MOST RECENT UPDATES ARE ON TOP
The latest (7/19: 7 a.m.): Chandler's play has been successful. Yesterday it sold out! There's only one weekend left: come out and see it Saturday or Sunday at 11 a.m. in Santa Monica (info and tickets here: http://www.yesplays.org/).
Dylan has his next MRI on Wednesday. I'll update the blog when we get results. Please keep us in your thoughts and prayers, send positive vibes, etc. Thank you.
The latest (7/12: 7 a.m.): Chandler's play opened on Saturday, the musical "The Stinky Cheese Man." Dylan came and saw it and loved it. The play is hilarious and will be fun for kids of all ages; come out and see it, it's showing the next two weekends, Saturdays and Sundays at 11 a.m. in Santa Monica (info and tickets here: http://www.yesplays.org/).
Yesterday, Dylan had therapy, swimming lessons and a soccer playdate while Chandler had his second show and then we stayed to see the other show at Morgan-Wixson, A Chorus Line (http://www.santamonicamusicals.com/CLHome.htm), and THEN went out to Pantages to see In The Heights (http://www.intheheightsthemusical.com/), both of which are must-sees.
Dylan has his next MRI next week, on Wednesday. Tension and anxiety will start their inevitable slow build, even though he has had good results for more than a year now, we were in that spot before the relapse, so it's hard to let yourself get too hopeful.
The latest (7/6: 7 a.m.): We had a great long weekend, hanging with friends for the 4th and then watching the fireworks at a nearby country club. Yesterday we went to the La Brea Tar Pits (my first time). Dylan had a swimming lesson, while Chandler had a marathon 4-hour rehearsal for the musical "The Stinky Cheese Man," which opens on Saturday. The play is hilarious and will be fun for kids of all ages; come out and see it, it's showing the next three weekends, Saturdays and Sundays at 11 a.m. in Santa Monica (info and tickets here: http://www.yesplays.org/).
The latest (6/30: 7 a.m.): Jana and I went to Gjelina (http://www.gjelina.com) for our anniversary dinner. The food there is excellent, and I had gotten some tips from people at work about what to order (we had Marinated Artichokes with Burrata, the Gruyere Pizza, roasted cauliflower, Rocket Salad, Mushroom Toast, and Butterscotch Pot de Creme for dessert). We decided to sit outside on the patio as the weather had cleared up.
Jana struck up a conversation with the people at the table on my right, telling them it was our anniversary, that we had gotten a new mattress that was delivered earlier in the day, and how our kids had been jumping on the old one in the living room and treating it like a wrestling ring. The couple also had kids but much older and said they were also in the market for a mattress. We got around to talking about Dylan and the woman mentioned a camp for kids with life threatening illnesses that we plan to check out (called Dream Street).
After they left, Jana struck up a conversation with the couple on the other side of us (younger than us and on a date), telling them it was our anniversary and that we had gotten a new mattress. We gave them pointers on what to order and discussed other restaurants in the area since we don't get to Venice often. Because their table and chairs were strangely low to the ground, they asked their waiter if they could move to the table on the other side of us. The manager came out and apologized and told them "someone else" already had reserved that table. We paid our tab and were getting ready to leave when all heads turned. The guy on the date said to Jana, "Now THAT'S a nice anniversary present!" indicating the couple who sat down at the open table next to us: Ben Affleck and Jennifer Garner.
This was not my first close encounter with this famous couple -- I was photographed with them in line at Blockbuster 6 years ago, pic here:
More pics and full story about Blockbuster here:
So Jana struck up a conversation with them, saying, "You know, I just have to say, he (pointing at me) was photographed with y'all in line at Blockbuster. It was in all the magazines." They smiled. "When was this?" Ben asked. I mentioned they were getting the movie Van Helsing and Ben remembered that was in 2004. "That was the one on San Vicente, right?" he asked me. I nodded. "It's gone now, right?" "Yeah, it's a bank now," I said. Jennifer said, "That was right about when we first started dating," and then Ben look at us and said "It's our anniversary." Jana said it was ours too and high-fived Ben, and we all laughed. The couple next to us at the low table were amazed. Ben asked how long we've been married and, when we said 19 years, they both said "Wow!" Ben said they had been married five years. "Congratulations," I said, and shook his hand. Jana told them we had gotten a new mattress (can you tell how excited she was about it?). Since I wanted to leave them alone on their anniversary, I stood up and indicated to Jana that we should go (she didn't want to but I started walking out). We went and picked up the kids and Jana told me this was the best anniversary ever. Also, she slept better than she has in years on the new mattress. :)
The latest (6/28: 7 a.m.): Dylan started a new program at his Occupational Therapy place, called PACE: Processing and Cognitive Enhancement. More info here:
His first "homework" assignment was to watch The Karate Kid and answer questions about it. They wanted to make the point, using a story, that he has to do things in therapy that sometimes don't make sense ("wax on, wax off"). We are hoping it is a great success for him. He has already impressed his therapist with his intelligent answers and determination.
