SuperDylan Home‎ > ‎Archives‎ > ‎

Archived Updates - Third Relapse [Sep. 2012 - May 2013]

The latest (May 22: 6 a.m.): Dylan died at 5:20 a.m., shortly after I posted the below update.

I was sitting with him when he stopped breathing. I noticed his rasping had stopped. I listened for a heartbeat, but there was none. Since hearing is the last sense to go, I held him tightly in my arms -- something I hadn't been able to do for months because of his extreme skin sensitivity -- and I told him how much I love him, how much Mom and Chandler love him, how much everyone around the world loves him, what a great job he has done fighting cancer, how he was an inspiration, and that he can let go and go to God: that we will be OK and will love him and remember him forever, and a death rattle issued from his chest. I called Jana in, we cried and held him; and we then told Chandler. He cried, ran into their room, and touched Dylan gently to say goodbye. Dylan would have been 11 on Sunday. The tears are still flowing.

Thank you all for your love and support over all these years. More info to come about funeral and memorial services, once we figure that all out....

The latest (May 22: 5 a.m.): Dylan's condition worsened yesterday. Our hopes for his recovery from this episode are all but dashed; we now sit vigil instead, and wait. His hands and feet are cold to the touch and are cyanotic, purplish in color, with mottled skin on his legs, all of which are signs that death is near. We are giving Dylan medication nearly every hour now to control his seizures and secretions (which build up because of low blood circulation and oxygen saturation). His breathing is labored and congested, for which we give him Atropine. He's also taking Keppra, Phenobarbital and Methadone. We had nurses here with us all afternoon and into the wee hours. A suction machine was delivered to help with the congestion.

The nurse last night said it was likely just a matter of hours, but some kids hang on for days. Dylan did sleep through the night, at least. We have been playing him some music he likes and talking to him, because we have been told that hearing is the last sense to go. They also said that the dying also tend to wait for major events before letting go, so we think Dylan may hold on until his birthday, Sunday. Chandler did two performances of his show yesterday for school field trips; and his director said he was an absolute rock star, and she marveled at how he could pull it off with all that's happening at home. I think it's a welcome escape for him, though.

My second cousin, who lives in town, came by to see Dylan, but ended up heroically helping with the hard work of keeping Dylan comfortable. Jana's sister arrives later this morning to lend a hand. We have had a ton of visitors, and our refrigerator went from barren to busting yesterday with at least five full meals being delivered. We've also had a lot of folks take Gabby our dog out for walks. Thank you to everyone who has also offered support online and via email, text and phone call.

The latest (May 21: 6 a.m.): Dylan stayed in seizure mode all through the day and night yesterday. Our oncologist called and thought it may have been a stroke as well as a seizure, probably because of a brain bleed, although they would need a scan to tell for sure, and there's no point in carrying Dylan all the way out to Children's Hospital for that. We know what we have to deal with, and that additional piece of information would only satisfy our curiosity, but change nothing.

While he was calm and quiet most of the day, around 3:20 p.m. yesterday, his left hand and cheek started to twitch. We gave him Valium, two doses spread 15 minutes apart, but it didn't stop the seizure, so our hospice nurse on the phone said to give him Phenobarbital, which is much more powerful and knocked him out (although his cheek continued to quiver slightly). We continue to give him his Keppra (anti-seizure) medicine on schedule, but have discontinued everything else but the Pheno. Dylan cannot eat or drink, which means it may not be long until his struggle is at an end if he does not come back to us from the seizure.

Chandler and I stayed home yesterday. We had a LOT of visitors through the day as well, although there's little to do to help us other than providing Jana some company as she sits with Dylan. Some folks brought meals. We are starting up a signup for people to come walk our dog, Gabby, for us during the day so we don't have to leave Dylan alone. We may also add driving Chandler to and from school to the list, depending on how things are going and if he goes.

Dylan and Jana seemed to sleep through the night last night. I did not hear from them and they're still asleep as I write this. Today Chandler has two school shows of his current play (where they bus in kids to see it for a field trip). I'll update again tomorrow....

The latest (May 20: 6 a.m.): Dylan had to go in early on Tuesday for an "early morning" (8 a.m.) blood test of his cortisol levels. His thyroid showed to be off last week, so they started him on Levothyroxine at 25 mg first thing in the morning. He seemed to be doing great.

However, on Saturday, after we viewed a sneak preview of Chandler's latest musical, "Freckleface Strawberry," which he was vocally raving about as it was going on, Dylan started to seem out of it. Driving a friend of Chandler's home after the preview, Dylan started to quiver. Jana intuited that we would be in for a long night, as he was exhibiting all the pre-seizure activities he has shown before. I took Dylan home, and gave him more anti-seizure medicine by mouth, along with some Valium: a first-line defence against the neurological damage a seizure can do. It knocked Dylan out for a while, and I sat with him all through the night while he alternated severe hiccups, severe vomiting, a few bouts of bedwetting, and unstoppable writhing, not so much in pain as in restlessness and nervous energy.

Yesterday morning, we gave Dylan's Keppra (anti-seizure medication) rectally, and had a visit from our hospice nurse, who first expressed concern that we might be at the "beginning of the end" with Dylan, since his temperature (102.5 F) and heart rate (150 bpm) were so high, and because his fingernails and toenails did not respond well to the capillary refill test. Jana gave him more Keppra and Tylenol via suppository at mid-day, and we gave him more at night via the same method, as well as Methadone as a pain killer, per our hospice director: since we can't be sure if he's in pain or not, since he can't really communicate with us. And we stopped the Ritalin and Levothyroxine for now. Dylan's fever and heart rate went down and we decided not to call in the "constant care" staff, who is here 24/ to help with end-of-life issues.

After six loads of laundry to clean up Dylan's various bodily emissions (thanks to Cindy for dropping off detergent!), we gratefully called it a day. A friend visited Jana to hang out for a while, as another took Gabby our dog for a puppy playdate and yet another took Chandler with a friend to see a movie (thanks, Sharolyn, Rebecca and Ashly/Sara!).

We have no idea if the seizures have been caused by any of the new medications, tumor growth, brain bleeding, or any other potential cause. The workings of the brain, especially the injured brain, are still largely a mystery to modern medicine. After playing an old lullaby CD we had and singing through tears to Dylan, Jana slept with Dylan last night; and they both slept through the night, waking only so Dylan could hold Jana's hand. We will see how he is doing today. He was supposed to go in for more Avastin today, but we cancelled that, and have a phone call with the oncologist scheduled for later today. I'll update the blog again tomorrow morning.

Dylan's 11th birthday is Sunday. We hope to have him back with us, mentally, to enjoy it. I will be updating this blog daily, if not more frequently, to provide as much information as I can regarding Dylan's state of mind.

Meanwhile, Chandler's latest musical has opened to rave reviews and he has a nice, meaty part in it. You may buy tickets for any of the remaining shows here:
Chandler is already working on his audition for the next show at Morgan-Wixson, "Alice in Wonderland."

The latest (May 9: 6 a.m.): We met with Dylan's oncologist yesterday to discuss the latest MRI scan and possible treatment options (actually, only I did -- Jana was ill; and it was a good reminder to me of just how much she goes through and puts up with during these "routine" visits). Some fellow cancer parents from the support group WeCan were also there, including a new mom whose daughter had just been diagnosed last month. I told her about a couple of resources that we have found to be helpful. It's strange to think of ourselves as veterans in this war.....

Dylan had blood tests done and got another dose of Avastin as well, and is scheduled for more Avastin in two weeks. The doctor was pleased to see on the MRI how much the swelling had gone down around the tumors in Dylan's head, and he is hopeful that this will lead to fewer memory issues for Dylan. For those who aren't aware, much of Dylan's memory from the past few years is inaccessible to him, although he does better with faces than names; then again, he often thinks he recognizes people and he is wrong. His short term memory, a different type of memory, is also severely damaged: he can't remember what he did ten or more minutes ago. However, his musical memory is stronger than ever. He remembers lyrics and songs from Wicked to Led Zeppelin. No one is sure if either type of memory, so important to our definition of self, will ever be regained. The doctor also said the seizures Dylan has had could be for a variety of reasons, especially with tumors in both temporal lobes, which are hot spots. One can only hope for the best, and curse whatever it is that has caused some memories to be forever lost.

The doctor ordered thyroid tests, suspecting that perhaps this is the cause of Dylan's extreme skin sensitivity and feelings of being very cold (and is not something normally checked in routine blood tests). The radiation Dylan has gotten, the doctor explained, could have done something to his thyroid function, and this is easily taken care of with Synthroid. We should get results on the thyroid function today.

We have also been giving Dylan Ritalin in the mornings, per our hospice nurse, to see if that will help increase his energy levels (the compromised thyroid function could also be a culprit here with energy levels). This has seemed to help, although we've only given it to him a couple of mornings this week. He did a couple of karate classes, and even led one with passion and wit alongside his sensei Chris; and he played Uno with his CoachArt coach, and all his instructors have noticed a little more energy in him.

Regarding Houston, our doctor will be sending tumor slides from previous surgeries to Baylor, to have them check the tumor for eligibility. If that goes well, we will sign the consent forms. The next steps would be to send them 60ccs of blood for them to prepare the vaccine with, which takes the scientists there a few months to complete. So we would not get started in Houston until around August or even September. After taking all that blood, we would give Dylan one more round of the CCNU, and then give him about 10 weeks for his counts to recover (which would be about the same amount of time for them to prepare the vaccine).

Just prior to going to Houston, they would give Dylan a high dose of chemo to get rid of as many cancer cells as possible before starting the new treatment. We would also get one more MRI, as well CT and PET scans in August (the next MRI is scheduled for the morning of Aug 3rd) as a baseline, and to ensure Dylan is still in minimal disease, just prior to starting the new treatment. Visits to Houston would be brief, two-day trips, up to six times every two weeks. No side effects are expected.

Meanwhile, big brother Chandler has never worked harder on a musical production as he has worked on his current one, "Freckleface Strawberry," which starts on the 18th and runs for a few weekends on Saturday and Sunday mornings. He is playing the class nerd. Even though he stayed home sick from school two days this week, he still went to rehearsal -- he is a true trouper! We are hoping many friends will come to see him, and since this is the type of show that sells out fast, it would behoove you to buy your tickets at the following link asap:

Last, we are combining both boys' loves this Mother's Day with a trip to a Scooby-Doo musical on Sunday. We are also starting to plan celebrations of Dylan's 11th birthday, which is on the 26th. We were not sure if he would live to see it, even as recently as a few months ago, so there is much to celebrate. There is no hospital visit next week and no other big news, so the next update will be on May 20.

The latest (May 6, 7 a.m.):
Dylan's MRI results were stable, and there was a decrease in edema around the residual tumors, which is great news. We meet with Dylan's oncologist Wednesday to discuss Houston, and for Dylan to get his next dose of Avastin ....

The latest (April 29, 6 a.m.): Dylan's blood counts were good enough for him to get his next dose of Avastin last Monday. I neglected to mention that he had a petit mal seizure on the plane back from Nashville and that he threw up (and that the elderly gentleman sitting next to them was extremely helpful). He has since had three more seizures: two on Thursday and one yesterday afternoon. We reported them and also reported Dylan's worsening skin sensitivity. They moved Dylan's next MRI up to this Friday afternoon, May 3, at 3 pm. We may not have results until next week. We are also supposed to meet with Dylan's oncologist a week from Wednesday, to discuss the results and the possible Phase 1 study in Houston. More on the study here:

Dylan went to school for about an hour on Tuesday, and then to the local tutor I mentioned last month for another couple of hours. He played for an hour with his CoachArt coach on Tuesday night for a couple of hours as well. She brought over a new 3D Spongebob lenticular puzzle (Dylan loves doing puzzles); she works at Nickelodeon (score!), and they played Uno with Jana and Chandler for a while, too. We also had a friend from church come hang out with Dylan for a few hours while Jana ran some errands. Dylan introduced her to Ben10 and the show now has a new fan. It helps Jana a lot to have a few hours to take care of things, or of herself. He hasn't been to karate for a while, because of his extreme skin sensitivity that has developed lately, but he did go to a friend's softball game and served as bat boy for a while. He also rode his trike for a little while at the park across the street from us. I taped it with my phone and uploaded it here:

I also spoke with a foundation we connected with through a couple of great friends of ours. The Lazarex Foundation helps people who are facing final stages of cancer and treatment with travel, transportation, and lodging. If we do go to Houston (or there is another study at Duke), this group will be able to help us with many things that we've had to come to our blog readers, friends and families to help with. More information on this great organization:

Chandler has had an artsy week, having gotten a good score in his arts rotations at school. We even framed an interesting piece he did to put on our walls. On Wednesday, after rehearsal for his upcoming play, he performed with his middle school chorus, and sang a solo, "Stars," from Les Mis. His voice is getting lower and stronger. It was, literally, awesome. Link below, although my phone ran out of space right at the end, which was glorious. I am desperately hoping one of his classmaters or another parent may have recorded it.
Chandler has a mitzvah of one type or another to attend nearly every weekend for the next couple of months. They are fun for him, but the parties often go until 11 pm, way past my bedtime. Oy!

The latest (April 22, 5 a.m.): Dylan and Jana had fun in Nashville last week, seeing family and friends (Jana grew up there, if you didn't already know that). Along with Jana's sister, they paid a visit to the set of the TV show "Nashville," taping on location that day at the famous Grand Ole Opry, and got to meet all the stars of the show. The actor Eric Close is on the show, and he and his family are friends of ours. Dylan got to do his famous roar into the microphone on the Opry stage, and then they got a backstage tour from Eric.

Dylan was particularly taken with a young blonde actress, Clare Bowen, and not only kissed her on the cheek, he remembered kissing her later that night. Though he does not seem to remember the entire trip now that he's back. Dylan also met Charles Eston, one of the lead males. Dylan told him, with reverence, "You are the master!" (He says this to me all the time; I guess Eston and I look a lot alike!) And Jana got to meet one of the Oak Ridge Boys, who happened to be on the set (his wife was on the show). She had been in the recording studio when they recorded "Elvira" many moons ago. We are so grateful to Eric and the cast and crew of "Nashville" for showing Dylan so much love.

Chandler and I held down the fort alright, though we missed them. Our dog, Gabby, was forlorn until I took him to pick them up at the airport. Chandler went to two school plays over the weekend, having pledged to try to see all of his friends' plays this year. His rehearsal schedule on this current play is pretty heavy: nearly every day until opening with only Sundays off.

The latest (April 15, 5 a.m.): Dylan had good blood counts on Wednesday, so they allowed Jana and Dylan to travel to Nashville this week; which was their delayed spring break trip. Chandler has school and I have work, so we are staying in L.A. It is also Jana's birthday today, so she gets to enjoy it with her family at their lake house (it is warm there). They flew out on Saturday and come back this Saturday. All the way to the airport, Dylan kept asking where we were going and calling the middle seat on the plane, and we had to keep telling him it was just him and Mom traveling. Friday night, his short term memory lapse was even more bizarre: we went out to eat to celebrate Jana's birthday before they left and Dylan kept asking where we were going every five minutes. When we said "El Cholo," his response alternated from "What's that?" one time to "Oh, I love El Cholo!" the next, and back and forth to the point it felt like an old vaudeville routine.

I miss them both, but our dog, Gabby, seems the most despondent. Chandler has school and YouTube to keep him distracted. I have taken to trying to memorize things about Dylan: the feel of his breath on my cheek, or his small hand in mine as we cross the street; the drawings he has suddenly been making; the frown on his face when he plays Uno, or the smile when he wins; the way he tells me he loves me all the time, as well as his hesitant honesty about how bad my breath stinks!

Dylan's energy continues to rise: A volunteer with hospice came twice last week to see Dylan (she has been before, but I hadn't mentioned her) -- Dylan and Jana think she looks and acts like my mom, who lives far away, so it makes them both feel good to have her around. Our CoachArt coach came and drew pictures, and played Sorry and Uno with Dylan (he is not up for soccer, which is her sport; maybe some day soon). And on Thursday, he not only made it through a whole karate class, the owner of the dojo told Jana he hasn't seen Dylan with so much energy in a long time!

Congratulations are in order for Chandler, who worked really hard on his audition (with an ever-changing voice, he figured out how to digitally lower the key of the karaoke backup song he picked to audition with), and who got the role he wanted in his next musical, "Freckleface Strawberry," which opens May 18. Buy tickets here:
Chandler also got to see Les Mis again, this time a high school version a friend took him to see after dinner out. He had a really great time and then came home and watched Dr. Who until midnight. Quite the teenager!

The latest (April 8, 7 a.m.): Conversation between Dylan and me Tuesday morning:
Dylan: "Dad, do you know what the most important thing is?"
Me: "No, what?"
Dylan: "Love!"
Me: "Yes, you're right!"
Dylan: (with a sly grin) "... and Ben 10."

Dylan did not get more Avastin Wednesday -- his platelet counts were too low. Jana and Dylan returned Friday to see if they might have come up on their own, but they did not. They did not give him any, though, because they were not dangerously low, but we still have to take care. They go back on Wednesday to see how his blood counts are doing, so he may get more Avastin then, and he also has to suffer through getting another dose of  the foul-tasting, anti-pneumonia medicine that you breathe in, called Pentamidine. Later on Friday afternoon, he called Jana and Chandler to be near him as he was feeling seizure-ish, but she gave him his Keppra and he seemed alright after that.

He is still throwing up frequently, usually after drinking a lot of water, which he has to do for a urine test at every hospital visit. Anti-nausea medicine does not seem to help -- it's not nausea or acid reflux, it seems, as much as his stomach simply rejecting the water coming in, which to you and me is not that great, but to him must be more than he can handle. Often his anti-seizure pills come up with the water and any food he had eaten, so he has to take them again once his stomach settles down. His skin has gotten so sensitive, ostensibly from the medicine; he is not only cold all the time, but it hurts him when I pick him up. I fear this may get worse, and I won't be able to even hug him, since the medicine he is taking is cumulative in its side effects.

