2, 1 a.m.):  Chandler woke us early yesterday morning, having had nightmares about the house burning down: a recurring nightmare for him that started when Dylan first got cancer. He fell back asleep and then had more nightmares. He cried while I held him at the latest MRI news, at how sad and scared he was, at how worried he is for Dylan, and a little at Chandler's stolen childhood, how he has lost that blissful ignorance of just how fragile we are.
Jana and I met with Dylan's oncologist at Children's Hospital Los Angeles for a long time yesterday afternoon while Chandler and Dylan were at camp. The doctor has not seen the MRIs taken in Boston yet. Hopefully they'll receive those this week, but since the tumors are growing and a new one has appeared in his spine as well, we had enough to go on to be able to discuss next steps without the scans.
First things first, the oncologist said: We know that, with this many tumors, and more likely on the way, we can't do much with radiation or surgery. Even with chemo we are running out of options.  We are going to run another flow study of Dylan's cerebral spinal fluid -- those of you who have followed our story will remember that in New York, Dylan's CSF wasn't flowing well, and so he could not be given that medication, because it is administered through his shunt (hardware in his head to regulate pressure, but also has a place to inject medicine). There are intrathecal medicines that can be given, should Dylan's CSF be flowing better now, for whatever reasons.
One drug we haven't tried, surprisingly, is oral Etoposide, which he'll take orally at bedtime for 21 days, along with Zofran to settle his stomach, to see if there is any response. It is the single-best treatment drug when given on its own and we've just gone from one therapy to another without trying it yet. There are minimal side effects: some hair loss, nausea, pretty penny-ante stuff, at these stakes. While on the pills, boys have a camp they'll go to with the Ronald McDonald charities starting Wednesday, and then a trip to Nashville for Grandma's Wedding (you read that right), and then to Florida for some summer fun with Daddy's zany side of the family. We'll have an MRI near the end of August once all that is over, to see how well the Etoposide is working. 
What is remarkable, the doctor said, is both Dylan's excellent physical condition and the slow pace of the disease. However, not to sugarcoat it, he has not seen a cure for a child with this many recurrences (this is Dylan's second full relapse, but it has "recurred" in the sense of resisted multiple treatments). That said, he would not even be bringing up the options to consider for next steps, the riskiest of Dylan's entire course of treatment, if Dylan was not able to take it, and if they had not seen some promising success with the proposed treatment.
Chandler's blood is going to be typed as a best possible HLA match for bone marrow, and even at that, it's only a 1 in 4 chance he will be the right kind of match.  The odds are even worse for us parents to be a good match. Chandler's has the best chance against Dylan's immune system attacking the new cells, known as graft versus host problems. Today's drugs to counteract this are stronger than ever, but it's still best to have as close as possible a match. 
Which leads us to the tough part: We will have to decide if we want Dylan to undergo another bone marrow transplant procedure; this time what's called an allogeneic one: with someone else's bone marrow, hopefully Chandler's. Before they leave for camp on Wednesday, we are having blood taken -- from both boys.  If Chandler is not a match and we need to find a donor, the registries are very robust nowadays, but there's no guarantee the donor will want to go through with it, or drop everything for some kid they don't know, so it may be a while. If you want to join the registry to see if you're a match (all you do is swab your cheek), please do so here (register free with the promo code PIF070109). You do not have to be in Los Angeles to be eligible, nor do you have to come here to donate if you are a match; we can take a bone marrow donation from anywhere in the world:
The high-dose chemo given to the patient during this protocol is the riskier part of the procedure. It wipes out Dylan's bone marrow and the white blood cells (stem cells) that fight off infection. The drugs and their intended effects, in addition to side effects, could be fatal, although many who have undergone the procedure have survived it, and even thrived, stronger after than they were before. The drugs given, links below, are Thiotepa, Melphalan, Etoposide at a small dose, and Fludarabine. If the stem cells are from a donor, then they also give an antibody for T-cells call Campath to avoid graft versus host, which can also be fatal. If Dylan survives, the experience is likely to be miserable, with all kinds of side effects, including the dreaded mouth sores.
This approach has been successful in leukemias, but has not been tried often with solid tumors, and even fewer with solid tumors of the brain and spine areas. With Dylan's type, medulloblastoma, there have only been three adults who have tried the procedure in the world, and only three children. We had seen one of the three on the Dallas news online recently, and we accidentally happened (?) to bump into the mom and the child in the hallway downstairs yesterday at the hospital, they were coming in as we were heading out. Jana recognized the mom (it helped that she was wearing her UT Texas T-shirt in the middle of Children's Hospital Los Angeles!). 
One nice thing about the bone marrow transplant unit now is that it is part of the new CHLA building and sounds like a nice place, if you have to be cooped up somewhere for 6 weeks, which is how long the procedure lasts. Dylan would then be kept at home for the next 4 months, including home schooling. He would be allowed no visitors at first, and then limited visitors, especially being wary of other children who may be carrying stronger germs than Dylan could handle. We have been through this before with Dylan's autologous stem cell transfer a few years ago, when we used his own stem cells which had been pre-harvested before a similarly brutal series of high-dose chemo rounds.
The nurse case manager who has been with us all along in this journey asked us to meet with a woman from Trinity Hospice while the boys are away at camp. They would first help Dylan manage any symptoms at home until he feels better, but they can also help with palliative care, should the time come. She also urged us to bring Dylan in on the decision we're all making, and work with his therapist on finding ways to talk to him about our choices and decisions. He has to be on board at this age; she said. Especially now that he's asking deeper questions about God.
Grateful thanks to Chris and the folks at work for allowing me to attend to my family during this time of trial. I've been so rewarded with working at places where the people have such big hearts, but TakePart takes the cake. :)
Sorry for such a long update. I edited it down as much as I could but, to quote Pascal writing a friend, "I have made this letter longer than usual, only because I have not had the time to make it shorter."

The latest ( July 29, 7 a.m.): Dylan went under the knife for brain sugary exactly four years ago today, and so started this long war of ours against what the Pulitzer-Prize winning book for last year calls the Emperor of Maladies: cancer. What's so insidious about brain tumors is that we have no idea if they're growing or not, other than seizures, but Dylan is on Keppra to keep seizures at bay, so there was no indication to us if they were growing. You have to get an MRI to know.
I spoke with our oncologist in Boston and Jana by phone early yesterday morning. The NDE-225 medication is not working. According to the MRI they took Wednesday, the tumors in Dylan's brain have continued to grow, although apparently at a slower rate than before, but they have not stopped. The consensus is to discontinue the medication and try something else, although we are rapidly running out of options. But please do not send us your recommendations for alternative medicines or approaches, we have heard them all, from Gerson to distance healing to actual snake oil. We appreciate the good intentions, just use that energy in prayer, good thoughts, positive energy, or donating your time to a local Ronald McDonald House or your blood/platelets to a local children's hospital. Deal?
I told Chandler, and he was sad; but we have all been through the bad news moment enough times by now that he did not get furious like last time, but instead went in his room, took his keyboard and belted out "Let it Be" at the top of his lungs. It brought tears to my eyes. I worked from home so I could be there for him; and Stacy, our cooking coach, came over last night and made some healthy chocolate chip cookies with him. We took them to the airport to welcome Jana and Dylan home. Sweets for the sweet. I abstained, not wanting to throw off my diet (currently at 110 pounds lost!).
We will meet with our oncologist here at CHLA on Monday to discuss what our options are. We can try another blend of chemo drugs and see if the tumors respond to those. The blend that the Boston oncologist mentioned is being tried in Austria, although we should not have to return to Europe, as fun as that might be. Another treatment is intrathecal -- injecting chemo directly into Dylan's cerebral-spinal fluid (CSF), but the treatment we tried in New York a couple of years ago showed that Dylan's CSF is not flowing well enough to distribute the medicine through his entire spinal column. I'll include the options more fully in Tuesday's blog.
Should one of these approaches work, or something else that our oncologist here tells us about, then we would move on to a stem-cell transplant using someone else's bone marrow (big brother Chandler would be the most likely match, although there are many registries of donors we could also try if Chandler's is not a good match -- we're having the HLA typing done later in the week next week). Then we would hope Dylan's body does not try to reject the new bone marrow. We have done a stem-cell transplant before, but with Dylan's own bone marrow that they harvested from him. The problem with using his own is that those white blood cells are the ones that allowed the cancer to grow in the first place. Using someone else's raises the chance that they will be stronger than Dylan's, and so be able to fight the cancer better.
We are saddened, of course, by the news; but we're girding ourselves for the battle of our lives. PLEASE let us know that you stand with us in the fight, even if you never post comments online. It helps us greatly to know you're pulling for us. We tell Dylan about all the people out there, around the world, who are praying for him; it makes him feel a lot better.
Stay tuned for more news from the front….

The latest ( July 25, 6 a.m.): Dylan and Jana leave for Boston tomorrow morning. He has an MRI the day after in the morning. I think we get result on Thursday, when the doctor's consultation is scheduled. We are supposed to find out if this medication is working or not, so this is a big one. Please offer up your thoughts and prayers for healing, send us positive energy, light candles, anything you can, we'll take it! Thanks and God bless. He has been feeling great, going to karate, sports camp, and plenty of playmates -- two yesterday!
Chandler also had a banner day yesterday, seeing a record three musicals in one day. First he completed his new role as assistant stage manager at the closing show of "Pinkalicious," one of the most popular kids' shows the Morgan-Wixson has ever mounted; then he helped usher at the adult show, "Chicago," so he could see it for free; and then finally I drove him out to Pantages, where I was able to get him a front row seat, by himself, to see "Shrek the Musical," but especially to see his friend Danielle from his first Morgan-Wixson musical, "The Amazing Bone," playing the young Princess Fiona. He was so happy for her, and so excited that a kid he knows, who is at his level of talent, has been cast in a huge production like that. It gives him hope, while also increasing his aching yearning to hit it big himself. I told him to be patient; that it will come when it's supposed to. He waited out by the stage door afterwards to get her autograph and let her know that he saw the show. Then he talked all the way home about the differences between the touring show and the original one we saw on Broadway a couple of years ago. He will have to keep himself occupied now with nothing going on musical-wise until "Seussical" auditions come along toward the end of August. He is really jazzed at the idea of being up on stage, belting out the tunes again.

The latest (7/18: 6 a.m.):  Dylan continues to do well on this new regimen. We won’t know if it’s working against the tumors in his head until he gets an MRI mid-week next week. Jana is flying back with him for the two-day visit: thanks again to those who donated air miles! He is strong and full of energy, which is not something you can usually say about kids who have been through what he has, so we are ever thankful for this blessing. Chandler had a blast at his sleep-away camp last week. He didn’t want to go at first, but now he can’t wait to go back next year! The counselors really loved having him, and they said he enjoyed rocking all the kids at the talent show on the last night.
This has been a great week for me. I hit my 100-pounds-lost mark in my diet, after just six months on it; and I got employed, after just a week of searching. My diet has been one of the things I can cling to in these tough times. I am so grateful to my “savior” Dr. Eric Mizrahi, who put me on the diet and has been a coach and mentor every Friday, guiding me through the diet. I have written a lot more about the diet, the doctor and my success on this page of my site: (Please note that I will update this page on Friday after my official weigh-in.)
I have gotten work from a few different places: I am excited about all of them, but the opportunity that uses most of the skills and interests I have starts tomorrow at a production company called Participant Media. They make great dramas and documentaries that you have all heard of with social concerns at their heart (click here for a list of their films). film has a social action campaign designed to help people do something about the social issue that the film deals with. In this particular case, the film is called Contagion, stars Matt Damon, and involves a pandemic that takes over the world like the plagues of old (click here to watch the trailer). The online manifestation of Participant is called TakePart, and my role with the company will be to be both Account Manager and Project Manager to get the website associated with the movie’s social cause launched on time (click here to see their site and past campaigns).  If I prove myself, there is a distinct possibility for me to parlay that success into a permanent role with the company and, as you know about me if you’ve ever read my blogs, I am all about calling people to social action for causes, of course, children’s cancer in particular, because of Dylan. These are the kinds of films I was hoping to make myself when I came to Los Angeles for film school at USC many moons ago, so I really hope this is a place I can make a significant next step in my career, if not to realize that dream, at least to be doing my part to help tell these stories that must be told. Please keep an eye on this blog for the social action push and help me succeed by clicking on the links, taking actions related to pandemics, and letting them know where you heard about TakePart.
Another job I will have on the side is to help my diet doctor renovate his website and get his book written. With my experience in web design, and being a writer at heart, I can help him get his communications into shape as much as he has gotten my body into shape. More than that, it will help many others for him to publish his book, saving their very lives, so I am excited to be helping him spread his message and approach. Again, I am glad to be using my talents to help people and not just make money (as important as that is in these times and with our situation).
I also will be renovating the website for my friend and another mentor, Jack Miles, Pulitzer-Prize and MacArthur Award-winner, in preparation for the publication next year of the Norton Anthology of World Religions. I built his website originally and keep it maintained and am eager to see the publication of this important, massive four-volume work, of which he is the General Editor. I see to be philanthropic in a way, because the misunderstanding of other religions that is rampant in our world today is the cause of many of our problems. I would hope that the use of these volumes in academia as well as people’s personal lives would help to create tolerant attitudes and openness to other views of the divine than those we happened to inherit because of the circumstances of where we were born. Stay tuned for updates about actions you can take to follow me in my career and help make the world a better place!

The latest (7/11: 7 a.m.): Thanks to those of you who donated air miles so Jana and Dylan can return to Boston toward the end of the month for his next MRI. And if the news is good, we will need to return again in August (and every month thereafter, as long as the medicine is working), so those who offered but whose miles we did not need this time, we will get back in touch at that time.
Dylan is SO glad to be home. He is seeing all his friends and doing the things he loves to do here. Although I am not sure this is a side effect, he has been complaining of stomach pain after eating sweets and threw up last night after having cake. This may be related to the medicine, it is hard to be sure. In any event, if he has to eat less sugar and processed foods, that is not the end of the world.
Chandler is at a week-long camp through our church up in Ojai -- his second sleepaway camp after Science Camp at school. Plus, he and Dylan are going to the Ronald McDonald camp later this summer for another week. Chandler is also happy to be participating in the current musical at Morgan-Wixson Theatre as a stagehand. More info here: But what Chandler is really looking forward to is the Fall Musical, Seussical, coming in a couple of months. He can't wait to be back on stage there again (pending him passing the audition, of course). They are also doing a couple of other musicals next season as well as a kids' version of Romeo and Juliet (I will read that with him this summer as he has already expressed an interest in Shakespeare after seeing the Globe Theatre when we were in London and after seeing derivative musicals like West Side Story and Kiss Me Kate).
I start my job search in earnest this week, attending free career counseling services provided by Fox, and starting work on the latest edition of What Color Is Your Parachute? A friend who helps people with their resumes is looking mine over this week, although I sent it out to a dozen people that asked for it last week. If you can help me with my search, here are links to my online resume (Word doc is at bottom under Attachments) and my LinkedIn profile:

The latest (7/6: 7 a.m.): We need help booking Dylan's return trip to Boston for his MRI near the end of the month using air miles. We are only sending Jana and Dylan, not all four of us, just for a couple of days. If you have American AAdvantage air miles you can donate to us, please contact me directly through the Contact page on this site, by email, or via my social networks. Please note that you need at least 25,000 AA miles to book one leg of the trip (there are four legs altogether). Thank you!
We are all back in Los Angeles now, and so glad to be back home and together as a family. Chandler and I joined Jana and Dylan in Boston last week. We toured the city and really soaked in the history and charm of the city and people. Chandler was excited to walk the Freedom Trail and took pictures of all the spots he had read about in Johnny Tremain, which they read in class this year. He was so excited about it, that I got a copy of the book and read it myself! It was a great city to be in for the Fourth of July as it reminded us of the real reason for the celebration of that day: those who fought, many with their very lives, to create a free country.
We will have fond memories of the city, but even fonder regards for the people at the Ronald McDonald House near the hospital. The family that run the house is so warm and friendly. Really amazing people. The house itself is amazing; a huge Victorian home in Brookline, a wealthy neighborhood, where Keith Lockhart, the conductor of the Boston Pops, was a neighbor down the street. In fact, Jana and I were inspired to consider opening a RM House here (they could use one in Westwood to service UCLA Mattel Children's Hospital, where we have stayed before; and it could also service the other Westside L.A. hospitals that have children's wings). If you wish to help this heroic charity, please find one where you can volunteer some time, or donate some money here:
Jana and I celebrated our 20th anniversary while on the trip. I credit both our faith in God and the strong friendship for helping keep us together through thick and thin. The actual day, June 29, was a rollercoaster as we were happened to be in the Granary Burying Ground on the Freedom Trail, where most of the patriots are buried, when I got the call from Myspace that I had been laid off as part of the recent sale of the site. We four hugged, cried a little in memory of the four years I worked there and of all the great people I got to know. I am especially grateful to those who kept me on through two massive prior layoffs and were lenient with my hours through the four tough years of Dylan's battle with cancer: Ryan, Sunil, Mike, Ian, Stephanie, Bill, Liz, Valeh, Daniel, Steven and, above all, Nada Stirratt: you have all been amazing to my family and if I ever get to work with any of you again, I will consider myself twice blessed. We dried our tears and I said, "Well, let's bury Myspace, and move on to the next stop on our own Freedom Trail." The last couple of years at work have been tough to live through, although dealing with life and death matters helped keep things in perspective for me. I am ready for the next chapter of my career, and am eager to see what kind of opportunities there are with someone of my strengths and experience. If you care to help me with my search, here are links to my resume and LinkedIn profile:

The latest (6/27: 7 a.m.): Dylan is still doing well on the meds in Boston and Chandler and I are going to meet him and Jana tonight! We leave in a couple of hours and are excited to see them again! Chandler is also really excited to be seeing Boston after reading so much about it this year in school, where they read Johnny Tremain and the teacher went to BU! We'll all return to Los Angeles on the 5th, and then Dylan needs to return to Boston for an MRI July 27th, and monthly thereafter as long as the medication is working. I'll be issuing a call for help soon for air miles for those upcoming return trips (just for two of us to return, not all four of us), so please be watching this if you are able to contribute miles.
Chandler has been feeling sad lately after graduating school this week; it's his last year at Kenter. He even says he knows he should be happy school is over, but school meant so much to him and he's really going to miss his friends that are going to the public school. I was a little teary myself at his culmination ceremony, and was glad to have three wonderful women there to be surrogate mother-figures for Chandler: Rebekah, who runs the amazing kids program at our church (; Charlotte, who is Chandler's fabulous therapist ( ; and Miss Louise, who runs a great tutoring program and summer camp just down the street ( . 
Thankfully, Chandler has a welcome distraction from his blues: a new musical at the Morgan-Wixson Theatre (they brought back their smash hit Pinkalicious, and he is on the stage crew this time, to learn new things yet again). As I wrote to those who run the children's program at Morgan-Wixson, they have no idea how important they are in the life of at least one young man. I sent them this quote from a great book on writing that I just finished: “I found a safe space to live in: the youth theatre company that I belonged to, which was wonderful. That, not school, was my real life. Naturally so. It was a collection of brilliant, funny, clever people, in which even the straightest of lads could camp it up…. Great place, great fun, great friendship. The most magnificent training ground, not just for theatre, but also for life. So much of my character was formed in that youth theatre. I don’t think the staff who ran it will ever really know how marvelous they were, and how important.”
~  Russell T. Davies, The Writer’s Tale: The Final Chapter

The latest (6/20: 7 a.m.): Dylan is still doing well on the new meds, with no detectable side effects . He and Jana have been enjoying Boston, spending a lot of time at Fenway Park and playing with new friends from the Ronald McDonald House. 
Chandler had two birthday parties over the weekend and this week are all his culmination activities, with Thursday being the big ceremony. Our cooking coach Stacy has moved back to L.A. and came over to make healthy cookies with Chandler last night, for us to send to Dylan and his friends in Boston.
We'll celebrate Father's Day when we're all together again. I spent the day feeling sick, having caught a cold. But earlier in the week, I got to see two dear friends, one a friend from college and his family for breakfast and another who had moved up north with his wife and thankfully who moved back. It was good to hear them both marvel at my weight loss (I just hit 80 pounds lost and weigh below 200 lbs for the first time in decades). More about my diet, for those who are interested, here:

The latest (6/13: 7 a.m.): Dylan had a lot of fun last week with his Aunt Linda, seeing the sites of Boston, including a tour of Fenway Park and a visit to the Harvard Yard area. He has been doing alright on this medicine, and is going with Jana to the Children's Museum today. A friend of ours from college and her daughter are joining them; they live in Providence, not too far away. They also had a visit yesterday from a pastor who is a friend of a friend, living in Boston, which I think did both their souls some good. 
Chandler had a great weekend with a second wrap party for the cast from his musical (after which he is still suffering from post-performance depression), a final performance with the children's choir at church, Joyful Noise, with yet another party for that, and then the Family Festival at school yesterday to wrap it up.
I was sad to read that Laura Ziskin died yesterday, after battling cancer for years. She is the person who started Stand Up To Cancer, the event that we attended last year. She was a legendary Hollywood producer as well, responsible for some great films of the last few decades. I'll always remember watching her dancing around the SU2C set like Snoopy: joyous, uninhibited, living out loud.

The latest (6/6: 7 a.m.): Dylan is doing well on the LDE225 medication so far and spent the weekend enjoying Boston's great weather (better than L.A.'s!) at a Red Sox game (and had Cracker Jacks for the first time ever!), riding a merry-go-round, and going to my father's Harvard classmate's home for dinner on Sunday. If you're Jana's friend on Facebook, she is posting pictures of their activities. Her sister comes to Boston tomorrow to keep them company for a while.
Chandler and I went to see Star Wars in Concert at the Hollywood Bowl, which was absolutely amazing; and have been watching the AFI's list of the top 25 movie musicals , the ones he hasn't seen yet. Chandler's graduation events have already begun, with a ritual at our church, where he is now officially a middle-schooler (he did a little fist-pump in front of the crowd when they announced that fact). The woman who runs the kids program there has done such an incredible job; Chandler has grown so much from what he has learned every Sunday. It is so much more than Sunday School, they don't even call it school, it's more about learning about life and finding deeper meaning in your own story. 
Chandler and I are doing alright "bach"-ing it up, but we miss Jana and Dylan, and can't wait for our family to be together again.