I took Chandler to an audition for the touring show of The Lion King on Saturday. He didn't make it and was greatly disappointed, but worked it out during the car ride home. He'd rather go to school and be with his friends this year. Broadway can wait!
We all also saw Toy Story 3, a nostalgia trip for Mom and Dad, and a fun story for the kids who have seen the first two, but only a couple of years ago, not a decade.
Speaking of decades, it's Jana and my anniversary tomorrow -- our 19th! We're going out on a rare dinner date to one of the most romantic restaurants in town. We have given each other the gift of a new mattress as our current one is kaput. The new one should arrive by the end of the week!
The latest (6/21: 7 a.m.): Dylan had a blood test during the week last week and the results were good again. We are so glad every time that happens. He has an MRI in a month from now....
The boys missed their last day of school Friday, as we all traveled to Bloomington, Indiana for my side of the family's first-ever reunion. More than 60 people were in attendance from the farthest corners of the country, including Hawaii and Alaska! The boys played with 2nd and 3rd cousins their age, as well as my parents and their aunt Annie, so they did not even miss the end of school festivities. Click below to view some photos from the weekend (thanks Andy for uploading so fast!):
We stayed at a golf resort and, because of the heat, spent most of the time at the pool or indoors playing Uno, singing karaoke, playing pool, and just hanging out. Dylan played whiffle ball with the kids one night while Chandler and some other kids caught fireflies and rolled down the grassy hillside. It was neat to see the younger kids looking up to Chandler with such awe and taking Dylan in despite his scars and hair loss. It was my parents 50th anniversary recently, my mom's birthday Monday, dad's birthday Friday and, of course, Father's Day yesterday, so the mood was celebratory the whole time. I added these songs to my myspace profile in honor of Father's day:
We adults spent time catching up on each other's lives, looking over the extensive genealogy and poring over old photographs from decades ago, as well as learning a bit about Euchre, a card game played with avid enthusiasm here in the midwest. More about it here:
I did my annual stint at the kids' school for Career Day, talking about websites, social networks and internet safety. I always send this link to the kids' parents via their teachers:
Now that school is out and summer has begun, I changed my profile playlist to my summer songs:
The latest (6/14): It was a jam-packed weekend for the David family as we went to see the new Karate Kid in the theater on Saturday night after watching the original on Netflix.com the night before.
Saturday afternoon, after Chandler's musical rehearsal I took him to Pantages to see A Chorus Line, which I saw on Broadway at his age. He was OK with the adult themes and thought the show was good, but he is getting more into shows that involve more stagecraft and humor. He is preparing for auditions for the touring show of The Lion King. Not sure if they'll take a white kid for the role, but it will be a good experience for him anyway.
Chandler's next musical is based on the postmodern fairy tale book The Stinky Cheese Man. The shows are in July. You can go ahead and buy tickets already here (click on the "11:00am" time under the title on the date you wish to go. Then you get a seating chart to pick your seats):
Sunday also featured both boys singing in our church choir, a "Song For Peace," written by the choir director; and then all afternoon at their school's Family Festival which features booths, rides and lots of food. The boys' favorite part is the Cake Walk, wherein you stand on a number within a circle, they play music as you walk around the circle, then, when the music stops, you hope they call your number to win a cake. There were dozens of cakes, many themed (Batman, Perry the Platypus, In and Out burger-shaped) and both boys tried to win, but their numbers never got called. Dylan finally broke down in tears, and so the woman running the cake walk kindly let him take the cake she and her son made, the one he wanted most, Batman in his Batmobile. He ate two of the wheels (made of Ding-Dongs) before we even made it home!