Dylan's energy has continued to rise. He was not quite up for school, but did attend a tutor down the street (Miss Louise's Tutoring Thyme, for those who know) for most of the day on Monday and all day Tuesday and Thursday. He did many great things with the tutor, but one day when they went to Noah's Bagels for a field trip, one of our neighbors saw him, and another friend of ours also saw him and bought him a box of cookies. Since he had already eaten, he could not finish his cookies, so kindly gave them to a homeless woman that hovers around our neighborhood. The tutor said she had never seen a kid be so nice to a homeless person.

Dylan's renown even followed me to the place were I work, called theOffice, in Santa Monica, which is mostly for writers, and thus quiet as the grave; so I have to go outside to speak on the phone. One day this week another denizen of theOffice overheard me talking to Jana about Dylan. "Are you Dylan's dad?" he asked. "I'm the dad of Dylan's friends from karate. We'd love to have him over again soon."

He also played Uno and drew pictures with his CoachArt Coach, Lauren, on Tuesday (and he won the Uno match!). I don't think I've mentioned how creative Dylan has gotten. He has started making drawings the last couple of weeks, which Jana is collecting and will make into a book. And, best of all, he went to his good friend, Sean's, birthday on Saturday at an ice skating rink.

Chandler's current musical at the Morgan-Wixson ended yesterday. Jana, Dylan and I went to see it and enjoyed it, especially the live circus acts: contortionists, acrobats, and more. Then we all went to the cast party (best one ever!), which happened to be at a friend's house, the same one we have often housesat in the past. (The daughter of that family was also in the show with Chandler.) Another show is coming hard on its heels, with auditions held just after the cast party yesterday, titled "Freckleface Strawberry," based on books by the actress Julianne Moore. Maybe she'll come see the show and meet the kids. All the Morgan-Wixson kids' shows are based on books, to provide an educational aspect, but most of the authors of books they've done so far have been dead or couldn't travel.

Chandler goes back to school this week, after spending most of his break catching up on Dr. Who, which some of his friends love, and which he wants to talk about with them now that school is back in session. It was nice to have him around, but his inactivity drove his personal trainer/marathoner Mom a little crazy. So she bought him a bike! He traded time on the bike for screen time for the rest of his break, and said he felt good after riding his bike for three hours one day and four the next, with two more hours that day on the trampoline we bought him for his birthday!

The latest (April 1, 7 a.m.): Dylan did not need any blood or more G-CSF shots when he was checked on Monday. He just needed platelets. His energy is back and he went to two full karate classes this week.

His new CoachArt coach, Lauren, came and played Uno with him instead of soccer, although we may try soccer next time if his energy keeps coming back.

Thursday, he his blood counts were good again, and again he just needed some platelets, and they scheduled him for more Avastin this Wednesday.

Saturday, my cousin, aunt and uncle came to see Chandler's show and then we all went to lunch at Pink Taco. Dylan has been throwing up more often lately, so we were a little worried he might do so in public at a restaurant again, but he did fine. It was marvelous to spend some time with family. (My dad is doing fine, by the way -- see last Monday's update).

Easter was mellow -- Chandler's play was during church, so we did not go. The rest of the day, we just hung out and played games, went to the park, watched TV and ate Pink Taco leftovers.

Most importantly: We are all on the alert today for trick phone calls from my mother, whose favorite day of the year is today, April Fool's Day.

The latest (March 25, 6 a.m.): Two trips were cancelled last week: my dad was going to come to town, but fell ill and had to stay home instead; and the boys and Jana were going to go to Nashville this week (both boys' spring breaks started today, Dylan's is this week and Chandler's lasts for two weeks), but had to postpone their trip because Dylan's blood counts are too low to travel. His platelets are low, and so he can't go to karate, either; but more importantly, his white blood cell counts are also low, making him "neutropenic," and thus susceptible to infections. Jana has to give Dylan G-CSF shots in his arm every night, which is not pleasant. They just left for the hospital to check his blood again and hopefully. stop having to get the shots.

Chandler's current show, "Madeline and the Gypsies," opened to sold out crowds. It's a fun show with live circus acts! To buy tickets, please go here:

The latest (March 18, 7 a.m.):
Dylan went in to CHLA on Wednesday and needed both blood and platelets, and so he is not getting chemo this week. At least they only had to go in once during the week. Jana met with our oncologist, who is still pushing for Houston treatment, but that wouldn't start for a few months, so we would be there in the summer. Dylan would need to qualify for it and if he doesn't, there's another Phase 1 treatment at Duke. Phase 1 treatments are very risky, because they are determining how much of a drug they can give a person before it's too toxic.

Dylan spent some time yesterday cheering on the marathoners. He did not remember that I ran it last year, but was proud of me when I told him I finished. His sensei Chris ran it again this year to raise funds for us. Our hero!

Chandler's next show starts on Saturday, "Madeline and the Gypsys." He is playing four different characters! More info here:

Every night when I tuck in Dylan, he asks me to tell him a "Dylan Dragon" story, where he and a friend, or usually his brother "Chandler Cheetah" have adventures around the town. Dylan can fly and loves to go to cool places in L.A., places to play, places to eat, and then he always comes home with his brother, exhausted by living out loud. They have a lovely dinner cooked by Jana Jaguar and Eric Elephant tucks them in. And they have great dreams.

The latest (March 11, 1:30 p.m.):
Dylan had to get platelets twice last week and one of the times he had to return to the hospital the next day, which means three trips out to CHLA for him and Jana. This is wearing on her nerves, along with the requirement to keep Dylan entertained and occupied 24/7. I do what I can, but am not around enough to help as much as I wish I could. We may start up the occasional reading to Dylan adult playdates, just to give Jana a break once in a while. A social worker from hospice has started coming once a week to play games with Dylan and let Jana go to yoga. That has helped a bit.

He has such trouble with friends his own age, but at the same time is desperate for socialization and playdates. Some friends of ours came to visit after moving to France just before Dylan got diagnosed (we saw them for a few days when we were in Europe for the vaccine treatment), but he had trouble connecting with them. As with most of his friends, they have outgrown him, both physically and emotionally. As much as we love having Dylan around and enjoy his spirit, it breaks our hearts to see him struggling like this. It reminds us how much of him we have lost, and how much he has lost out on and will miss out on in life, because of his challenges.

Instead of karate this week, Dylan went to a gymnastics gym for a one-on-one workout to help his balance. Then we met our new CoachArt coach, Lauren, at the park across the street for some soccer, but Dylan was too worn out, so we just hung out and talked to her. We mentioned that our previous coach had done cooking and Lauren mentioned she could do that instead or in addition to soccer, depending on how Dylan is feeling. He is strong when he and I wrestle, but he can't walk more than a couple of blocks without getting exhausted. Thankfully, his arm pain has gone as mysteriously as it came; he has had a couple of minor headaches, but that could be dehydration. He has still been having trouble with throwing up after meals occasionally, but this seems to be improving.

The latest (March 4, 11 a.m.): We had a great trip down to Disneyland over the weekend, courtesy of a good friend. We had four two-day park-hopper passes, VIP viewings of the parade and other shows, and a character dinner in the hotel (see picture at right, with a fighting Mulan).

We had so much fun, we decided to stay an extra night in the Disneyland Hotel, and enjoy the parks and hotel grounds a little longer, hence my late update today. Dylan cannot ride anything too bumpy for fear of brain-bleed, so we kept it pretty mellow. Because we got a handicapped pass from the "Town Hall," building, it's like we had a fast pass to the park and zoomed through all the rides we wanted to ride.

We got Chandler to school a little late, and picked up Gabby the dog at the same time, because we put him at FitDog, a kennel that happens to be on the grounds of Chandler's school. We watched Gabby on the kennel's web cam over the weekend, and he was definitely Mr. Congeniality with the other dogs! He misses his friends, it seems. There are a lot of fun pictures on my Facebook from our trip. Enjoy!

The latest (February 25, 6 a.m.):
Dylan had to get platelets on Thursday, but otherwise has had a good week since my last post. He went to karate on Saturday and did fine. We're looking forward to a trip to Disneyland this weekend which was given to us by a friend.

The latest (February 19, 7 a.m.): Dylan had a good long weekend: no arm pain, no seizures. He has enjoyed his aunt Linda being in town. They have played many games and she treated us to lunch out yesterday. She is here for a couple more days. We all went to Chandler's last show of Midsummer Night's Dream on Sunday. Dylan was upset to learn it was the last show when it was over, he enjoyed it so much! Chandler was also sad, but his next show has already started rehearsals, and many of the same kids are in this one as were in the last one.

The latest (February 14, 12:30 p.m.): Dylan's MRI results were good! The oncologist was elated to tell us that the brain MRI showed a continued shrinkage of tumors in the areas of concern. There was also a "decreased restricted diffusion," which means that the higher grade lesions were diminished and also noted that there were larger areas of calcification, which is good, because only dead and dying cancer cells calcify.

He did say there were a few small spots in the spine, but also that since we haven't scanned the spine in a while, it's hard to tell if these have been growing slowly or that they were worse before and now are also shrinking. He mentioned that these would be too small to have caused Dylan's arm pain, but also was relieved to hear that the arm pain seems to have gone away. He did not think doing a spinal tap would help at this point and for us just to keep an eye on the arm pain.

For Dylan's nausea, he recommended we cut back on the Zofran and instead increase Prilosec to see if it's more of an acid reflux problem. Even though he's been off the steroids for months now, they still could be affecting his digestive tract.

Dylan's blood counts were good: platelets were OK, white blood cells were good, there was no protein in his urine and he had only slightly irritated liver counts, although we can expect them to drop soon after the last dose of CCNU. Dylan will stay on the CCNU/Avastin regimen as long as his blood counts don't get hit too hard, but this is not a permanent solution because the CCNU effects are cumulative, and so get worse over time. And with the tumor getting better, this increases the likelihood of internal bleeding in the brain from cavernomas and necrosed tissue which, with low platelets, is increasingly dangerous, requiring immediate hospitalization. We are to watch for sudden onset headaches, and also any other back or arm pain. We need to get blood labs run twice weekly now, hopefully through hospice, every Monday and Thursday. Ironically, we learned that CCNU is among the least expensive cancer medicines on the market, whereas Avastin is the most expensive. Dylan's hair on the rest of his head seems to be growing back, but more thinly than on top. We'll have to give it time to see how it's going to look.

The oncologist said we do not need to run another MRI for four months or so, which is a nice break. We may have an option at Baylor in Houston for an experimental "vaccine" treatment, similar to the one we did in Belgium, but which does not require a tumor sample, but rather just some blood. The study at Baylor is currently for kids who have glioblastoma, not medulloblastoma as Dylan does, but they may let Dylan try it anyway. Info on the trial may be found here:
The approach triggers T-cells that fight against certain kinds of viruses, viruses which medulloblastoma cells always express on their surfaces. The T-cells then go after all cells with this virus, killing the cancer cells and leaving others alone. It's very promising and they're looking into whether or not Dylan is eligible. The only drawback is that it would require travel to Houston a couple of days per week for a while, or perhaps a temporary move. We don't know how quickly we would get started if they say yes, or if we need to be off the current treatment for a certain period of time before starting. There are other promising things going on out there in the world of brain tumors, but mostly approved only for adults and, thus, unlikely to be of benefit to Dylan, the doctor said.

He asked Dylan what he was going to do special, since it is Valentine's Day today. Dylan said, "I'm going to kiss my mom." The oncologist purred and grinned at Jana. "And I'm also going to kiss my dad," Dylan said. The oncologist nodded in approval. Then Dylan scrunched up his face, "but I'm not sure about my brother." We all had a good laugh. The oncologist said, "Well, clearly Dylan has not lost his sense of humor!" On the way out, we traditionally buy Dylan a Happy Meal toy from the McDonald's that's at Children's Hospital. They have a "boy" toy and a "girl" toy and you have to specify which one you want.. This time, he got the "girl" toy, a plastic, Hello Kitty bobbling figure with a pink hair ribbon and a yellow guitar. When I asked him why he wanted that particular toy, he said, "Because I want to smash it into a million pieces!" But at home he changed his mind and decided to give it to a girl he likes. I guess he hasn't lost his sense of romance either.

We look forward to a visit from the boys' aunt Linda, arriving Saturday.

The latest (February 11, 6 a.m.): Dylan had to stop karate on Saturday because his arm hurt, so we came home and gave him methadone. It knocked him out for half the day, and Jana and I discussed giving him regular doses to "stay ahead of the pain," as hospice recommends, versus treating it more reactively and at least having him awake more of the time. He did not need any medication for the arm pain all day Thursday or Friday, or yesterday for that matter, which included a playdate at his friend, Sean's house; so it's hard to justify keeping him drugged when the pain is intermittent.

He has still been very cold and tired, and he throws up after even moderately sized meals (another epiddoe while eating out, so I put a moratorium on us eating out, at least for a while -- it's costly enough when you can keep it down!). We're not sure if it's nausea from the chemo or just an easily upset stomach not used to a lot of food, or a combination. We give him anti-nausea medicine three times a day now, so maybe it's the latter.

In case you are just joining this blog: Dylan's next MRI is Wednesday, and we get the results Thursday, so I'll probably post again here on Friday. We appreciate your solidarity as we go through another bout of "scanxiety."

The latest (February 7, 6 a.m.): We kept the below pain diary until Tuesday night, when Dylan had to be catheterized because he could not pee, likely a result of the morphine. The hospice nurse said this usually goes away, so we were hoping for the same for Dylan. The catheter hurt him and they had to do it twice -- taking about half an hour each time -- because the first kind of tube they used was not stiff enough, and they had to leave the second one in overnight. I held him while they did it (some things you just need your dad there for), and I whispered in his ears how great he was doing, and how strong and how brave he is, as he whimpered and shook. They finally left around midnight Tuesday.

Yesterday, Jana took Dylan to the hospital for his regular blood work, where he peed on his own, thankfully, but where he also threw up his Happy Meal with chocolate milk all over his shirt. Jana was proud to have captured it all; apparently Happy Meal boxes can hold a lot of liquid! The labs came back with good numbers, which is always a relief. Dylan also felt no arm pain through the whole day, so he had the day off from morphine. The nurse case manager at CHLA is working with our hospice nurse to get Dylan on a regular morphine dose to "stay ahead of the pain" instead of waiting for him to complain, and then him being in so much pain that he has to double dose on morphine and may not have needed to. They may also switch him to harder stuff, like Methadone. We also need to measure his liquid intake and output for a while, to ensure he's not keeping any in.

Dylan should get more Avastin on Wednesday, the same day he also has his next MRI. We won't have results until next Thursday, since the MRI is so late in the day.

Our family's climb up the ladder of fame and fortune took a small step up the rungs because Jana was on "Modern Family" this week, as an extra in the audience watching the kids' version of "Phantom of the Opera." Chandler also got a small role in the next show at the Morgan-Wixson Theatre, "Madeline and the Gypsies," which will be notable for having actual circus acts in the show, along with the usual excellence in story, choreography, direction, costumes and vocal talent. His current show, "A Midsummer Night's Dream," is going well.

The latest (February 4, 7 a.m.): Dylan's arm has continued to hurt, and it makes him very upset since he isn't doing anything to cause it. We suspect it is tumor-related. So we've been giving him morphine, which makes him drowsy, but at least feel no pain. We have been told by hospice to keep a pain diary for this particular pain, which looks like this (note: 1 dropper = 1 ml or 2 mg of morphine):
Feb 1 - 4 pm - 1 droppper
Feb 2 - 7 pm - 2 droppers
Feb 3 - 2 pm - 2 droppers
Feb 3 - 6:30 pm - 1 dropper
Feb 4 - 7:15 am - 1 dropper
Feb 5 - 7:30 am - 2 droppers
Feb 5 - 3:45 pm - 1 dropper
Feb 5 - 10:30 pm - 1 dropper

We went out for my birthday dinner last (Sunday) night, and I got a lot of shirts for my birthday to wear on client calls at work. Thanks to the many folks who wished me a happy birthday on Facebook and email yesterday!

The latest (February 2, 8 a.m.): Dylan's right arm hurt, apparently a nerve pain, last night. The hospice nurse came over and gave him morphine. He seems better today, which is good, because we're all going to see the opening of Chandler's latest play, "A Midsummer Night's Dream" this morning. Break a leg, Chandler!

The latest (February 1, 7 a.m.): Dylan did alright yesterday, just very tired and mellow. He had such a long day at the hospital, it may just be that took a lot out of him. He hasn't seemed seizurish, though. Our hospice nurse comes by today and Dylan has an appointment for a basic blood draw on Wednesday of next week.

Chandler was in a promo for the NBA All-Star game. You can see him in a close-up at 1:27 of the video at this URL:

The latest (January 31, 7 a.m.): Tuesday, after karate class, Dylan looked pale and asked to go to the hospital (he also had to leave karate early last Saturday, but only said he was very tired then). Since they had a visit to CHLA already planned for yesterday, Jana did not take him in or call hospice.

Dylan had good blood counts yesterday, but when they took his blood pressure, his heart rate was around 145, which is what happens when he seizes. He looked pale, and went into a daze. They quickly gave him an extra dose of Keppra, and they also gave him a dose of Avastin, as well as another dose of the nasty, nebulized Pentamidine to prevent pneumonia. Lastly, they sent Dylan home with another dose of the chemo pill CCNU, which he took last night without any issues. His blood counts will probably drop again in a week or two. Dylan has been vomiting a lot, so we are giving him Zofran twice daily as well.

Both the seizures and the throwing up can indicate tumor growth. They moved the MRI, but only an hour later, so it's on Feb 13 at 6:30 p.m. The boy in Texas that mentioned below in last week's update died on Monday. From a distance, we stand with the family in their grief. This is a grim reminder, as are the seizures, that we are living on borrowed, even stolen, time; and we need to appreciate every moment.