The latest (6/3: 7 a.m.): Dylan started the medicine yesterday. He threw up (he's getting Zofran today to stop that) and his legs hurt some (but that went away after a couple of hours). He is feeling well today and Jana is doing well also. I returned to Los Angeles yesterday, and was happy to see Chandler. We are going to Star Wars in Concert tonight, which will be a treat.

The latest (6/1: 7 p.m. Boston time!):  We had a smooth flight out to Boston and got to the Ronald McDonald house in Brookline around 10 pm local time (but only 7 pm for us, so we were still a little bit alive). The house is absolutely wonderful and the volunteer staff are amazing. There is a lot to do right here in the house, not to mention a huge park and playground next door and the hospital is a short 5-minute walk away and a small town center of shops a 15-minute walk the other direction.
We spent a looooong first day yesterday at the hospital, going over all the details of the treatment with the doctors (one of whom we know from CHLA and the family camp we have gone to back in L.A.). The possible side effects are very frightening to us, and we are feeling very unsure of the benefit, even if it extends Dylan's life. We have decided to go ahead and start the treatment, but may stop at any time and try something else that may be less damaging, although our options are getting fewer with each one we try. Since this drug attacks the pathways that hold together the connective tissues in the body (tartgeting the tissues in the brain tumors), some tissues may be affected in addition to the cancer tissues. His bones may stop growing altogether, his teeth may be weakened, chip easily, even fall out. He may lose his hair yet again, and there are a whole slew of other possible effects like nausea, vomiting, effects on his white and red blood cells and platelets. We are hoping of course that he has none of these.
Dylan was very sad today (another long day, but not as long as yesterday), missing his friends and his brother. It is very hard on us to consider moving forward with this treatment knowing how much it is taking away from Dylan's quality of life to be here, on top of all the considerations I just mentioned. I am hoping he can find some friends here who will hang out with him and keep him company, until he can come back home.
A small group of 6th graders from the local Heath Elementary School came over to cook everyone dinner (I sadly could not partake because of my diet), and then made Dylan the happiest little boy in the world by playing a great game of Sorry with him. He had been really jonesing for a good game, and the smile on his face was priceless. One of the kids said how cool Dylan is as they were leaving. So nice!
Dylan is supposed to start the actual treatment tomorrow, and I leave in the morning. I had hoped he would start today, so I could see him through the first day and hope for no side effects.  I feel good leaving them in the hands of the Ronald McDonald House folks and the doctors and nurses at the Children's Hospital and the Dana-Farber Cancer Center (the #1 hospital of its kind in the country, according to U.S. News and World Report). I'm just really concerned about the side effects and them having to go through them without me. I will have to keep in close contact with Jana, ready at a minute's notice to fly back out or fly them home if things take a turn for the worst.
As I'm writing, we are watching tornadoes bizarrely cutting swaths of destruction through Massachusetts, although they are heading slightly south of where we are, and we are pretty sure we will make it through the night safely (although if I wake up in Oz, that would be a nice break from reality) .... 

I made a list of fun things for kids and families to do in Boston. If you have anything noteworthy to add, please send me a note:
  • New England Aquarium
  • Children’s Museum
  • Duck boat tour
  • CODzilla Boat Tour
  • Boston Common
  • Public Garden (Make Way for Ducklings)
  • USS Constitution
  • Beacon Hill
  • Bunker Hill
  • Freedom Trail
  • Faneuil Hall and Quincy Market
  • Museum of Fine Arts
  • Red Sox game
  • Edaville Railroad (seasonal)
  • Harbor Boat Tours
  • Science Museum
  • Mystic Seaport
  • Sturbridge Village
  • Mapparium
  • House of the Seven Gables
  • Salem, Mass
  • Spray parks at Long Wharf/State Street/Quincy Market on the Greenway
  • top of the Custom House Tower every day at 10 and 2 for free
The latest (5/30: 7 a.m.): We leave for Boston today. We got last minute confirmation to come, but also the bad news that the travel budget covers per diem and hotel expenses, but not airfare, so we had to book expensive last-minute flights, costing a few thousand dollars. We are hoping the sponsoring company (Novartis) will cover the airfare since we are not staying in hotels. We are waiting to hear back from them during the week.
Chandler is staying here in L.A. with a fellow cast member from his musical, "Thank You, Mr. Falker," which ended it's fine run yesterday. It was easily one of the best experiences Chandler has had among his many at the theater. He is very sad it's all over, and also that we will be split up for a while . I return Thursday, after I've gotten Jana and Dylan set up at the Ronald McDonald House in Boston. Once school is over (June 24), I'll bring Chandler out to Boston and we'll all be together there until mid-July.
The treatment is similar to the one we had in Belgium in that Dylan only needs to check in once a week at the hospital and otherwise is free to roam. Jana will show Dylan the fun parts of Boston and try to keep his brain exercised since he'll miss the rest of school. We'll do FaceTime every night, with Dylan using the iPad2 he bought himself using the money he saved for the past few years. Then, when we are all together, we'll be there to celebrate Jana and my 20th anniversary and the 4th of July, and we'll show Chandler Boston and New England (which he has been studying lately in school, even reading Johnny Tremaine this month).
Dylan had the birthday weekend of his life with the mother of all birthday parties and family in town all weekend to keep him happy and entertained. He will miss his friends and the birthday presents that he has to leave behind, but he will take some great memories along with him to the City of Champions (a nickname for Boston).
We got the GREAT news that Chandler got in to Crossroads School for next year. He is elated, and excitedly looking forward to next year.

The latest (5/26: 6 a.m.): Dylan's birthday is today. He is nine years old! Please drop him a comment to wish him many happy returns; we were not sure he would reach this day at times in the past year.
We had an awesome time last night with our old cooking coach and friend Stacy, who came over and made the boys' favorite for Dylan's birthday: cake balls. Dylan is going to give the cake balls to his friends at his birthday party, which is to take a limo to see Kung Fu Panda 2, which comes out today. The first movie is Dylan's favorite and it's only too perfect that the sequel comes out on Dylan's birthday. After the movie, he wants to go to Cheesecake Factory with my family, who are in town for the special day and to see Chandler's musical.
Speaking of which, Chandler's musical has only two more shows left this weekend. Click here for more info:

The latest (5/18: 7 a.m.): Dylan's ninth birthday is a week from today, the 26th!
We spoke with the doctor in Boston yesterday. Dylan is definitely in and we're pushing for them to wait until after his birthday to get started. This means we would fly out on Memorial Day and be there for about six weeks with return trips planned monthly after that. We will not need air miles since there is a travel budget to cover the air flights. However, I do not know how the travel budget works yet. I should find out more about that today. Dylan will miss the rest of school, which has been so hard for him anyway, so he will miss his friends, but not the homework! I have a whole other update planned about Dylan's education. Stay tuned....
Dylan had his first sleepover at a friends house last weekend. He was proud of himself and had a good time (thanks, Amy!). 

The latest (5/10: 7 a.m.): We spoke with Dylan's oncologist, and we are all in agreement that the treatment in Boston (at the top-notch facility, Harvard's Dana Farber Cancer Center) is Dylan's best bet. He said if we choose to wait to start until after Dylan's birthday and graduation, then we could start Dylan on an oral chemo drug here called etopiside, to try to stop the tumors from growing. And we emailed back and forth with the doctor in Boston:  He said we could come now or wait until later, that it would not make a difference to the study or the travel budget. So we spent a long time thinking about our options.
In the end, we feel it's best to go ahead and pull Dylan from school (this has been a very hard year for him anyway), and get him on this Boston medication as soon as possible, and then get him on the oral etopiside when we get back. We can try to home school him through the rest of the year. 
We would fly Jana and Dylan back home for his birthday weekend, and maybe also for graduation, especially to see Chandler, who is in his last year at their school. We are waiting for word back from Boston that this timing will work for them and that their travel budget will cover it. I'll update again tomorrow with more information.
So we're looking into traveling to Boston as soon as next week -- Jana and Dylan would stay there in a Ronald McDonald House for the two months of the study, while Chandler and I stay here until school ends, and then we will go out and meet them. We do not need air miles as with Belgium, but we do need your contacts in Boston so we can have a list of friends that we can call on for help or just advice. Please contact me with your good friends in Boston.
There is more information about the open study at this link:
And there is more information about the Boston doctor at this link:  

The latest (5/9: 7 a.m.): We were glad to get Chandler back home again! He seems even more grown-up now after just a week of him being away. We had a fun weekend, including playing at the park, going on a family bike ride with our great friend Stacy, and a BBQ/poolside day with even more great friends on Mother's Day.

The latest (5/2: 8 a.m.): Jana and the boys had a great time in Nashville. I am glad to have them all home again.
We are still waiting to hear back from all the hospitals and doctors that Dylan's oncologist emailed last week. So far, the most promising option is in Boston. We would have to be there for two months (we would most likely all four travel together once the boys are out of school). 
There are other trials at other facilities that use other approaches, but our oncologist prefers the Boston approach to all the others. He gave us this article to read. It is from the New England Journal of Medicine and is very technical, but gives you the basic idea of how this drug works on the hedgehog pathway:
We are still wanting to discuss the other options, especially those closer to home, and then make a decision. Dylan cannot start any procedure until later this month since any open study will require a delay after the previous treatments was ceased, so we are not in a huge hurry. Plus, with Dylan's birthday later this month and his graduation from school in June, we may wait until after those two dates pass before we leave town for a couple of months. 
I will update again as we learn more solid information. Hopefully we will have enough information to make a decision by the end of the week.
We bid farewell to Chandler early this morning, as he left for the whole week at the 5th Grade Science Camp up in Big Bear. We will miss him and his beautiful voice, but Dylan is excited to have the run of the house -- especially the television. Chandler wrote Dylan the sweetest note, and it made Dylan smile when he read it this morning.
Chandler's latest musical, a world premiere no less, starts in a couple of weeks. It is based on the touching children's book Thank You, Mr. Falker. Chandler plays a bully! More info about the book and the musical, including online ticketing (you can even pick your own seats) at this URL:

The latest (4/27: 7 a.m.): We met with Dylan's oncologist and looked at his recent MRI. There are five spots that have all grown in size (though none of them is any larger than one centimeter), and the one that was gamma knifed has shrunk some more. The spine is clear, at least.
He has written all his colleagues again to see what Phase 1 Open Studies have available slots for Dylan. There are a number of options, but I won't summarize them all until we have heard back from all these other doctors. We are looking at facilities in Boston, Memphis, San Francisco or as close as here down in Orange County. There are a few drugs we can try that are not part of an open study that would keep us here in Los Angeles, if none of the Phase 1 studies work out as far as availability goes. There are a few different mechanisms that these drugs follow to attack the cancer and its growth. The most promising is given the "sexy" name (our oncologist's word) of the "sonic hedgehog pathway inhibitor." 
Hopefully we'll have all the research done by the end of the week so we can make a decision over the weekend. We can't start anything until four weeks has elapsed after cessation of the medications, so we have about three more weeks to decide and make arrangements. I'll post more details on Monday.

The latest (4/25: 7 a.m.): Jana and the boys had a great time in Nashville and came home very happy. The boys seem closer than they were before the trip, which is what happened when we went to Europe. They will have to go on more trips together! Their favorite moments were spending time with family, playing putt-putt and backyard softball, driving go-carts, and eating lots of pizza! They came home for Easter and ate record amounts of candy yesterday. We're all glad to be together again.

The latest (4/18: 7 a.m.): Last week was a hard one on Jana and Dylan, having to go out to the hospital three times for blood tests and Dylan's MRI. The blood tests showed Dylan's potassium was low, so we've been feeding him a lot of potassium-rich foods. But he is off the meds -- it was time for Dylan to take a planned break from the meds he was on anyway. His platelets were alright, so they should be coming back up, now that Dylan is off the pills.
The oncologist called with Dylan's MRI results on Friday. The large tumor that was gamma knifed has shown no change, but the smaller spots have grown, so we are stopping the current medication altogether, and will meet with him next week to discuss our options for any open studies that are out there (most are here in California, San Diego or San Francisco). This is not what we wanted to hear, but we will continue to fight.
Dylan's nightmares have returned, and he seems to be more irritable than usual. He said he did not want to know the MRI results, but I think he can tell they were not good news. This must be hard on Chandler, too. Both boys are seeing a therapist, and we can see how much it has helped them.
We were so happy to see our old friend (and cooking coach) Stacy this weekend. She came over and cooked with us during a visit back to Los Angeles, and brought her lovely family by the next day to meet us. We really miss our Stacy nights!
We were also happy to be given first-row, third-base seats at the Dodger game on Saturday night from a friend. We all went and rooted for the home team (they didn't win, it was a shame), but the boys were content to eat a lot at the free VIP buffet. We didn't get any game balls, but had a fun night at the old ball game.
The boys are on Spring Break this week, so Jana took them this morning to Nashville; they will be there all week having fun with family and friends. I will miss them!

The latest (4/11: 7 p.m.): They called us while we were driving out to Children's Hospital that no one would be around to reset Dylan's magnetic shunt (the neurologists all know how to do this, but none would be around so late in the day. So they rescheduled the MRI for Thursday at noon, so we have to wait. I'll update again on Friday if we have results.....

The latest (4/11: 7 a.m.): Dylan has his next MRI today.  This should tell us if this new medicine combination is working or not .  We may not get the results until tomorrow.  I will update again as soon as I have results. We appreciate your spiritual support while we wait.
He has had some stomach troubles the past couple of days, but we don't know if it's from the pills or something else. We'll ask the doctor today.
Chandler has two weeks off rehearsal from his play. I think he is going into withdrawal. He is singing the entire musical -- all the time! They launched a unique way to promote the musical, since it's a world premiere. Chip in a few bucks here to support Chandler and great local theater: and you can also go ahead and buy tickets to the show -- it's running in May: If you want to listen to some songs from the show, sung by the composer, they have a Myspace music profile here:
Jana's birthday is Friday! She has ramped up on her jewelry business and even has an online storefront here: Click "Jewelry Catalog," then click "Browse the Silpada Designs Online Catalog" and then click "Sign in to place an order!" Once you have an account, you can order away. Or just browse and contact Jana if you have questions.

The latest (4/4: 7 a.m.): Dylan seems to be taking the medication better now. He doesn't need to go in for a blood test until Wednesday. He cut himself falling a couple of times over the weekend and the blood didn't stop for a while, which means his platelets are a little low, but he had plenty of energy -- spending most of yesterday riding the bouncy slide at the art fair down the street. And when Jana went to pick him up one day last week after school, she found him showing a bunch of girls how he can do one-armed pushups!
Dylan's next MRI is Monday. We are hoping against hope that the meds Dylan has taken -- and he was off them a lot because of complications -- are helping.
I celebrated my fourth year working at Myspace -- Saturday was my actual anniversary. What an amazing experience working for such a remarkable company. Having a kid with cancer, it has been humbling and inspiritng to witness the support we have received from all my co-workers, and the corporation we work for. With regard to the entertainment/internet and digital advertising worlds, I have seen many ups and downs first-hand, and I am eager to see what the company's next chapter will be

The latest (3/28: 7 a.m.): We had a fun, relaxing weekend. 
Chandler performed in the school talent show, singing the Beatles again, this time "I Saw Her Standing There." Video is here: Facebook: Myspace (no login required):

The latest (3/21: 7 a.m.): Dylan came home yesterday morning after a long, rough, boring weekend in the hospital. He made it home in time to see his sensei running in his honor, in the cold, windy, rain, the 26.2 miles of the Los Angeles marathon. Chris stopped the run only to give Dylan a huge hug and bask in the glow of his fans out in front of the dojo. Here is a picture of Dylan holding a sign he made for Chris: If you can't see the photo, then try here:
Thanks to the hundreds of you who expressed your support in numerous ways (prayers, meals, visits). 
While Jana and Dylan stayed to play in the dojo (Dylan wrestled with another kid for the longest time), I drove Chandler out to Pantages to see the musical Beauty and the Beast. He really enjoyed it. We three boys then went to our church to take part in their "Marathon of Service" weekend (the marathon goes right down our street, and all the streets are closed off, so instead of regular Sunday services, they encourage people to take part in a dozen different activities to help those in need). We filled up a couple hundred bags of trail mix to take to a couple of charities that we support for homeless people. After a short celebratory worship service, we all, finally, came home together as a family to our warm home for which we were very grateful.
Chandler performs in the school talent show this weekend. He is singing the Beatles again, this time "I Saw Her Standing There."

The latest (3/18: 9 p.m.): Dylan started to have chills yesterday afternoon and ran a fever of 102. Jana took him to the E.R. at Children's where they told her he has sepsis, a potentially lethal condition if not caught in time. Sepsis is a blood infection, and most likely Dylan picked it up during his visit to the hospital for a blood test on Wednesday when they accessed the port in his chest (an easy-to-access bump on his chest that has a tube which leads straight to his heart). 
They started him immediately on two antibiotics and Dylan and Jana spent an uneasy night in a cramped E.R. room. I came to relieve Jana in the morning, and found that Dylan was in good spirits, had no fever, and no chills. He was ravenously hungry, which is always a good sign. 
While Jana went home to catch up on sleep, I stayed with Dylan and read books to him, played cards with him and watched him nap. We had visits from our pastor and the director of children's ministry at our church. They are both so awesome for coming out. 
We finally moved into a real room in the afternoon today, but it is a shared room with three (3!) beds. I do not anticipate a good night of sleep with so many beeping machines, nurses coming in and out for the three patients, and potential snoring (one of the dads was snoring this afternoon when we came in). 
Dylan is supposed to stay in the hospital for observation through Sunday night, as they wait 48 hours for a blood culture to see if anything is growing. But if nothing grows (48 hours is tomorrow, Saturday night), we really would like to get him discharged. He would love to cheer on his sensei Chris on Sunday during the L.A. Marathon (info below). We are hoping they will see fit to let us go with a late Saturday discharge and not keep us, and for my back's sake, I hope I don't have to spend two nights sleeping in this chair next to Dylan's hospital bed! Watch my status updates for good news, hopefully. :)
More on sepsis:
The two antibiotics Dylan is taking:

The latest (3/14: 7 a.m.): Dylan started back on the medications Friday night. He was up vomiting most of the night, but is handling them fine now. He had two birthday parties over the weekend, so he was on cloud 9! Dylan goes in Wednesday for blood tests and we are hoping for good counts.
Good news! Chandler got a role in the new musical at the Morgan-Wixson Theater. He is playing the bully! It will take a lot of acting skills for such a nice boy as Chandler to play a bully. The show isn't until May, so I'll be posting more about it closer to the actual show. (I may also be building a website for it.)
We wish Chris Paul, Dylan's karate sensei (pictured on the right), all the best as he runs the L.A. Marathon this Sunday. He is running in Dylan's honor, the little guy inspired him. He is also raising funds for our family to help offset the insurance deductibles we are faced with for yet another year (total of which is about $4,500 out of our pockets). More info here:

The latest (3/7: 6 a.m.): Dylan's platelets dropped again last week, so the doctor held off putting him back on the medications for another week. They will test him again this Wednesday to see if he is creating his own platelets and they are at a high enough level to start again. Jana and I are concerned about this, and unsure if we should stay on the meds at all, instead of trying something else. We are tentatively agreeing to wait until his next MRI on April 11 before making any decisions. We do not need platelet donations, but if you would like to donate blood or platelets to a local hospital, please click here:
We have all been sick the past week with whatever is is that's been going around. Hopefully we will all get over it this week.
Good news! Chandler got called back for the new musical at the Morgan-Wixson Theater. The callbacks are tomorrow night. The show isn't until May. Wish him break another leg!
My dad is in town for a convention for the next few days, and we are all looking forward to seeing him for dinner at his favorite restaurant, the Stinking Rose. Dylan loooooves the garlic bread, so he will have a secret weapon next time he is in the karate dojo!

The latest (2/28: 6 a.m.): Dylan's platelets dropped dangerously low last week, after only being on the new meds for less than a week. He was very low on energy all week, napping a lot and coming home from school a couple of times. He's also been coughing a lot, and we hope it is nothing more than the common cold (he has developed pneumonia before). On Friday, he got an infusion of platelets (after he and Jana had to wait three hours for the Red Cross to deliver some), and the oncologist took him off the pills for now. We do not need platelet donations, but if you would like to donate blood or platelets to a local hospital, please click here:
Dylan goes back in this morning for more blood work, and again on Wednesday; he has been missing a lot of school. The oncologist will put him back on the medication if his platelets are up, but if they come back down again, we may need to stop them permanently, and look for something else. But most treatments will likely have the same effect on his platelets, so we are running out of medical options. We are keeping the next MRI scheduled for April 11 for now.
Chandler is excited to be auditioning for a new musical at the Morgan-Wixson Theater this weekend, called "Thank You, Mr. Falker." The show isn't until May. Wish him break a leg!

The latest (2/21: 7 a.m.): Dylan had some adverse reactions to the new meds he is on, including a red, itchy and painful scalp; as well as some swelling on his forehead. Jana took him to the ER at Children's Hospital on Saturday (don't know why these things always have to ruin weekends and holidays), and they were there for half the day. They finally sent them home with prescriptions for 1% hydrocortisone cream for the rash; and Atarax for the reaction (and advice to use Benadryl for any breakthrough itching). Dylan is to avoid direct sun exposure as well. 
The swelling seems to have gone down, but we have Decadron, a steroid, to reduce the swelling if it comes back; plus Zantac to help his stomach take the steroid. He has done better over the rest of the long weekend and we hope that we can keep this and other reactions under control as the pills do their work against the tumors. The next MRI was moved from mid-March to mid-April, which would be two months after starting on these pills.