The latest (6/7: 7 a.m.): Dylan got a new pair of glasses to help with the "strabismus" he has suffered from since he had a stroke during brain surgery three years ago. They are sleek and slightly tinted to lessen wear on his eyes. One eye is weaker than the other and, if he keeps favoring it, he may lose use of it altogether. You can see pictures of him here:
Dylan got a belated birthday present of a pair of nunchuks from a friend who is in his karate class. He has been carrying them around everywhere! He pretends to hurt bad guys with them, then grabs them and throws them into the street, then hangs them over his neck when he's done. Any time he passes by a man on the street with them, he gets an appreciative nod. :)
Jana took the boys to two birthday parties last night while I worked on the website for Chandler's next play, a musical based on the postmodern fairy tale book The Stinky Cheese Man. The shows are in July. You can go ahead and buy tickets already here:
We had a movie-filled weekend, watching the new Alice in Wonderland on Friday and Tooth Fairy on Saturday. Then I took the boys to see Shrek Forever After in 3D last night (Jana can't do the 3D, it gives her headaches, so she got some "me time.")
I woke up this morning to see that I have lost 30 pounds since starting to focus on my weight. I gained a LOT of weight over the past three years of Dylan's struggle with cancer and, now that he seems in the clear, feel I owe it to my family to get myself back under control. I haven't started doing much cardio yet, just eating (and drinking) a lot less, five small meals per day three hours apart (~100-300 calories each meal). Lots of ice water to raise the metabolism. Waiting to do cardio until I'm lighter and my joints can handle it. It also doesn't hurt that my dad made a weight loss bet with me back at New Year's.
The latest (6/1: 7 a.m.): Dylan had a great birthday on Wednesday. After school, he went with a few friends to California Pizza Kitchen for a feast and then to a local park to play off the calories. He got a TON of cool presents and spent the long weekend trying each of them out.
Thursday night, Dylan and Chandler were in their orchestra concert at school. Chandler has been learning the violin and Dylan the recorder.
Over the long weekend, Chandler finished up his play "Many Moons," other than a couple of school shows (they bus in students to the theater) this week. He had full houses Saturday and Sunday -- thanks for those of you who attended! He also auditioned last week for the next upcoming play, based on the book "The Stinky Cheese Man," and landed the title role! It's a musical, running in July, so watch here for updates.
We went to the beach a couple of times and Dylan had a sleepover over the long weekend. We wrapped it up yesterday with a large get together at a local park, including barbeque, beanbag toss and a long game of kickball (I'm still sore!), and last night we baked Dylan a belated birthday cake. Yum!
The latest (5/24: 7 a.m.): Dylan's turning 8 on Wednesday! There were times in the past three years when we weren't sure if he would make it this long, but he is healthy and strong, and we hope he stays that way for many decades to come!
The head of Dylan's karate studio has asked him to design a T-shirt to benefit a couple of charities they support, including one of our favorites CoachArt (http://www.coachart.org). A graphic designer will scan it and work with Dylan to make it ultra slick once he's drawn it. Once we have that design from Dylan, I'll post it online.
Dylan had an optometrists's apointment during the week. He will need glasses to correct his eyes, but hopefully will not need any more surgeries.
He also had a blood test Wednesday, the results were good. According to our oncologist: Platelets higher, but still low at 57,000/mm3. Hemoglobin good at 11.1 Gm/dL. White cell count normal at 4,240/mm3 and absolute neutrophil count (ANC) at 2,800/mm3. Liver and kidney function tests normal.
Chandler had another successful weekend in his play, Many Moons. Some of his classmates came to see him and support the show/theater. We went to lunch after the Saturday show and had a lot of fun. There are two more shows left, this Saturday and Sunday at 11 a.m. Tickets are only $8 for adults and $6 for kids. More info and online ticketing at http://www.moonsplay.com/
I'm also impressed with how Chandler has taken to loving reading (like father...). He read the first book of the Percy Jackson series in just a few days!
The latest (5/17: 7 a.m.): I was out of town for most of last week in Chicago (thanks to my local friends there for their hospitality!). I came back to learn that Dylan won a push-up contest in karate class by doing 42 push ups! He proudly showed me the bulldog patch that he won.