Dylan seems to be alright today, but we're keeping a close eye on him. He is very quiet and sleepy.

The latest (January 28, 6 a.m.): Dylan had great blood work at CHLA on Tuesday, and did not need any blood or platelets. We had tried to move up his MRI to Wednesday (another cancer kid we know in Texas had an emergency, and had to cancel that appointment, so we tried to grab it and get in earlier than mid-Feb), but insurance problems not worth elaborating on here, prevented the MRI. Dylan is still scheduled for Feb 13, but the MRI scheduling team is keeping an eye open for cancellations, and will try to get us in sooner. He also did not get the final dose of Avastin; his counts were too low: and they wanted to get an MRI first before giving it to him, if possible; but the dose has been scheduled for this coming Wednesday.

The latest (January 21, 7 a.m.): On Wednesday, Dylan needed both blood and platelets, as well as a C-CSF shot, because all his counts (red and white blood cells and platelets) were so low, so he did not get his final dose of Avastin. He and Jana had to be out at Children's Hospital for nine hours for all the tests and infusions. Dylan has another visit tomorrow for more blood and platelets, and another appointment a week from Wednesday, hopefully for that last dose of Avastin. When the oncologist said goodbye to Dylan after his visit, Dylan told the doctor: "Continue being awesome!"

Dylan finally got to see his female friend (not a girlfriend, or, if you ask Dylan, one of many girlfriends he has), who had moved to Argentina a year and a half ago. He enjoyed her company, but I think was surprised at how much she's grown, and how much he has not. They went to Souplantation for lunch and came back home to play with the dog and watch some TV. He was very quiet around her; but, then again, that's how I am around pretty blonde girls. :) But seriously, he has not been going to school since his counts are so low, so this was one of his few chances this week to socialize with someone his age.

Dylan has still been throwing up after anything more than a few bites of food and a few sips of water. It's hard to keep him hydrated, which is important; and we aren't sure if it's the blood counts, the cold he's had for weeks (we have all been sick with a brutal cold, although not the flu), or something else. The result of this is that he has lost a little of the weight he gained while on steroids, and then while lethargic after being taken off them. He has also lost a lot of the energy he had, likely a side effect of the chemo and blood count drops. Otherwise, he seems to be doing alright: he has the same memory problems, a gentle and kind demeanor, an insatiable craving for playdates and, as always, an obsessesion with Ben10.

Last weekend, Dylan's sensei Chris and his gal ran the LA Half Marathon to raise some funds for us. That will help offset the deductible for medical insurance we face at the start of every year. Some members of our church have also donated toward this end. We are grateful. The combined funds should help us cover our out-of-pocket maximum. When signing up for benefits with my new job, I took the highest level of coverage. Just in time, it seems, because I heard from my old benefits company, United Health Care, that they were having problems renewing their contract with Children's Hospital. Hopefully the new coverage, Blue Cross, top-level PPO, will be just as good as the old one was.

On Monday, Dylan was profiled by the famous kids' cancer website, Alex's Lemonade Stand, this month as one of their cancer heroes. You may read his profile and hero quote here:

On Saturday, while Dylan went to karate for two full hours (!), Chandler had another gig with the children's choir that he was on the Today show with, this time performing with the rap artist Maclemore, on a live version of his song "Wing$" (he is popular now for his song "Thrift Shop"). as a promo for the NBA All-Star Game. Hopefully Chandler made it in one of the shots of the choir. If it's online anywhere in the near future, I'll post it here in the next few weeks.

The latest (January 14, 6 a.m.): In addition to Chandler's birthday celebration last week, on his actual birthday, Wednesday, he got some Broadway books, movie passes, yet another recording of Les Mis (the Complete Symphonic version this time), a new Bellicon trampoline (he had heard Anne Hathaway say in an interview she jumps on one to prepare before her performances), and an amp, picks, cords and an overdrive pedal for the electric guitar my second cousin gave him earlier in the year (and we got ourselves earplugs!). We went to the Tavern, an upscale restaurant down the street from us. He is working hard on his role in the kids' version of Shakespeare's "A Midsummer Night's Dream," coming up next month at the Morgan-Wixson Theatre. He is also working on a kids' version of Les Mis with a group of friends from the same theater that they want to put on for charity. You may buy tickets to the Shakespeare play at this link:

Jana had to take Dylan out to CHLA on Wednesday to get more platelets. They were higher than last week, but still too low. He has a check-up on Wednesday. He is doing well, though. He seems to be pretty sleepy and tired, although his cortisol levels were alright. The oncologist wants us to get an "early morning" cortisol level, which means poking him with a needle between 6 and 8 a.m., but we aren't sure if our hospice nurse can come over that early. She has usually only come late afternoon or evening. He tires out quickly walking, which we are trying to work on. He has been eating only a very little, which is a little worrisome, but he feels alright and has been going to karate regularly.

Yesterday, the owners of the Little Beast Martial Arts Studio (named in Dylan's honor) ran the L.A. Half Marathon, partially to raise funds for our family. We were so humbled and grateful. Dylan has a follow-up meeting with our oncologist on Wednesday; and Chandler has another performance with the West LA Children's Choir for a promo song for the NBA All-Star game. They tape it on Saturday.

Our new dog, Gabby, has been learning how to "go" outside, and he has realized I am the best dog toy thrower in the house. He is getting used to his crate, but he has been chewing some things (Jana's shoes, computer wires, pens and pencils) so we hope to cure him of that pretty soon as we would like to let him into the other rooms of our apartment. He has a wheezing cough that is also disturbing. Hopefully Jana can take him to the vet this week.

The latest (January 14, 6 a.m.): In addition to Chandler's birthday celebration last week, on his actual birthday, Wednesday, he got some Broadway books, movie passes, yet another recording of Les Mis (the Complete Symphonic version this time), a new Bellicon trampoline (he had heard Anne Hathaway say in an interview she jumps on one to prepare before her performances), and an amp, picks, cords and an overdrive pedal for the electric guitar my second cousin gave him earlier in the year (and we got ourselves earplugs!). We went to the Tavern, an upscale restaurant down the street from us. He is working hard on his role in the kids' version of Shakespeare's "A Midsummer Night's Dream," coming up next month at the Morgan-Wixson Theatre. He is also working on a kids' version of Les Mis with a group of friends from the same theater that they want to put on for charity. You may buy tickets to the Shakespeare play at this link:

Jana had to take Dylan out to CHLA on Wednesday to get more platelets. They were higher than last week, but still too low. He has a check-up on Wednesday. He is doing well, though. He seems to be pretty sleepy and tired, although his cortisol levels were alright. The oncologist wants us to get an "early morning" cortisol level, which means poking him with a needle between 6 and 8 a.m., but we aren't sure if our hospice nurse can come over that early. She has usually only come late afternoon or evening. He tires out quickly walking, which we are trying to work on. He has been eating only a very little, which is a little worrisome, but he feels alright and has been going to karate regularly.

Yesterday, the owners of the Little Beast Martial Arts Studio (named in Dylan's honor) ran the L.A. Half Marathon, partially to raise funds for our family. We were so humbled and grateful. Dylan has a follow-up meeting with our oncologist on Wednesday; and Chandler has another performance with the West LA Children's Choir for a promo song for the NBA All-Star game. They tape it on Saturday.

Our new dog, Gabby, has been learning how to "go" outside, and he has realized I am the best dog toy thrower in the house. He is getting used to his crate, but he has been chewing some things (Jana's shoes, computer wires, pens and pencils) so we hope to cure him of that pretty soon as we would like to let him into the other rooms of our apartment. He has a wheezing cough that is also disturbing. Hopefully Jana can take him to the vet this week.

The latest (January 7, 2013, 5 a.m.): Since my last blog Dylan had his second of three Avastin (chemo) treatments, and he did fine. But his third and final Avastin treatment did not happen: they could not give it to him because there was protein in his urine: an indication of kidney damage; and also because his platelet counts were drastically low: they gave him an infusion of platelets (we do not need anyone to donate platelets to him, though); and last because he was dehydrated (and every time they tried to give him water, he threw up). He also had elevated liver counts, most likely a result of the CCNU chemo pill he took about a month ago, but his liver is functioning fine. We will keep an eye on his blood counts this and next week through hospice, who can draw blood and run the labs, instead of us having to trek out to Children's Hospital. Dylan is done for now, but may have that last dose of Avastin, and perhaps another pill dose of CCNU in a few weeks, depending on his counts.  He did have the nasty anti-pneumonia medicine you breathe, Pentamidine, and Jana sent me a video of him singing "Frosty the Snowman" with the breathing contraption in his mouth and a frown on his face. We have follow-up appointments for January 16 and 30, and an MRI scheduled for February 13, late afternoon, to see if the chemo has made the tumors shrink at all. He is also off the hydrocortisone, as his adrenal glands appear to be working just fine now (they will also blood test him on that this week).

Dylan's memory is still shot, but he has moments of remembering things from the more recent past, so hopefully it will keep improving. He is also still very cold, and ready for the weather here to warm up. He has definitely been getting stronger, making it through a few entire karate classes over the break. He has been awake for pretty much the entire day every day; and he has been very loving, telling us all how much he loves us and how awesome we are, and hugging and kissing us all many times a day. When I tuck him in at night and tell him I love him, he says, "I love you more," and he's right. He tells me often how smart, strong and awesome I am; and tells Jana how much he wants to "smother her with kisses;" and tells Chandler, sometimes, that he has an awesome voice. He is also very affectionate toward others, hugging generously, giving people thumbs-ups, and patting younger children on the head. He would also sit at the bottom of the Christmas tree with a huge smile and look at all the presents, counting how many were his. Although, after the New Year, he seems to have regained some of his irritability, especially with his brother, which could be a bad sign that the tumors are growing again in the temporal lobe area. It's easy to write this off as normal sibling rivalry, but there is concern. We may not know for sure until the next MRI. He has also, during this time, had nightmares on most nights, and has had to come in to sleep the rest of the night with Jana, and he has been vomiting after meals or drinking carbonated beverages, although it's hard to tell what is causing the sickness.

We had a visit from Brant, our alternate cooking coach who has also moved out of town, on the Saturday before Christmas; and he and the boys made lemon ricotta pancakes. I didn't eat any, being on a diet again (have lost 30 lbs since our Disney cruise), but they smelled wonderful. That night we saw "A Christmas Carol" live, in Dickensian costume, with old carols interspersed, at Glendale's Centre Theatre, an annual tradition for us now.

Christmas Eve, after we went to a friends house for dinner, we went our church for a special family service that was standing-room-only (except they did let Dylan sit). Then I drove Chandler and a group of friends to see Les Misérables, the movie, at a 10 pm showing: the first possible opportunity to see it. He and his friends were so excited! I loved seeing his smile as I looked in the rear-view mirror; he has never been happier. They had a blast, all dressed in Les Mis costumes, and Chandler came home in the wee hours (thanks to dad Barry for driving him home) -- way after Santa had visited -- and he was positively glowing. His friends' comments on his Facebook page showed that they had a great time, and that the film is going to be a huge hit, and will likely sweep the Oscars.

Christmas Day, we laid low. Dylan and I were both sick from a cold that Chandler was getting over. Chandler spent much of the day with a new microphone, recording himself singing, and enjoying many of his new Les Mis-related things (soundtrack, books, phone case, etc.), while Dylan enjoyed a new trike and some Ben10 and Scooby-Doo toys. He desperately wants playdates, which means he's getting back to normal in many ways. But he is forgetting the  playdates after he has them, so it's hard to keep him satiated, socially speaking.

We spent the week between Christmas and New Year's Eve house-and-dog-sitting for the friends we've done so for in the past a few times. They have such a lovely home. Dylan has been feeling so cold lately and takes a couple of warm baths every day at home, so he was elated to sit in their hot tub during the week. They also have huge TV screens and a home movie theater, which we enjoyed (I got to check out the Blu-Ray version of Inception in "Extraction Mode"). It's always like a mini-staycation to go there.

On the 28th, Jana took the boys to an animal shelter and picked out a dirty, one-year-old, white-furred Poodle/Bichon Frisé mix, then took him to a groomer to have it scrubbed and de-flea'ed, bought some dog food and a crate, and brought it home. Chandler named it Gavroche, after a young boy in Les Mis, and Dylan nicknamed it Gabby, after a friend of his (so both names work). Gabby/Gavvy is mellow and loving: he has been licking the boys and quietly checking out the house and his new "humans," although he is afraid of me: I think a man was rough with him in his previous home. May he bring us many years of happiness and therapy. On New Year's Eve, we went to the same house where we house-sat, to enjoy a fun party thrown by the hosts (only until about 10 pm, though, but Chandler stayed up until midnight at home), and on New Year's Day, we had a crêpe brunch at Dylan's friend, Sean's, house.

Chandler was profiled on the website Disney Dads, which highlighted his talent, and our parenting; and celebrated his not being overshadowed by Dylan's illness. You may read the short-but-sweet article here:
An impetus for the article was Chandler's appearance on "The Tonight Show" this past Friday, with a band called Youngblood Hawke, as part of a kids' choir singing backup to their hit song "We Come Running." He had been in the choir backing up the song in the official recording, but had to learn more for this live performance, since they looped the kids' vocals on the official track. Jay Leno really took a liking to Dylan (he lost an older brother to cancer a few years ago), and Jana snapped an excellent photo with the kids, with Dylan in Leno's lap, with Leno giving two thumbs up to the cameras, and with Chandler sitting next to them (you can see it on my Facebook if we are friends on there, link at bottom of this page). The staff tutor entertained the kids with a tour and board games while they were waiting to shoot; and the staff fed them lunch. They gave Dylan a bag full of Tonight Show swag and Chandler and the other singing kids special Tonight Show souvenir hats that you can't buy anywhere. You can watch the performance with Youngblood Hawke at the below Hulu page (US only) for the Tonight Show. Wait for the first ad to run, then you can drag the player to just after 37 minutes to see the musical act. You may need to watch another ad or two, but then you can see the performance. I'm hoping someone puts the segment on YouTube soon for our friends and followers outside the US to watch:

Chandler celebrated his birthday and entry into teenager-hood on Saturday with a trip to Benihana with a dozen friends, and a movie afterward with some of them. He got many gift cards, clothes, books, games, a Totoro stuffed animal, and a Les Mis CD (of course).  His actual birthday is this Wednesday, the 9th (be sure to say Happy Birthday in person, if you can, or on his Facebook, if you are his friend on there!). We are seeking a used bicycle for him -- please let me know if you have one that you might want to sell us. While his presents remain to be opened until Wednesday, I have already bought him a "Flex Pass" to the mainstage shows at the Morgan-Wixson Theatre where his kids' plays and musicals are. If you want to give Chandler a gift that would really mean a lot to him, please consider donating to the Morgan-Wixson, to support the YES youth program (please mention Chandler and put that info in the Notes) here:
The Morgan-Wixson is decades old, and has held on its stage the talents of many, including James Dean and David Mamet. Every time someone new comes to see one of the YES shows Chandler is in, they are amazed at the high level of talent among the kids, and at the quality of the costumes, decor, choreography and play selection. Please help support local theater and Chandler with a gift in his name.

So many of you have sent gift cards, checks, brought over gifts, and even clothes for us, had Dylan over for playdates or all of us over for meals during the last month: some of these gifts are from people we only know online. We are so grateful, and appreciate every one of you! We really couldn't have made it without the aid these five-and-a-half years. It takes a (global) village to raise a child. Thank you.

I also signed on full-time with benefits with Tubular Labs on Jan 1. I'll be able to show more of you what it's all about in a month or two once they go from a private beta to a public one.

Last, but so not least, both boys go back to school today (yay!). Dylan has been very clingy to Jana, and always worried about where we in his family are, and then forgetting just a few minutes after he has been told; so we are concerned, but hopeful this will work out. Based on his new IEP, they will not require him to do a lot of work or take tests, what with his memory impairment; but we do hope he will socialize, and maybe start to remember things a little better. Tune in next Monday for my next report.

The latest (December 17, 7 a.m.): We had a major yard sale last weekend, selling off the boys' old clothes and toys and as many of my books as I could find buyers for. Again, I carried them all out in front of our apartment, then back up and displayed them throughout our apartment, spines up, so any remaining buyers could see them all. Then a charity called Books for People came and took them all away. Although we made good money, it only covers a couple years of storage, so many years of storage were wasted, not to mention the cost of buying them all in the first place. I wish I had the foresight to have seen the digitizing of most of those titles. At least they have found a good home.

Dylan had his IEP at school Wednesday, and all the kids in his class celebrated his arrival; it must have made him feel special (I was not there; I was going to client meetings all week with this new job I have). The class had printed out all the photos they took when Dylan was able to attend school, and made a scrapbook of all those memories and faces. Dylan loves looking at it. At the IEP, Jana fought hard for Dylan to be allowed to attend without having to undergo testing or rigorous work, just to socialize and enjoy being somewhere other than in bed at home. We have noticed that when he has something to do, he will stay awake, but if he is bored, he'll just sleep all day. School would help with this, if we can get him to go and stay there after the break. He has perked up a bit now, and has even gotten upset with Chandler about his constant singing a couple of times; which means something is going on in his brain, since the tumors are in an area that triggers anger.  His memory is still shot: he asks us all multiple times per day what our favorite Ben10 character is; it's kind of like he has Alzheimer's. His puffiness has reduced somewhat, and he complains of being cold all the time, not sure if it's something in his brain mis-regulating his temperature, or from being overweight, or the medicine he's been taking.