The latest (2/16: 6 a.m.): Dylan begins the new internal study at Children's Hospital today. They have scared up a couple of Temodar pills, as we wait for the Caremark delivery of the rest of them. Jana is taking him out in a few minutes for a blood draw to establish a baseline, and make sure his liver panels are OK. He takes the pills for three weeks, then he gets a week off. They check his blood every week for four weeks, and his next MRI is in two months. We hope for no side effects and especially not those that cause us to go to the E.R. for platelets and blood transfusions. Stay tuned....

The latest (2/15: 6 a.m.): We heard back from CHLA with the MRI results. They found a new tumor on the left side, a small one, about 9 mm large, in the left ventricle. The spots on the right side that we aren't sure is tumor don't seem to have changed, and the tumor we gamma knifed has shrunk a little bit. His spine is clean. The doctor in charge of the open study advised we get started right away on the three drugs, but we still haven't gotten the third one from Caremark. We are supposed to receive it tomorrow, which is the day we are supposed to start giving Dylan the meds ... hopefully they will arrive in time.
On a happier note, Dylan received a package full of get-well cards from Belgium, all made by kids from around the world, some even written in French. Very sweet.

The latest (2/14: 6 a.m.): We have not heard back yet on Thursday's MRI results. Our oncologist is out of town, so we have been trying to reach his backup and our nurse case manager, but to no avail. As soon as we get news, I will update here.
We also haven't heard from Caremark about the third med (Temodar) that we need to start Dylan on the new internal study at Children's Hospital that I outlined last Monday. We are supposed to receive it today or tomorrow to be able to start him on all three on Wednesday.
Dylan earned his kempo karate blue belt on Saturday! He just kept staring at it after his two-hour test was over. "I am SO happy!" he said when he left the dojo.
Both boys are excited to get Valentines (and candy) today, although neither will admit that they have a special girl in mind among the valentines that they are handng out.

The latest (2/7: 6 a.m.): We met on Thursday morning with Dr. Dhall, who is starting a new study internally at CHLA of a combination of the three drugs I linked to last week. Since they are all biological agents, they have a low "toxic profile," so we do not expect serious side effects. 
Temodar is a chemo drug that kills the cancer cells, but also stops the blood flow to the tumors, as does Revlimid. Dylan will take those two once a day for 21 days. Sprycel targets the genes that make tumors grow. He'll take that twice a day for the same 21 days. Then he'll take a week off. This repeats as long as it seems to be working. We can't start on the meds until we receive all three (and Caremark is still causing some problems), and until after we get a baseline MRI, which is scheduled for next Monday, but we're trying to move up to this week.
We'll need to test his blood four times in that first month, to be sure the drugs are not giving him issues with his liver, kidneys, white blood cells, and platelets. Dr. Dhall did not think it will cause any problems, but these drugs have never been tried in combination. Then we only test one or two times per month. He will also need MRIs every two months or so, and we're trying to move up the next MRI to this week.
We have to watch for fever, rash or diarrhea as possible signs that the drugs are causing an adverse reaction. Some kids also experience fatigue (but usually on higher doses).
We then took Dylan to the heart center at the hospital for a baseline echocardiogram and EKG of his heart. It was cool to watch his heart beating on the echo (like ultrasounds for pregnant moms).
Chandler is really enjoing doing the sound for the current play at the Morgan-Wixson, Pinkalicious. Many of the shows are sold out, so they have added extra shows and even those are selling out. More info here:
Our interview at Crossroads school went very well. We also toured the school and learned a lot about the kids, teachers and school philosophy. It is the perfect school for Chandler.   The latest (1/31: 6 a.m.): We got CSF results from Dylan's lumbar puncture. They were able to count eight (8) tumor cells. He has had four previous tests and never had a tumor cell, so this is bad news. However, our doctor says the bright side is that "the disease is not rampant."
He told Jana about a new open study that is starting at Children's Hospital under another doctor, a Dr. Dhall, who we also know. It involves two of the medications we were already going to try (Revlimid and Sprycel), plus a third called Temodar. We meet with Dr. Dhall this week, and need to get Dylan an EKG and echocardiogram as a baseline, to be sure the three meds he's on are not causing any trouble with his heart. More info on the three meds: Relivmid: Sprycel: Temodar:
Dylan may need blood and/or platelet donations while on these medications, beacuse of their side effects. I will let you know if that time comes.
Our oncologist is amazed at how well Dylan is doing, compared to most kids who are on their second recurrence. He told Jana during a recent meeting, "It is testimony to you and Eric, and the great job you're doing as his parents."
Dylan is testing for his karate blue belt (!) in a couple of weeks. He looks like a wise old jedi master during his classes: focused, intense, deadly serious about the art. I give a lot of credit to his sensei Chris, who shows him a lot of love and support. He even gave Dylan some "focus mitts," which are boxing gloves. Here is a video he took on this phone of Dylan first using them: Chris is also running the L.A. Marathon in Dylan's honor, as well as raising funds for our family. If you care to "chip in," you can do so using the ChipIn module on his updates page here:
We heard from UCLA about Dylan's sleep-deprived EEG results and the doctor did not think Dylan was at risk for more seizures, but our oncologist wants him to stay on the anti-seizure medication anyway, at least for the time being. The upcoming MRI will tell us more about the tumor that triggered it, and if there are any others.
Chandler is "in" a new play starting Saturday, but he's not acting or singing: he's doing tech. He decided any time a play comes up at his theater he does not want to perform in (or if he does not get a juicy enough part), he will do sound or lighting. I was struck by what a mature attitude he has for an 11 year old, and how smart he is to learn more behind-the-scenes magic.
Chandler is also applying to Crossroads school for sixth grade. They have a strong emphasis on the arts, especially drama. Chandler, Jana and I have an interview there on Friday morning and we have filled out all the paperwork (more than I remember filling out for college!). Chandler took his ISEE test Saturday, which are like SAT's for private middle school. We should hear back in March if he got in. More on Crossroads here:  

The latest (1/24: 7 a.m.): We are still waiting for the sleep-deprived EEG results. Hopefully they'll come this week. We ran into another problem with Caremark not allowing Dylan to be on some anti-cancer meds (Revlimid and Sprycel). We think we have worked it out, and hopefully it will be easier this time. Info on the meds here: Last, Dylan has an LP (lumbar puncture = spinal tap) on Friday to see if any cancer cells are floating around in his cerebral-spinal fluid. We are hoping for clean results, which we should have by next week's update. We are also hoping for no "spinal headaches," which lay him out on his back for days.   Dylan has started to play on a basketball team, and Chandler has taken up tennis lessons with an instructor, and also playing one-on-one with Jana. They both seem to really enjoy these new pastimes, and we are so glad Chandler has found an activity he enjoys, because he is not into team sports or competitive things.
Our faith community has been so helpful since Dylan's seizure two weeks ago. They are providing one meal a week to save Jana from worrying about cooking, and our pastor, Dave, took Chandler out for ice cream after school Tuesday, just to hang out with him and make sure he feels special too. Of course, everyone in the congregation is praying for us, sometimes daily. The woman that leads the junior high school Sunday school told us they demand to pray for Dylan if she forgets to bring it up on her own during their prayer time.
I may not be able to eat those meals from church for a while, though, because I was put on a medically supervised ketosis diet. The doctor is wonderful and I really love his philosophy (more at the link below). Although he is Jewish he works at St. John's, because he appreciates any faith-based approach to medicine. The diet will be hard. I have at least 80 pounds, maybe 100, to lose. I can only eat protein and near-zero calorie vegetables, no fruit, no salt, no spices, and water only to drink (and the Superbowl & my birthday are coming up soon!). He described it as Atkins without the fat. I told him I am a vegetarian, and so I rely on milk, cheese and beans and rice for protein. "Eric, you're in warrior mode," he said. "You've been fighting for Dylan's life and now you're fighting for your own. Eat dead animals, just like warriors of old did, until we get you into shape. Show your boys what a dad who's a fighter looks like." I am dizzy, tired and irritable, but can power through, knowing the symptoms will eventually go away (as will the lbs).
More info on the doctor, with a few of his blogs: More on ketosis:   Most of you know I work at Myspace, and know how fiercely I champion the site over its competitors, which shall remain nameless. :) Amazingly, our UPS delivery guy told me last night that he has asked his extended family to keep their myspace logins (they all have them, he said) and to use them, just because he knows the site and company has been going through tough times. He said he was relieved to hear I was not laid off two weeks ago (we lost fully half of our employees), because he knows how badly we need to keep on the benefits, what with Dylan's numerous procedures and treatments. He has also told me that they have a wall at their station with Dylan's picture on it, and all the drivers and their families have been praying for him. I am so grateful for this, and proud to call my UPS delivery guy my friend. You may recall our former trash collector also connected with me through Myspace (he has a band of his own), and was one of our first platelet heroes who came out to donate twice for Dylan when he was first getting high dose chemo. It has been amazing to see the outpouring of support and affection from people of all stations in life. I am humbled by the love that has been shown us by so many.  

The latest (1/18: 6 a.m.): We had a great long weekend with Jana's sister in town. The boys really enjoyed having her here, and enjoying the warm weather with her and all their friends. Dylan had a half-dozen friends come over yesteray to throw water balloons off our balcony (at each other, not unwitting passersby or cars). Dylan developed a headache yesterday, but it may just be because he has had a cold and it's just sinus pressure, perhaps made worse by the Santa Anas. We are keeping an eye on it.
Dylan has an EEG at UCLA tomorrow, but it is a "sleep-deprived EEG" which means we have to keep him up all or most of the night tonight, so it will be movie night all night at the David residence. We aren't allowed to give him caffeine, either, so it has to be all natural stimulation to keep him going. They are going to see if he has had any more seizures, big or small (we would not have noticed them since he is on anti-seizure medication).   NOTE: it takes 5-7 business days to receive results from the EEG, so I will update this blog with results once we get them, hopefully next week.
Also, MRIs have been scheduled for February 14 and March 28.
Dylan's sensei from his karate dojo is so inspired by Dylan's spirit that he is running the L.A. Marathon in Dylan's honor. Please donate toward his cause here:  

The latest (1/8: 7 a.m.): We were just preparing to take Dylan in yesterday afternoon to the ER for his smaller "aura" seizures, when he had a grand mal seizure. Thankfully, I had just dropped Chandler off at a playdate, and he did not have to experience the terrible scene.   He slowly withdrew, and stopped talking; he sipped some water, but couldn't swallow it all. Then his jaw started moving rhythmically and his eyes went vacant; his arm started convulsing, and I grabbed him and held him tight while he shook all over. This all happened within the space of about ten minutes. Jana and I both were weeping uncontrollably as she called 911; we felt so helpless and scared. I am crying now, as I recall it.
The paramedics came after about ten minutes (we live very near a fire house, thank God), but by then the seizure had subsided, and Dylan was just staring into space, frozen up in a contorted position. At first they weren't sure if they could take us to UCLA (where his gamma knife had been done on Wednesday), because their ER was full. We told them we would drive Dylan there ourselves if we had to, so they called UCLA and made arrangements for them to take Dylan. Jana rode with him to the UCLA ER and I drove over.
They gave Dylan Ativan, an sedative, Decadron, a steroid, to reduce the inflammation in the brain if swelling were causing the seizure, and Keppra, an anti-seizure med, which he must stay on for at least six months. We are hoping Dylan is not one of the 30% of kids who have an adverse reaction called "Keppra rage." Dylan has enough rage as it is, thank you very much! They also gave Dylan a CT scan to see if swelling or large amounts of bleeding might be causing the seizures. They did not take an MRI.
The radiation oncologist came by to see us. He said this had never happened before with any of his patients after gamma knife. In his opinion it is too early to be a result of gamma knife, but it's also hard to believe that it is a result of something else. He did not see any edema from the CT scan. He thought it may be doing nothing to have him on the steroids, but it can't hurt right now for Dylan to get them.
Jana told me last night that she recalls Dylan having an episode before the gamma knife procedure, so it may be that the tumor had grown large enough to cause the seizures and the radiation just exacerbated the condition. Either way, all the doctors, residents, interns and nurses who have come in the room were hopeful and reassuring that he will be alright. When I left the ER last night, Dylan had not really woken from the seizure. He peeped his eyes open a few times, but only for a second. His brain is "rebooting," as one of the doctors put it, and it takes some kids longer than others.   Jana spent the night with Dylan (they eventually got into a room), as he gradually woke up more and more. He called me this morning just now to say "Hello, Good morning dad!" They are supposed to be discharged soon. We are so glad because tomorrow it is Chandler's birthday!   We were not alone, either, through the ordeal. A friend from work happened to be in the ER with her mother when we came in. It helped to see a friendly face. Later, another family brought us a wonderful meal to the ER room, and spent some time visiting us in shifts. Dylan loves their son, and it did Dylan a world of good to hear his voice. I also brought Chandler for a brief visit, and to deliver overnight supplies for Jana, who would spend the night with him. Chandler made a point of bringing some Ben 10 toys for Dylan to play with when he wakes up. Our pastor came to the hospital to visit Jana and Dylan late last night. Of course, we know that hundreds of you out there are keeping us close to heart as well and it helps to know it through your calls, emails, texts and online messages and comments.  

The latest (1/7: 8 a.m.): Although Dylan slept through the night after the gamma knife surgery Wednesday night, yesterday and today he has had side effects, including headaches when running or walking down stairs, and he has started to have seizures:
Dylan keeps feeling a “weird feeling” that he can’t describe. Jana has had seizures herself, one grand mal and many petite mal in the past, and it seemed to her to be a similar experience for him as when she has had hers. Two times were while watching television, one was during a playdate. He had to stop the activity, was breathing heavily, but calmed down each time after about ten seconds with Jana holding him. Last night, he had a few episodes so there is nothing triggering them, it just happens every few hours unexpectedly, which scares him (and the rest of us).
Also, yesterday morning, Dylan walked in to the room after waking up and going to the bathroom, and said he saw a cartoon crab walking around on the bathroom floor. He said he knew it wasn’t real, that it was just his imagining, but we aren’t sure if this was a hallucination. He hasn’t reported seeing anything else that wasn’t there.   He also was too tired to go to his karate and basketball classes (he just started playing basketball), and sadly he assumed he would never be able to do karate again. We assured him these episodes will go away and he'll be back to normal soon.
The radiation oncologist said "Stereotactic radiosurgery may on occasion lead to transient increase in seizure frequency in the 24-72 hours after treatment. As long as this activity does not become 'generalized' or tonic-clonic epileptic seizures I would do nothing for now. This activity, if due to radio surgery, will resolve. If things worsen I would get an MRI to rule out edema or swelling around the tumor and treat with steroids if necessary. I doubt that will become necessary."
So we are keeping an eye on him and will see how he is tomorrow (72 hours after the surgery).  

The latest (1/5: 6 p.m.): Dylan had his gamma knife surgery this morning. The actual procedure only lasted about thirty minutes. He did not do anesthesia and held his head still with a plastic mask stretched tight across his face. He did fine and jumped right up when it was over. Jana and I were marveling at how simple and easy this treatment was, especially compared with some of the gruelling things Dylan has been through before.   Click the link below for a picture of him in the stereotactical radiation (gamma knife) machine:   He got a grab bag of candy to go share with the other students at the tutoring school which he and Chandler are attending during the break. After his tutoring class, he ran all the way home and ate a big lunch!   We do not anticipate any side effects, but need to keep an eye on him for the rest of the day: watching for any headaches or possibly a seizure, although that is very rare.   Dylan gets an MRI in six weeks and again in three months to see if the tumor has shrunk or stopped growing. Until then, we will be researching some open studies that he might be eligible for. See the History and Treatment page for more details.   Our pastor kindly brought us dinner and spent some time with us, just hanging out. We are so happy to have a faith family like the one we belong to. They have all been so supportive.  

The latest (1/4: 7 p.m.): UCLA called this afternoon to say they can take Dylan for the surgery tomorrow (Wednesday)! We're going in at 8 am for a 9 a.m. procedure. It does not take very long (a couple of hours at most), and he can come home afterwards. Please keep us close to heart! I will update as I have any info.   More on gamma knife here:  

The latest (1/3: 7 a.m.): We are hoping to hear today about the gamma knife scheduling. We had a fun New Year's Eve at a friend's house and a great weekend. Our cooking coach, Stacy, who moved to New York, came back to visit and came by the house last night for a little while, and then is coming back at lunch time today to make a fun lunch with the boys. They are so excited!  

The latest (12/31: 7 a.m.): Dylan's oncologist confirmed that the CSF sample they took had some replicating cells in it, although it is uncertain if they are cancer cells or some sort of remnant of the vaccine. Still waiting for the gamma knife to be scheduled. Dylan was glad to tell me this morning that he hasn't been having any bad dreams lately. I am so glad he told me!  

The latest (12/23: 10 a.m.): We're still waiting for CSF results and the schedulling of the gamma knife operation.   Dylan expressed interest in learning how to play the trumpet, which Jana is excellent on, and so she asked her mom to send her dad's cornet, which she learned on. It arrived yesterday and Dylan (and Chandler) played it, LOUDLY, for a long time. We'll get photos/video of it to show the folks back home up soon.   The boys are both going to a local tutor in the mornings, who they LOVE. They can't wait to go every day. It's run by a kindly elderly widow in our apartment complex and we can't recommend it highly enough, if any local parents are looking for something for their kids to do during the long break, contact us for info.  

The latest (12/22: 2 p.m.): Dylan is getting an MRI at UCLA at 3, to establish a baseline and also prepare him for the gamma knife operation -- they feed the coordinates of the tumor right into a computer that aims the beams of radiation with pinpoint accuracy.  We aren't sure when the  gamma knife surgery will be, but it should be in the next couple of days.   Thankfully, Dylan does not have any headaches from the spinal fluid check they did on him earlier today -- they were able to get the fluid using the shunt in his head instead of doing a spinal tap. So we should not have any hospital or treatment interfere with Christmas this year!  

The latest (12/22: 6 a.m.): Dylan and Jana just left for Children's Hospital so he could get a lumbar puncture (spinal tap) to see if there are any cancer cells floating around in his cerebral-spinal fluid. We should get results this afternoon. I'll update again when we find out.   We are also hoping for no spinal headaches also, as he had once before (they can last for 3-4 days), with Christmas coming up in just a few days.  

The latest (12/20: 7 a.m.): We aren't sure when Dylan's gamma knife procedure will be: we're waiting for a call from UCLA to confirm. I'll update again when we know more.
We are glad that Dylan and Chandler were asked to be in the Christmas pageant at our house of worship this Friday night in the Christmas Eve service. Chandler is going to be a Wise Man and Dylan is going to be the Star of Bethlehem. Here is a photo of them in costume:  

The latest (12/18: 7 a.m.): We aren't sure when the gamma knife procedure at UCLA will be, but it seems most likely it will be after the holidays. Dylan got fitted for the procedure yesterday and we are supposed to wait for a call.   The IEP meeting yesterday went well. Dylan is not advancing as well as we had hoped for, but we got some good information about where he needs strengthening and what to work on with him at home (when he will let us). We also  It loved how the specialists that work with Dylan in different ways all smiled when they talked about how much Dylan loves handball, and how strong and athletic he is, despite his challenges.   Both Dylan and Chandler had sleepovers last night, and this was Dylan's first ever, so we are excited for him. We just heard that it went very well and the boys slept through the night. Jana and I took in a movie last night. We don't have many date nights, so it was nice to just be alone together.  

The latest (12/17: 7 a.m.): We spoke with our radiation oncologist at UCLA and Jana has appointments today with the neurologist who will perform the gamma knife operation on Dylan, and then to create an immobilizing face mask that holds Dylan's head still, so the radiation goes exactly to the right spot and does not kill any healthy tissue.   The gamma knife procedure will likely be next week. It is an in-and-out operation, so there will be no hospital stay. We don't anticipate any serious side effects, but we do have questions about the healthy tissue that the beam of radiation has to pass through and what the effect of it might be. More on gamma knife here:
Jana also has an IEP meeting at school this morning, to cover Dylan's disabilities that are a result of cancer and the treatments he's had. We hear about his progress toward accomplishing various goals set every semester by professionals involved in PT, OT, Special PE, people who observe him in class, and his teacher. We determine the goals for the upcoming semester and request any special equipment or accomodations from the LAUSD to help him learn better.
And today is also the holiday party at school for both boys, so Jana baked 5 dozen cookies yesterday, after spending all week tirelessly clearing out the house for a yard sale, and then organizing and cleaning everything that's left, a major undertaking ....   Where do you nominate someone for Supermom?! :)  

The latest (12/16: 8 am): Dylan's nightmares have returned. We told him about the MRI results this morning (see below if you have not read them yet), because we know not knowing adds to the stress for him. It was hard to tell him that the vaccine didn't work and that we're not going back to Belgium, but he said he was OK with the news. Hopefully this will help him sleep better at night.   We went to Dylan's school holiday show yesterday. He was in the front row and he just really shone. Video of him singing "Here Comes the Sun" is here: Chandler's school show is today. He spent extra time getting ready this morning and dressing up for it. Can't wait to hear him!  