Chandler's current play "Many Moons" started Saturday at the Morgan-Wixson Theater in Santa Monica. It shows for two more weekends, Saturday and Sunday at 11 a.m. We saw it yesterday and it is very funny, based on the Caldecott-winning, light-hearted fairy tale by James Thurber. Chandler is really shining more and more brightly with each production. He is so comfortable on stage and this one makes me especially proud, because he's not relying on the strength of his singing voice, but instead working his acting chops and memorizing a LOT of lines. I highly recommend you see this show as it is very meaningful and well-acted by the kids. A very professional production and you still have time for many other things once it's over. Click here for more info and to buy tickets: http://www.moonsplay.com/
Jana is dealing with making many appointments for Dylan: one for his eyes, which have straightened out almost perfectly, but he needs therapy for his weaker eye. Another couple of appointments are for Occupational Therapy and Physical Therapy and a therapy called PACE, a 12-week individualized therapy approach that combines the principles of cognitive psychology, education, and auditory and vision processing into a program designed to benefit children with learning difficulties.
But the big meeting is for another IEP (Individual Education Program) in June, where we want the LAUSD to cover the costs of all these therapies, and to do it outside of school hours. Currently they pull Dylan out of class for short periods of time for these therapies and so he is only getting a fraction of the therapy he needs, and also misses class on top of that, so his homework sometimes is very difficult when he misses an important lesson. We plan to brind some advocates to the next one to help us argue our case as we feel we got steamrolled just representing ourselves last time.
The latest (5/10: 7 a.m.): We got blood test results back from the week last week and everything looks good. I have to take a moment to praise Jana who has to pull Dylan out of school, drive him an hour there and another back, wait countless hours for people to attend to them, all for routine blood work. It can really be dehumanizing.
Add to that, she is dealing with insurance on a constant basis, usually simple little foibles that they hope we'll overlook, but that will cost us hundreds, even thousands, at the end of the year.
She is also working on trying to get Dylan's IEP at school revised, another beaurocratic nightmare. I try to help however I can, which is usually by getting out of the way, and providing the occasional shoulder to cry on. :)
Jana had a fun Mother's Day, starting with a sleepover the night before with a friend of Chandler's who is just the nicest boy and a joy to have over! They played Wii games and at the park on Sunday, then she took Chandler to see a local showing of Joseph and the Amazing Technicolor Dreamcoat.
Dylan wrote Jana this poem for Mother's Day:
My mother is smart as an octopus.
She is as loving as God.
She is as fun as a ball.
My mother is special because she gives me everything.
One nice thing about her is she has a heart like a bull.
The latest (5/3: 7 a.m.): Chandler competed in his first swim meet yesterday and, although he was very nervous, he overcame his anxiety, dove off the platform and swam to second place in his group! (50m freestyle) I think his acting helped him with facing his fears, since he's gotten up on stage so many times. Here are a couple of pictures from the meet:
Dylan's favorite thing is playdates and he had two over the weekend with the same friend, Friday and Saturday (and wanted another one Sunday!). Then to make his own fun, he dressed up as Scooby Doo and we walked down the street to the drug store and grocery store (picture at link above), and got a LOT of smiles from passersby.
Jana had a bookclub at our place last night and I took the boys to Barnes and Noble. Chandler picked out the remainder of the Wrinkle in Time series and Dylan picked a book on sharks and, interestingly, a book of M.C. Escher prints. Each time he turns the page, he says, "Oooooh, cool!" Click for info on Escher: http://en.wikipedia.org/wiki/M._C._Escher
The latest (4/21: 7 a.m.): I posted the website for Chandler's next play, coming up from mid- to late-May. Please check it out, you can already buy tickets: http://www.moonsplay.com/
We had a thoroughly entertaining weekend, starting with seeing How To Train Your Dragon Friday night with a friend of Dylan's and a friend of Chandler's, then Saturday night, while Jana went to a friend's house for a vegetarian cooking demonstration, I took the boys to see a play version of Peter Pan playing at the Morgan-Wixson Theatre to benefit a local school. Since the boys had both been in the play at school earlier this year, they were fascinated to see another way of doing it. Yesterday brought the always-fun Brentwood Art Show to town, plus some gorgeous weather, and so we spent the day looking at art and watching the kids jump on the bouncy contraptions. The boys both bought Native American satchels and Chandler got a garnet to put in his (his birthstone) and Dylan got an arrowhead.
We are still in a celebratory mood from Wednesday's clean MRI scan, although we've noticed a rise in Dylan's tantrums and irritability. This is probably from the chemo pills he is taking (his hair has also thinned), although there may be another cause, or more than one. When we asked about stopping or lowering the dose of these pills, our oncologist was firmly against it and wants to keep him on them through November, which will cover the same span of time between his first diagnosis and his relapse. He did allow us to reduce one drug which will hopefully help things improve....