On Saturday, Dylan went to half of his karate class, until his legs got too tired, so we walked to the corner and bought a Christmas tree. I carried it home a quarter mile (to save the $25 delivery fee), which was child's play after moving 2.5 tons of books two weekends in a row. In the afternoon, we saw Chandler's last show of "Once Upon a Mattress," and went to his cast party afterwards, which was amazing (photo booth, dance machine, karaoke, a visit from a star who used to be a child actor as well, Candace Cameron-Bure (DJ from "Full House") and lots of food and drink). Chandler had a couple more friends visit for this final show, adults we know from our church -- one of whom is a professional actress herself, and teaches kids' drama also. They were both blown away by the caliber of talent (especially Princess Winifred, who played her last show at the theater, at least as part of the youth program), and they gave Chandler many kudos, and asked him for his autograph after the show. We're so grateful for all those who came out to watch him over the show's run. He has already started rehearsals for "A Midsummer Night's Dream," but it's a version rewritten by the director specifically for kids. You can even buy a copy on her website here:
The ticket link to the show is available below, in last week's post.

Sunday we went to the Paramount lot for a party, sponsored by the Concern Foundation, for patients of Children's Hospital, where we got to see Rise of the Guardians, which we had seen clips from during our VIP tour of Dreamworks Animation. It's pretty darn good, and made Jana cry, so go see it! They gave all the patients and their siblings a huge bag of presents to take home with them. That night, Chandler performed with his "Mattress" cast at his theater's annual awards show, the Geoffreys (named after one of the Morgan-Wixson Theatre's founders). It was my first time to attend the awards show, and it was a lot of fun. It's great to see the "seniors" growing up, and taking on some more challenging numbers; I look forward to Chandler's moment in the Geoffrey's spotlights, just five years away.

Winter break starts at the end of this week and, in about a week, a girl who Dylan was very close to returns to visit after moving to Argentina a couple of years ago (he used to sigh from time to time, staring out the window, saying, "Bianca, where in the world are you?"). They have used Facebook chat and video chat a few times over the years, and it's great to see him smile when they can see each other. But he keeps asking to see her, not remembering that she had moved away; she is very excited to see him during her visit. We will probably post a couple of photos on Facebook (add me below, link at the bottom of this page).

I'm grateful to my friends from my high school church youth group back in Dallas, who all got together to send us some funds, to have more of a Christmas than we were planning. Whatever we don't spend on presents for the boys will go toward January rent. We've also received a few other monetary gifts from friends this month. Those gifts, along with the money I've earned on contract, will help relieve some of the stress the holidays, end of year and end of COBRA, and turn of the month with major bills due, will bring. I'm talking to the CEO at the end of the week about converting from contract to full-time employee with benefits.

Since Dylan is getting chemo every other week (his next dose is Wednesday), and he is still pretty weak and low on energy, we can't really go anywhere for the holidays, and couldn't afford to if we were free to anyway, so we will stay at home, and enjoy the new Christmas tree. Plus, Chandler must be here for the release of the movie version of Les Misérables, which he is going to the very first screening of with his theater friends on Christmas Eve. We've had holidays here in L.A. before, but it's not the same as being with our extended families; we will miss them, especially on Christmas eve and morn.

I was told again recently that some of you are upset when I do not update more than once a week so, I hesitate to say this, but you will really be bummed to know that I'm not updating again for three weeks (unless something bad happens), to just focus on work and enjoy my family over the break. Assume all is well with us unless you see an update on Facebook. Hope you all have a great holiday season, and experience true joy and love.... Merry Christmas, happy Hannukah (already over), Kwanzaa, Ramadan, Festivus and New Year!

The latest (December 10, 6 a.m.): Dylan tolerated the CCNU very well (see blog below). Dylan has been waking up a bit more since my last update, although he still sleeps a lot. He seems a little more out of it when he's awake, but it's hard to say if that's a result of the meds he is on or just sleepiness. But he was awake enough to go to dinner last night at one of his favorite restaurants, El Cholo (the one on Wilshire), meeting up with my dad's cousin and his family. I think Dylan's favorite part of the meal was the pralines they bring with the check. His next dose of Avastin is on the 19th.

There are still quite a few seats left for the closing show of Chandler's current musical, "Once Upon A Mattress." The last show is always the best, because the cast has ironed out the kinks, and they give it their all for their final show. You may purchase tickets at this link:
Also, congrats to Chandler for landing the role of Peter Quince (one of the comic "mechanicals") in the theater's next production, "A Midsummer Night's Dream." That show starts in February and it's his second Shakespeare play with the same director, who rewrites the plays to make them more accessible to modern kids. You may buy tickets at this link:

A big thank you to those who came and helped Jana with our yard sale. It was a huge success. I was pleased so many book lovers came out to peruse my books, indeed to praise them, even. I was sitting with Dylan upstairs and had to come down three times, because people demanded to meet the "genius." One frequenter of book sales remarked that it is by far the best personal book collection he had ever seen. We will be selling the remainder this coming Saturday and then plan to donate the rest to a charity.

Last, and definitely not least, I started my new job with Tubular Labs, including a trip up to Sunnyvale to meet everyone and ask a ton of questions (drinking from the firehose, as they say). I am learning a lot about startups and how I can be most effective helping them with their strategy. I travel back up to Sunnyvale tomorrow night for their holiday party, and hope to meet their board and investors, and get to know their employess better on a personal level. Then the CEO, VP of Biz Dev and I fly back Wednesday for wall-to-wall client meetings through Friday afternoon. It will be an excellent way for me to learn about customer problems and needs and how our solution is and is not solving or meeting them. The basic idea is to help YouTube channel owners get, keep and grow their video audience. It's in free beta right now, but if you are serious about your YouTube presence, feel free to sign up, and you just might get in (be sure to tell them I sent you in the referrer field!):

The latest (December 5, 10 p.m.): Dylan woke up on his own and spent almost the entire day awake on Monday, but then he slept through the day Tuesday. Today (Wednesday), we woke him and took him to the hospital for a new regimen of chemo (described below). I am writing the blog at night instead of my usual morning post, because I am traveling up to Sunnyvale for the day to meet my new co-workers, and dive deep into their business.

The trip to Children's Hospital took an overall eight hours for what was a total of about two hours of treatment. The rest was waiting, talking to the doctor,moving from room to room,  and driving to and from the hospital. We met with the doctor and discussed a few topics, including Dylan's "awakening." The doctor decided to stop the steroid and switch Dylan immediately to hydrocortisone, which should add the cortisol to his body that his adrenal glands are just now starting to make again. He is to take the hydrocortisone twice daily to avoid Addison's disease, which is related to the adrenal glands failing. If he should develop a fever, we need to give him a triple dose right away, and possibly bring him to the E.R. Otherwise, the hydrocortisone hat should help perk him up and we hope to have him back in action some time next week, if not sooner. There is a performance of "Amahl and the Night Visitors" I'd like to take him to see at our church on Sunday morning (Chandler definitely wants to see it); I think the boys will love it. Dylan has also been very shaky on his feet, which is a result of the steroids and also from muscle weakness from sleeping so much, so this can be changed. He has lost a little weight from not eating as much, and that should continue; he should also lose some of the hair that's grown on his legs and face (he has a little moustache that he plays with), and, hopefully, his very tiny, weak voice will get stronger; we can barely hear him if there is any background noise (while driving, for example).

After confirming Dylan's stellar blood counts, the first treatment they gave him was Pentamidine, which prevents Dylan from contracting pneumonia because of the chemo he's taking. Prior to giving him the Pentamidine, they had to give him Albuterol, which opens his lung passages to maximize the effect of the Pentamidine. Both are given as an inhaled medicine, for about 20 minutes each, through a nebulizer. Dylan did fine with the Albuterol, but the Pentamidine has a harsh flavor and burns the throat. The nurse gave him a lollipop (organic!) and Sprite to help. I sat with him as he did it and refused to wear a mask. I wanted to breath and experience just what he was going through, at least from his bedside. I passed on the lollipop and soda, though (I'm back on a vegan version of my diet and have lost 15 pounds already since getting back from our cruise!).

Dylan also started two chemos, one at the hospital, and one at home. The chemo he got at the hospital was Avastin, which was an I.V. drip over 90 minutes, after passing a urine test to assure there is no protein in his urine. He gets it again in two weeks for 60 minutes and once more two weeks later for 30 minutes. He watched TV and took a nap with Jana while the I.V. was going, while I went downstairs to get the hydrocortisone, and the new chemo, CCNU. He only takes the CCNU once, which he did around 8 pm. It's a time-release capsule and takes a long while to work, and also has side-effects that can last for weeks (described in a blog post below), so, after the next visit, we will be checking his blood counts weekly using our hospice nurse, since that is easier than driving out to CHLA. He would not take another for another 6-8 weeks, depending on MRI results. CCNU can cause some kids to throw up, so we also gave him Zofran a half-hour prior. As of this writing, he has not thrown up, but we will see what the night brings....

The latest (December 3, 5 a.m.) Dylan perked up a bit yesterday afternoon for about an hour or two, without us having to wake him up, which is a good sign that his adrenal glands are starting to pump a little now, after tapering the corticosteroids. Saturday, we went to the California Science Center to see the Endeavour space shuttle and also visit the Cleopatra exhibit. The latter was a school assignment for Chandler, but we only had about two hours there before we had to whisk him off to his theater for his musical. Dylan was so tired during the exhibits that, at one point, he was sleeping while walking and holding Jana's hand, poor guy.

Yesterday, I got all our boxes out of storage (they were not all books, by the way: we had a lot of baby clothes, photos and photo albums and other things that were Jana's and which we have to find room for, or also sell). In our 4'x10' unit, there were 133 boxes, averaging 40 lbs each, so I moved more than 5,000 pounds in one day, from 9 to 6, all by myself. My heart is still pounding this morning as I write this, although I think the soreness will hit tomorrow. I had to do this today to avoid yet another fee for the month. The apartment is now full of boxes, strategically placed, which our friend who is an Amazon reseller can go through when she has time. We'll eventually get them sold through her, at garage sales, or just donate.

I start a new job today, on contract so as to optimize my current benefits and out-of-pocket expenses, and then, if all goes well, switch to employee status near the end of the month. The company was started by a friend of mine, Rob, who moved up north, but who needs someone here in L.A. to convert his "beta" customers to paying customers. The company is called Tubular Labs, a startup working with YouTube channel owners, helping them read their data to use it to grow their views, subscribers, and thus revenue, We have our first conference call and web meeting today, and I fly up there Thursday to dive deeper. Rob had read my call for help looking for work a couple of weeks ago, took a look at my resume and found that my experienced matched a need he had for someone dedicated here to do what they up there do in their spare time. He and I used to chat up the digital world while our kids were at karate, and after church (they used to attend our house of worship when they lived down here). So, it was a combination of personal networking and social networking that made it happen, which I learned in my job hunt seminar are the two main ways people usually find work.

We start Dylan's next regimen of chemo on Wednesday. More on that below; we are hoping for minimal side effects.I'll update again early Thursday morning with how he did.

The latest (November 29, 6 a.m.): We met with Dylan's oncologist yesterday afternoon after they drew his blood, no problems with his port, like last time. We saw friends from family camps from past, again (this means we have become veterans), and Dylan made a new little friend, a 1-year-old girl named Gabby that wordlessly demanded to be held by Dylan in his lap.

Dylan's blood counts were stellar, and the final MRI results confirmed our preliminary results from a couple of weeks ago: tumor shrinkage, which was a relief. But the doctor also said there are no clinical studies for which Dylan qualifies. That's not all bad, since that means there's no travel in our near future (perhaps most important to Chandler). He did have some hope, and all the treatments offered below are outpatient, pending no complications, so we will stay in town for Christmas, and not be in the hospital more than a few hours per week (really hoping we are not hospitalized for Christmas, because of infections: this has happened on holidays past). Most important to the rest of the family, I have agreed that they can get a dog, since we are not going into the bone marrow transplant or traveling. I don't really want a pet, but it's a lesson for all you wives and children out there: persistent nagging works!

We first asked about how tired Dylan is: he has been sleeping literally all day long, only waking to take his meds and eat a little, only bodily getting up to go to the restroom. Our hospice nurse suggested Ritalin, which they give kids who have this kind of chronic fatigue, but our oncologist said that would not be the right thing to do in Dylan's case. He did say that the tapering of the Decadron is a cause of this, and that we should continue to taper slowly over the next two weeks, so his adrenal glands will start to work again and make him less sleepy. He should also lose some of the "moon face" and puffiness. He has already stopped being so hungry, and is too sleepy to eat much; so we hope this will lead to some weight loss. After one more week, we may switch him to hydrocortisone instead, depending on the blood counts we get next week. The doctor was surprised Dylan was never prescribed Pentamidine, which would prevent pneumonia, which he is susceptible to; so we will start him on that next week. It's a kind of medication that is inhaled, and a kind which he hates. We need to keep an eye on him for any kind of severe cold or high fever, and give him more of the steroid, if he develops one.

The next suggestion was to start him on Avastin, which may also alleviate any sleepiness from the radiation he had over the past couple of months, although that should have ended by now; but you never know with Dylan, his responses have been unique in both directions, good or bad. Avastin also helps work against the necrosis (tissue death) that radiation can cause. And, perhaps most hopefully, it may also work against the cancer itself as an "anti-angiogenic" agent: by killing the blood vessels that feed the cancer cells and, since Dylan has never tried it, the doctor is hopeful. Dylan would get the Avastin as an I.V. outpatient once every two weeks. Possible side effects are bleeding in the brain or urine, since it also affects other blood vessels; and it also makes him susceptible to infections, because of the lowered blood counts. So they will check his urine, blood pressure and blood counts twice a week.

He also suggested Dylan start on CCNU, which he had mentioned before, and which usually works for children who have failed with Temozolomide (which Dylan has had, and which did not work). It is a "classic" chemo, as old as the 1980s. It's oral, and does cause hair loss (although there is not much left to lose after radiation). He only takes one pill every 6-8 weeks, at home at night and, since it causes nausea, we would give him Zofran, an anti-nausea medicine just prior to taking it. The CCNU seriously affects blood counts, and that effect worsens over time, so this is not a permanent solution. Dylan may need blood or platelet infusions during that time -- if we need anyone to donate and direct either to Dylan, we will put out another call, as we have done in the past. We will likely have another MRI at the end of that 6-8 weeks. We will start on both drugs and the Pentamidine next Wednesday.

We will remain on hospice through the end of their contract, which ends December 31, only because it helps us a lot to have the care they can offer, and to have someone on hand should Dylan suffer any more seizures or get any infection. We will re-evaluate the contract at that time with our oncologist and nurse case manager.

Dylan slept through the whole meeting, so the doctor woke him briefly to ask if he enjoyed the cruise (which he didn't remember), and to let him know we would see him in a week. Dylan said in his weak, but cute, little voice to the doctor, "OK, have fun until then!"

Lastly, thanks to all of you who have helped me with my LinkedIn profile, forwarded my resume to HR departments with a thumbs-up, and sent me relevant job postings. I have a phone call about a job today that might work out perfectly for us, and will also investigate those leads today and tomorrow. I'll update more on Monday. OK, have fun until then!

The latest (November 26, 5:00 a.m.): We have an appointment with Dylan's oncologist Wednesday afternoon, and are supposed to find out more about potential Phase 1 studies we could try, and if they involve more travel. I'll update this blog again on Thursday.

Our COBRA insurance coverage runs out at the end of December. The only way it could continue for Dylan is if a major life change (my death, divorce, separation, reaching age 65) were to occur, and none of those are a viable option. [NOTE: after reading this, a couple of friends told me about Cal-COBRA, wherein we can extend our coverage for 18 more months. However, it does not count for my particular coverage (because at Myspace/Fox, coverage was "self-funded"), but I did get to speak to a very knowledgeable woman at the Department of Managed Healthcare with the state of California about our other options and we should be alright, even if I don't find work. Thanks to many friends who have chimed in on Facebook on this topic and helped me navigate these confusing waters.]

Now that Dylan's situation is stable for the near-term, I'm looking for full-time work with benefits (the insurance premium is more than $2,000 per month). I would appreciate any help you can offer. My experience has mostly been in the digital advertising sales support arena for world-class websites. I should be at a Director level position or higher by now with my experience, but Dylan's illness and the nation's economy have held me back from earning what I'm worth, and working where I want. I was earning six figures at Myspace and would like to maintain that quality of life, but the benefits are more important at the moment. You can see my extensive and varied work history, and please add me on LinkedIn, if you use it, here:
It doesn't matter if you live in another city, or work in another industry. I've learned people can be connected in all kinds of ways; you may have an associate that could help. Also, please endorse me in my Skills area on LI (it just takes a few clicks) and, if we have worked together, and you haven't already written me a recommendation, please consider taking the time to do so. I will gladly reciprocate.

Sadly, I have decided to sell my collection of books which have been sitting in storage for years, ever since Dylan was born and we needed the space in the boys' bedroom for other things. I own literally thousands of books in almost all genres, but now realize that there is no way I'll ever be able to afford living in a space where I could display them again. I will be working with a friend who does this for a living on Amazon, hoping to make some money back and then I'll just donate what won't sell to the library or put in the Komen bin by Whole Foods, or we'll have some yard sales. I had always hoped for better times, but now know those hopes were unfounded. And, to quote Warren Zevon (who was quoting the philosopher Schopenhauer), "We love to buy books, because we believe we're buying the time to read them." I see now I pretty much out of time as well as money, and can at least get some of the latter back.

Below please read my detailed recap of our Disney cruise, if you have time. Best. Vaca. Ever!

The latest (November 25, 11:00 a.m.): Our holiday actually started last Saturday for Chandler, who had two mitzvahs to attend (one bat and one bar), and saw "The Book of Mormon" with a friend that night. Dylan went to karate for the second time last week, but the second class was more intense; he just can't move like he used to, because of the seizures, the large amount of time sleeping, and the huge weight gain. It made him really sad. I was glad to leave town and just forget it all for a week. We decided to bring his wheelchair on the boat, although we still want him to keep his strength.

Our Disney cruise to the Mexican Riviera was phenomenal! The weather was glorious and the staff took care of our every whim. All the best photos are now on Facebook here. Here is a day-by-day recap.