The latest (12/14: 7 p.m.): Dylan's MRI at Children's Hospital was scheduled for early afternoon instead of the usual early morning. He did the MRI without anesthesia (so he could eat during the morning) and, so as to keep him still, he watched movies on a little device that looks like a virutal reality headset. He brought his own movies to watch: Kung Fu Panda (his current favorite) and Scooby Doo: Abracadabradoo.
Because Dylan's port in his chest had not been accessed for a couple of months (it should be accessed every month to avoid clotting), the radiology nurses were hesitant to access the port, to give Dylan the contrast that they inject to make tumors show up better on the MRI. The nurses in oncology could do it, but they are on another floor, and the radiologists were ready to start the MRI immediately upon our arrival. So they had to inject a needle into the top of his hand to give the contrast via IV instead, which was a bummer. But Dylan took it like a champ. Then he still had to go get stuck again to access his port by the oncology nurse after his MRI was over, to get blood drawn. While he and Jana did that, I got a copy of the MRI on CD. By the time we were done our oncologist had already left for the day and could not give us results until late this afternoon.
The MRI results are good news/bad news (more bad than good, this time):
The spots we see in the spine are stable, but they are still there; it is not clear if they are tumor. The spot in the brain in the right temporal horn, the one that they weren't sure was a tumor, definitely is one, and has grown; but is smaller than 2 cm. Needless to say, this was not the news we wanted. If the vaccine had been working, we would have expected no growth.   The tumor is inoperable with standard surgery, so we contacted our radiation oncologist at UCLA again about using gamma knife, which appears to be a very promising approach to Dylan's situation of just having the one tumor growing. I'm going to run a copy of the MRI over to UCLA in the morning. More about gamma knife at this link:   There are a couple of other tiny spots that he is concerned about, on the left side, but it is unclear if they are cancerous. He has ordered a spinal tap (lumbar puncture) for next week to check Dylan's cerebralspinal fluid for any cells.
If the gamma knife works, then there won't be enough measurable tumor left to be eligible for the phase 1/2 open studies, so our oncologist suggested we put Dylan on two drugs that don't require the open study protocol, an oral form of etoposide: and another drug called Dasatinib:
Unfortunately, it is our oncologist's opinion that the vaccine is not working, since the one tumor did grow. He said the vaccine treatment should be discontinued and we should not return to Belgium. We are waiting for confirmation from the doctor in Belgium on this before making any changes to our travel plans. Dylan could get the gamma knife just after we get back, but we need to do it soon, since the tumor is getting large enough to possibly trigger headaches or other problems, like seizures. [Update: Our doctor in Belgium concurred, and said we should not return for more vaccine treatment after learning of the MRI results (below). I cancelled my car and hotel reservations, and returned everyone's air miles that donated them to us.]   You can read our oncologist's email to his colleagues on the History & Treatment page on this site, about halfway down in the first section, where it says "The latest."
On the brighter side, Dylan's bloodwork was all good, his levels are up to normal on all counts. Dylan has no symptoms and is feeling fine. He is happy that school is over for the semester on Friday (even though he missed half if it!), although he will miss his friends over the break. And the trip to Europe was not in vain; it was such an amazing time for our family, a priceless time to create memories, to bond and to learn more about the world.  

The latest (12/13: 7 a.m.):  Dylan has an MRI today, at 1 pm or so. Your thoughts and prayers are appreciated. We won't have results for a few hours after it starts, and even then, we aren't sure what the results will or won't tell us about the vaccine. I will update again tonight with teh results.   We spoke with a doctor at Children's Hospital Orange County about some open studies that Dylan may be eligible for. But we were told that, first of all, we have to wait until the vaccine treatment is complete (either because we run out of tumor material, which will likely be in a couple of months, or because we determine the vaccine treatment is not working and we discontinue it). The second problem with beginning on an open study is that Dylan does not have enough "measurable disease" to be considered, since they need some tumor material inside to determine if the course of treatment is working or not. The open studies, as badly as we would like to be eligible for them, sound like they will be rough for Dylan as far as side effects go, so there is a part of us that is glad to be putting it off for now....   Just FYI, the open studies we might be eligible for (in order of most likely to help Dylan) are:  The latest (11/29: 5 a.m. Los Angeles time!): We are all so glad to be home! We're all still feeling a little jet-lagged, though. Thanks to everyone for the "welcome home" comments and to those that offered us support all along the way. We are so grateful to have been given the gift of creating a special time in our family's memory, and to be granted the opportunity to try out this vaccine treatment with Dylan.   We arrived home Thanksgiving Day, and were happy to be invited to Chandler's 4th grade teacher's house. There were about 50 friends and family there and it was great to be with people who all spoke American English as a first language, to have great food and company, and to have something to keep us awake to overcome the 9-hour time zone difference!   Friday we unpacked and cleaned house, caught up on a bit of schoolwork, and went to another friend's house at night for dinner, but we all woke up the next morning at 3 a.m., unable to get back to sleep.   Saturday Dylan had karate and then we went to our favorite Italian restaurant, Pizzicotto, to let them know we had just been in Italy and compare the profiteroles to the ones we had in Italy. Jana and Chandler went to see the latest play at the Morgan-Wixson, "Thoroughly Modern Millie."   Sunday we spent with our church as they had an all-day event to create wreaths, ornaments and eat pizza, and then a casual service at night to trim the huge Christmas tree in the sanctuary and sing fun carols. Earlier in the day, we took the boys out to a small recording studio in Burbank to record their voices to be added to the rest of their kids' choir CD (hope to have it ready by Christmas, grandparents!). There's a photo from the studio on the last page of my November album here:   Here are links to my October and November albums, if any of you missed our photos from Europe:   While you're at it, check out my myspace profile, dressed up for the holidays, including a great Christmas playlist!   Dylan is feeling good and both boys return to school today, I return to work and we all return to "normal" for a while. We have an MRI on December 13 that may help us know if the vaccine treatment is working. We have a return flight to Belgium on December 22 for the next vaccine. Your thoughts, prayers, spiritual energy and good vibes around those times, and any other times, would be appreciated. Thank you, everyone. 

The latest (11/24: 9 p.m. Brussels time):  We took a fast train from Amsterdam to Brussels today, then I had arranged to pick up a rental car at the train station, which had to be big enough for all our many bags. We drove that to the house in Overijse where our non-traveling-Europe stuff was left and threw it all in the back and then drove it to the hotel in Brussels where we are staying tonight to repack it. But first, we drove to downtown Brussels for our meeting with the Ambassador to Belgium, who was gracious enough to share an hour of his time with us to ask more about the vaccine treatment and other aspects of our lives. What an amazing man. And to know that he had a Thanksgiving dinner planned just a couple of hours after our visit, it made his time spent with us seem that much more precious. We are grateful to have spent a few moments with him, something so few other Americans visiting Belgium get to do. We have been so blessed on this trip in so many ways, I can't begin to list all the different people we owe gratitude to. With that thought in mind, we give thanks to everyone who has helped us make this trip a memorable experience for us all, and, hopefully, a successful treatment for our own little SuperDylan who we know will cherish the memories from this trip for years to come. Thank you, one and all, from all of us!   Pictures from our last couple of days are here on pages 11 and 12:   Some observations about Europe:
Jana and I have both been here before a few times each and a couple of times together, but things are a lot easier with the Euro being the currency in every country (except those scallwag Brits who insist on using their Pounds Sterling, and are currently trying to decide if they will continue to be a part of the European Union or not).
Obviously, Europe is rich in history and so well-protected; I have been trying to teach the boys a little bit about each place we visit, from ancient Rome to Medieval Times to the Renaissance to the World Wars. The photos of the beautiful buildings, homes, landscapes and people we have met will be priceless souvenirs of this trip for the rest of our lives.
The train system is incredible and reasonably priced. The trains are mostly on time, and you can get from just about any city to just about any other. Day trains afford you breathtaking views of the countryside, but we have also really enjoyed the night trains, because you are paying the same price as a hotel, but end up waking up in a different city. The night train gently rocks you to sleep.
People here are exquisitely dressed (though maybe it's just because we're in the big cities -- I notice this when I visit New York as well). We feel like bums, but hope people realize we're traveling and need good walking shoes and comfy clothing.
Eating out has been an adventure, and really location-specific. We did not like the food in England. Belgium and France were delicious in their own ways. Spain was a crapshoot, we had some great tapas, but also some really scary meals (the animal-skin soup was an all-time low) . Italy has been a home run nearly every meal.
There is a  lot of walking here and a lot of stairs. We are getting in a workout every day (though perhaps balancing it out with the rich food and drink).
There is a serious concern for the environment here, most cars are very small, many are hybrids; many drive mopeds; the hostels we've stayed in use low-energy lighting and even the escalators only move fast when people are on them, otherwise they slow down to quarter speed. Of course, much of this is also to save on costs, but if it's good for the earth, then it's good enough.
There are a LOT of smokers here, which isn't pleasant when they are at the same restaurant (when it comes to this, there's no place like home, where L.A. is a leader in non-smoking regulations). There is also an extremely high incidence of lung cancer. Maybe they'll catch on soon and start to take preventive measures.
It's very hard to find a place to go to the bathroom without having to pay about a dollar (60-80 Euro cents). Funnily, this difficulty was the inspiration for one of Chandler's favorite musicals, Urinetown.
We have been very lucky with the weather so far (knock wood for the rest of the trip, which portends rain). Each city we visit has just had the rain stop. It has been raining and flooding in Belgium, so we would have been cooped up more than we like if we had just stayed there.
The people here have all been friendly, to the last person. We have not encountered the French snobbery that is surely more of a stereotype than a reality. People love Americans, more than just for their tourism money, our culture, especially Hollywood, have translated into all the places we've visited. People are elated to hear we're from Los Angeles. We have also found that people speak reasonably good English everywhere we go, and between that and sign language, we've been able to get the information we need to fully enjoy our trip. I leave you with two more observations about Europe, by other people, that I have found to be funny and true:   In Heaven:
•The police are British
•The cooks are French
•The engineers are German
•The administrators are Swiss
•The lovers are Italian
In Hell:
•The police are German
•The cooks are British
•The engineers are Italian
•The administrators are French
•The lovers are Swiss   From Pulp Fiction (warning, swear words ahead):
Vincent Vega: [Y]ou know what the funniest thing about Europe is?
Jules Winnfield: What?
Vincent Vega: It's the little differences. I mean they got the same sh** over there that they got here, but it's just, just there it's a little different.
Jules Winnfield: Example.
Vincent Vega: Alright, well you can walk into a movie theater and buy a beer. And, I don't mean just like a paper cup, I'm talking about a glass of beer. And, in Paris, you can buy a beer in McDonald's. You know what they call a Quarter Pounder with Cheese in Paris?
Jules Winnfield: They don't call it a Quarter Pounder with Cheese?
Vincent Vega: No, man, they got the metric system, they don't know what the fu** a Quarter Pounder is.
Jules Winnfield: What do they call it?
Vincent Vega: They call it a Royale with Cheese.
Jules Winnfield: Royale with Cheese.
Vincent Vega: That's right.
Jules Winnfield: What do they call a Big Mac?
Vincent Vega: Big Mac's a Big Mac, but they call it Le Big Mac.
Jules Winnfield: Le Big Mac. What do they call a Whopper?
Vincent Vega: I don't know. I didn't go into Burger King.  

The latest (11/23: 11 p.m. Amsterdam time): We arrived this morning into Amsterdam and were happy to get right into the nice hotel we decided to splurge on and book for our last regular night's stay in Europe. We showered up (no shower on the night train) and took our laundry to a service so we could have time to explore instead of waiting and folding. We found a good lunch and then went on foot exploring the old Dam square and then took the tram up to the Van Gogh museum, which we all loved. But nothing could have prepared us for the incredible show that we saw at Cirque du Soleil, called "Totem," a meditation in acrobatics and music on the evolution of mankind. We take an early train back to Brussels tomorrow for the last injection of the vaccine and return the following day, appropriately Thanksgiving Day, to the U.S.   Pictures from Vienna, Prague and Amsterdam are here, at the bottom of page 8 and continuing into 9 through 11:  

The latest (11/22: 5 p.m. Prague time):  Friday morning we arrived in Vienna and found that we had booked a great hostel, called the Wombat (much more attractive to visit than the name might imply). We really love it and it made it nice to have a place to hang out until the room was ready for us to move in. There was a pool table (Dylan is fascinated with the game) and free internet, finally, after having to pay for it the past couple of weeks.
We got into our room and then did laundry since it was raining. Once the laundry was done, the rain had abated long enough for us to get an authentic Austrian meal and get underground passes. I was glad to have gotten the boys' and Jana's winter coats, because it is getting cold as we move North and it turns more toward winter.
We went by the Opera house and walked around a little, finding a couple of quaint Christmas markets, where they sell holiday themed things and edibles (and drinkables). I noticed a theater was showing the film The Third Man every day, so I returned later that night for a midnight showing.
Saturday we took a hop-on-hop-off bus tour of Vienna to learn more about the history and what we had missed on our own. We hopped off and ate lunch at 550-year-old restaurant, Griechenbeisl, that had the signatures of luminaries both past and present, from Mozart and Beethoven to Strauss and Mark Twain even to Pavarotti and Johnny Cash. We also visited St. Stephen's Cathedral and watched street performers in the square and the main shopping promenade, which is already decorated for Christmas (called Christkindl here).
Sunday we took a daytime train to Prague. Sunday is a good day to travel, since most things are closed here in Europe. We checked in at the finest hostel so far, the Mosaic, recently renovated and already getting the highest scores among European youth hostels. The rooms are like a four-star hotel, there is a huge lounge downstairs with a great restaurant and a huge TV (which was playing American football live!).
We toured the city by foot on Monday (with an excellent tour guide who kept Chandler enthralled for two hours), touring Old Town and the surroundings. Then we had lunch at a restaurant recommended by a former co-worker who is from Prague, and were not disappointed. We walked over to the famed Charles Bridge, where we could see the huge Prague Castle on the hill. Just past the bridge, around a corner, is a wall dedicated to the lyrics and images of John Lennon. Chandler was impressed greatly! We tried to get up there, but Dylan was too tired. His feet have been hurting lately and Jana, the former shoe salesman, is itching to get him a new pair, but since we'll be back in L.A. in a few days, we are going to wait. We are done with the major walking for now.
We take one last night train to Amsterdam tonight and enjoy that city tomorrow, including seeing Cirque du Soleil which some friends got us house seats for tomorrow night! Then we take a train back to Brussels on Wednesday morning for the last injection and a meeting with the American ambassador to Belgium (he met our Belgian doctor at a benefit and, when he heard Americans were here for the vaccine, asked to meet us).
We finally take a plane home on Thanksgiving morning, with much to be thankful for.
Pictures from Vienna and Prague are here, at the bottom of page 8 and continuing into 9 through 11:  

The latest (11/19: 10 a.m. Vienna time):  We went to the Vatican Monday and took a one-hour tour, and then walked over to see the Sistine Chapel before we took a train to Venice. On Tuesday, I took Dylan on another day trip back to Belgium for his injection of the cancer vaccine and then we flew back. Jana and Chandler enjoyed a relaxing day walking around Venice and taking a gondola ride together. Unfortunately, the Venice hostel room was infested with mosquitoes and so I bought repellent and bite salve at a pharmacy in Belgium. Chandler and I both got bitten a few times.   Then on Wednesday, we all walked around Venice, trying to follow the signs to San Marco square and finally finding it. We were so lucky to avoid the rain, which finally came in the late afternoon, as we were leaving for the night train to Vienna.   We got on the night train early, the electricity in our room was not even turned on yet, and we tried to unpack (it was a very small room for the four of us, compared to the other sleeper trains where we have had two rooms, not one). Chandler was climbing down from his upper bunk when the ladder (and he) fell backwards. It was awful and very terrifying because it was still dark. I held him while he cried and we screamed to the train conductor to get us some ice. He was OK in the end, but it was a scare for all of us.   Our luck with the weather has run out as I write this in a rainy Vienna, but we are here for a few days, and the forecast is good for the rest of our stay. We plan to take a bus tour later and see if we can tour the interior of the famous Opera house. I also want to take a Third Man tour, based on the classic film, weather permitting.
View photos of the last few cities here (pages 7 and 8 of my November album):  

The latest (11/15: 4 p.m. Rome time): We moved on to Florence from Barcelona on a night train Thursday night, but since the night train was delayed, we got stuck at our connection in Torino for a few hours. Torino is near the Italian Alps, where the Olympic games were a few years ago, and is where the famous Shroud of Turin is located, but they keep it hidden away most of the year. It is a nice little town, but we were so glad to get to Florence, my favorite city in Europe, and I am not alone in being affected by this city, Stendahl being one of the most quotable, see this link:
We walked around for the remainder of the day Friday, seeing the local sights, including the famous Duomo. The hostel we stayed in was our favorite so far, with free breakfast and dinner included (expect Saturday). On Saturday, we walked back in to town, visiting a beautiful papier mache mask store, and strolling through the flea markets -- Jana got herself a pair of boots. Then we took a horse-and-carriage tour around the city. On Saturday night, we went to Trattoria Zaza and had one of the best meals of our lives; the food was simply heavenly. On Sunday, we took a personalized car tour through Tuscany (the Chianti area) with a driver who was extremely knowledgable about every subject from Roman history to how olive oil, vinegar and wine are made. We had another wonderful meal for lunch and then our tour guide let us taste some of the varieties of wine. On Monday morning, we caught the fast train to Rome and took an open bus tour of the city, stopping a couple of times to take in the outsides of the Colosseum and the Vatican. Weather permitting, we'll take a closer look at both tomorrow.
View photos of the last few cities here (starting on page 4, but mostly on pages 5, 6 and 7 of my November album):

The latest (11/11: 1 p.m. Barcelona time): Monday we too a day trip to Toledo, which is beautiful, and on top of a huge hill that we climbed. We went to the Prado museum on Tuesday. The boys actually liked the museum more than I expected they would.

On Wednesday, Stacy, Jana and Chandler took the train to Barcelona and walked around the city a while, admiring the Gaudi architecture, while I took Dylan by plane back to Belgium for his next injection. We luckily had a seat between us, where Dylan strapped in Rocky, his stuffed animal raccoon. The injections are 4 or 5 small needles, injecting just a bit of the vaccine just under his skin. It pinches a little, but Dylan takes it like a champ. Getting Belgium french fries and chocolate as a reward doesn't hurt his attitude, either! We flew back at night and crashed immediately. Today we're going to take a bus tour around Bareclona before our night train to Florence, one of my favorite cities in the world. Here are photos from yesterday, with more to come:

Stacy returned early this morning to New York (where she moved from Los Angeles a couple of weeks ago), and we are really going to miss her, both on this trip and when we return home. She has been such a great addition to the trip, not only because she speaks Spanish, but because she is so young and full of energy, she got us out and about much more than we would have been normally, and kept us all positive and happy (which is not the easiest thing, especially with Dylan, who would rather just stay in and watch movies all day).

Chandler asked if we could keep walking together as a family every day, when we get back home. I was amazed at how much this trip has brought us together and helped Chandler learn so much about the world, and about himself.  

The latest (11/7: 9 p.m. Madrid time): Stacy arrived Saturday early in the morning. Unfortunately I was sick with a bad cold the night before -- Chandler has the same cold, but about a day behind me. She speaks Spanish, so she helped us find the local equivalent of Nyquil at a pharmacy. The youth hostel where we're staying has a daily tour of Madrid, which Jana, Chandler and Stacy took (for part of it, they dropped off as the tour guide was too miliantly political in his comments and that is not what we came here to hear). I stayed at the hostel to rest, do laundry and play with Dylan. When they got back, they all went to some cool places in Madrid, including the Plaza Mayor and back to the lake in the Retiro park we went to the day before and got a rowboat, and took lots of great photos. Click here to see them:

Today we took it easy in the morning (almost nothing is open on Sundays here anyway), and then went to a flea market to see what there was to see; we didn't buy anything really (a "Mr. Bean" teddy bear for Chandler, and LOTS of candy for both boys), then saw a few of the sites around Madrid, then returned home for a siesta. Jana, Stacy and Chandler went to find a fruit and vegetable stand (the food here has been really starchy, so they have been yearning for healthier fare), and Dylan and I played pool back at the hostel. Well, I napped while Dylan threw the pool balls around the table, actually. We got the key to the movie room in the hostel after our healthy dinner and watched Shrek 2.
We were honored to know that a friend, John, ran the NYC marathon today in Dylan's name. He literally had Dylan's name written on his arm in indelible ink to keep him going through the 26.2 mile course. He raised money to help fight cancer and we couldn't be prouder.
Tomorrow, we're taking a day trip to Toledo (Spain, not Ohio) and plan to visit the famed Prado museum on Tuesday, before Dylan and I return to Belgium (this time by plane) on Wednesday for his next injection, and then fly by plane to meet up with Jana, Stacy and Chandler in Barcelona Wednesday night. We are so glad she will be able to help Jana and Chandler get to Barcelona without me. Stacy returns to New York on Thursday. We will miss her!

The latest (11/5: 7 p.m. Madrid time): We got up at 5 a.m. yesterday to catch a 7 a.m. train from Paris back to Belgium for Dylan's first treatment. While Dylan was getting his injection of the vaccine, I planned to take a cab to the private home in Overijse and trade out our cold winter jackets for summer ones, and pick up a few other things for the next leg of our journey.

Natalie, who is the homeowner's second cousin once removed (I think that's correct), who has been so gracious and nice to us, and also lives in Belgium with her husband and 2-year-old boy, said her father (who was visiting from the States) would be happy to take us to and from the train station, as well as to and from the private home. We were so grateful, and her dad was a wonderful host and chauffer for us as we got all things medical and logistical accomplished much faster (and of course, at no cost). We are again so appreciative for the help people have offered us in our time of need.