The latest (4/19: 7 a.m.): Dylan has an MRI Wednesday. He has been irritable lately, which was one of the symptoms the first time, but perhaps he's just picking up on our anxiety about the scan. Please join us in prayer, positive thoughts, energy, whatever you've got, we'll take it!
He also may be nervous because he has a presentation to give in class about the sea today. He worked with Jana to build a fun diorama and to put together note cards on the creatures and plant life that he chose to highlight.
We had a fun weekend, the highlight was visiting relatives of Jana's down in Palos Verdes. Dylan continues to improve in karate and Chandler in swimming. Chandler is also in a play called "Many Moons," based on a fairy tale that James Thurber wrote for children many moons ago. I've volunteered to build the website for the show, which I hope to launch this week. Performances are during the second half of May, so you'll hear more about that in less than a moon.
The latest (4/15: 6 a.m.): It's Jana's birthday today! If you're friends with her, wish her a happy birthday on her page! (P.S. Lordy, Lordy, Jana is ... well, it would be rude to say, heh heh).
For her birthday,, I took yesterday and today off from work, and I bought us all tickets to Stomp, which is playing down in Anaheim. We drove down after school and first played a round of putt-putt. Unfortunately, the golfing and lack of a nap was too much for little Dylan, who slept through most of the show, but Chandler really loved it. By the time we got back home it was 11 p.m.
I had originally planned for us to stay down there and then go to Disneyland, but the birthday girl said she didn't want to deal with the lines on her special day. Instead, we're going to dinner with some friends tonight and she and I are picking out new dining room chairs and art for our walls today.
The latest (4/12: 7 a.m.): We had two fun parties to attend over the weekend, one was for the first bat mitzvah we attended on Saturday, and the other was a cast party for Chandler's play that wrapped on Sunday. I think Jana had the most fun of any of us at both, dancing at the first and singing karaoke at the second, though Chandler represented at both functions as well. Dylan and I were both pretty tired; we lasted for the first couple of hours but then gave up the party ghost.
Jana's 40th birthday is coming up on Thursday, and I took two days off from work, to take the family down to Anaheim to see Stomp, and also to do taxes (should be getting a refund this year after all the medical expenses we incurred in '09).
The latest (4/8: 7 a.m.): Dylan had more blood tests done yesterday and the results were good again! Next hospital visit is April 21 for his next MRI.
Courtesy of a friend who used to work for the producers of American Idol, we all went to see the show live last night. Actually, the first part of the experience was watching Rihanna perform before the show (at 5 pm), because she had so much gear on the stage. Our seats were about half way back, right at stage level, on the left side.
On our way in, we got to meet Lacey, who was voted off a few weeks ago. Also in the crowd was Quentin Aaron, the actor from The Blind Side who played the football player that Sandra Bullock took into her home.
The actual show started taping at 6 pm, live to the East Coast. They narrowed the field down to the bottom three, and up-and-coming hip-hopper Jason Derulo (who sang at the MySpace Sales Conference last year) performed "In My Head," giving Rihanna a run for her money as an entertainer. We were particularly excited that it was Beatles week as we all love that music so much. The medley that the top-9 sang was a treat to see live and in person.
During commercial breaks a guy kept the crowd entertained with jokes and instructions. He called the two boys in front of us up on stage to dance for the crowd (Chandler was jealous!). Highlights of the show were the Beatles medley sung by the top 9, David Archuleta singing a powerful version of "Imagine" and the judges saving "Big Mike" for another week, a great way to end the experience. (Mike is Dylan's favorite, and you should have heard him cheering and screaming when the judges saved him!)
We loved seeing all the behind-the-scenes aspects of the show and it was weird being there live inside the theater, which is way smaller than it looks on television. It was like we were sitting inside the TV set! We did not (really) get on TV. There is one moment when Ryan Seacrest is sittng with the judges announcing David Archuleta and we are four little pixels over his right hand shoulder. And unfortunately no cameras are allowed, so no photos from the night.... But we know that Chandler will be ON the show in six years when he's old enough, so tune back in then. :)
The latest (4/5: 7 a.m.): We had a fun long weekend, but Easter was unusual because Chandler was in a play Sunday morning and Jana played trumpet at our church in all three services, so we were split up as a family. Chandler has two more performances of A Wrinkle in Time and then starts rehearsals on his next play, Many Moons. Dylan enjoyed his visit from the Easter bunny, who brought both candy and a laser gun he had been wanting for a while.