DAY 1: Our first day was a breeze. There was no traffic down to the port and we were all amazed at the size of the ship. We sailed right through the checkin process, having done most of that online and went straight to the buffet, where Dylan enjoyed a hefty meal and five (5) desserts!

When we got to our room, there were many gifts waiting for us from my family: water bottles galore (to avoid Montezuma's Revenge on our excursions), a fruit platter for corticosteroid-hungry Dylan, a note saying that we had a spa package reserved, a note saying we had a bottle of wine each night, and a note saying that $350 had been applied to our room, so we could enjoy our excursions worry-free, and even get some souvenirs. The boys have a bunk bed, and were happy to see a TV in the room (playing Disney channels only, of course). We have a nice, private balcony and marveled at the view.

We toured the boat after a mandatory security drill that no one understood and, after a welcome party on deck where Jana danced like a madwoman, we went down to introduce ourselves to the onboard hospital staff, and just familiarize ourselves with where it is and what their hours are. We met a woman who had taken in her granddaughter for an ear infection; they were from Arkansas and had heard about Dylan and their church has been praying for him! I was wondering if we might see someone we know on the trip, but never guessed someone we didn't know would know us! It's a small world, after all. (Sorry, couldn't resist!)

At dinner in the Animator's Palette restaurant, the whole place starts out black and white and slowly turns colors using small lights. It was a lot of fun. The other two major restaurants are Parrot Cay ("Cay" is pronounced like "Key"), which is more Caribbean in style, and Triton's which is more ritzy. There are also three snack bars and self-serve sodas and ice cream stands! At the restaurants, we shared a table every night with the same family, from Walnut Creek up North, and they are wonderful. We had lively conversation the whole time. The food and drink servers (Miguel, from Cuba, and Kayann from Barbados, respectively -- most of the staff is international) also follow us through our assigned meals, so they know who is vegetarian, for example. After dinner, we went to sleep early and all slept soundly through the night. Every night, our room host would fold towels, origami-style into various animal shapes. I took photos of them all and put them in the Facebook photo gallery.

DAY 2: This was our first Sea Day: all day at sea. The movement of the boat is very stable; although it feels somewhat like an earthquake, and the room creaks a bit, also like tremors. Jana felt a little ill the second morning, but the patch she was wearing, a little toast and a workout helped. She did not feel sick the entire rest of the cruise.

We had a "character" breakfast where all the Disney characters come dressed up to the tables for photo ops. There is a boy Chandler's age in our table-mate family, so he at least has someone else to talk to on the ship. He is not interested in going to the club for tweens or meeting other kids his age. I was (and still am) terribly shy, so I understand his hesitation, but I really wish he would venture forth more in these situations. I'm glad he is doing well at school and at his theater socially, though.

Jana went on a scavenger hunt while I stayed with Dylan as he napped, and Chandler listened to music on the iPod shuffle we were given for the cruise by our benefactor. Jana also went in the adult's pool and hot tub after we had lunch together at the snack bar by the kids' pool. Dylan loved the self-serve ice cream machine. We attended a live show ("The Golden Mickeys") in the afternoon, played foosball, had a Caribbean-style dinner and went to a comedy show after. This was the "formal night," where guests can meet the captain; many of them wearing tuxedos. We dressed our best, but opted out of the lines to meet him. Unfortunately, that night, Chandler spent most of the night throwing up, maybe because of the boat's movements, along with too much sugar, and still having to fight off a cold. He was better the next day.

DAY 3: We set our clocks ahead an hour to be on the Mexican time zone. After spending some time in the hot tub first thing, Dylan spent much of the day in the room asleep, likely a response to the tapering of his corticosteroids, only waking for lunch. We happened to bump into my old boss, Chris, from Participant Media after we ate, not knowing he and his family were also on the cruise. It was nice to see him and introduce him to my family. I had hoped I would get to meet his family: he shared so much about them when I worked with him, but no such luck. With 2,500 guests and 1,000 crew members, and so many varied activities, it's like a small town on the water. In the afternoon, we hung out in the room watching a Zach and Cody movie on the TV in our cabin (which plays all Disney channel shows and Disney/Pixar movies) until dinner time. After dinner, Dylan wanted to go (back) to sleep. Chandler and I went to a ventriloquist comedy show, which was hilarious. He went to bed while I stayed up past midnight to watch Lincoln, which was playing in one of their theaters (and which also happens to be a Participant Media movie). It was sublime, and funnier than I had expected; so it was good to see it with a crowd. I haven't seen a movie in a theater for months.

DAY 4: The boat arrived at our first port of call in Puerto Vallarta. We took a bus out to Paradise Resort, where we enjoyed the surf and warm weather, a free lunch and free margaritas (too many on my account, I was told later!). Dylan, again, slept the day away but Jana went boogie boarding while I watched the boys, both of whom were feeling sick, until our return to the boat. While Dylan slept in the room, Jana and Chandler played foosball and then we went to dinner, where the theme was Pirate night (Dylan and I had brought skull-and-crossbones bandanas to fit in, a bit). We got Chandler some Seacalm, which was free seasickness medicine offered by the local hospital. It helped him a lot, all through the rest of the cruise.

DAY 5: We arrived at our next port of call, Cabo San Lucas, where we stayed moored all day today and half the day the next day before shipping home. We had an excursion planned that involved snorkeling and, with Dylan's extreme tiredness, Jana and I agreed that I should stay with Dylan on the boat. It turned out to be a good call. He and I spent an hour in the hot tub and having lunch, while they cleaned the room, but then he slept the rest of the day, still feeling the effects of weaning off the corticosteroids. Unfortunately the excursions are non-refundable, so we had to eat the cost of two of the four tickets ($150 down the drain). But Jana and Chandler had a great time on the excursion: they took a fast dingy out to the rock formations, then to a beautiful beach, then to another spot where they went kayaking, paddleboarding, water scootering and snorkeling: seeing all kinds of ocean life, including sea lions which were all barking and Jana noted two that kept kissing each other. After Thanksgiving dinner, Dylan went back to sleep; while Chandler and I went to another show ("Toy Story, the Musical") and another movie (Frankenweenie). Both were a lot of fun, both featuring a young boy as the main character (so much of Disney is about princesses, as we have been reminded again and again on this voyage), both reminding me to let Chandler be a boy while he still can; he is growing up so fast.

DAY 6: Our second day in Cabo was a half day, before they turned the ship north for home. With no excursions planned, we stayed on the boat. Jana went in for about an hour and bought some souvenirs. Other than meals, we woke Dylan up so we could all see Wreck It Ralph, which made him laugh; and then Chandler and I got to see the Emerald-award winning musical "Disney Dreams." Chandler joined our table-mates to see Brave as Jana and I tucked Dylan in for bed. Then I stayed up late to see The Odd Life of Timothy Green, which the rest of the family had seen in L.A., which is about a couple that is blessed with a special son for a short while who changes them, making them better parents and better people, and which made me cry for our own boys, not just Dylan who may only be with us a little while longer, but also for Chandler, who is different and beautiful for it, who is just as full of love and life, and for whom I wish I was a better dad. He has complained recently about being forgotten, living in Dylan's shadow, and he is right. I must make an effort to do better with him.

DAY 7: Our last full sea day was focused almost exclusively on relaxation. After breakfast, Jana took advantage of the spa and the "rainforest" room for her second day while we boys napped in the room, and then I went to a "behind the scenes" presentation given by the VP of music for all Disney and Pixar movies, focusing on how the music for Wreck It Ralph was written. I even caught a fleeting glimpse of my old Participant Media boss, Chris. It figures he would be at a movie preso! For dinner, we dropped the boys off with our tablemates, while Jana and I went to Palo, a fine dining establishment for adults only, featuring Northern Italian food. It cost us a pretty penny to eat there, but it was worth every penny. We retired early, especially so Chandler would have energy for his show tomorrow.

HOME: We had one final meal with our new friends at breakfast, exchanged information and hugged them goodbye. Jana cried as we walked off the ship; she did not want to leave. It was such a magical time. While we were not able to participate in all the activities because of Dylan's low energy, we still had a great time. We are so grateful to Todd and co-workers at the Rubicon Project, and to my family and friends who sent cash to help cover our personal costs: they helped pay for the memories we will all treasure for the rest of our lives, however long that may be. Thanks to you all, and may all your wishes come true!

The latest (November 14, 5:00 p.m.): We went back out to Children's Hospital to get the MRI results, ready to hear anything, good, bad or neutral. It was the busiest I have ever seen the place with lots of sick kids; I was fearful for our cruise next week, hoping none of us gets sick for it. We were happy to see three other cancer moms there, so the friendly faces helped with the tension a bit. Once we were in our room, Dylan's oncologist poked his head in the door just to set our minds at ease. He told us there had been significant shrinkage of all the tumors; there were still a couple left on the tips of the temporal lobes on both sides, but even those have "signals" that look like they may be calcifying (i.e. dying), as a result of the radiation Dylan had last month. Then he had to see to other patients.

The oncologist came back in a while later to give more detail, and discuss the future. All the tumors that were there before had "evaporated" -- we cannot say they are "gone," but they are not detectable by scan, which is enough for us. The edema and other swelling has also reduced dramatically, although his ventricles are small enough to have caused the doctor some concern. He called in Dylan's neurosurgeon to take a look, and they both agreed that it's the Decadron (corticosteroid) that is causing this. Since the steroids can also cause the adrenal glands to shut down, they want to taper him off the steroids asap; which was music to our ears, since it makes him so bloated and hungry. The downside is he may be more drowsy as we taper. He gave me a two-week tapering course to follow, and I've relayed that to our hospice nurse so she can refill our prescriptions for that and for Keppra (anti-seizure), which he also lowered, so Dylan may have more energy for the cruise.

We made an appointment to see him again in two weeks: he has some ideas on how to treat Dylan (one option has worked for another kid we know, a medication called oral CCNU), but he wants to discuss options with some other doctors, and present us with all the Phase 1 trials that apply, after reviewing the field. Before leaving us, he made a point to ask about Chandler. The doctor was at family camp with us, and told us he told Chandler things about Dylan's limited future that may have shaken him up, but also gave him a chance to cry it out, and accept some hard realities. He said he wouldn't tell us how long Dylan has left, because he would only be able to say if the tumors had not shrunk or had grown but, with such significant shrinkage, he said we were talking months, maybe longer, depending on what the other options are, and how well they work. He attributed the neck pain to the swelling from the steroids as well, and assumed that will go away as the swelling does.

He said I can, and should, go back to work, now that we are out of danger, although we will stay on hospice for the convenience. (This comes just in time, because our COBRA coverage runs out at the end of December, and I had already started to research alternatives, and they aren't ideal for our situation. Once we're back in town, I'll be putting out my resume, and asking you all for help getting it out there.) He wished us bon voyage, hugged Dylan tightly, and gave us the official MRI report.

We leave for our Disney cruise Sunday, and we are all so excited! The beauty of Dylan's amnesia is we get to tell him all about it over and over, and see his elation every time. For those who missed previous blogs, the cruise is not a Make-A-Wish trip (we used that one up a few years ago, going to Hawaii), but is a gift from a friend and former co-worker at Myspace and from his current co-workers at a company called Rubicon. We couldn't be more grateful! Here is more information about the cruise:

I won't update this blog again until we get back, because I want us all to spend time with each other and not with our devices. Plus, internet costs on the ship are so exorbitant, (And we are not bringing our cell phones, either, because of roaming charges), so we will not be on Facebook or email either. Sorry for those of you who have already told me about the SuperDylan withdrawal you go through when I don't update often enough, but hopefully this good news has given you a good strong fix, and trust me: the photos and summary of our voyage will be worth the wait -- guaranteed!

The latest (November 13, 7:00 p.m.): We took Dylan in at 2:30 this afternoon, prior to his MRI, to get his port, which leads directly to his heart, unclogged with TPA by the oncology nurse assigned to us at Children's Hospital. Our hospice nurse was able to "flush" his port (injecting a saline solution in), but she was never able to draw blood out, assuming the blood inside had clotted from disuse (his port hasn't been accessed since his last surgery, a couple of months ago). So we hoped for better luck at the hospital with the TPA, but they could not unclog it either; so they had to stick a needle in the top of his hand, which he usually hates, but with his amnesia, the dread of the needle was gone and he hardly even felt it. The needle was to give him contrast for the MRI, which helps tumors show up better.

I had been concerned that Dylan, with his short-term memory loss and amnesia, would have problems in the MRI room: he asked three times on the way to the hospital where we were going, and then had also forgotten what an MRI was and if it hurts. I was afraid he would forget where he was while inside the machine and try to get up and find Jana, or at least not hold completely still and thus make the scan take an hour or longer, risking getting same-day results. But my fears were all for naught, as Dylan apparently slept through the whole thing and they didn't have to stop or re-scan (the tiredness from radiation and the anti-seizure meds has an upside at times). And although I'm sure he had forgotten our promise of ice cream for being good in the scan, we brought him some anyway, and got the biggest smile ever!

Then, after the MRI, which was short (45 min), because they're only scanning the brain and not the spine, we had to go back up to give him more TPA; the plan was to leave it in overnight and come back tomorrow to see if they could draw blood. If they were not able to, they would have to consult one of their resident port experts, a nurse who has been there for decades, and perhaps even remove his port surgically. I suggested they just try and draw again first, and it worked! (Yay, Daddy!) They gave him more TPA anyway, because it can't hurt him and will continue to dissolve any clots, but we don't need to return just to check if it's working.

I had also suggested to the nurse earlier how, because Dylan has gained 15 pounds with the corticosteroid hunger over the past couple of months, perhaps he needs a longer needle to access it through the thicker layer of skin, which at first they ignored, but then, seeing how close the needle shield was to his skin (there should be a little space between the skin and the shield), they also agreed was correct (Yay, Daddy!), so now he uses a 1" instead of a 3/4" needle.

However, all this took so long to work out, that Dylan's oncologist had left by the time results would be ready, so we are going back out there to meet with him tomorrow afternoon at 1:30. I will update the blog tomorrow with results and anything else he tells us, once we get home.

We picked up Chandler at a friend's house and arrived home to a warm meal and a box of new superhero action figures sent from a friend of a friend who used the same heroes in his own life to get through tough times. He wrote a very moving letter and, frankly, this is one of the most heartfelt gifts I think Dylan has ever received, because it's really from one boy (the one inside the man) to another boy (who may never become a man). Dylan marveled at all the action figures, whispering "awesome" and "cool" over and over, and then, knowing he was safe at home with all his family present, he fell into a deep, snoring sleep. Thanks to all of you for your continued support, and thanks to Chandler's friend from school, Maga, and her parents for taking Chandler in so many times, and often for longer than we expected. Gracias y abrazos!

The latest (November 12, 2:30 p.m.): UPDATE TO THIS MORNING'S POST: The MRI was moved to tomorrow (Tuesday) at 3:30 p.m., because there was a "problem" with one of the machines. This is the second scheduling change from 6 p.m. tomorrow, so we may be able to get results tomorrow night. I'll update Wednesday some time, hopefully early morning, pending when we get our results. This only serves to increase our "scanxiety," but at least now the time is better for traffic. Thanks to everyone who has expressed their support and concern.

The latest (November 12, 4 a.m.): Dylan has an MRI today. This is our most important scan yet, since it may tell us how much time he has left. Our oncologist is hopeful that there will be a significant reduction in his tumor load, thus buying him more time. We won't have results until tomorrow. I will update again on Wednesday.

Physically, there was not much change to report for the week: Dylan seems to be gaining a bit more energy. One day, he walked about half a mile with me, with rests, up and down our street, and he went to 3/4 of a karate class, which is 1/4 more than last time. However, the day after both workouts he slept almost the whole day. He is always tired and yawning; but it seems the radiation is wearing off, which is one thing making him so tired. He is also on anti-seizure medication which is adding to the drowsiness, and on so much that we will ask our oncologist if we might be able to take it down a bit, and also perhaps reduce his corticosteroids that make him so hungry. I don't think the bloating will also go down, though; I think that is permanent. We don't want any more seizures: they have ruined his memory so much, but we'd like him to have more energy for the Disney cruise we're taking next week. Also, he asked to shave off the poof of hair left on the top of his head from radiation, so I shaved off my mohawk and have a Kojak now. Who loves ya, baby? :)

The three of us went and saw Chandler in his current musical on Saturday (info below, with a link to buy tix, below from last week's blog), and it was another triumph for the Morgan-Wixson's Y.E.S. program. From the superb princess to the ensemble, from the costumes to the choreography, it was great: the kids are all so talented. Dylan loved it! Chandler learned some tap dancing skills, and I just loved watching him. It's hard to take in the whole show, because I'm beaming at him whenever he's on stage. We're going again for their last show. It's been great to know that Chandler has a place where he can cope with all that's been going on by throwing himself into learning the songs, and experiencing the "flow" that artists and athletes enjoy. However, it also cuts deeply into his time to do school work and so today, although a day off, is devoted to a couple of major school projects.

More meals, groceries, visits, help with laundry and gifts of service and creativity came our way. Thanks, as always.

The latest (November, 5 a.m.): Dylan had another stable week, featuring a visit from my parents and one of my sisters. We spent a lot of time around the house, and had a few meals at their hotel. We carved pumpkins and played "War" (card game) many times, ate tons of food in and out and at their hotel. With his short-term memory gone, one day he woke up from a nap to find them all here in our apartment, and he burst into a huge smile, hugging everyone as if they had just arrived. He (and Chandler) really perked up for Halloween, trick or treating around our neighborhood and then over at my friend, Ken's, house which is one of the biggest attractions in town. We were even lucky enough to get "backstage passes" to go inside the house, and enjoy lots of good food and entertainment. (More on Ken's house from an article a few years ago in CNN -- scroll down for a link to a time lapse video -- plus, this is from a few years ago and it has grown even more):
Dylan went as SuperDylan, cape, mask and all, while Chandler worked with Jana to sew an Enjolras costume (his character from Les Mis, which he was in over the summer). I shaved my hair down to a buzz, except a mohawk-ish strip in the middle to match Dylan's radiation hair loss, to be in solidarity with him.