Dylan had no problem with the injection, which was given subcutaneously with a very small needle. "When are they going to give me the shot?" he asked, when it was already over! Not only did he not feel the shot, but he had no side effects. They were ready to let him go after 15 minutes. We got back to the train station to take a fast train (the TGV) back to Paris, although it was delayed by 30 minutes, which made us nervous, because we needed to catch our night train to Madrid, which we did with just a few minutes to spare.
The night train was splendid, with two cabins that had two beds each, including private toilet and showers as well as dinner and breakfast included. We slept pretty well and were grateful not to have to spend a full day traveling (the ride was 13 hours long).
We arrived in Madrid this morning to a beautiful sunrise and glorious landscapes of Spain, and then got some help navigating the Metro to our youth hostel where we are staying. None of us speak a lick of Spanish, though I guess I've picked up more than I realized by living in Texas and California, and watching a lot of Almodóvar and Bunuel films! The hostel is very nice, and, after a customary siesta, we found a tapas cafe and tried some of the local food, which was delicious. We then went to the Parque del Buen Retiro, which has a huge monument and lake in the middle of it, surrounded by street performers (who, all said and done, have 10 Euros of my money now!), and a Crystal Palace further in. Photos of our day are here:   Tomorrow, the kids' CoachArt cooking coach Stacy arrives to join us from New York, where she has moved, to help us (she speaks Spanish, arriba!) and to have some fun of her own before starting her job search in the Big Apple. We are so excited to see her again!

The latest (11/3: 11 p.m. Paris time): Monday was a holiday in all of Europe (for all Catholics at least, All Saints Day), so we went into town knowing there would be little traffic. It takes 20 minutes or so to get to the Eiffel Tower from our host's house, but in bad traffic, it can take as long as two hours! Finding parking was a little difficult, but after a few loops around the Tower, we found spots for both cars and walked to the River Seine going under the Tower. We noticed armed guards who were there in response to a threat by Bin Laden, but all the tourists seemed happy and carefree, not tense, that I could tell. We went to the river and our host graciously bought us all tickets to the Bateau Bus. Jana and I met in France on a trip for school way back in the summer of 1990; back then we took the Bateau Mouche, which is an expensive boat tour around the center of Paris. The "Bus" one we took was less expensive and is often used more like a large taxi service by the locals to get around more easily than driving or even taking the Metro. The boys got a closer look at The Louvre, Musee D'Orsay and Notre Dame.
Dylan has been difficult on our tours, though. He tires easily, which is to be expected, but he also keeps wanting to go home and play on the Wii (yes, there is one at this house, also, but all the words are in French, so it's interesting to watch), or he wants to be eating snacks and such, and is constantly asking when we are going home, as little boys do. We all went to dinner at a nice Italian place that is kid-friendly and Dylan and Chandler got their favorite dessert, profiteroles.
Tuesday we laid low and got caught up on some of the homework for the boys, which we have been remiss on keeping up with as well as we probably should. Yet traveling through Europe is an education of its own. It was drizzling heavily so we did not go into Paris again, although I'd love to show the boys the inside of Notre Dame and the Louvre, but our boys and their boys are loving each others' company so much, it's hard to make them go to museums and monuments. We had baguette sandwiches for lunch and a delicious Ratatouille for dinner.
Both Helen, who is English, but speaks French a heck of a lot better than I do, and her husband, Francois, have helped us navigate buying train tickets, exchanging American Express Traveler's checks (not as universally accepted as they used to be, because of the ease of counterfeiting), going grocery shopping, and reserving taxis. We love this family so much and yearn for the day when they may be able to return to live in Los Angeles, although this may not happen. Francois is the one who called Dylan, before he ever got sick, "SuperDylan," and, in return, Dylan nicknamed him "French Fry." Francois is an actor (who speaks English fluently, with a French accent) and the parts for his type in the States are not as frequent as they used to be; he has much better luck here in France and in England -- see the brilliant BBC TV movie "God on Trial" for a showcase of his acting, here is a clip of a soliloquy of his:
Since our hosts live near Versailles, we went there today to walk through the grounds. Dylan was resistant at first, "Not another palace!" he complained, but mostly because his good friends were with him, he powered through the long walk and enjoyed himself quite well. I wish I could show the boys so much more about the cities I love in Europe, but it's just not the right time. Perhaps in a few more years, we can return, only for fun, and with more time on our hands....
We take an early train tomorrow back to Belgium for Dylan's first injection, then a fast train back to Paris in the afternoon, and THEN an night train (with a shower in our train car, stylin'!) from Paris to Madrid. On Saturday we will meet up with Stacy, the boys' CoachArt cooking coach who has moved to New York, so it will be so great to see her again. She also speaks Spanish, which will be helpful as none of us do. We will really miss our favorite French family.  

The latest (10/31: 11 p.m. Paris time): We arrived in Paris late afternoon today and were met with a huge smile and many hugs by Helen, the mother of the family which we love dearly. They moved to Paris three years ago from Los Angeles and we have missed them greatly. She drove us around Paris to see some of the main sites (Eiffel Tower, Notre Dame, The Louvre and the Seine River), and then out to the part of Paris where they live (Vaucresson). At their home were waiting Francois, the father, and their twin boys Theo and Luca, both Chandler's age.

They had asked us to play Halloween down since it is not celebrated with the aplomb that it is back in the States. We had not had time to find costumes in London, so the boys tried out a few of theirs. Dylan took a shine to a gorilla costume, being the animal lover that he is, and the three other boys opted for basic bedsheet ghosts which Helen pulled together in ten minutes flat!

We ventured out into their neighborhood and were pleasantly surprised to see a score of other kids wandering around looking for participating households, and we found more than a dozen homes that had candy for the kids. Some houses even had decorated their windows and front yards as they do back home. Though the boys said "trick or treat" to all the people, they also said "merci beaucoup" and "bonsoir!" Some of those participating were friends of Helen's whom she had written to ask them to have candy ready just for us, but others were houses that were also ready without her asking, so we were pleasantly surprised to see that the boys brought home quite a load of sugary loot!  We were treated to a wonderful home-cooked meal and the boys played together just like old times until late into the evening.

Helen and Francois and their boys are sleeping at his mother's house, allowing us full run of their own home, a cozy little house nested among tall houses like you see in the Madeline books. We continue to be humbled and amazed at the kindness people are showing us on this voyage.   We got word from our oncologist back in Los Angeles that there was a bit of good news: "One piece of good news to add to your "grand ole time" in Europe; the CMYC assay on the recent tumor sample indicated that CMYC was NOT amplified in Dylan's tumor; while the significance of this in recurrent tumors is nor known, CMYC amplification in anaplastic medulloblastoma is a particularly bad prognostic sign -and therefore its absence in Dylan may provide encouragement that his tumor is still responsive to treatments."

Pictures from today's adventures are here (go to pages 3 and 4):

The latest (10/31: 9 a.m. London time): Yesterday we hit most of the big sites: We started out taking the tube to Big Ben and Parliament. We arrived just as Big Ben started to toll 10 a.m. We then were going to ride the London Eye, but the wait was 90 minutes. It is mid-term break here, so everything is extremely crowded. I was told later by another American that it is not worth the money to ride the Eye. I guess we'll never know. We did not come away empty handed, though, because we found a unique photo booth that takes your picture in 3D and then etches it in glass with a laser beam (see photo of it at the below link).

Two main tube lines were shut down for construction, so we rode the double decker bus to St. Paul's. We lit candles for Dylan and all the kids we know with cancer. Dylan prayed "God, please help me to defeat cancer, and please let me get a LOT of candy for Halloween." Dylan was already tired, so we sat down while Jana and Chandler climbed the stairs to the top of the dome. We had lunch in the cafe, down in the crypt area, and then set out for the Tower of London. We took the tour, guided by a Yeoman Warder (Beefeater) which was actually very funny: the guide was quite cheeky. Again because of the crowds we did not have time (or stamina) to wait to see the Crown Jewels or the Dungeon.

Dylan and Jana went back to the hotel to rest, though not nap, and so Chandler and I walked to Buckingham Palace (about 15 minutes from our hotel). We had thought he would be able to stand next to one of the palace guardsmen, but none of them are out in front, just behind the gates and quite far away.

For our last night, we went out for Indian food, and saw the final performance of Sister Act in the London Palladium Theatre. Chandler loved it and the crowd was the most appreciative I have seen of all the musicals I've been to in the past few years. The star of the show gave a farewell speech, the first Chandler has been able to hear.

Today we are SO excited to go to Paris and meet up with very dear friends who have sons Chandler's age who used to live in Los Angeles, but who moved away just before Dylan got diagnosed. We have skyped with them a few times, and sent some air mail back and forth, but had never thought we would see them again.

Pictures from yesterday's adventures are here (go to pages 3 and 4):
I also updated my Halloween playlist while I had a few spare minutes. 30 songs of ghoulish fun, free to listen! Click here:

The latest (10/29: 8 p.m. London time): Today we went by the London Study Centre, where the college Jana and I attended keeps a building for study abroad. We met the professor in residence there and his family, but all the students were out on Fall Break, which not only applied to those American students, but to all students in London, which explains why it's been so busy here this weekend. 

The Study Centre is in South Kensington, so we went to Kensington Gardens and Kensington Palace afterward. The Palace was all decorated inside with a game wherein you go from room to room and guess which princess of English history the room is referring to, from a long time ago on up to Princess Diana. Chandler loved the riddle aspect of the castle and the historical aspect was good homework for him. Kensington Gardens has a large pond there and the people in the Study Centre had given us bread to feed the ducks and geese. As soon as Dylan cracked open the baggie, EVERY bird in the area swarmed him! He was elated but also a little scared, but came away unscathed.

After a walk to the Princess Diana Memorial Playground and some serious play there, Dylan was exhausted, so we all went back to the hotel so he could nap. While he slept, Jana stayed with him while Chandler and I went to do something he wouldn't have been interested in anyway: went to Shakespeare's Globe Theater, a museum/recreation of what scholars think the famous theater looked like. We went on the tour and Chandler was enthralled with the whole thing from the nasty description of the groundlings to the sword fighting exhibitions at the end, and was more good homework.

Afterwards, we crossed over the Millennium Bridge to go into St. Paul's Cathedral to light a candle for Dylan, but it was closed to the public for an event, so we'll return all four of us tomorrow. We returned to the hotel and the four of us went out to dinner at a Mediterranean restaurant (we haven't been too fond of English cooking, which pales even worse in comparison to Belgian). Tomorrow we also hope to hit the Tower, Westminster, and Buckingham, before going to see Sister Act at the Palladium, just around the corner from our hotel.

Pictures from today's adventures are here (go to pages 2 and 3):  

The latest (10/28: 10 p.m. London time): Wednesday we were homebodies again, and I think we finally got over our jet lag. We went to dinner at the restaurant at the Avalon hotel one last time, before packing for England and France. We were sad to leave the house and especially the Kuhn family who are also staying there, although I'm sure they're glad to have their place back to themselves. We are a noisy, rowdy California family that learned a lot about ourselves in comparison with them, a Southern, polite and considerate trio.
Thursday morning we returned our rental car and took the Eurostar train to London. The four of us sat around a table and played Uno, and read books, and planned our sightseeing in London. We sat next to a nice, elderly English couple that told us a bit about the Chunnel, how they had to erect more fences in Belgium to stop people from trying to jump the train into England, and gave the boys some oat crackers (like digestives) to eat along with our somewhat skimpy train meal (though the food was pretty good!). The Chunnel was less exciting than it seemed, just a dark tunnel for 15 or 20 minutes, with none of us feeling claustrophobic, and in fact the Belgian and English countrysides stole the show with their idyllic beauty.
Since the youth hostels in the area we want to stay in were booked up, we booked two rooms in a nice hotel, justifying it since we are spending most of the rest of our time in free housing or in youth hostels, which I realize now I need to book in advance for a week from now. We arrive mid-afternoon, but instead of sight seeing, the boys wanted to stay in their room and watch a movie (Nanny McPhee Returns, which was the most English movie they could have picked). I put a stop to that, saying they could watch it at night, when there were no sights to see, which upset Dylan.
So we ventured out and lo and behold, a huge toy store was just down the street, called Hamleys, which is 250 years old this year, is seven stories tall, and which was PACKED with people, getting a jump on Christmas shopping, I surmise. Dylan was excited to see Ben 10 placards on the way in and a huge Ben 10 toy section, from which he found a half dozen toys to add to his Christmas wish list, so he was fine with waiting to watch the movie. Chandler was drawn to some magicians showing off magic tricks that you can buy in a tin box. Narnia posters are all over, building buzz for the release of the next film, Voyage of the Dawn Treader. I wonder what good old C.S. Lewis would think of all the hullabaloo over his creation so many years later.
We returned to the room, finished the movie and ordered room service. The boys have their own room down the hall from us, which made them feel grown up to be on their own, though Dylan was a little scared and wanted to sleep with Jana, but I think this will be good for him to wake up and realize he did it all on his own. He told me he wants them to bring up a cot for Chandler tomorrow so he can have the king sized bed all to himself! Tomorrow we will go out and see some of the big sites, photos and more blogs to come....  

The latest (10/26: 9 p.m. Belgium time): Monday we stayed at the home instead of venturing out since we were still a little jet lagged. Jana and the boys, and the mom and her son of the missionary family, went for a walk in the local fields. They were very muddy, and the boys got dirty. They found some potatoes that had not been picked up by the harvesting machine and brought them home and ate them for a snack.   Then, on Tuesday, we took the rental car and drove into Brussels, about a half hour away. Our GPS got us there OK and we were even able to find a parking place. We have a parking placard you put in your windshield that came with the rental car that covers you for two hours. Our first stop was to see the famous Mannequin Pis statue/fountain of a little boy peeing. There are many legends about this mysterious statue, that he peed out a fire or a bomb, but no matter what he did, he made our boys giggle and that was a good way to start out our trek. After a delicious lunch at a local cafe, the boys got waffles from a local stand. Dylan got chocolate drizzled on his and made a huge mess of himself! We then walked in to the center of town to see the Grand Place, which Victor Hugo called "one of the most beautiful town squares in all of Europe, if not the world." Hugo was not wrong.

We then hopped back in our car just as our parking time was up and drove another hour to Bruges, one of the most beautiful towns in this part of the continent. We stopped in for coffee and hot chocolate so we could use the rest room (you have to pay for that privilege everywhere here). The hot chocolate was actually steaming hot milk, with milk chocolate morsels on the side in a chocolate cup. You pour the morsels, and the cup, into the milk, let it melt and stir it up. It was cold today, but we avoided the rain, so reinforced by the warmth of the drink, we took a horse and carriage ride through the town. The driver had a hilarious script that she must have recited a dozen times already that day (in English, Flemish, French and German), and we again made it back to our car just at the two hour mark. I took some wrong turns on the way home, but the GPS recalculated and got us home OK.
I uploaded photos of the three above adventures here in my October album:  

The latest (10/24: 5 p.m. Belgium time): On Friday morning the host of our private home left for Nashville to return to his family, and we spent the day doing laundry and relaxing. Jana and I went to the local grocery store, which was an adventure in language barriers, but we did alright. We were surprised to see they were serving free wine and rum alcohol samples -- alcohol is also sold in video stores and other unusual places here. We are all almost over our jet lag, although I have still been having trouble falling or staying asleep. I may need to use some of the melatonin that we brought to help out.   We were hoping the other family staying in the house would arrive Friday in time so the boys could play together, but they came home very late, so we got to meet them on Saturday instead. They are from Mississippi and are so nice. Their son and our boys have been thick as thieves since they met, playing Wii (Dylan's favorite), playing ball in the yard, watching movies and playing Uno. The weather was cold Saturday, and though clear in the morning, rain started to fall in the afternoon. We were going to go in to Brussels today, but the boys are having so much fun, we happily are staying put and enjoying the company. Plus, the rainy weather would put a dampener on touring anyhow. Hopefully that all will pass over soon.    We had dinner Saturday night at a great restaurant that only had one other family in it (in the Avalon hotel, if you're ever in Overijse). The young Belgian girl of the other family was coloring a Winnie the Pooh page and then when she was finished, gave it to Dylan. She kept glancing at him during the meal. So now he's breaking hearts in Europe as well as America! Chandler drew a picture of flowers that he gave the girl. Dylan drew a picture of a Ben 10 character, Ghostfreak, and then thought better of giving such a scary image to a young Winnie the Pooh fan. To make up for it, I gave each of the Belgian children a dollar bill since they likely had never seen one before. The boy stared at it for a long, long time. The woman with him explained who George Washington was. Then the Belgian boy gave our boys a 5 Euro bill each (which means we actually turned a profit, unintentionally).  :)   Though I called Overijse -- the town where we're staying right now -- a "small farming town" in my last blog, I don't want to leave the impression that it's Green Acres -- there are a lot of nice stores here and activities for the kids to do, which we hopefully will be able to take advantage of while we're here.    Driving here in Europe is an adventure, the roads are small and the drivers are mostly speeders. The traffic signs took some getting used to. A GPS is essential as many of the street signs are non-existent and there are so many windy little roads that fork that it's hard to tell which one you're on. Even with the GPS, we have taken some wrong turns and had to try to turn our little rental car around on these small roads.   We are sad to miss an annual event we have attended since Dylan got sick, the We Can Family Camp, for families with kids who have brain tumors in the Los Angeles area. Many of our fondest memories have come from that camp, and Dylan will especially miss the archery range, his favorite moment of the weekend. Maybe we can find somewhere here to do archery to make up for it a little. We also come away with awesome family photos, but we'll get those here in Europe instead. For more info about We Can, please visit   My sister left to return to New York on Sunday morning. We were all sad to say goodbye. She has been such a tremendous help, as one of the premier wedding planners in the states, she helped coordinate, arrange, organize and ensure we did everything on time. She also helped by playing with the kids while Jana and I had to focus on logistics and other necessary but boring things.   The people who are also staying in the house here are missionaries. Sunday they left for their church early, and we intended to join them when it started, but we didn't know the address. Since we have been having trouble getting online, we couldn't look it up; and the church's website was too large to load on my blackberry; even the GPS didn't have a listing for it, so we gave up. Through another social connection, unrelated to Jana's mom, we had already communicated with one of the pastors of the very same church (small world!). The whole congregation has been praying for Dylan, so that's one more on the list of hundreds around the world lifting up the little guy for healing.   So we spent the rest of the day Sunday playing various games, both digital and analog, and started to look at our plans for traveling around this part of Europe.

The latest (10/21: 9:30 p.m. Belgium time!): We left early Monday morning and flew or waited in airports for about 17 hours. The boys were good travelers (portable DVD players helped a lot). We arrived Tuesday morning in the Brussels airport and met up with my sister after customs. Then two friends came to meet us: one who was new via social networking who gave us all the ins and outs of living here during our drive from Brussels to Leuven (where the hospital is); the other was a friend of my sister's from college who thankfully was also able to come as we had SO many bags that it would not have fit in the car. It was a blustery, windy, gray and cold day.

We drove to the hospital family housing, which is at another hospital location than the main campus (Gasthuisberg), and all immediately lay down and took long naps. The room was small and had four beds for us, with the shower down the hall. Then when we awoke, we saw that the sun had risen. We struck out to see Leuven and walked to their town hall, called the most beautiful town hall in all of Europe:

We stopped at a restaurant and discovered first-hand the wonders of Belgium cooking. The waffles, fries and chocolate are world famous for good reason! We returned to our room and tried to sleep, but had a lot of trouble because of the jet lag.

Wednesday we registered at the hospital. The language barrier is there, but many people do speak at least some English. The doctor in charge was out of town (in America for a cancer vaccine event), but his assistant helped us a lot with information about the hospital and the procedure. That afternoon, they took Dylan and put him under to insert a catheter into his vena cava large vein in his leg. The reason for this was to take blood out of his body and prepare it, similar to what is done during platelet donation, but this was called leukapheresis. The blood they take is used, along with the proteins taken from the tumor cells resected from his brain, to create the vaccine injection that will make the proteins attach to the dendritic cells that fight off disease, and trigger them to attack the cancer cells in his body. More about leukapheresis here:

Jana stayed with Dylan Wednesday night as my sister, Chandler and I rented a car and drove out to a local farm town called Overijse. Jana's mother is in a church choir with a woman whose daughter is getting treatment for breast cancer, but who normally lives in this small town in Belgium with her family. Her husband happened to be heading back to Belgium for work just as we connected, so he was here and able to welcome us and guide us through the house. His house is also inhabited by another family that is here in town on missionary work, but who happened to be out of town when we arrived (they return tomorrow, and our host leaves). The other family has a son Chandler's age who is as much a Wii fanatic as Dylan. The owner of the house also has a cousin just a mile away who has also been really welcoming.

Thursday, we went back to the hospital to see how Dylan was doing. The catheter was in his leg and bothered him a little bit, but was not painful. He was not too happy to learn that most of the television programs here are either in French or Flemish, but Jana was able to find one Scooby Doo movie in English that he was watching when we arrived. We stayed with him a little while, but my sister and I had to go move our luggage out of the hospital housing over to the private home to avoid paying for another day needlessly. We returned just as the leukapheresis was beginning and stayed with him through it all. Dylan felt no pain during the procedure. After about five hours, they sent him back up to his room to have the catheter removed which hurt him a little. He had trouble walking for a while without pain, but seems OK as I write this. The blood work they did on him will make him tired for a couple of days. The copious amounts of chocolate that he's been eating should help with the energy levels, though. :)

The cost of the procedure itself is free (injections would amount to about 50,000 Euros each we were told), but the hospitalization is going to cost $2,000 Euros (about $2,600), but I'll submit that to insurance and hope it will be covered. The cost of living here is high, which we have already noticed buying meals, bus tickets, car rental, etc. 

Dylan does not need to return to the hospital until November 4, and, since he is in good health and feeling strong, we plan to travel around this part of Europe to see how it goes and create some special memories for our family. Who knows if the four of us will ever have the chance again to visit this most wonderful continent.

We are in the private home now and talking to Chris, the owner of the house, who is from Nashville, so Jana and he have a lot to talk about. His cousin earlier brought over a pumpkin bread in a sand castle mold. The Southern Hospitality has clearly not faded off these great folks! It is SO nice to be somewhere where it feels a little like home, where the people are American and speak English, that doesn't cost anything, and that offers a place to store our things as we strike out in a few days to create some European memories. It has also been nice to get on a real computer and not try to update via my blackberry, which I have to keep powered down as much as possible to keep roaming fees to a minimum.