The latest (3/29: 7 a.m.): We went to Chandler's play yesterday and it was fun. Dylan wants to go again. It's a kids' version of A Wrinkle in Time and it's amazing how the kids have learned 90 minutes of lines. More info here:
Dylan earned his orange belt in karate on Saturday. He woke up yesterday karate chopping things in his room saying "Look out, I'm an orange belt. Oh, yeah! Oh, yeah!"
Both boys have spring break this week and I have Friday off. Because of Chandler's play, we can't go out of town, but if I can shake the cold I have by then, maybe we can go for a hike or to the beach ... or both!
The latest (3/25: 7 a.m.): Both boys came home Tuesday with excellent report cards. We are always worried about Dylan's cognition, but right now his main area of struggle is reading and I think that will come along at its own pace.
Dylan also started wearing hearing aids. He is virulently against wearing them (I think he associates it with being old and infirm), but there simply are certain sounds (mostly sibilants) that he does not hear.
Dylan also had a blood draw and the doctor was astounded at the results. He again asked Jana how long Dylan had been off his meds, and when she told him he had stopped Tuesday night (they are on again off again scheduled every two weeks), he couldn't believe it. He also mentioned that the drug cocktail Dylan is on now will be standard for post-transplant cancer kids in 5 years. Really cutting edge stuff. Lastly, he said that a second relapse usually occurs within a shorter time span than the first. Dylan's first relapse occurred a year after ending chemo, and now it has been about ten months of no new cancer growth, so he is very hopeful for Dylan's outlook, as are we all.
His next MRI is late April, so we're just going to not worry about it and enjoy each other until then and see what it tells us.
The latest (3/22: 8 a.m.): The boys got to watch their first marathon in person yesterday since it went right through our neighborhood with its new route. Poor Chandler was really sick with a cough, so he spent most of the day inside.
Chandler has another play he's in at the Morgan-Wixson, this one based on Madeline L'Engle's book A Wrinkle in Time. It starts this weekend and runs Saturdays and Sundays for three weeks. More info and tickets here:
http://www.wrinkleplay.com/ These plays are extremely professional and entertaining. I encourage you to check it out (but this one is too scary for kids under 7 or so).
The latest (3/15: 5 a.m.): I've had a really entertaining weekend. It started with Chandler singing the Beatles' "Let It Be" in the school talent show.
Chandler wowed the crowd once again. Watch it here (and leave a comment!):
Then I attended a function at which the speaker was Gar Ryness, the now-famous YouTube sensation who can mimic every batter in baseball since 1980. Here he is on Letterman:
Saturday afternoon, I took Chandler to see Cats at the Pantages. He loved it! I'm trying to find the original T.S. Eliot poems that the musical is based on. This is the one that inspired "Memory"- http://www.bartleby.com/198/4.html
Dylan came up to me the next morning and asked, "Who was born first, Adam or Eve?" I told him the story says Adam was made first by God. He threw his fists up in the air and screamed, "Yay! That means boys are the best because we were the first to be alive!" A budding theologian, he is.
I leave for San Francisco this morning through Thursday p.m. I haven't been away this long for a while; I'll really miss my family; and I've been to SF so many times, I am running out of cool gifts to bring back for the boys. They have little trolleys, models of the Golden Gate Bridge, Alcatraz teddy bears, coloring books, magnets, bells, snowglobes, etc. The only thing left in the airport/hotel gift shops are shot glasses! ;-)
The latest (3/8: 9 a.m.): Another relatively normal weekend. Thank God!
I won my family's annual Oscar pool, three years running, now. I may be excused from the competition next year since my family suspects I have an "in" with Price Waterhouse. ;)
On the cancer front: I wanted to draw your attention to this woman, Sara-Summer, who I have never met, is SHAVING HER HAIR OFF this week, because of reading about Dylan's story (click the link below to read her summary).
This is to help raise funds to fight cancer through St. Baldric's. She has already raised a couple of thousand dollars. PLEASE DONATE some funds to her cause, in Dylan's name. http://www.stbaldricks.org/participants/sarasummer
The latest (3/4: 6 a.m.): Dylan had his blood test yesterday. His numbers were so good, the doctor asked Jana if she had stopped giving Dylan his medications (she has not). His liver and kidney functions are perfect; his platelets are a tiny bit low, but nothing to worry about. He is still needing to drink more water, so we are working on that.