My family was highly impressed with how many people have been reaching out to take care of us in so many ways. We got them to add their handprints to our family tree of hands, and hope to get the rest of our family's handprints over the winter break. They left on Friday, and they are sorely missed.

I took down the signup genius links from this site, because we are ready to be cooking our own meals again, and eating more lean. We loved all the meals people cooked and brought us, but have to stop because we have all gained too much weight, especially me. (Note: we are still getting meals on Tuesdays and Thursdays from the other signup created by moms from both boys' schools for the next couple of weeks, but we took down the other meal signups.)

We will keep asking friends for help with cleaning and laundry, but Jana will coordinate that directly instead of online. And we have enough gift cards and wish list items granted to last us the rest of the month. We are so grateful. A friend's dad who writes for the Dragons of Berk TV show came and read an episode to Dylan and brought a signed poster. We've had all our posters framed so Dylan can enjoy them on his wall. But Dylan's getting too restless to sit and listen to people reading to him, so we've also discontinued that. He was knocked out on heavy drugs from the seizure when I first thought it would be fun for him. Now he just wants playdates with his friends. He also remembered that he loves to play handball when he saw some other kids playing it the other day. Dylan has had more playdates, visits with friends and another friend's dad is coming over today to make a video interview of Dylan. Can't wait to see it! We're also having a visit from our second cooking coach, Brant, tonight to cook dinner together with Dylan. Can't wait to taste it!

Dylan's neck pain comes and goes, but seems to be related to sitting up for too long, when he's supporting his head. We have been managing it with Tylenol, Advil and occasionally morphine, as well as Jana massaging it out as he lays flat or on top of an exercise ball. We took him to church during the "Connexion" community hour to play and draw, but he couldn't make it more than an hour before we had to bring him home, so he missed the Sunday School portion (which features his favorite, the feast: Hawaiian bread and grape juice). At least it doesn't seem to be getting worse: we are hoping he is in good shape for our upcoming Disney Cruise over Thanksgiving week. He has been swimming a few times and even went to a gymnastics gym for special needs, where he got a little workout on the trampolines, but he can only exercise for about a half-hour before getting too tired to go on. Hopefully this is an effect of the radiation which will wear off soon, and he will have more energy for the cruise. Dylan's next MRI is a week from today, in the afternoon.

Our friends from the Little Beast Gym (named after Dylan) and my sister got together to have some SuperDylan tattoos made. They are giving them away to people who donate to their team that is running the L.A. half marathon in Dylan's honor. The race is in January. More info here, if you're on Facebook (if not, call them at 424-832-3533):
We have a ton of tats at home, so if you want some, send a self-addressed-stamped-envelope and I'll pop a few back in the mail to you.

Chandler's latest musical, "Once Upon A Mattress," starts Saturday. The show runs through Dec 15 on Saturday and Sunday afternoons*. Buy tickets here: *Please note that Chandler will not be in performances on the 18th or the 24th because we will be on our Disney cruise on those days, so please pick another day if you want to see Chandler as Sir Studley. :)

The latest (October 28, 9 a.m.): I'm updating on Sunday this week, because I can borrow the computer at the house we stayed in over the weekend. I have been using computers from work since my desktop crashed shortly after Dylan got diagnosed. Since I left work, I borrowed an old computer from my sister. That crashed. Now Jana's computer is in the shop because she deleted some old videos of the boys we are trying to recover. Chandler has a computer for school, but I don't use it since he's usually on it. And I can't update this from my phone, so there it is. Tech nightmare, and I wouldn't care if I didn't have to update people about Dylan. So, here's the update:

We spent a long weekend at a friend's beach house in Malibu (thanks, Tara!). The waves rolled right up under the house at night, and then the tide retreated in the afternoon for us to examine the ocean life and search for shells and sea glass. We saw all kinds of ocean life, including dolphins and sea lions! We enjoyed the view and sounds, and spent much time in the hot tub. A half-dozen friends came to visit (including our favorite cooking coach, Stacy, who came to town and took Jana out paddleboarding (I saw Jaws when I was too young, so the ocean and me aren't exactly BFFs!)), and we also had a visit from my second cousin, who is a musician, came over and played guitar and sang for Dylan. They sang "This Land Is Your Land" together; it was very moving. My parents arrive in town today, along with my youngest sister. Her boyfriend comes in on Wednesday also, and the boys are so excited; so we'll have a fun Halloween.

I stopped working in June, when we thought Dylan was going to be getting a bone marrow transplant. When that was postponed, I interviewed a couple of different places, but nothing panned out, and then Dylan was put on hospice.  Dylan is progressing in little increments with his memory. He went to visit his classmates during lunch on Thursday and he asked the class, "OK, which one of you is Shaheen, because you're my friend." Shaheen raised his hand and he and Dylan smiled.

We received more gifts, gift cards, meals, help cleaning, and we had another person come read to Dylan. So grateful.

Chandler's latest musical starts a week from Saturday, "Once Upon A Mattress." It is their annual fall musical, and it is always a stupendous and amazing production. The show runs through Dec 15 on Saturday and Sunday afternoons. Buy tickets here:

Many people have been asking me if I've been working while all this has been going on. I have not. By design. I want to be with Dylan as much as I can in his final moments. I have even turned down a couple of offers. We had been living off our savings until two months ago, when my parents had to step in and help, and you all have helped in various ways as well. But it's humiliating -- I have enough self-loathing without having to now admit I can't even support my family.... I rolled over my retirement money to a fund I can transfer to my checking account and defer paying taxes on until next year. I'm hoping I can make it to January, so we don't have to pay the taxes until April 2014. We're on COBRA and that runs out at the end of the year. I think I can get an extension, or we may have to move to Blue Shield or Medical or something. Since we don't know how long we have left, I can't go out looking for work. With Dylan's lost memory and constant hunger, it's a full time job for Jana just to manage Dylan, so I've done my feeble best to pick up the slack around the house and with Chandler. It is exhausting, even with all the help we've gotten. The past five years have worn me down, and I feel I'm running on fumes. Thank God Jana is so strong, because I'm not sure how much more I can take....
The latest (October 22, 4 a.m.): I've switched back to weekly blog updates on Mondays, now that the worst is past for Dylan and he's relatively stable. We were granted a private tour of Dreamworks Animation Monday and it was magical. The campus there is very Disney-fied, but not as garish in its color palette or decor. There was a huge 8'4" statue of Po, from Kung Fu Panda (one of Dylan's all-time faves) in the atrium, where we met our tour guide. He was extremely knowledgeable about the place, showed us a video featuring most of their big stars about how they make their movies; the video is only available to tour members; it's not online or on any DVDs as an extra. Chandler seemed really into this video. We also got to see the sound stage and motion capture stage and Dylan got to use the executive restroom! Then our host, who usually helps wounded vets get these tours, joined us as well all sat in a plush theater with our host watching lengthy sequences from upcoming films Rise of the Guardians, The Croods, and Turbo (links below -- you all must go see all three as soon as they are in a theater near you!). Dylan, the consummate film critic, thought every clip was "awesome!" We were then treated to lunch by our host and were sent home with two huge bags full of DVDs, games, books and toys.

Rise of the Guardians -
The Croods -
Turbo -

Dylan had a couple of play dates during the week, went swimming a few times, and another friend of ours came over and read books to him. Dylan and I also went by the Rubicon Project offices, just down the street from our house, where a friend from my days at MySpace works now. He, some of his co-workers, and his CEO are our benefactors on our upcoming Disney Cruise. We were sad to say goodbye Wednesday to Jana's sister who had visited again. Dylan wept when Jana reminded him that she had gone back home. It is the only time he has cried since his seizure.

The rest of the week saw Dylan making slight improvements in his memory, especially with song lyrics. Thursday night a friend of Chandler's came over with her parents. Her father is a guitarist and they learned the chords to the original Scooby-Doo theme song so we could all sing it together. Then he showed Jana a couple of licks on the guitar (she has been teaching herself online and is very excited about learning how to play).

We went to Mountain Center (near Idyllwild) over the weekend to Camp Ronald McDonald for Good Times, where we enjoyed the annual Family Camp hosted by a pediatric brain tumor support group here in Los Angeles called We Can; the camp is free for families who have kids with cancer. We shared a cabin with an awesome family we have bunked with a few years running now. The directors and volunteers are amazing: caring, funny and bright. The camp offers many fun activities for the kids (archery, fishing, hiking, hoops, indoor games and crafts, etc.), and they offered breakout sessions for the adults for a support group, an ask-the-oncologist meeting, and an in-depth session with a family therapist about how relationships can weather stormy times, especially the emotional dynamics between couples under stress. The boys absolutely love camp, not least the savory meals. This was their fifth time to go, and they also attend the Ronald McDonald camps in the summer to which parents are NOT invited and they get to meet other kids.

When Dylan woke up in our cabin, he was disoriented and asked where we were. When I told him, he grinned big enough to break his cheeks and said, "That means I'm going to have a lot of fun today." He remembered that much, at least! During the breakout sessions, the kids are split between their age groups, and also between patient and sibling, and each group does projects and has their own ask-the-doctor sessions and talks with social workers about their feelings. No one ever has to talk if they don't want to. Then, on the last night, the kids all put on skits for the adults at the campfire. Yesterday saw many tears and hugs as it grew on us that it may be our last year at Family Camp (there is also a Bereavement Camp). We all grew closer, we made new friends and tightened our bonds from our trips to camp in years past, and we created memories that Dylan even seemed to recall last night when we got home. We are so grateful for Family Camp, an annual mountaintop experience for us, among people who truly understand each other's plight. More on both organizations below, and for those of you who support great causes, both websites have donation buttons. Be sure to tell them Dylan sent you!

On the down side, Dylan's been having some trouble with swelling on the back of his neck, possibly related to his shunt, which causes him pain. Jana is able to massage it out and Tylenol usually helps; but in the altitude, and with a lot more activity than he's used to, it got really bad yesterday, so we had to give him morphine. Now that we are on hospice, the approach is that he should never feel discomfort and that we need to stay in front of the pain so it does not break through. So we're alternating Tylenol and Advil through the day and hopefully this should be all he needs now that we're back down near sea level.

Dylan has also gained a lot of weight because of the continuous hunger from the steroids he is taking, as well as the fact that he forgets that he just ate a few minutes ago. He will be bursting at the seams with his belly poking out and say, "Dada, I'm hungry." He is a little upset with himself, too, which is heartbreaking, since we know he can't help it. Heck, we all have gained weight, what with all the comfort food and many desserts friends have brought over. He also has only a small tuft of hair left on the top of his head, which he often strokes. And his face is very bloated from the water retention -- a side effect of the corticosteroids he's on to keep brain swelling down. He says he is a water balloon. Classic Dylan perspective!

So many gifts, meals and acts of service have been given to us from our wish list, and some fun and creative drawings and cards have arrived in the mail. We are so grateful and overwhelmed; a nice problem to have. Thank you, all. We are also excited to be staying in a friend's beach house in Malibu this weekend. Our old pal and former cooking coach for Dylan will be visiting us at the same time, so maybe we'll cook up a picnic to have as the sun sets.

The latest (October 15, 7 a.m.): Dylan completed radiation treatment on Wednesday. He is very tired, although he will have occasional bursts of energy -- he even went to karate class for a half hour on Thursday, but most of the time he's been sleeping or laying low. He is very calm and seems basically happy, but not very communicative. He does have concerns if the front door is left open -- it must be shut, perhaps to keep out some Thing that he doesn't want to see yet.

He knows he wants to play games and have playdates, but then seems a little lost playing them. His memory is making small improvements, but is still seriously impaired. If any of the four of us is gone away from home, or even in the other room, Dylan is constantly asking where we are. While Chandler was out of town at school camp last week, he must have asked ten thousand times where Chandler was. Thankfully, Chandler came home Friday, and said he had a good time, although he was glad to have good food.

Dylan told Chandler recently, "I know I used to yell at you when you sang, but your voice is so beautiful, please sing for me." And Chandler sang him the Ben10 theme song, his favorite, as long-time readers know.

He remembers song lyrics from some songs he learned long ago, and they sang a song in church especially for him that he had been singing over and over at home all week, titled "Sweeter." In addition to the song at church, we had some people from the kids' ministry come give Dylan communion and pray for him and our Director of Children's Ministry brought her puppy along. It did him a lot of good.

My call for creativity resulted in some really amazing works of art: a poem, a cool Ben10/Dylan superhero photoshop, my sister is having the superdylan logo made into temporary tattoos, and Dylan's sensei Chris opened a new gym over the weekend that was named in Dylan's honor: the Little Beast. Some friends have helped decorate the house for Halloween, and the recording artist who does the "voice" of Perry the Platypus on TV's Phineas and Ferb sent Dylan a private get-well message.

Even more amazing: through a string of connections, the singer of the Ben10 theme song watched Dylan's video of him singing along with the song and she is his now biggest fan!

We finalized Dylan's "POLST," which is a document that tells paramedics and E.R. doctors not to resuscitate Dylan, or use feeding tubes or breathing machines to keep him alive. At this point, we feel it's best to let him go and not keep him half alive. We also discussed options regarding burial and cremation with a friend who kindly did the hard research for us. We think we will be cremating Dylan and scattering his ashes in some places we know he loved (Hawaii, Martha's Vineyard, the ocean, the tree in front of our home); this seems most fitting, and frankly the costs of interment here in Los Angeles are outrageous.

Jana's sister came to town Saturday for another visit. Dylan was so out of it last time, she should get some quality time with him this visit, although he is still very tired, at least he is somewhat alert and communicative. She enjoyed coming to our church and hearing the song they sang for Dylan. We are getting a special tour of Dreamworks this morning. Next weekend we are going up to Idylwild for the pediatric brain tumor group WeCan's annual family camp.

The latest (October 8, 5 a.m.):>Dylan made vast improvements over the weekend. He even went for a short bike ride with Jana, and walked all the way to CPK and back home on Saturday. He also had other therapies: he went with mom to a friend's house Saturday, where he got hugged gratuitously by three older women (they're 12), and then out with all of us to another friend's party yesterday, where he got to indulge his steroid-driven hunger to the max. He also cleaned out most of the free samples at the farmer's market yesterday, the pluots being his favorite. We have tapered his steroids down to 4 mg per day from 10 (!), so we hope his hunger, and the puffiness of his face, are reduced. We need to watch for headaches or nausea that might indicate swelling in his head, and which could lead to another seizure. He will remain at this dose for at least another month. He is also on a lot of Keppra, which controls the seizures, and is getting more and more tired from the radiation.

His memory is still mostly gone, although he has had flashes -- he remembered a friend's full name who he used to hang out with years ago; and he was singing along, sort of, to some songs from his church camp that was so fun for him and his brother a few years ago, and he remembered the lyrics from his favorite show theme song, Ben 10, yesterday (here's the video). But there are still huge patches of nothingness, and an inability to create new memories, that must be bewildering.

Jana and I went to Chandler's school's open house on Saturday; I'm so impressed with his teachers, they are all so caring and brilliant. And I especially am grateful for the men. With grandfathers far away, Chandler needs strong, but sensitive men in his life who can provide what I simply can't, because I know how large the male teachers he's had in the past have figured in his own sense of self. I'm glad to see some men in our pastors, his teachers, and a few other guys who have been there for him.

Chandler leaves for science camp with his grade this week to beautiful Morro Bay. Our home will be strangely silent -- well, that's not exactly true, we'll probably have Ben 10 or Scooby-Doo blaring -- but we will be lacking the showtunes in the shower and the online mashed potatoes. For those interested in tickets to his show, you can buy them online here:

We continue to be blessed by visits from friends, bearing gifts, and helping with our various chores and needs. A couple of those signup genius links below have been updated as well, for those that have asked. Thank you.

We finish radiation Wednesday. The effects continue to work for weeks, so we won't have an MRI for another month. Until then, we wait. And live.

The latest (October 5, 7 a.m.): Yesterday our associate pastor, who is from South Africa, came by and read to Dylan from a book of African folk tales selected by Nelson Mandela. Dylan was enraptured, although he didn't remember the stories a few minutes later. We also had a visit from our hairdresser (I don't use her much, but the lovely locked rest of my family does! She came to cut Dylan's hair down to a buzz so it doesn't bother him so much when the hair falls out from the radiation. I cut my own hair short myself with a pair of clippers (and the hairdresser praised me, so I think I did alright).

We are grateful for all the help people are offering, and trying to provide. We have been told to add more items that people can do, and will try to think of what that could be. One thing that came to mind: many of you are creatives, especially those of you in Los Angeles, and some have already given of their gifts to Dylan and Chandler -- one person made a video of himself being a rock guitarist, another person drew the boys some pictures, another made a Ben10 poster, others have written their own blogs about Dylan, this being the most recent. We would love it if you can do something creative for Dylan: write a song, or sing a song and record it, draw something, make a video, write him a poem and post it, write your own blog and link to this one, or think of something else I haven't been creative enough myself to think of. OK, let there be creativity!

The latest (October 4, 6 a.m.): Dylan made a major leap forward yesterday, although he's still having a lot of trouble with his memory, but he seems to be recalling more people and things now. We can only hope this trend continues, and that we can keep any more seizures at bay while we taper the steroids to a lower level and hold it there for a while, just to keep the head swelling and his appetite at bay. The steroids also make him susceptible to viral infections, so we need to ask visitors to wash hands or use Purell.

It was Dylan's picture day at school yesterday. I went with him, and meet Dylan's teachers this year, he has one special ed class and a standard 4th grade class. He took pictures with everyone, and just in time, because his hair is starting to fall out in clumps. Jana had more friends drop off meals and spend time with her. We hung out at a friend's house last night for dinner and a dip in their hot tub.