Chandler has been keeping a journal and Dylan has started a unique project drawing all the characters from his favorite show Ben 10 with crayons in a notebook. I hope to scan them in when I return to the States....

The latest (10/18: 5 a.m.): Our cooking coach from CoachArt came over for a "last supper" of veggie pizza and pasta. The boys ate heartily. After buying foul weather gear at A16, we frantically packed for most of the day and night. Now we're just waiting for the cab to the airport. We are all excited, nervous, scared and tired. Your best wishes for traveling mercies would be appreciated....  

The latest (10/17: 9 a.m.): We had a huge delivery of warm jackets from a pair of school moms and tons of people at school have donated funds to our trip. In fact, Dylan was driving with a friend and stopped to buy some lemonade from some girls who had a stand in their yard. They freaked out when they saw Dylan because the money they were raising was for him! It was like he was a celebrity to them. :)

We had Chandler's teachers from last year and this year over for dinner. We had so much fun and Chandler laughed a LOT!

I'm about to take Chandler to his last performance in his play and then we'll spend the day packing for Europe. We have just about everything we need. We are so glad Dylan is feeling great, we will be able to do a little traveling while there and show him Europe and create some irreplacable memories for us all.  

The latest (10/16: 8 a.m.): Dylan had a friend sleep over and Chandler slept over at a friend's house last night. Chandler's teachers from last year and this year are coming over for dinner tonight, and he acts in his play today and tomorrow ( It is hard to believe that in 48 hours we'll be on a plane to Europe. 

Learn more about Leuven, the city we'll be staying in here:

The latest (10/15: 8 a.m.): Chandler's whole 5th grade from his school is taking a special field trip to see his show. He feels so special that they are doing that. We have had so much support from our school, in addition to my workplace and our church, along with the countless friends and even people we don't know personally, only via social networking.

His last two shows are tomorrow and Sunday. More info at
We are making our final preparations for leaving on Monday. While we are gone, we're pleased to "pay it forward" by having another cancer family from Tennessee stay in our place for a couple of weeks while they get treatment with our same doctor. The dates of their treatment worked with ours perfectly.  

The latest (10/14: 8 a.m.): After securing airfare, lodging and transportation, we have now squared away getting passports, traveler's checks, Euros, electricity adapters and converters, rail passes and an International Driving Permit for me. We have people bringing us clothes and a check from the online donations that people gave. We have a cool dozen contacts in the city where we'll be staying. 

The latest (10/13: 6 a.m.): The oncologist called Jana yesterday to say there were two small tumors (~5 mmm) at the base of his spine. We are upset about this, but not surprised. The Belgian treatment will have two more indicators of if it's working, now. We will have an MRI upon our return from Belgium and can only hope the tumors are gone then.
We also received a medical calendar from Belgium. Happily, we will only be gone for five weeks instead of six. Here are the main details:
We register on Wednesday the 20th of October around noon for hospitalization. No food nor drinks after 8 in the morning.
The leukapheresis is planned for the 21th of October.
In the afternoon, a deep venous catheter will be placed under short general anesthesia. The catheter is only in on the evening before the apheresis and during the apheresis. That means maximum 24 hours.
Dylan has one overnight stay in the hospital with one parent only in the room.
On the 21th of October in the morning around 8:30 AM, the apheresis will start. This will end in the late afternoon.
Afterwards the catheter will be removed. This only takes a few minutes and its without anesthesia. After the removal of the catheder you should stay in the hospital for at least an hour to minimise the chance for bleeding.
  The dates of the first four weekly injections are (note Int'l date format):
•Thursday 4/11
•Wednesday 10/11
•Wednesday 17/11
•Wednesday 24/11
The vaccinations are given in the morning between 11.00 AM and 1.00 PM, afterwards you can leave the hospital. The injections are just little ones in the arms.   We plan to return to L.A. on November 25, Thanksgiving.
The 5th injection will be 4 weeks later, on Dec 22. Jana and Dylan will return just for that one little injection and then fly straight back.
Dylan can do everything he did before during this therapy (swim, play, etc).
We head for the Federal Building in a minute to go get our passports made....
Then Jana goes off to a "Price is Right" watching party. She was in the audience, so watch for her on today's show!  

The latest (10/12: 7 a.m.): Dylan did his spinal MRI yesterday -- without anaesthesia! He can watch a movie in the machine using these unique headsets. He just has to remain really still, which he did. They also did a serology ( for the Belgium treatment to confirm that Dylan does not have HIV, hepatitis B/C, syphilis or HTLV. We have not heard back on the MRI, which hopefully means there was nothing to call about.
We found housing in Belgium, some near the hospital for a nominal fee at night; and then we plan to stay in a home in a town near Leuven, for free, via a friend of Jana's mother's who is in Nashville. We are so relieved to nearly eliminate this expense, and we'll be in a house near Leuven that has another family in it with a boy Chandler and Dylan's age. The Belgian contacts continue to come in, which is great, plus we've even got a ride from a friend from the airport to the hospital when we arrive!
Just yesterday we agreed that my sister should come over with us (from New York) and help us as we get settled in for a few days. It will be a huge help to have her there with us.
While looking online at maps of Leuven, I found an old one from hundreds of years ago. I made that my myspace background, and also added Belgian songs to my profile (either songs about Belgium or by Belgians). Listen here:  

The latest (10/11: 7 a.m.): Dylan has a spinal MRI today. We are hoping it is clear, as it has been for more than a year now.... They'll also perform the "serology" on Dylan's blood in preparation for the Belgium trip.
Dylan was on cloud nine all weekend with a bowling party class reunion of his first grade class last year, and then a sleepover with one of his favorite friends, and then a pizza party at another of his close friend's home. Chandler's play opened over the weekend, and he is doing a great job (with 170 lines in the play!). We saw the show on Sunday and I am SO proud of him. He is sad to leave early and miss the last couple of shows, but his understudy needs a chance, too. He is also sad to miss Phantom at the Pantages (although he's seen it before). We need to sell our two tickets -- any takers out there? Message me, if so. More on Chandler's current play here:
I got Dylan's website up to date, especially the Pics page. Enjoy:
We are so grateful for everyone who has helped us in one way or another to help us with our costs for the trip to Belgium (we leave a week from today). Many of you have donated funds online, given us warm clothing, our air fare is all booked with air miles (huge thanks to Dad and Stacy the boys' cooking coach and world traveler), and last and maybe the most important, many of you have been reaching out to your social networks to help us find people in Belgium, and especially Leuven, that we can rely on for aid if we need it (at least for information about what it's like to live there for an extended period of time). We have already gotten a LOT of great information about Belgium, including a possible place to stay for free! 

The latest (10/8: 7 a.m.): The radiation oncologist at UCLA told Jana that he does not recommend radiation at this point. There's no point in doing standard radiation to the brain right now and if the second spot is a tumor, he would rather leave it there for now, as a good benchmark for the vaccine trial, and then, if it grows despite the vaccine, then attack it with gamma knife radiation. This is a huge relief as we want to avoid radiation as much as possible, even the safest highest-tech kind like gamma knife. Dylan's spine MRI and the serology that Belgium needs is scheduled for Monday at noon. We are getting our passports next week and have gotten many great leads on contacts in Belgium (and possible leads on lodging in Leuven, where the hospital is). Thank you everyone.
For those who want to support us financially, we re-opened the donations page of Dylan's site. You can donate funds to our family to help cover the costs of our trip to Belgium for Dylan's treatment. Donations are tax deductible as allowed by law. Here is the page with all the info (including my breakdown of our anticipated costs of the trip):

Thanks to the power of social networking, we have a dozen contacts in Belgium now, and many are helping us look for lodging in Leuven. We also have heard from some of you about air miles. I'll be contacting you individually to make arrangements over the weekend. We're getting expedited passports next week, and some of you have offered warm clothing for the kids, too!   Chandler's next play "If You Take A Mouse To School" starts this Saturday (info on the play and tickets at And if you missed it, I posted a video of him singing Michael Jackson's "Heal the World" in church on Sunday here:  

The latest (10/6: 7 a.m.): We heard from Belgium via email late last night that they were able to make the vaccine and we should plan to be there in the hospital on October 14. We have asked for another week as Chandler is involved in his play (link below). We may also need time because our neurosurgeon (who emailed last night) and oncologist now agree: there is a second tumor and it needs to be treated with gamma knife. We meet with the radiologist at UCLA on Thursday to schedule that. We are all very conflicted emotionally. Chandler burst into tears when he heard. He really wants to stay. Jana and I are upset about the second tumor. One tumor can just be an anomaly, but two means there could be more too small for MRIs. More info to come....  

The latest (10/5: 8 a.m.): We meet with the radiologist at UCLA on Thursday to discuss radiation options (see yesterday's blog for more info). We're still waiting to hear from Belgium as to whether or not there is enough tumor tissue to create a vaccine (and if we should plan travel). 

The latest (10/4: 6 a.m.): All the relatives have left and, now that Dylan's back in school, things are relatively back to normal for now. However, our oncologist and the neurosurgeon do not agree about how to treat Dylan after surgery. The oncologist still thinks the second spot is a tumor and that it needs to be treated with gamma knife. The neurosurgeon thinks Dylan should get "fractionated stereotactic irradiation" to the tumor bed, but the oncologist feels this is unnecessary. We meet with the radiologist at UCLA this week to discuss his own opinions. We also still await word from Belgium as to whether or not there is enough tumor tissue to create a vaccine.

Chandler had a big performing weekend, giving a preview of his play If You Take A Mouse To School at Children's Book World on Saturday (info on the play at, then singing Michael Jackson's "Heal the World" in church on Sunday, and getting standing ovation! You can hear him sing here:

The latest (10/1: 7 a.m.): I'm writing this just a little before taking Dylan to school today! He met with the neurosurgeon yesterday, who cleared it, but said no recess or PE for a few months, which made Dylan sad to hear. The neurosurgeon was so sold on Belgium, and recommended focal radiation immediately. We're checking with our neurologist at Children's Hospital and also have a meeting set with the radiation doctor at UCLA hospital. We went out to dinner last night with all our family that's in town, to Marix, one of our favorite restaurants.  It has been so nice, especially for Jana, to have family here to help around the house, and have fun with the kids. Chandler's play starts soon, with a preview this Saturday morning at Children's Book World. More info at  

The latest (9/30: 7 a.m.): We had another home-cooked meal delivered last night from another school mom, and yet another made Chandler his lunch for a week. With so many meals covered, the boys' cooking coach decided on dessert last night -- the boys made candy sushi out of fruit roll-ups, Rice Krispie treats, nerds, baby M&Ms, Swedish Fish and Gummy worms. The boys were in heaven. But we were all bummed to learn that Stacy is moving to New York in a few weeks. We will miss her greatly! At least she's moving to one of our favorite cities, and maybe we'll get to see her next summer. 
Two classmates of Chandler's had a "Lemon-Aid" stand to raise money and gave it to Chandler for being such a great big brother to Dylan. It made him feel so special!
It has been a huge help to Jana to have her mom and sister in town. My sister and her husband are in town now, too.   

The latest (9/29: 7 a.m.): While Grandma Sue and Aunt "Linda Binda" stayed with Dylan, Jana went to The Price is Right yesterday. But she and her friends were bummed to learn that, since they were in the VIP seating area, they were not allowed to be contestants. But since they were sitting right behind the contestants, they got on air a lot! The show airs October 13, she and her friends are wearing shirts that say "Got Price?" on the front. My sister and her husband arrive in town late tonight. My other sister and her bf made a hilarious stop-motion video of her surfing in their back yard on a "magic boogie board." The boys loved it and watched it over and over. Another school family brought us dinner last night. We are so grateful for all the love and support people have shown us.

The latest (9/28: 7 a.m.): Dylan's adventures continued yesterday as he beat the heat at a friend's house (we don't have A/C in our apartment). For those of you who weren't in L.A., yesterday was the hottest day on record, ever. My car decided to burn out a cable that runs the air conditioning motor, and the dealer wanted $2,500 to fix it. Think it's time for a new car. (Then the A/C at work went out, too!) Jana goes to The Price is Right with some friends (not sure when it will air, but I'll post when I find out) -- maybe she'll win me "A NEW CAR"!

Jana's mom and sister arrived last night and we ate at Souplantation for dinner, one of the kids' favorites. The boys' cooking coach, Stacy, came to the restaurant to give Dylan a get-well card and a small cheesecake that she had intended to bring to the hospital -- but he got out so fast! She's coming to the house Wednesday night to make candy sushi.  

The latest (9/27: 7 a.m.): With Dylan home now, we turn our sights to Belgium. The tumor sample is sent today and we're waiting to hear back from them about whether or not we should travel over there for the vaccine treatment. Dylan tried to go outside a couple of times yesterday, but it was too hot, even for a playdate, so he came back home and got in the pool up to his chin. His children's choir friends made a poster-board get-well card for him. So nice! Last night friends came over again and made us dinner and they watched Spy Kids 3D with the boys. Dylan can't return to school until next week some time, but he can have visitors to the house (call Jana to schedule). Jana's mom and sister come to town tonight and my sister and her husband come later in the week to lend a helping hand.   

The latest (9/26: 7 a.m.): Dylan is home! They finally discharged him around 10 yesterday morning. He came home and immediately wanted to play the Wii, which they didn't have in the hospital. Chandler's teacher from last year came over and brought a delicious lunch to the house, and then last night a friend of Chandler's and her mom brought pizza makings. During the day, a haunted gingerbread house kit came for the boys from my sister, so they spent the day building and decorating it.

We are tapering off the steroids that Dylan was taking, so hopefully his mood will improve. He has a slight headache this morning, but said no to Tylenol, so it seems like he's doing really well with recovery. The tumor tissue gets sent to Belgium tomorrow and then we wait to hear back if it's enough, and if we should plan to go over there....  

The latest (9/25: 7 a.m.): Jana spent the night with Dylan last night. He had visits from his pediatrician, his therapist, and his sensei from the karate studio. The friend who drove them to the hospital came earlier in the day, as did a friend from the fire station who had LAFD T-shirts for both boys. I was also able to bring Chandler to visit, and we all read through dozens of get-well cards from kids at their school. We had another emotional roller coaster when one doctor came in, saw Dylan was doing so well, and decided Dylan could go and so we excitedly started packing. Another doctor came in and said we couldn't leave until the next day. I have never seen Dylan so upset. They had just given him his steroid medicine, which makes him irritable and angry. He kept screaming and crying. It was horrible. He had tried so hard to meet the doctors requirements for discharge and was so disappointed. But this has happened to us before, it is not a surprise. Dylan hopefully slept through the night. I passed out despite a loud party at the neighbors' house, but am still exhausted. Jana must be at least twice as tired as I am. I'm just waiting for them to call and say "Come get us!"

The latest (9/24: 7 a.m.): They wheeled Dylan into the room we had three years ago, the "Presidential Suite" in the Pediatric Intensive Care Unit where we were stuck with complications for weeks. Many of the same nursing staff were still there, which helped with the whole feeling of helplessness. They moved us down from the 6th floor to the 4th floor, which is the general pediatric floor, and which is a good sign, because the word is Dylan may get to come home as soon as tomorrow. The nursing staff are all commenting on how good Dylan's head looks and how well he's doing. Happily, siblings can visit patients on this floor, so Chandler can come see his brother.

The side of Dylan's head is swollen, but looks better today. They have him on steriods (Dexamethasone) and other drugs: He was on morphine yesterday, but now is only taking Tylenol for the pain. They're giving him Zantac for heartburn from the steroids. He had some nasusea yesterday, but they never gave him Zofran since he never threw up. If he doesn't have a BM today, they may have to give him some laxatives. They took the board off his arm that he hated. I stayed with him yesterday and last night, and brought all his Ben 10 movies that he loves, as well as some storybooks and toys for him to play with. Even so, he was restless and couldn't find anything to entertain himself. I think his inability to console himself was a result of the morphine. He also napped a lot yesterday and slept fitfully through the night. I am exhausted. Dylan seems much better today, he is watching Scooby Doo right now.

Our pastor came to visit and pray over Dylan. Dylan slept through the whole visit, the little heathen! But seriously, he was zonked out because he had another MRI yesterday and was groggy from the anesthesia. Literally five minutes after the pastor left, Dylan woke up and ate like a horse! The steroids make him hungry, but it's also good for him to fuel up and get better as soon as possible. We have not heard back from the neurosurgeon about the MRI results, but since he thinks he got all the tumor out, we are hoping no news is good news and the MRI just confirmed this fact.

The children's minister from our church also came to visit, and she went out and got me dinner during the room move. She tried to entertain Dylan, but he wouldn't take his eyes off my cell phone, upon which he was playing BrickBreaker. It was nice to have company and the boys really love her, so I am so grateful for the two visits.  

The latest (9/23: 6 a.m.): Dylan's surgery went smoothly yesterday (medically speaking, it was a craniectomy, trephination, bone flap craniotomy and excision of brain tumor). Jana and he went to Cedars in the early morning (driven by a friend - thanks, Pam!), and checked in around 6:15. The neurosurgeon told her that he had looked at yesterday's MRI and that the tumor had grown slightly, and had started "fingering in" to the brain tissue, so it was essential to remove the tumor immediately.

Meanwhile I took Chandler to school, and then sped out to Cedars to try to catch Dylan before they took him in to surgery. Readers following this blog already know how much anxiety Dylan had and, when they were taking him away from Jana, he begged her to come with him, but she was not allowed to go any farther. He must have been so scared, it breaks my heart to think about it. I never made it, he was put under by the time I got there.
Dylan was in for a little more than four hours. Jana made friends with most of the other people in the waiting room, as is her wont. We got periodic updates from the operating room staff, and I was able to post those, for people who wanted to know exactly when to pray for or think about Dylan. Finally the neurosurgeon came out, said Dylan was doing fine, and that he got out all the tumor!
The neurosurgeon added that Dylan will have no side effects, such as the stroke he had three years ago during brain surgery, and that we are clear to send the tumor over to Belgium as far as the hospital politics goes. However, he said there was not enough tumor to meet the Belgium minimum of 1.5 cubic centimeters. There was just less than 1, so I emailed Belgium to ask what to do about this development. They said to go ahead and send it and they would give it a try, and see if it's enough to create a vaccine. So we may need to wait a week or more to know about Belgium.
The neurosurgeon recommends localized radiation on the tumor bed, as does our oncologist. The oncologist also wants to talk about open studies and non-toxic drugs we can give Dylan to try to fight off any "occult disease" that is in there hiding. We meet with the oncologist next week to go over options. This would mean doing the gamma knife at UCLA most likely, which is now done outpatient, so we'll contact the doctors there before the weekend to inquire about scheduling that treatment. Dylan will have a post-op MRI today to ensure all tumor is gone and once more to be sure they don't see anything else of concern.
The neurosurgeon then said Dylan would be moved to the PICU, so we went there to wait for him. He warned us that Dylan is on steroids, which will make him ornery and hungry. Dylan woke up soon after they brought him down to the PICU, groggy and thirsty as heck. He could only sip water from a sponge, since, according to the nurse, the anesthesia they had used can make him nauseated. This really made him mad. He demanded to drink water from a cup! He was also furious at a small board they have strapped to his wrist to take blood more easily and tried to rip it off his arm! Eventually he calmed down, and was allowed to drink before the time that the nurses usually allow drinking liquids. Before long he was "pigging out" in the words of his mother (I had to pick up Chandler from school, so I missed the feast). In fact, Dylan was recovering so well after a couple of hours that they said they may let him go after three days instead of five!
Here is a picture of him about an hour after waking up:
Sadly, they are being strict about young visitors (no one under 12, including siblings), so Chandler is crushed that he cannot visit his brother. We are looking into getting him an exception, but even if they stay firm on it, hopefully we'll just have Dylan home on the three-day schedule.
Last, but not least, we launched the website for Chandler's next play, "If You Take A Mouse To School," coming up in October. Go to for more info and to buy tickets!  

The latest (9/22: 6 a.m.): Dylan and Jana just left for the hospital. Once I take Chandler to school, I'm going to join Jana -- by the time I get there, Dylan should just be going in to surgery, at 8:30-ish. During the MRI he got yesterday, they put little markers all over his head, that look like Life Savers, to give the surgeon a "GPS" like map of exactly where the tumor is in his head. This helps with the accuracy of the drilling. Here is a picture of Dylan with his new "eyeballs," as he calls them:

We may have some MRI results today, and the surgery should also provide some information to us that will help us know more about our next steps. Of course, we just want for Dylan to make it through the surgery alright and have put out calls for prayer and positive thoughts/vibes to everyone we can reach.
Watch my updates for news and tomorrow's blog for more details....  

The latest (9/21: 7 a.m.): Jana just took Dylan to Cedars Sinai for an MRI. He will return and sleep here tonight; surgery is tomorrow. The MRI is to establish the coordinates of the tumor for the neurosurgeon -- they put what look like Life Savers on Dylan's head to lock down the coordinates. He has to wear them overnight, so we are hoping he leaves them alone! I'm covering for Chandler today and dealing with getting the MRI over to Children's to look at the second spot that was concerning. We are seriously hoping it is not a tumor and is just scar tissue from radiation, as the neurosurgeon suspects. Just one tumor would be a great thing, because it will mean the spread is only to this one spot and not possibly many locations. If it is a tumor, it is inoperable, so we would go at it with the gamma knife (at UCLA Children's Hospital since Children's doesn't have a gamma knife and UCLA is convenient to us). So we won't have results from the MRI today, possibly not till later in the week.

Thanks to all who have commented and the many who have not but have still stood by us spiritually. We appreciate all the support, worldwide, for our little warrior!  