We have received a lot of gifts from friends recently, all wonderful memory-making opportunities: it looks like we are in fact going on a Disney cruise over Thanksgiving weekend (leaving from L.A., not Fla); we have been offered a friend's beach house for a long weekend getaway coming up soon; we solidified some dates for my family to visit; and we are going to be getting a special tour of Dreamworks studios, hopefully including a glimpse into the Dragons of Berk show that Dylan thinks is so awesome.

The latest (October 3, 7 a.m.): Dylan seemed to have a significant leap in improvement yesterday, although he is still far, far from where he was before with his memory. But things seem to be coming back to him. He went to school voluntarily, where they played fun games, including silent ball, a new favorite, and he was sad when he had to leave. We then visited his sensei, Chris, at his new gym for kids, named after Dylan's spirit, the Little Beast gym for martial arts. Dylan remembered Chris' face, but not his name, and that he is "awesome."

Last night, I helped Chandler pack (he did the bulk of it, though) for his school's week-long camping trip to Morro Bay. We will miss him, but know he will be with who he needs most. Dylan always asks where Chandler is while he's at school, so we hope his short term memory comes back well enough to retain that fact. If not, I have been using techniques from the film I mentioned before -- making signs for him, like "CHANDLER IS AT SCHOOL." "MOMMY WILL BE HOME SOON" "DYLAN IS TEN" "TODAY IS WEDNESDAY". The signs helped a lot.

They added the audio from Dr. Stuber's discussion about how to talk to kids about Dylan and the surrounding issues on our church's website:
or you can just access the talk itself here:

The latest (October 2, 6 a.m.): Dylan's starting to lose his hair, and his scalp itches from the follicles dying, as a result of the radiation. Cortisone cream can help, and a mild shampoo. He has had 11 of 18 sessions.

Yesterday, Jana's therapist stopped by for a house call; and then all at once packages arrived from a friend at Mattel loaded with toys for Dylan, a massage therapist arrived to give Jana an in-home rubdown, a woman arrived to clean our home, and another woman arrived to take our laundry and wash it for us. It was overwhelming in a positive and powerful way for Jana. With family far away, it's hard for her to feel cared for.

Last night, four of Dylan's therapists that work with him at school (adapted physical education, physical therapy, and occupational therapy) came over and made Dylan's favorite dish, cake balls! Since he did not remember what they were, he had fun cooking them and tasting them again for the first time. "It's sooooo good," he kept saying over and over. But he did not remember making them just an hour later, sadly.

The latest (October 1, 6 a.m.): Dylan's improved this week in minor ways, but he's still suffering from severe memory problems: amnesia, aphasia and an inability to create new memories. He doesn't remember what happened just a few minutes prior, nor does he remember his close friends or family. This must be so bewildering for him, as we ask him if he remembers this event or person from the past; he tries, but just can't bring it to mind. Talk about living in the Now, which has its benefits, but can also be a real trial, with us having to explain life and the universe all over again to Dylan every few minutes. He has been remembering some song lyrics, like Scooby-Doo. This reminds me of the movie, The Music Never Stopped.

He told me it makes him feel like he's stupid to not remember things. I have to reassure him it's not his fault and that he's smarter than most kids his age, especially those with brain tumors. His test scores from last year that we just got in the mail attest to this. He did have some aphasia before with his seizures, but not amnesia nor the short term memory loss. Our hope is that it's the seizure and that this part of his brain is just rebooting, that it's not from tumor growth or permanently damaged from the severity of the seizure he had. And then there's the radiation.

He had a nightmare on Friday night, but all he could remember about it was that it was scary. A mixed blessing, this amnesia: some memories are not worth remembering. Dylan does know the basics: Mama, Dada, Chandler, hungry, bathroom. He can take care of himself and his basic needs: he can walk, although he often says that he can't just so I'll push him in his custom wheelchair, which he thinks is way cool. He can walk into the kitchen and feed himself. He knows which buttons to push on the elevator to go home, or to go outside.

Jana's brother and his family left yesterday after a whirlwind visit. After a dip in our apartment complex pool, where Dylan dominated his cousins with the SuperSoaker, they took Dylan, Chandler and Jana to the Santa Monica pier on Friday (I stayed home to receive Dylan's medication refills -- hospice has them delivered to the home.) Saturday we went to the Annenberg Beach House, where Dylan watched our visitors make a sand-castle Porsche. We stayed in and played games that night. They also helped clean up and stock the fridge. The three adult kids had never been to L.A. before, and it reminded me of this special City to see their wonder at what we daily take for granted: the weather, the awe of the ocean, the extravagance (10 Bentleys in one day!), and sheer size of the city.

Yesterday, Chandler spent the day at his school's "Alley Party" without us, so it could be, for him, all about him as Chandler, and not as Dylan's brother, which is so important to him. He needs to define his identity as part of his peer group, where he needs to be just another kid, but also to define himself as an individual. We adults can't really do much other than to provide a space for him to emote, if he wants to.

I know these things only because a woman, Dr. Margaret Stuber, spoke at our church about how to talk to kids and families about illness, dying, death, grieving and the afterlife. It seemed to be very helpful for those who attended. Her talks will be available soon on CD if you missed it. Just send me a message and I'll secure you a copy, for free. Our children and youth ministers also posted some helpful resources, located here:
More on Dr. Stuber:

The latest (September 28, 6 a.m.): Yesterday, Dylan started the day by going to school for a couple of hours; then he came home for a nap. We went to a park in Westwood after his radiation, but he didn't really seem all that into it. His memory is still severely impaired, which is a double-edged sword, a glass both half-empty, half-full (or all-full, as Chandler told me, because the supposedly empty half is actually full of air molecules, so a glass is never really half-empty). We enjoy his simple, almost spiritual, outlook on things; but also miss his sense of humor, his belligerence, his prowess, and his verve.

We had a visit from a woman at church who spends a lot of time providing compassionate presence with the ill and dying. She also taught both boys first grade Sunday School, and they love her dearly. She remembered how much Dylan loved their version of communion, which they call "the feast," consisting of a huge chunk of Hawaiian Bread and a cup of grape juice (apparently both are also bottomless in Dylan's theology, as if we were at Chuck E Cheese!). For years, the Feast was the only thing that got Dylan to go to church.

Chandler wrote a couple of tender songs in his room on his computer with an acoustic guitar, both of which he let us hear. I won't push him to post anything until he's ready, but it's great to hear his creative spirit expressing itself.

Some friends set up a "Signup Genius" website for us, so people can help us out with various needs. At the moment, we are actually in good shape for a few days, because Jana's extended family on her brother's side, including his three adult kids, are visiting for the weekend. I'll post again on Monday and add the link to the signup site for those of you who want to help out. Jana had an in-home massage yesterday, a gift from a friend, which was very cathartic for her.

The latest (September 27, 4 a.m.): Dylan gets a little better each day, but he still has severe amnesia/aphasia and is tired and hungry most of the time. Jana has been struggling to feed him healthily, lots of complex carbs and protein, while also feeding him his favorites and enjoying his response while he rediscovers her culinary treasures with each bite. We have also been taking him out for short walks in his wheelchair, to count puppies or smell flowers or just breathe fresh air.

We had a visit from the daytime hospice nurse, the remaining member of the team we hadn't met yet. She is going to inquire about reducing Dylan's steroids again, starting tomorrow, which is the halfway point of radiation. While we don't want seizures, we do want to reduce his voracious appetite and head swelling, if we can.

Both the boys' current and former pediatricians also paid us separate house calls, but just to sit with us as friends. Meals and gifts, both tangible and checks, continue to be delivered. Thank you, all.

The latest (September 26, 6 a.m.): Dylan did better yesterday, more active and responsive, remembering a few things and words. We had more visitors that brought food, both healthy and unhealthy (from sliced veggies ... to a dozen donuts!). Dylan loved them all, but the smile on his face when he tasted the donut was priceless. Jana's friends that visited made her feel a whole lot better, with laughs and tears. The boys have today off from school, and hopefully they both will be up for going out for an adventure or two.

The latest (September 25, 5 a.m.): Dylan had a low-energy day yesterday, hardly speaking at all and not able to remember things. I had hoped he was getting more active and bouncing back, and he is better at balancing and even played a game of table-top pool last night, but he is very withdrawn. He went to school for a little while yesterday, and I took him to UCLA for radiation (6 of 18), while Jana went back up to Dylan's school for a learning session about talking to your kids about serious illness and bereavement.

We took Dylan for a walk in his wheelchair in the afternoon, slowing for dogs, which he enjoyed, and then Jana took him to the dojo for some stretching while I got Chandler from school. We had a quiet night in our clean home, thanks to friends who sent their cleaning service over, others who brought groceries, and still others who had our laundry fluff and folded (all three friends were from our church). One of Dylan's more energetic friends came over for a visit; Dylan watched him play Nerf basketball and smiled. Dylan is still ravenous from the steroids he's on and, as always, he loves food, and murmurs and nods in approval at nearly everything we give him. He is back to watching TV shows in their entirety and can still work the Tivo remote! Hopefully Dylan will be better in all ways today.

The latest (September 24, 6 a.m.): Dylan did better on Friday: being able to walk on his own, and make some sentences that made some sense. He also finished his first week of radiation (two and a half left), and the revision of his medications has helped a lot. He spent most of the day sleeping, though.

A social worker from hospice came over Friday, and we discussed some issues, including the infamous "pink sheet," officially called the POLST, which stands for Physician Orders for Life-Sustaining Treatment: a legal document that gives instructions on resuscitation, intubation for breathing and tube feeding, when Dylan is in certain life-threatening emergency situations. We opted for the hard choice of "comfort only" -- no machines, let him go.

The social worker will come every week for a while. He spoke to all four of us, but we think Chandler is probably going to get what he needs more from his friends at school and church, so we only ask that he join us with his presence. He is welcome to speak, but not required to; we are here for him, but not demanding a thing. We just want to give him space to talk, to grieve, to be; which is what he needs most. The social worker remarked that he was impressed with our ability to communicate, to allow each other to feel, to weather this hard trek as well as can be expected. Dylan awoke near the end of the visit and, when the social worker left, Dylan told Jana: "He was awesome." We also had a visit from a woman at church who is a surrogate grandmother to the boys. She talked to Dylan about white lights, and finding stones along a path. He seemed to liven up when she said those things.

Dylan made a marked improvement on Saturday, dedicating himself to exercise because, he said, it would help him get strong faster. We took him down the street in a special child-sized wheelchair, just take a look around, but when we got to his karate dojo, he got up, went in and did some kicks and punches. He had forgotten that he's a blue belt with a green stripe, and that made him smile. He also stopped by one of his tutors who runs a small after school program next door to the dojo. Later he went for an exercise walk with me, about three blocks total, and then we went to the park, where he did the monkey bars on his own, watched a whiffleball game and then spent time with a friend's puppy who was out for a walk at the same time we were heading home. It was a little disconcerting that he did not remember Ben10 or even want to watch it up all during the week; but when we got home, Dylan watched the season premiere of the new Ben10 show called Ben10 Omniverse. He was absolutely glued to the screen and kept saying "Awesome!" [Side note: everything for Dylan right now is either "cool" or "yummy" or "nice" or "awesome" -- I was reading a kids' Bible to Dylan, because he didn't remember who Jesus was; he said, "I don't remember him. I only know that he's awesome!"]

The boys' therapist also came by on Saturday. She remarked to Dylan about how much love she could feel in the house. She wondered if Dylan had seen any angels lately, but he shook his head. One of Chandler's former teachers kindly took him to the Sound of Music Sing-A-Long at the Hollywood Bowl on Saturday night. Longtime readers of this blog know how much we try to make sure Chandler is living life fully, and these kind of performances are the experiences he thrives on.

Dylan's memory is impaired, both short-term and long-term. We aren't sure if it will get better or not. It seems to come in fits and starts. He went to church with us on Sunday morning, but did not remember it after a nap Sunday afternoon. He is much better at expressing himself, although his needs are basically eating, sleeping, bathroom and wanting to be entertained. He caught a reflection of himself in a mirror in our apartment building, and asked Jana if there's something that could be done about his puffy face (swollen from the steroids he's on). This bothers me, because I was always hoping Dylan would not have the swollen, bald head so many brain cancer kids get as their final look before they're gone: we've seen it countless times, perhaps you have also. It seems we may not escape this fate either, and must accept it, even embrace it since it means Dylan's pain-free and seizure-free. We may be able to taper off the steroids, but that must wait until halfway through radiation, which would be at the end of this week. The steroids are also making Dylan ravenous, so Jana has been working hard to feed him healthy food.

We started slowly to take visitors, especially ones that Dylan has asked for. He's seen a couple of his close friends, and his karate sensei came by on Saturday. His sensei gave Dylan a "Little Beast" hat: the name of the new kids' gym that he's opened, named after Dylan's spirit -- both in the dojo and in his fight for life. (Note the logo to the right under "Affiliations" -- Chandler's work as well!) People have volunteered to help with house cleaning and laundry. One friend brought his dog by when he picked up our laundry. Dylan really loved that.

There is a meeting at school today to address concerns parents have, because of our story spreading among Dylan's classmates: how to talk to kids about their own fears of getting ill, how to discuss having a friend who is seriously ill, and how to cope with bereavement. We are having a similar talk, a little more faith-based, at our church on Sunday. [Please contact me if you want to attend this one and need info.]

Jana's mom, sister and nephew are gone now, but her brother and his whole family are coming at the end of this week.

The latest (September 21, 6 a.m.): Dylan improved throughout the day yesterday, to the point that he was walking on his own. As the phenobarbital is wearing off and we've gotten his meds adjusted, we hope for a big improvement today. It was like dealing with a drunk short man who stumbles around, slurs his words, yells at people without making sense, repeating sentences that did make sense (as if he had finally gotten one right and so needed to hang on to it), and has to go to the bathroom a lot, with a lot of help.

At one point, he was listening to the TV remote as if it was the phone; and when a social worker came from hospice to make a posterboard of our family's handprints, he summarily denounced her for being mean, but when we were trying to ask what she did, he said words, but they had no meaning. One sentence that was clear and hard was when Dylan awoke from a nap and asked, "Am I dead yet?" This hurt to hear, although the way he said it is so Dylan. Chandler was with me, and we shared a look, but quickly reassured him he is very much alive. I hadn't realized how in touch Dylan is with the situation, even in his frazzled, drugged state.

We took him to radiation as that is still the best thing to help him. My former diet doctor walked down to our home to pay a visit. We also had our youth pastor and associate pastor come by (we are setting up a time to talk to parents and volunteers with kids at our church: about how to talk to their kids about Dylan and about dying; we will let everyone know when this will happen, as it will be open to people of all or no faith, but who want help talking to their kids about these issues). Yet more comfort food was delivered, a couple of checks for Dylan to spend however he wants, and also a CD for Dylan to listen to, from friends; and an impressive karate gi, embroidered with Super Dylan on it, sent came in the mail from my sister's boyfriend, who connects with Dylan on the bushido spirit level.

Jana's nephew, Dylan's cousin, came to town for just one night, having gotten a good deal on Priceline. Jana took him, her sister, her mom and Dylan to the beach to watch the sun set, while I took Chandler to his rehearsal. They snapped a beautiful photo (at right), a Californian madonna and child.

For those following me on my facebook, there is a post from a friend in Belgium wondering where everyone is praying from -- click this link, if you'd like to add to the international roster (regarding facebook: the link on the right of this site that Chandler added is not to my facebook, but to a facebook page that Chandler set up for Dylan himself).

The latest (September 20, 5 a.m.): Kudos to Chandler for redesigning the top area of this website. He is surpassing me in tech skills at age 12! We let him stay home from school yesterday as it was a long night before. Dylan's teacher contacted an illustrator online who created the three cartoon images in the above banner that Chandler created. The illustrator, after reading through this website, created them for Dylan's teacher gratis. The images are spreading like wildfire on Facebook as people are sharing it and asking their friends to pray for and support Dylan and our family. I have been impressed by the outpouring of love from all fronts, but especially my former co-workers at MySpace who have stayed in touch despite the fact that many of us no longer work together or see each other.

Dylan improved a bit yesterday, but was still incoherent, off-balance, and simply out of it. We took him in for his 3rd dose of radiation at UCLA, and talked to the doctors about the seizures. We also spoke with our nurse case manager at Children's and had a visit from the doctor at hospice. They adjusted Dylan's meds (suspecting that they tapered off the steroids too soon). So we've upped the dose of steroids and anti-seizure medication and hope Dylan comes back to normal, or as close as his brain will allow, asap.

A woman from hospice came by earlier in the day only for the purpose of giving Jana a massage. That was nice and we plan to have her come visit Jana again often! She really needs it. We're all sleep deprived and stressed.

Jana's mom and nephew arrive today, and her sister leaves Saturday. It has been invaluable to have helping hands around here. Our fridge is bursting with meals people brought by and I'm barely keeping up with the online comments and emails. But this is a nice problem to have. We haven't really been allowing visitors, though, because it would not register with Dylan for one, and our small apartment is already pretty full. This will change as he comes around.

Chandler landed a small role in the annual huge fall musical at the Morgan-Wixson Theatre's production of "Once Upon A Mattress." He is Sir Studley (of course), and is so excited to be back with his friends and the director he loves and respects. He also had our youth minister come take him out for ice cream. He and I had a serious and tearful heart-to-heart last night (Jana joined us partway through). I hope it helped. More info on the musical here.

The latest (September 19, 4 a.m.): After his second dose of radiation, Dylan started seizing again last night at around 6, even with the higher dose of Keppra. We called the hospice people and they said to give him the valium injection we have been holding for a couple of years since his one seizure after he had gamma knife radiation. 

The hospice nurse arrived as Dylan went into grand mal seizures that came in waves. We gave Dylan a second dose of valium (20 mg total). It still didn't do much. A care package arrived from hospice with all kinds of end-of-life drugs in it, but what the nurse wanted from it was phenobarbitol. She gave him a huge dose of that, and he calmed down after about a half hour.

Jana slept with him, so to speak, as she did not sleep much. We traded about 30 minutes ago so she could sleep and I could sit with Dylan. He has been murmuring, moaning and singing softly all night, likely a result of the drug, but possibly also the seizure. He can't really talk, though, or sit up or eat. Still a long way to go in this skirmish, but we're making headway.

We are supposed to keep giving him the phenobarbitol every night, I guess until the seizure cycle stops. The nurse said he's at his maximum dose for his size for Keppra, so we can't increase that. We are bringing back up his dose of steroids we were tapering, which the nurse suspected was the cause of the seizure, not the radiation.

Our pastor came over as soon as he heard and stayed with us for a few hours to pray. Chandler was at rehearsal for most of it, so thankfully did not experience the scariest moments. Even so, he was distraught when I picked him up at the theater. Jana's sister has been a big help, doing laundry, getting groceries, sitting with Jana in her pain, weeping together. Jana's mom and a cousin are planning to come near the end of the week also.

Thousands worldwide are praying, sending good thoughts, well wishes. Dylan loves to know this.

The latest (September 18, 6 a.m.): Dylan started radiation yesterday. He did well, although he did complain that his head felt hot last night, but this is not new. Dylan had a lot of fears and concerns, but went through it bravely. His last session is Oct 10, he will get a total of 3,600 cGy of photon radiation (200 cGy/session) and that's all the radiation he can have.

Dylan told me he prayed while he was in there (it only lasts about 10 minutes), and he thought about all the people praying for him. He said it helped him feel brave. I tell him all the time how many thousands of people are rooting for him.

Our former cooking coach came to visit and spent some time with us over the long weekend (both boys had yesterday off from school. My second cousins (sons of my dad's cousin) came to visit last night. We were going to go out, but Dylan wasn't up to it so we ordered some pizza and actually think it was better. Jana's sister came to town last night for the week. Dylan spent all day at the beach in Malibu with the folks from the Ronald McDonald camp. He had a lot of fun and ate a lot of food! He said he saw a baby octopus and rode on the boogie board. (Here is a video of the day, you can see him briefly, at 2:09 eating Doritos and at 4:12 cooling off with some shave ice!)

The director of Trinity Kids Hospice came to visit. She is close friends with our nurse case manager at Children's Hospital, so we already have a high regard for her and her work. When I tried to explain to Chandler what they do, he broke down and shut himself in his room, crying. It is very hard for all of us to face. Thankfully, the director is kind and gentle, and helped explain what they do to the boys far better than my lame attempt. The thing right now, she said, is to manage Dylan's care more from home than needing to go to the hospital. They are also providing other services. One, for example, involves creating a family "tree" of handprints that our whole larger family can contribute to, which we will do this week. They also have a great guy that might be able to give Chandler a manly shoulder to lean on that's not his dad's. A friend sent this TEDx video of a pediatric oncologist who has had similar conversations with his patients. Jana and I both watched it, more than once, and it helped a lot.

The latest (September 14, 7 a.m.): We met with the radiation oncologist at UCLA yesterday, and got Dylan set up for whole-brain radiation, including "SIM" - simulation of the procedure, first forming a mask over his face to hold his head still, describing to him what it's like, and then planning the sessions. It is actually a pretty easy procedure; and, as our nurse case manager said, "The best damn therapy against this stuff that there is!" Dylan said he thought the mask made him look like a zombie, but the comments on Facebook overwhelmingly said he looked like a superhero! He has had a mask before, see the History page for a photo of him wearing the old one, which would not fit him now, even if we had kept it (you get to keep them!). We'll keep this one: might come in handy for Halloween.

The radiation oncologist said Dylan would get 18 sessions, not 10, starting Monday at 4 pm (so we'd be finishing up around October 12, although they said to allow a few days in case the machines are down, or for other reasons). The actual radiation treatment only takes a few minutes, and we're glad to be doing this so close to home since it's every weekday. The only side effects will be hair loss, for certain, and possibly fatigue. The seizures may decrease in frequency and intensity, although that is not assured. Dylan's type of cancer seems to respond well to radiation, so we are hoping for some shrinkage of the lesions they see on the scans. Of course, he said, the alternative is to let the cancer grow, that it will certainly do that; and for us, that's no option; not now, not after all we've been through, not with Dylan still feeling well, still wanting to have fun.

Our nurse case manager called and told us she would set up a meeting with a local hospice. Jana wept as they spoke, while I kept Dylan distracted in the other room. We have been told to talk to them before, more than a year ago, and obviously didn't need to after all back then. But this time seems different. I am digging out the book she told us to read, along with my Elizabeth Kubler-Ross books. The book is called Shelter from the Storm:

Dylan's appetite has been huge, but this will decrease as we wean him off the steroids he has been taking. He has had a few moments of either headaches or backaches, pointing to the area where he had tumors before in his spine. This worries us. He did throw up once at school, but otherwise no nausea or vomiting. Otherwise, he has been very mellow, content often to just sit and think about things. He wants to do fun things, but tires easily. We did go down to the Santa Monica Pier during the week and have dinner while we watched the sun go down. He also went to school a couple of times, but couldn't stay as long as he had hoped before he was worn out. Yesterday he went back to his karate class for the first time in months. He did alright, and felt happy when the students (and teachers) all said "It's Dylan!" when he walked in, like he was a superhero. He went to school again this morning.

However, while in class earlier in the week, Dylan raised his hand and told the class he felt like a "2" which in their "tribe" means sad. He said it's hard having cancer. He also said the same thing to Jana at home, after karate class, that he's not very happy and how hard it is. We don't want to put him through radiation, but feel we have no choice. We told him about losing his hair, which bummed him out even further, but it would be even worse to keep it secret from him. He reconciled himself to it, and we even talked about me shaving my head!

We have received numerous gifts and meals from a wide variety of friends. Thank you all for your support. We couldn't do this without you.

Last night, we had our new cooking coach, Brant, come over and cook a great dessert. Our former cooking coach, Stacy, is coming to visit this weekend! The boys also have a beach party, and Chandler has yet another bat mitzvah and another birthday party to attend over the weekend. We have Jana's sister arriving next week to visit and her brother's family later in the month. My family is also planning a visit next month. Both boys have Monday off, so we're going to enjoy the long weekend and have dinner with my second cousin, who lives here in town.

Lastly, while we know people mean well, please don't send us the latest alternative medicines -- we have heard of them all, seen the documentaries, read the books. We live in California for crying out loud! :) We appreciate your caring. I hold up most alternatives to these two articles first:
Just considering the sheer number of alternative cancer therapies, and the fact that people running out of options are desperate, and will spend any amount of money for hope, is enough to send the already aggrieved cancer parent's mind spinning. Please help us by not adding to the burden. We always appreciate your prayers, thoughts and energy/mojo/juju. If nothing supernatural is going on, at the very least this simply makes Dylan feel better to know about your love and support when he hears about it, and that helps him heal.

The latest (September 10, 1 p.m.): We have a preliminary meeting with radiation oncology at UCLA scheduled for this Thursday at noon. They get Dylan fitted to wear a mask that holds his head in place. Radiation may start as soon as Monday. Dylan stayed at school for a few hours, which impressed us, but then he got a headache and threw up and came home and has been resting since. We are keeping an eye on him because this may mean we need to increase the steroids he's on, rather than taper off them.

The latest (September 10, 7 a.m.): We had a good weekend, although Dylan is still working his way back to "baseline." Yesterday morning, I asked if he remembered what had happened to him the week before. He wrinkled his brow and said, "I just remember I used to have more fun before." I explained to him, again, what he had gone through. This morning, he seemed to remember a little better. He wants to go to school and visit his friends.

Despite not having any memory of the ordeal, he still has a scared feeling, residual from the experience I'm sure, but also related to the strictness with which we're giving him his meds to keep him from having more seizures. We missed a dose just prior to his seizure, and so we want to be sure we're doing everything on our end. Meanwhile we are reassuring him that he is out of immediate danger. Since Jana did the over-nighters at the hospital, I have been getting up a 1 am to give Dylan his steroids. We start to wean him off them after tomorrow, so I'll get back to normal sleep patterns and my circadian rhythms will be my friends again.

We're supposed to be going to UCLA for a fitting and dry-run of the radiation therapy, but we haven't heard from them with an appointment time yet. We hope this means they'll be starting soon; the tumors can do nothing but grow in the meantime.

Over the weekend, we received so much support and love. Friends brought meals, our pastors called with prayers, people shared our story online and Jana's niece wrote this moving blog. We got gift baskets from friends, full of toys, games and other things to do while convalescing, one from my mom, and the other a huge box from a friend of a friend at Hasbro. We also got passes to Disneyland, maybe, just maybe might be meeting some Disney Channel stars, and may even be possibly going on a Disney cruise courtesy of some awesome people we know (did anyone notice a theme among those three?!). Most movingly, a family we know donated all their birthday money to Dylan to do something fun with his family.

Dylan went to a birthday party for a friend of Chandler's on Saturday and spent the whole time at the arcade. Last night, a friend took us to dinner at Pizzicotto, although Dylan had to leave early and sleep (he slept for nearly 12 hours!).

Yesterday morning, Dylan went to church with us for the whole time (3 hours). They had a special Welcome Back Sunday for the whole congregation, where they changed the schedule, implemented a new 5-year plan, and, most importantly, had a pancake breakfast for the congregation. That was enough to get Dylan to show up and he stayed and played and went to Sunday school where the other kids laid hands on him and prayed for healing. Through tears and in a quivering falsetto I told the audience of about 500 people about our week (so much for being a pillar of strength!). The sleep deprivation probably helped amp up the nerves. Our church family also lost another young person: a teenager took her own life earlier in the week, so it was a somber morning for all. We were reminded of the preciousness and fragility of life, the importance of our children, and the necessity of community.

Dylan just left to go to school, but just to say hello to his friends. Chandler just auditioned for the next Morgan-Wixson fall musical: "Once Upon A Mattress."

The latest (September 7, 6 a.m.): Dylan continued to improve yesterday after a relatively good night's sleep the night before. When I arrived, he was in good spirits, able to talk to me in complete sentences and his voice is stronger, but he has a lot of trouble remembering things, almost like Alzheimer's. He also can't concentrate for long on anything; he started some movies, but stopped them after 15 minutes or so. He did watch a couple of TV shows all the way through, but he didn't want to play games or read. He just wanted very badly to go home. His balance was way off in the morning, but progressively got better. Even so, they decided he would need a walker and/or a wheelchair at home, at least until he gets more stable.

Each time the various doctors would visit (neurology, oncology, nutrition, physical therapy, charge nurse, discharge nurse), they all noted Dylan's improvement and said he could go home. They upped his dose of Keppra and have him tapering off the steroid (decadron) that he was on to reduce the swelling in his head. We have to be very alert to any sudden headaches or nausea or another seizure: those could indicate internal bleeding, which would mean a rush to the closest ER, not a drive out to CHLA.

We are starting the palliative radiation (see blog below) as soon as they can schedule us in at UCLA. We have been there before for radiation, so we know the place and they have most of our paperwork in the system already. They also have a doctor we knew at CHLA a few years back who can help us feel welcome. We'll do that for two weeks (10 doses of 300 rads per weekday) and then get another MRI. Then we'll see if we should go back to the Erbitux with the GM-CSF boost (info also below).

We received a kind email from Dylan's teacher and his class is dedicating themselves to work extra hard, using Dylan's inspiration to motivate them. So honored. And Chandler's first full day of school was yesterday; he is so happy in all his classes and with all his teachers at Crossroads. I know he's going to thrive this year even more than he did last year. Another highlight of the day was the get well gaming gift basket his cousin, Lucy, sent, which was impressive since she is only one year old. Dylan opened the basket and hugged the stuffed animals and said, "Lucy is the nicest person ever!"

Dylan didn't nap all day, but went straight to sleep once he got home. It's like he was holding out until his head hit his own pillow in his own bed. He slept until about 4 when he came in having had a nightmare, and then he fell back to sleep between me and Jana. It was a priceless moment, just watching him breathing.

And, as always, thank you to the many who are following us. Many of you have expressed your support and we know many more of you do so silently, and we are grateful for all of it. Going over all the messages, comments, emails and voicemails, people from my and Jana's families, schools (Mead, HPHS, Granberry, Overton, Vandy, Samford and USC), the boys' schools (Kenter, Pali, Crossroads), our workplaces (Jana's personal training and jewelry selling businesses, my web dev business, Entertainment Weekly, Infoseek, Netflix, Myspace and Participant Media), our church's ministers and congregants (Judson, HPPC, Sanctuary, BPC), people we have met during treatments at CHLA, UCLA, Cedars and other places we've traveled for treatment (NY, Boston, Europe), and some friends we just met serendipitously or online only as friends of friends. It props us up through these tough times, and gives us strength to go on.

The latest (September 6, 5 a.m.): Dylan did a lot better yesterday. After a really rough night, he finally stopped seizing at 4 a.m. He slept most of the day, but came around in the early evening, talking quietly (and making sense), in short bursts. He wanted desperately to go home, but they kept him last night and may also tonight, depending on how he does today. Jana wanted to stay with Dylan again, so I let her. A friend of hers came to visit her last night, and brought a pizza.

Our oncologist, who was in town after all, came to the room and pulled Jana and me into a private conference room. He looked sad. He said the MRI showed that the tumors had grown all over his head and, although the Erbitux alone did not work, he thought we might try it with the GM-CSF injection which is supposed to help the Erbitux work better. We will try that for 4 weeks and run another MRI scan. We may start as soon as today.
But, he said, the bone marrow transplant is not viable, and if the GM-CSF does not work, we are out of options. He mentioned giving Dylan radiation to his head as a palliative move [one of the most ominous words for a cancer family: palliative], to give him a few more weeks before the tumor load is too great and lowers his quality of life. He also said some families choose to simply stop treatment and manage Dylan's pain until the end, and it is not a wrong choice to make either. 

I realized that for most of human history, the ability to have kept a child alive this long simply did not even exist. The years we've had with Dylan, to enjoy him and to share him with all of you, have been a beautiful gift for which we will always be most grateful.

The oncologist said he is amazed at Dylan's condition since he has more tumor than ever before and it's growing faster than ever before, and he said that was largely because of our parenting, being champions of our boys, fighting for every second of precious life. He said parents like us restore his faith in humanity. Jana and I don't want to believe this is the beginning of the end, but are resigned to the fact that the inevitable must come sometime, and that most of this is not in our hands, but in hands that know better than we do. For now, our mantra is as always: enjoy each other while we can.

The latest (September 5, 7 a.m.): Dylan woke up yesterday morning feeling alright after the long weekend. He said he was tired, and did not feel like going to school, which is not unusual for him, so we told him he needed to go. He went with Jana up to the bus stop. While they were waiting, he said, "You know, it would be good to go to school, because then I get to see my friends." And then he just sort of stared off into the middle distance, and stopped talking. He didn't respond to anything Jana said, and he started to shiver. The bus pulled up, but Jana realized something was wrong, and wisely brought him home.

Since he is on Keppra (anti-seizure), we guessed that he was having a seizure, but just not as big as the grand mal he had before and that the Keppra was keeping it muted. We decided to take him to the ER at Children's Hospital. It took a long time to get Dylan out to CHLA, which didn't help. Jana sat in back with him, shielding the sun from his face with a grocery bag, while I cursed the traffic. The ER crew took us in and got caught up. They gave him a massive amount of fluids, because his heart rate was abnormally high (around 140 bpm). That didn't change it, though. 

They ran a CT scan, and that showed no issue. Then they ran a chest X-ray, and at first told us he had pneumonia, but later said that the huge amount of fluids they gave him could have built up in his lungs as well. They put him on antibiotics just in case, and also on steroids to reduce the swelling in his head. They kept Dylan's scheduled MRI after some red tape that Jana had to untangle -- don't mess with the fierce mama bear! -- while I had gone to get her overnight supplies bag at home. After the MRI, we got into a room on the 4th floor, where we are such regular visitors that they all know us. In the room, Dylan suffered a couple more dramatic seizures: his heart rate rose to 185, he sat up and reached for me and Jana, with a scared look in his eyes I've never seen before, and then, slowly, after about ten minutes, he subsided, although I cannot say he went back to normal.

He only had a couple of brief moments where he was somewhat present during the day. Just as he was going in to the MRI, he whispered to me, "Protect us." At one point, he asked if his friend Sean could come and play. He said a few times he wanted to go home. But mostly he just sat and stared at the wall, breathing slowly and only making a movement when he needed to go to the bathroom. He was way off balance and had serious aphasia again, not even being able to remember Ben 10, his favorite TV show. We hope this all rights itself, as they have him on a higher dose of Keppra now, twice what he used to take. Last night they gave him Ativan to try to break the seizure cycle, but he still did not respond. They called in the people from the ICU to check him out, but they were not concerned because they gave him so much Ativan. He is still out of it this morning. We just miss him and want him back.

At the end of the night, around 9 p.m., the doctor on the floor came in and told us the preliminary MRI results. The one major tumor that is in there for sure has grown from about 4.5 mm to 6. This may be enough to have caused the seizures in itself, and it also means the Erbitux apparently did not work. We also are not in "minimal" disease state for the bone marrow transplant, so we don't know what else to do. Hopefully we will get a chance to talk to our oncologist soon, and more definitive MRI results on the other, smaller lesions that were in there last time. I came home and slept at home, but will take a shift tonight at the hospital.

Chandler's first day of school, orientation, was yesterday from 12-3. Thankfully, a friend of his from his old school that also goes to Crossroads lives nearby and could take Chandler in the morning until it was time to leave. He went home with another friend and, as the day wore on and got worse, and I was still at the hospital until late, he spent the night. We are so grateful for good friends (and their parents)!