The latest (9/20: 7 a.m.): I am so proud of Dylan for earning his purple belt in karate Friday, which means he also gets to wear a black gi. Dylan wanted me to make the photo I took of him my main profile photo, so I did: on MySpace, Facebook and the home page of Dylan's site. He is the bravest warrior I know and I want to honor him with this image in full regalia.
Not to be upstaged, Chandler lost TWO teeth on Friday, pulling them out himself, so the tooth fairy is a lot poorer now. :)
We had a fun weekend, including a playdate with another family Saturday night and a romantic dinner for me and Jana on Sunday night, courtesty of our CRO at work who gave me a gift card. We went to Gjelina, where we had been for our anniversary back in June, when we sat next to Ben Affleck and Jennifer Garner. Jana also got a gift massage at Burke Williams from a friend just prior to our date, so it was a very good day for her.
We have so many giving folks who have helped us through this ordeal. People have sent us gifts and toys (one boy we know even made Dylan a customized Space Invaders game for Dylan, with all the things he loves in it), people have given blood and platelets, made us home-cooked meals, promised visits to the hospital to keep us company and bring food, commented, called, emailed, texted, IMed and also many who have remained silent have said countless thoughts, prayers and sent spiritual energy and light our way. It's like I need a whole other blog just for all the gratitude we want to express to everyone.
We are getting ready, and getting nervous, about the surgery on Wednesday. Dylan has expressed concern to both me and Jana about it. He told me that he is worried that he will have another stroke (which happened during the first surgery -- he had to learn to eat, stand, walk, all over again). The way he put it is he thinks the doctors took out his brain and made him "stupid." We have assured him that a stroke is not possible and that he's one of the smartest kids we know.
Dylan has a pre-op MRI tomorrow morning and we hope the results will make the second area of concern from the MRIs clear: that it's either tumor and needs to be dealt with, or that it's not and we can move on to the next treatment.  

The latest (9/17: 7 a.m.): I met with Dylan's neurosurgeon yesterday to get some answers that we didn't get the day before. The meeting was brief and informative.

He said that he's trying to work out inter-hospital politics to be able to send tumor samples to Belgium for them to create the vaccine for Dylan. He is not certain he'll be able to get the IRB board at Cedars to approve the tissue transfer. He is also not certain there will be enough tumor to send (they need at least 1.5 cubic centimeters of it), based on the last MRI. The upcoming baseline MRI on Tuesday will probably tell us if the tumor has grown large enough for that sample size limit, but we probably won't know for sure if there's enough until after the surgery. He also expressed concern that the vaccine has not been shown to be successful with medulloblastomas, the type of brain tumor that Dylan has. However, Dylan's oncologist feels that Dylan's subtype, anaplasic medulloblastoma is a different thing altogether, that the vaccine has not been tried on anaplastic, and that it may be effective for Dylan.

Tuesday's MRI might also tell us for sure if the second spot is a tumor or not. The neurosurgeon will not be able to tell while he is inside Dylan's head, it is not in a location he can easily access, so we have to rely on the scan. He and his radiologists do not think the second spot is a tumor, but scar tissue from radiation.

Lastly, he said to keep our eyes on San Francisco because they are going to be opening a study soon that may be effective as well. The oncologist had also mentioned this, so if we do go to Belgium, this would be the next step. If not, that may be our last resort.  

The latest (9/16: 7 a.m.): We did not meet with Dylan's neurosurgeon yesterday, as we had thought, but just with a nurse to fill out paperwork, to go over some basic pre-surgery instructions and for them to take Dylan's blood. We did learn that the surgery will take 4 hours and starts Wednesday at 8:15 (although we have to be there at 6:15), and that he will be in the ICU for about 5 days afterwards (hopefully coming back home on Sunday).

Since the neurosurgeon had expressed concerns about sending tumor samples to Belgium, we wanted to square that all away with him, so I requested a meeting one-on-one and have that this morning. He is also not sure there will be enough tumor to send a sample, so I need to discuss that with him also. We also want to address the second tumor with him, since he thinks it is only scar tissue from radiation. The neurosurgeon also said to Jana on the phone that he wanted to give Dylan platelets the night before the surgery, but the nurse did not mention that. Lastly, Belgium needs serology of Dylan's blood (to basically prove he doesn't have any STDs, lol).

If you are not familiar with our story, welcome to the fun world of coordinating between medical institutions. Parents often have to take an active and even aggressive role in fighting for their children's lives. Adding in the fact that one of these institutions is halfway around the world makes it exponentially more difficult. Ugh.

Jana took Dylan to the pediatrician in the afternoon, another prerequisite for surgery at Cedars. The pediatrician noted an ear infection, but will wait until after the surgery to check it again. She also noted that he has barely grown in the past three years, maybe two inches, and that he may not be much taller than 5'1" if he makes it to adulthood, as a result of the radiation to his spine. He is also starting to go up the curve regarding his weight, which is partly muscle which he had lost as a result of a stroke, but also a result of a candy and sweets-filled summer, so we have to watch his calorie intake. The pediatrician took Jana aside and reminded Jana of just how lucky we are for Dylan having survived twice, and questioned the decision to go to Belgium. If these are the last few months of Dylan's life, do we really want to spend them abroad, away from friends and normal life? We aren't so sure ourselves, and are still going back and forth about this, perhaps our biggest decision of this whole ordeal....

The latest (9/15: 7 a.m.): We meet with Dylan's neurosurgeon this morning to go over next week's surgery (scheduled for the 22nd). The neurosurgeon does not believe there is a second tumor, but to be sure, he has ordered another MRI for Tuesday the 21st. Even if it is there, we will likely have to gamma knife it as he said he could not access it where it is supposed to be.  

The latest (9/13: 6 a.m.): Thanks to those of you who shared my link to info about donating blood and platelets. If you tried to call Cedars Sinai last week after my blast and were turned away because of missing doctor's orders, please try again. The paperwork has been straightened out and you should be able to schedule an appointment. Please see this page for information:
Friday afternoon we were honored to be invited to attend the second Stand Up To Cancer event, which many of you at least heard about, if you didn't watch. I've never seen so many celebrities in one place, from all eras, and all areas: film, TV, music, sports, the news, even politics with a cameo from Obama himself! The music was great and the receptions before and after were fun; the stories told during the show were touching and we even knew a few of the bald mommas who shaved their heads as a visible sign of support for their kids ... some of whose kids have lost their battles. It was a rollercoaster of emotions for us, hopefully it was also a successful effort. I do like how they are approaching the support of medical research. More about that here:
Saturday we went to the Santa Monica Pier and used a gift card given to us by my co-workers to get the boys their all-day wristbands. They rode all kinds of rides, but the favorite of both seemed to be the bungy jumping station, where you jump on a trampoline and a harness attached to two sets of bungy cords helps you jump really high up. Dylan also went to karate Saturday. He is getting ready to take his purple belt test soon!
The boys start school today and both of them got good teachers. We will need to figure out what to do about school when we go to Belgium for six weeks.

The latest (9/10: 7 a.m.): There was a snafu at Cedars yesterday with the paperwork for donating blood and platelets to Dylan. I hope to get that cleared up today so you all can call and schedule appointments. I will post an update to my status when it's OK to call. Here is all the info you should need:

We are excited to go to the Stand Up 2 Cancer simulcast event tonight. Big thanks to Shari at work for giving us her tickets. Here is a list of those performing/presenting:
and here is the site for the org behind the show. Whether or not you donate, be sure tune in (8 pm ET/PT, 7 CT on just about every channel) and watch for us in the crowd!  

The latest (9/9: 6 a.m.): We heard back from Dylan's neurosurgeon with a new date for surgery, September 22 so that Dylan can attend his first day (and now week) of school. The doctor said Dylan could return to school about two weeks after the surgery. We aren't sure if that means he's hospitalized for those two weeks or not. We'll find out more about what to expect. I will also post information about donating platelets at Cedars Sinai, but need to wait until we get a little closer to the surgery, just so we're sure to have some on hand when we'll need them. Basic info can be found here: He will need another MRI to serve as a baseline for pre and post surgery. That hasn't been scheduled yet.

Poor Chandler woke up sick to his stomach today, and Dylan has had a cold, but is getting over it. Looks like they'll have a chillin' illin' day at home today.  

The latest (9/8: 9 a.m.): [blogging a little late today as the boys and I were up late watching one of their favorites, Mr. Bean.] We heard from Dylan's neurosurgeon, but he scheduled the surgery for the 13th, which is Dylan's first day of school. We have asked if he can push the surgery back to the next possible day just so Dylan can at least say hi to his classmates and new teacher before being out for a couple of days (or months if we decide to go to Belgium, which is likely).

At least this means we can all attend the Stand Up 2 Cancer event. Be sure tune in and watch for us in the crowd: it's on just about every network on Friday (8 pm ET/PT, 7 CT)!  

The latest (9/7: 7 a.m.): Labor Day weekend was fun: I took Chandler to a Greek play at the Getty Villa, at his insistence, not mine (though I liked it). Saturday I took the boys to the California Science Center to see the IMAX 3D movie about the Hubble space telescope, and the Mummies of the World exhibit, and explore many of their other exhibits. Labor Day itself we spent at a friend's house, until Chandler had rehearsal for the current play that he's in (website launching soon!). The boys don't start school until next week.
Dylan's neurosurgeon should be getting back to us today after seeing the latest MRI as to whether he can take both tumors out. One is easily operable, the other harder to reach. We also need to find out when the next available appointment for surgery is, as well as how long to expect Dylan will be in recovery afterwards.
We also spoke with the Belgian doctor who runs the vaccine therapy I mentioned in my previous post ("Adjuvant dendritic cell-based tumour vaccination"). It was a sobering call as we learned that the type of cancer Dylan has does not seem to respond to this approach, but Dylan's case could always be the anomaly. The vaccine would require spending six weeks in Belgium, with follow up visits once a month for a few months, and quarterly after that. A lot of travel, but the medicine is free of charge, and the accomodations are not expensive. The six weeks while we are in Belgium only require a day per week outpatient at the hospital, so we can travel in Europe and make an adventure of it (and see friends of ours who moved to Paris). Side effects apparently are minimal. The doctor did caution, though, that we should travel to Belgium as soon after the surgery as possible, to avoid as much further spread and growth as possible.
We feel we should stay together as a family through this instead of split up; but if we do leave in the next couple of weeks, Chandler's in a play, we have fun social events planned, we'll lose income and have to live out of pocket. But we feel we have to give it a shot, and try to keep creating great memories as we have been trying to do. We should also hear from Dylan's oncologist about any additional thoughts regarding the vaccine, and what kind of paperwork we need to sort out before making the move.
In more exciting news, this Friday, we four have been invited to attend the star-studded Stand Up 2 Cancer event. Here is a list of those performing/presenting:
and here is the site for the org behind the show. Whether or not you donate, be sure tune in (8 pm ET/PT, 7 CT) and watch for us in the crowd!
And speaking of fundraisers, we are also attending another event on Sunday for a local pediatric brain tumor support group called "WeCan." They put on a family camp every year that the boys love, the next one coming up in October. The event is Sunday, and information is here, or you can just donate to them online:  

The latest (9/1: 7 a.m.): Jana and I met with Dylan's oncologist yesterday at Children's Hospital to go over the MRI results and our options (thanks to our friends who took the boys home while Jana was busy). While the oncologist reiterated that this relapse is very bad news, he was elated with the results of the most recent scan, given that there was nothing in the spine MRI and fluid, as well as nothing new in the brain scan. He was also glad the two tumors in the brain are growing so slowly.
He wasn't sure if the second tumor is a candidate for resection -- the first one is relatively easy to get to, but he defers to our surgeon on the second one. (I dropped off a copy of the MRI with Dylan's neurosurgeon, who is at Cedars Sinai, after the meeting. We will meet with the surgeon soon.) If the second one is operable, it will definitely be a more complex and delicate surgery.
If it is not operable, another option is to use a gamma knife, which uses highly focused beams of radiation to blast the tumor and those cells only. There is possible risk of damage to about 1-3 mm of healthy tissue, which in this area of the brain might make Dylan susceptible to seizures for a while after surgery. This treatment is done at UCLA where we already have had radiation and know the staff well. More information on gamma knife:
Then we discussed the open studies about which he had canvassed his associates around the country. He said most of the studies Dylan qualifies for have a minuscule likelihood of cure, but if we decided to try one, we would need to get Dylan's platelets up first, and that may take another month or two anyway. (The surgery is not restricted by platelets since they give Dylan an injection of them before and after the surgery until he is discharged; same goes for gamma knife.) Each study will take a couple of months to complete, but most only require a few days per week outpatient visits; and many of the studies at this level are available at Children's Hospital Orange County, or at UC-San Francisco, so disruption to our normal life and separation of our family would not be as serious as we had feared. More info on the most promising study, uses a "notch inhibitor" which is a drug pazopanib, a VEGFR antagonist that is nonmyelosppresive (which means it will go after cancer cells without having much impact on Dylan's platelets):
There are also a few drugs outside of the studies that might work, although Dylan's platelets are having trouble recovering after all the treatments he's had over the past three years; so he needs a medicine that he may be able to tolerate. The doctor mentioned one called Revlamid, or Lenalidomide; info here:
An option we haven't discussed for a while is a new therapy available in Belgium  (Leuven, near Brussels), using a vaccine approach (""Adjuvant dendritic cell-based tumour vaccination"). It is an entirely new "modality" for cancer treatment (in addition to the standard three: surgery, chemo and radiation). They take a sample of the tumor and inject it back in as a vaccine, the doctor said. It is a six-week therapy, so I think we would all travel together. Dylan would be a perfect patient for this program, he said. Even better, he added, all hospital expenses are paid for by the state, as is our lodging; wejust need to cover airfare. Also, some dear friends who had twin boys our sons' age, moved to Paris a few years ago (the boys still Skype with them) and it would do Dylan a world of good to see them again. Here is a good video with more information about this tumor vaccination modality, under Dr. Stefaan Van Gool: And this recent paper he co-published gives the results of his work up through a couple of months ago:
So the plan we agreed on is to remove the one tumor, if not both (a meeting with the surgeon will help decide this; if the second tumor is inoperable for any reason, we gamma knife it). Then we send a sample of the pathology to Belgium and, six weeks after surgery, go over there. This puts us in Belgium around November, returning in time for Christmas. Then upon our return, we would try any study that is still open and that we qualify for, as well as the Revlamid. Trying all the treatments, given Dylan's youth, strength and the status of these tumors, is preferable to only a couple of them. As our oncologist said himself, "You should be looking back at this moment in five or ten years and wondering which treatment it was that cured Dylan."   He finished saying that the one thing that has kept him going for the past 30 years of leading cancer research has been the pleasant surprises he's had of the kids who have survived who weren't supposed to. We took great hope in that thought.  

The latest (8/31: 7 a.m.): Chandler won a lead role in the next play at Morgan-Wixson, If You Take a Mouse to School. This is his fifth production there in a row! He plays the boy who befriends the mouse. Save the dates, performances are: Saturdays and Sundays, 11 am, from October 9 through October 24. Way to go, Chandler!

Today we meet with our oncologist to go over next steps and make a plan for Dylan's treatment. I'll update the blog tomorrow with our options and possibly also our decisions.  

The latest (8/30: 7 a.m.): On Friday, Dylan and Chandler received yet another gift basket from our Ad Operations team, with passes to the park at the Pier and Medieval Times restaurant, a gift card to Aahs and Kay & Dave's (restaurant), lots of candy (yum), and Dylan's favorite: Pokemon cards. We spent the weekend at Mammoth Mountain, in a luxury condo ( courtesy of another cancer mom who had seen our bucket list from a few weeks ago. There was a rock concert going on all weekend, and tastes of all the restaurants from here in Mammoth Village as well. We went to the top of Mammoth in a gondola and ate lunch at the summit. Dylan climbed a huge rock wall at the Adventure Center at the foot of the mountain. We also went to see a huge crack in the earth from an earthquake fault and rode the local trolley to look at the lake area. The (3!) hot tubs on the roof and game room in the basement (pool, ping pong, and foosball) were favorites for the boys, as was the fact that every single room in the condo had a television! We meet with our oncologist, who is back in the country, tomorrow afternoon.  

The latest (8/27: 7 a.m.): Jana took Dylan back out to the hospital for another long day so he could get his spinal scan. Last night we heard that the spine is clean of any tumors, as was the fluid that they took from Dylan's head. This is very encouraging, so now we need to focus on those two spots in the brain, most likely through surgery. We meet with our oncologist next week to finalize our plan. Chandler stayed at a friend's house all day and their mom made us a delicious dinner as well.

We head up to Mammoth for the weekend, staying courtesy of a friend of ours. And thanks to some co-workers at the Fox Audience Network, we'll be able to cover gas and food with an Amex gift card they gave us yesterday (their gift package also included Disneyland and Universal Studios VIP passes and a Captain America action figure that Dylan played with all night).

The latest (8/25: 8 p.m.): We took Dylan out to Children's for his MRI this morning, scheduled for 8:45 a.m. Chandler had never seen them put Dylan under using propofol, and sitting inside the huge MRI machine, he was a little scared and saddened by the sight, as I am every time. We have a little game where Dylan sings the alphabet when they start giving him the drug. He got through to X this time. He is determined to get through to the end of the song some time!

He finally went under at 9:45 and then Jana, Chandler and I settled in to wait for a few hours until the brain and spine scans were done. Shockingly, the pager they gave us buzzed after only an hour. We went in fearing the worst, only to find that our doctor had accidentally only ordered a brain scan and not a spine scan, and to put salt in the wound, the MRI schedule was booked up for the rest of the day.

We went up to the clinic discuss the MRI brain results with an oncologist who is filling in for our usual one (who is out of the country on vacation). The doctor told us that the one tumor has grown a little in the past month, and that the other fuzzy spot that they had concern about has also grown and is pretty definitely another tumor. Thankfully, there is nothing new visible. The two tumors are both operable, relatively easy as far as brain surgery goes. Dylan and Chandler kept the doctor and nurses entertained all day with their sparkling wit and other talents, which helped the day go by faster.

The doctor said we do need to go ahead with a spine MRI and also get some spinal fluid either with a lumbar puncture (commonly referred to as a spinal tap) or by withdrawing fluid directly from the shunt in Dylan's head. We opted for the latter as we could do it right there and not have to put Dylan under again and also not have to return for yet a third procedure. We should get results on the spinal fluid tomorrow (whether or not there are any detectable cancer cells floating around in there). The basic options are to operate and remove the two tumors, to use focal radiation (gamma knife) on them, and/or to try one of the Phase I open studies that are available in other cities (which means our family splitting up once again for treatment that is a longshot, and during school no less).

These studies require that Dylan's platelets be at 100,000 level. Today they were at 81,000 which is higher than a month ago (around 65,000), but not high enough, so even if we qualify for one and decide to start one, we still have to wait a few more weeks, maybe even a couple of months.

We were told to go back to the MRI department to schedule the spine scan, and they told us happily that they could do the MRI that night if Dylan did not have anesthesia. He has done scans before, so we decided to go for it, but we had to wait for three hours to get our time. We weren't happy about that, Dylan was the most upset as he was ready to go home, but we hunkered down for the wait, got the kids a movie to watch and some popcorn to eat to make it a little less strange. After about an hour, the MRI department called us back in to say that, actually, they couldn't do a second MRI the same day because they couldn't give Dylan a second injection of the contrast fluid that they use to make the cancer cells stand out better, and so to return on Thursday for the spine scan. Frustrated and relieved at the same time, we left for home.

We finally got home at dinner time, and a good thing that, because a friend of ours (her daughter was in the play "Many Moons" with Chandler, graciously cooked us a meal for dinner and dropped it off shortly after we got home. It was a huge relief for Jana to have a fully cooked, healthy, vegetarian meal for her family after such a long day of wasted time and incomplete results. Chandler said, "She is so thoughtful and considerate to do that for us." (Thanks, Moye!)

We should know more about the bigger picture tomorrow after we get the spinal fluid results as well as the spine MRI.

The latest (8/25: 8 p.m.): We took Dylan out to Children's for his MRI this morning, scheduled for 8:45 a.m. Chandler had never seen them put Dylan under using propofol, and sitting inside the huge MRI machine, he was a little scared and saddened by the sight, as I am every time. We have a little game where Dylan sings the alphabet when they start giving him the drug. He got through to X this time. He is determined to get through to the end of the song some time!

He finally went under at 9:45 and then Jana, Chandler and I settled in to wait for a few hours until the brain and spine scans were done. Shockingly, the pager they gave us buzzed after only an hour. We went in fearing the worst, only to find that our doctor had accidentally only ordered a brain scan and not a spine scan, and to put salt in the wound, the MRI schedule was booked up for the rest of the day.

We went up to the clinic discuss the MRI brain results with an oncologist who is filling in for our usual one (who is out of the country on vacation). The doctor told us that the one tumor has grown a little in the past month, and that the other fuzzy spot that they had concern about has also grown and is pretty definitely another tumor. Thankfully, there is nothing new visible. The two tumors are both operable, relatively easy as far as brain surgery goes. Dylan and Chandler kept the doctor and nurses entertained all day with their sparkling wit and other talents, which helped the day go by faster.

The doctor said we do need to go ahead with a spine MRI and also get some spinal fluid either with a lumbar puncture (commonly referred to as a spinal tap) or by withdrawing fluid directly from the shunt in Dylan's head. We opted for the latter as we could do it right there and not have to put Dylan under again and also not have to return for yet a third procedure. We should get results on the spinal fluid tomorrow (whether or not there are any detectable cancer cells floating around in there). The basic options are to operate and remove the two tumors, to use focal radiation (gamma knife) on them, and/or to try one of the Phase I open studies that are available in other cities (which means our family splitting up once again for treatment that is a longshot, and during school no less).

These studies require that Dylan's platelets be at 100,000 level. Today they were at 81,000 which is higher than a month ago (around 65,000), but not high enough, so even if we qualify for one and decide to start one, we still have to wait a few more weeks, maybe even a couple of months.

We were told to go back to the MRI department to schedule the spine scan, and they told us happily that they could do the MRI that night if Dylan did not have anesthesia. He has done scans before, so we decided to go for it, but we had to wait for three hours to get our time. We weren't happy about that, Dylan was the most upset as he was ready to go home, but we hunkered down for the wait, got the kids a movie to watch and some popcorn to eat to make it a little less strange. After about an hour, the MRI department called us back in to say that, actually, they couldn't do a second MRI the same day because they couldn't give Dylan a second injection of the contrast fluid that they use to make the cancer cells stand out better, and so to return on Thursday for the spine scan. Frustrated and relieved at the same time, we left for home.

We finally got home at dinner time, and a good thing that, because a friend of ours (her daughter was in the play "Many Moons" with Chandler, graciously cooked us a meal for dinner and dropped it off shortly after we got home. It was a huge relief for Jana to have a fully cooked, healthy, vegetarian meal for her family after such a long day of wasted time and incomplete results. Chandler said, "She is so thoughtful and considerate to do that for us." (Thanks, Moye!)

We should know more about the bigger picture tomorrow after we get the spinal fluid results as well as the spine MRI.

The latest (8/24: 7 a.m.): My family is finally home! They had a lot of fun in Nashville last week. Some highlights: going on the boat at the lake house, Chandler water skiing for the first time, canoeing with uncle Jack, going bowling and roller skating, the Adventure Science Center (children's museum), the Nashville Shores waterpark (twice), and playing with Grandma's new kitten, Patches. I uploaded a few pics from Jana's camera, but am waiting for more from Jana's sister also. For now see pages 3 and 4 of my August album:
Our oncologist followed up with his colleagues (at UCSF, Children's in Cincinatti and Orange County, St. Jude's, and Johns Hopkins). You can read the text of his email at the end of the first section of Dylan's medical history page here:
Wednesday, the 25th, is Dylan's next MRI, and our decision on treatment. Please keep us all close to heart.  

The latest (8/13: 8 a.m. Eastern Time): We took the boys inner tubing yesterday. I posted a few photos at the link below (at bottom and on page 3):

Dylan has been complaining of neck pain the past couple of days, which concerns us since some of his tumors were in his upper spine in the past. But then again, it could just be a sore neck from watching the Addams family musical (we were in the front row), or sleeping in a weird position, or something else.

Today is our last day here. The boys and Jana go to Nashville for a week while I return to Los Angeles and work. The Nashville clan has a day at the lake planned, and Jana's whole family will be there! I will update as often as I get info from Jana, and will upload photos when they get back to L.A.
The latest (8/12: 9 a.m. Eastern Time): The boys and I had a blast in the city. We stayed at the famous Algonquin and were met at the door by their infamous cat Matilda, whose birthday it was the next day (Chandler made her a card). I explained something of the history of the Round Table of writers, and their relation to the New Yorker magazine. This came in handy as we were going to the Addams Family musical, based originally on the New Yorker cartoons of Charles Addams, which were reprinted in the playbill.

We went to the Hard Rock for dinner, because I wanted Chandler to see all their Beatles memorabilia. He loves them as much as I did at his age, and without my prompting. Just goes to show he has great taste!

Both boys loved the musical; the cast, costume and story were superb. Chandler liked Pugsley and Dylan liked Lurch. We waited outside in the heat for an hour to get all the cast signatures (except for Nathan Lane's, who apparently doesn't sign autographs. Can you say La Cage Au Fail?!)

The next morning we hit the Empire State Building and went to the observation deck. Chandler and I had been to Top of the Rock last year, but I wanted to show the boys the view from the tallest building in the city. I let them know that I had been there myself when I was their age, before the Twin Towers was opened to the public back in the '70s.

We went on to the Ripley's museum, which Dylan was too tired to visit last year. He really enjoyed the freaky displays, so I am glad I brought him this year. We also swung by Toys R Us to ride their four-story ferris wheel, which was not working when we visited last year. Then we went to lunch at Ellen's Stardust Diner, where the waiters are all wannabe singers; they sing karaoke while you eat. Chandler requested "What I Did For Love" from A Chorus Line, his new favorite, and he even got a brief turn on the mic.

Our last stop before returning to the Hamptons was, of course, Dylan's Candy Bar. The boys got a pound of candy each!

Some highlight photos are here on page 2 of my August photo album:

The latest (8/9: 8 a.m. Eastern Time): We have been racking up fun experiences for the boys and creating fond memories for us all.

Chandler wrote a song and performed it for us. We were all amazed at the maturity of the lyrics. I added the song to his website here and will upload a video of it once I can get it off my dad's camera:

We also went to my sister's house in East Hampton for lunch, featuring vegetables from her garden. We have seen a lot of deer this year while driving around (as well as bunnies and even a turkey!).

We blew up a huge beach ball that the realtor left us and played with it, in the pool first, then Jana and Chandler faced off against Nick (Ann's bf) and Dylan in a soccer match in the back yard. It was a fierce game, but Nick and Dylan eeked out a victory. The ball, alas, did not fare as well and was deflated the next day.

Chandler learned how to drive my dad's dingy, a rite of passage for boys in double digits, and Dylan drove my dad's boat around the harbor as well. My dad also taught Chandler many of the finer points of chess and Chandler beat Jana in a game!

The boys went boogie boarding at Amagansset beach and then spent the night at Ann's house having a fun sleepover with movies galore at night and then a jam session the next morning with Dylan on drums, Ann on tambourine, Nick on guitar and Chandler, of course, on vocals.

Last night we had a special viewing of Chandler's most recent play on DVD, "The Stinky Cheese Man." Chandler even made tickets and pretended we were at a real theater. My parents were so glad to be able to see the play since they can't travel for each one, and were so impressed by the quality of the kids performances, but especially proud and amazed by Chandler's portrayal of the title character.   Tomorrow the boys and I go in to the city to see "The Addams Family" musical and to have a few other experiences in the city (Ripley's museum, Toys R Us, lunch at Mars 2112, a visit to MySpace East offices, and hopefully a trip up to Dylan's Candy Bar before we hop on the bus back to the Hamptons).

Here is a link to photos from the month so far.Keep an eye on this page for new photos as I get them uploaded:  

The latest (8/6: 9 a.m. Eastern Time): The boys had an awesome first day yesterday. They did color by number paintings, huge bubble blowing, swam in the pool and went for a short hike to the water's edge. We're still waiting for swans to show up as they did last year.

This weekend, we plan to have lunch and then go boogie boarding with my sister and her bf, see a concert on the beach, visit a sandcastle contest and spend some more time in the pool.

Keep an eye on this page for new photos as I get them uploaded:

The latest (8/5: 9 a.m. Eastern Time): After 11 hours of traveling (and of me using all my powers to outwit airline seating snafus, clueless NY cab drivers, and whiny Jitney passengers), we finally arrived at the house my parents have rented for the month. The boys spent a little while with my family last night and then crashed. They awoke this morning to a bag full of toys: paint by numbers, Japanese erasers, a massive bubble blower, toys for the pool and our annual puzzle. Rain threatens today, so we may be working the puzzle pretty hard, but the rest of the week looks clear. They also got new hoodies that are apparently all the rage with kids where you zip up your entire head and can see through the black eye holes. Easier just to show you a photo here:  

The latest (8/4: 7 a.m.): We leave today for Sag Harbor -- no treatment in New York, just relaxation. The boys and I go into the city on the 10th for the musical "The Addams Family" and a night at the Algonquin. We bop around the city a little the next day, including a visit to the New York MySpace office.

Speaking of which, another HUGE box of toys arrived from our SVP yesterday (thanks, V!). She is spoiling these boys more than their grandmother (so, mom, the gauntlet has been thrown down, we arrive late tonight with high expectations!).  

The latest (8/3: 7 a.m.): I want to use today's update to thank everyone who has been in our corner with us. We have heard from many of you about how you are praying for us, thinking good thoughts, sending positive energy, they had a prayer circle for us at our church. People have sent gifts and offered their vacation homes to help with our "bucket list." People have offered to donate blood, platelets and funds (none of which we need at the moment, thankfully). The boys have had lots of playdates, too, maybe the most important thing for Dylan's health. Thank you, all.  

The latest (8/2: 6 a.m.): A friend of ours is running the New York Marathon in Dylan's honor to help raise funds for the Livestrong Foundation. Please consider chipping in a bit here:
Jana took the boys and a friend to the Santa Monica Pier on Thursday. They rode all the rides. Chandler was so proud of himself for facing his fear of heights and riding the Ferris wheel. The boys also rode the froggy bounce ride, the bumper cars three times (!), won prizes playing games (a banana doll for Chandler, and a blue and white dog for Dylan that he named Bluto) and gorged themselves on cotton candy. I uploaded some photos from Jana's camera here (scroll to the second page too):
Jana has been taking Dylan to see an alternative medicine practitioner. She has given Dylan various supplements, currently RNA to help Dylan's brain and spine grow. She thinks Dylan will be fine, which helps give her hope.
It was another musicals-packed weekend with Chandler and Jana going to see "A Chorus Line" at Morgan-Wixson before it closed, all four of us going to see "The Wind in the Willows" on Saturday (featuring a friend of Chandler's from his play "Many Moons"), which has four more shows, info here: , and then on Sunday Chandler and I went to "Young Frankenstein" at Pantages ( Hopefully that will keep Chandler satiated on musicals for a while.
We leave on Wednesday for New York. We're staying in Sag Harbor, at the same house as last year, with the pool, dock for my dad's boat, the swan family that comes for bread every morning, and the awesome home theater setup that Dylan can't tear himself away from. Ready to do some relaxing; we definitely need it.  

The latest (7/29: 7 a.m.): Three years ago today Dylan went under the knife to have his brain tumor removed and our lives were forever changed.
I did not have to drive out to Children's Hospital after all. They agreed to FedEx the MRI CD to Cedars for arrival today. Once it's there, I will go over and copy it to my desktop to make any further copies that are needed for second opinions, etc.
A co-worker brought the boys snowglobes from New York yesterday, which will get us excited to be heading out there next week! A picture of boys with them is here:
And the SVP of our department (also New York-based) sent an awesome military set for Dylan the warrior, picture here:
The senseis at Dylan's karate dojo are marveling at how strong he is getting. Jana was next door yesterday looking at furniture when one of the instructors ran over to get her. Another instructor was holding Dylan's feet up while Dylan was doing countless push-ups. The instructors had never seen anything like it!  

The latest (7/28: 7 a.m.): Today marks the three-year anniversary of Dylan's diagnosis. We met with our neurosurgeon yesterday, whom we haven't seen in a long time (which is a good thing!). He wanted to see the scans and offer a second opinion. After a 90-minute wait, we finally got in to see him.
Unfortunately, the CD that Children's Hospital burned had the scans of the spine, not the brain, so I have to go back out to Children's first thing in the morning tomorrow and get the right scans, burn a CD and drop it off at Cedars on my way in to work.
Even without the scans, he offered us some basic options (I'll update again when we get more info from him, after he's seen the scans).
There are some reasons he would not want to operate: If the tumor is near an area with a major blood vessel, for example, he said surgery would not be advisable. So he needs to see the scans.
If it is not, he can remove the tumor and reduce issues, prolonging any problems that may arise until later. He feels this is a better approach than the gamma knife approach. The gamma knife may also not be possible since it is radiation and Dylan has already had a lot and may reach a limit.
But we are still not sure if the second spot is a tumor or not, so I was dubious about how beneficial removing one tumor will be if there is another.
He agreed that we should still go on vacation and get another MRI upon our return, get those to him and hear what he has to say after seeing what has changed.
If there are a lot of tumors then, surgery also wouldn't make sense. He isn't interested in the CSF study to see if cancer cells are floating around in there, because even if there are, he would still recommend surgery to prolong Dylan's life.
My cynical side says: of course the brain surgeon wants to perform surgery. And of course, the oncologist wants to try the latest open study treatments if they're available. And we're stuck in the middle having to make a decision that we may be second-guessing ourselves on forever.
We came by my MySpace HQ after the meeting so I could show Jana and the kisd our new cafe at work. Chandler had a burger and fries, I had a veggie burger, Dylan had pizza and Jana had a cheesesteak sandwich. The boys had chocolate fro-yo with Oreo topping for dessert.
Last night, the boys and I went to Aahs to cash in their gift cards some of my co-workers gave them. After 90 minutes of picking out items, calculating against their gift card totals, putting things back, picking out other things, they finally got exactly what they wanted. Dylan got a lot of Ben 10 things (his favorite TV show, including T-shirts, action figures, and even napkins. He also got a plastic dagger, a sword and a gladiator shield and sword (he is back in warrior mode), and a gummy pizza as a treat. Chandler got some silly bands (all the rage with kids his age, they are shaped rubber bands), little laser lights he attaches to his fingers, an eraser that looks like a "delete" key on a laptop, a Beatles notebook, a John Lennon driver's license, a plasma light that has the little lightning inside that changes when you touch it, and a shadow puppet game that teaches you how to make shadow shapes, with some rainbow Twizzlers and a box of Runts as a treat.
Dylan's picture with his loot is here:
and Chandler's is here:

The latest (7/27: 7 a.m.): We meet with Dylan's neurosurgeon at Cedars today for a second opinion (we are also seeking other second opinions electronically, as is Dylan's oncologist). Cedars is literally five minutes from my office, so I'll bring Jana and the kids back to work for lunch or a snack in our new cafe after. I'll post my notes tomorrow.   Dylan called me in the middle of the day yesterday, wanting me to come home because he was scared. It was heartbreaking, but I talked him through it and he was OK the rest of the afternoon. Right after that, I got a call from an agent at a reputable talent agency in town who saw Chandler in his play and wants him to come in and meet with some of their agents (they handle a lot of the kids on the Disney Channel and Nickelodeon shows that Chandler watches religiously, including the queen of them all, Miley Cyrus).   Some co-workers presented me with two gift cards for the boys to go wild at Aahs, their favorite toy store (and more, they have all kinds of neat things for kids of all ages). They were so excited to get them; I'm going to take pictures of what they buy. We'll probably go to the store tonight.   We went to a friends house last night (schoolmates of the boys) for dinner and drinks and ice cream, and lots of fun. It was good medicine for all of us. We spent some time Sunday putting together a "bucket list" for our family and having those kind of nights with families we love was on the list. We welcome your suggestions for great Southern California experiences to have with kids. Some other items from our list: 
  • Yosemite
  • Grand Canyon
  • Mammoth
  • Joshua Tree
  • California Science Center
  • The Getty (both locations)
  • Play at the pier
  • Hike in the local hills
  • Bike at the beach
  • Paint our walls and get art for them
  • Shopping spree at Aahs (now easier courtesy of the gift certificates)
  • Get costumes and props at Ursula's
  • Have families over for dinner and put on skits for them
  • LOTS of playdates
In case you haven't read it, I archived the blog about Dylan's relapse below (7/22).  

The latest (7/26: 6 a.m.): The boys loved having their aunt in town, and she was glad to be able to help, and to play with the boys, and to come to Chandler's play Saturday. My second cousin who lives in town also came to the show, as did a lot of friends.
The cast party yesterday was at a big park and the kids just ran around and had fun (the epic Red Rover game was a highlight). Another family that we all love that has boys our boys' age just happened to also be at the park riding their scooters, skateboards and bikes, so Dylan joined them while Chandler played with his fellow thespians. He has made a lot of great friends over the past four plays at Morgan-Wixson, and hopes to stay in touch with them over the summer and next school year.
Yesterday Jana forwarded me a post from an online list for parents of kids with medulloblastoma, the type of cancer Dylan has. The woman writing the post told a story that is almost an exact match for ours, but she is a couple of steps ahead of us. It was not a pretty picture.
We have all been on edge. Dylan is having more frequent nightmares; Chandler, already, upset by his play ending, on top of his brother relapsing, has been moody. I have had a lot of trouble sleeping and trouble sticking with my diet. Jana has told me she has a lot of anger, as do I, as well as sadness  (but is doing a lot of yoga to deal with the stress). She and I have had a few hard conversations, the kind most parents never have to have; but we're waiting for the book that our case manager recommended to go into more depth.
I'm following up with our oncologist today to see what, if any, open studies are out there that we may qualify for. If they require travel, we may have to face splitting up as a family again, with Jana and Dylan traveling and Chandler and I staying here so he can go to school. More info to come....  

The latest (7/22: 6 p.m.): We met with our oncologist today to go over the results of the MRI scan they did of Dylan’s brain and spine yesterday. Our case manager (and the head nurse of the neurology-oncology department at Children’s Hospital) called yesterday to say that the spine was clean, but there were a couple of spots in the brain scan. Jana and I wept when we learned the news, and again when we met with the oncologist.   The doctor came in today with a grim look on his face. “The bad news is that it’s real,” he said. There is for sure one tumor in the leptomeninges (outer coating of the brain and spinal cord) near the right temporal lobe; about 8mm x 5mm x 8mm in size. He showed us the MRI, with an arrow pointing to the tumor. Image here: There is another one in the temporal horn that he is not certain is cancer; it may be scar tissue from prior radiation treatment, but his belief is that the one tumor is probably just “the tip of the iceberg” and there are other cells floating around, perhaps growing as tumors, that are too small for MRI detection. Because of the locations of the tumors, they are inoperable, and the doctor said it would not be worth removing them, if he is right about other cells and tumors being in there. Although he is an inveterate optimist, he did not sugar coat things for us: this prognosis is very dire and there are not very many treatments left in the arsenal to use. Typically kids in this situation live for about a year. The case manager, who we have been with since the beginning of our journey three years ago, recommended a book for the first time: one for parents of kids with life threatening and terminal illnesses, called Shelter From The Storm. I ordered it today: However, not all hope is lost: Some potential treatments might be the gamma knife (aka cyber knife) at UCLA, which is non-intrusive and actually pretty easy to administer, on an outpatient basis. However, like surgery, this approach is not going to be helpful if there are many cells and tumors in his brain. There are also some intrathecal treatments into Dylan’s programmable shunt in his head, like we got last year at Sloan Kettering in New York, but those have never been proven to do much more than just prolong the inevitable for a few months (three drugs he suggested are thiotepa, topotecan and etoposide). We may even do both in tandem. These treatments would be given at Children's. He said high-dose chemotherapy and standard radiation therapies are out; Dylan cannot take any more: it’s too toxic, and the cancer that is in there now has already survived the “big guns.” There is no emergency to take action, he also said; we need to take Dylan off the “biological therapy” medications he’s been on so his platelet count can rise. The reason for this is that any open studies that are out there to treat him will require a higher minimum platelet count than he has now, so his body will need a few weeks to manufacture platelets to that level. We will not need blood or platelet donations, though. He has to create them himself and that will take a few weeks. The doctor said we should live a normal life, have fun and create memories. Thankfully, my youngest sister happened to be in town, and watched the boys while we had our meeting, and we four are going to see Chandler in his play on Saturday that I keep promoting on here (go to to get tickets if there are any left!).

We also had planned a vacation to New York in August. He said to keep that trip and go, and we have scheduled another MRI upon our return for August 25 to see what has happened to the tumors, or if there are any new lesions. A few days later, they will also do a lumbar puncture (spinal tap) to see if any cancer cells are floating around in Dylan's cerebral-spinal fluid.

They do not think the tumors will grow while on vacation to the point that we see any symptoms, but we should watch out for any minor seizures, not with shaking, but where Dylan suddenly freezes for a moment. In that case, we need to get him to an ER immediately. We have a CD of the current and previous MRIs to take with us, as well as the MRI report that the technician wrote up. The doctor is going to email some colleagues tomorrow to find out if there are any cutting edge treatments of which he may be unaware. He knows of a couple studies for kids with at least one recurrence of this kind of cancer, but is not sure if they are open (one of the most promising has the fun name of the “Sonic Hedgehog Pathway Inhibitor” but he thinks that study is on hold). He has also ordered new tests of the tissue that was resected from his brain three years ago (almost exactly: it was July 29, 2007 that he underwent his first surgery to have a golfball-sized tumor removed). The silver lining is that this relapse took longer to manifest than the first one did, which is rare; and Dylan is strong and has gained back a lot of his energy since the last MRI showed any tumor growth. Also relatively good news is that they have caught this fairly early in the stages, instead of finding it through symptoms Dylan might show.  They also both mentioned the fact that we have a huge network of support -- one they have witnessed first hand -- to rely on, and that is no small benefit to families going through such suffering. The last thing he mentioned is that, whatever the statistics and odds out there are, the treatment we try only needs to be effective in curing cancer for one person: Dylan. That's the only number that matters to us. We asked if we should tell the boys about it. They both were of the opinion that it is no good keeping it from them; kids pick up on the tension and know something is up. It only does them a disservice to keep the truth from them as it will only increase their own anxiety by not coming clean. After getting advice from both of them about what and how to tell them, we told the boys this afternoon the MRI was not clean, there were spots, but for them not to worry about it, because we will do the worrying for them; and the doctors and nurses have their back and are going to do all they can to beat this thing once again. Dylan seemed to take the news hard: he had just awoken from a nap when we told him, and he slunked back to bed and back to sleep. Chandler was, as usual, more dramatic about it: “I quit!” he shouted, and he screamed into his pillow and repeatedly punched the punching bag we got from Dylan's karate dojo. We appreciate all the comments, emails, texts and phone calls from you all; thank you for your prayers, thoughts, energy, vibes, mojo, juju, words of encouragement and offers to help. We are OK for now, but are not shy to ask for help if and when we need it, so please keep the Updates page bookmarked for the next couple of months as we learn more, and I’ll do my best to keep you all updated. On the brighter side, Dylan lost a tooth today that he has been working loose for a couple of weeks now, and is excited to see how much the tooth fairy brings him for it. I think they are going for a premium these days....