The latest (3/1: 7 a.m.): Dylan goes in for another blood draw this week; we're hoping his numbers are holding steady. He has an MRI scheduled for the end of April (4/21). Chandler went in to the dentist last week to get fitted for braces. Many of his friends at school have them, so he's OK with it. :)
The latest (2/22: 7 a.m.): Life is pretty much normal for us now, which is great. Both boys are just being boys and we're cherishing every moment that we can. Unless something comes up we have another blood test next week and have scheduled our next MRI for early April. But every little pain he feels in his legs, or headache he gets makes us fearful and anxious.
The latest (2/18: 8 a.m.): Dylan had a blood test yesterday out at CHLA and his platelets were a little low, but not cause for concern yet. They want him to come back in two weeks to get tested again. He was also dehydrated -- it's hard to get him to drink enough water since he's at school most of the week.
The latest (2/16: 7 a.m.): We had a great long weekend, going to Chandler's last two play performances of The Amazing Bone (because Dylan wanted to see it again and again!) and going for a hike and to the beach. I posted some fun pictures over the weekend to my February photo album:
The latest (2/8: 7 a.m.): Things have seemed alright with Dylan. His legs have still been hurting, and we're wondering if it's just sore muscles from not exercising. He continues to take his medication for another few months, maybe for the rest of the year. His hair has thinned, but that seems to be the only side effect.
The latest (2/1: 6 a.m.): Chandler was awesome in his play, a kids' musical adaptation of William Steig's book The Amazing Bone. You can see a couple of photos of him in my January photo album here:
http://viewmorepics.myspace.com/index.cfm?fuseaction=user.viewPicture&friendID=114817476&albumId=2704658 The whole cast of kids is extremely talented (many have been in other big plays, TV shows and films), the music is so well-written and the costumes were fantastic.
The latest (1/27: 7 a.m.): Chandler is gearing up for opening night of his play, a kids' musical adaptation of William Steig's book The Amazing Bone. It shows every Saturday and Sunday from 11 am to 1 pm from Saturday through Valentine's Day at the historic Morgan-Wixson Theater in Santa Monica.
Tickets are inexpensive. If you can, please come see it and support our budding star! Website is:
The latest (1/26: 7 a.m.): Dylan is fine today. Not sure what happened, but he's OK. We always have that nagging thought in the back of our heads that it may be more than just a regular bug that kids get. Thanks to everyone who posted or emailed your well wishes for him.
The latest (1/25: 7 a.m.): Dylan threw up shortly after he went to bed last night (almost made it to the bathroom). But he went back to sleep and slept through the night, so I think he's alright. His meds may have been too much. He's supposed to sit up for half an hour after taking them, but was lying down watching Scooby Doo. Or maybe he caught a bug. Or maybe it was the fluffernutter he had for dinner. He woke up feeling alright this morning, so I'm hoping it was just a passing thing.
The latest (1/19: noon): Just got this from the doctor:
The brain is absolutely clean. The spine is reported as showing STABLE subtle residual leptomeningeal changes –unclear if post-op scar, scar tissue or, of course, possible residual tumor –BUT NO CHANGE. STABLE IS GOOD!!!!
The blood counts are pretty good too;
01/18/2010 01/05/2010 12/16/2009
White blood count = 4,300 3,290 4,540 Absolute Neutrophil Count = 2,970 2,220 3,090 Hemoglobin = 10.6 10.2 12.2 Platelets = 68,000 83,000 52,000
Liver and kidney functions are entirely normal.
The latest (1/18: 3 p.m.): We just got home from the hospital where we received the GREAT news that Dylan's MRI was "crystal clear" according to his oncologist. These are just preliminary results and we'll get final results tomorrow, but we are celebrating!
It takes two hours to run the MRI tests, and this was Dylan's first try without anesthesia. They have these goggles now that he can wear and watch a movie to help him hold still. He picked Finding Nemo, about a father's love for his boy. The attending nurse said he did great, and they said the things he said and way he acted, he seemed like a "little man" in their midst! On the down side, it took nine (!) hours to get to the hospital and back: we left at 6 for a 6:30 appointment, Dylan did not actually go in until 8, he got out at 10 but the neurosurgeon who needed to fix his shunt in his head was in surgery until 2, so we had to just sit there and wait an extra four hours. Ugh! The good news outweighs the dehumanizing waiting, but it would have been so nice to just leave and go get a celebratory donut somewhere.
The boys are now cleaning their room to earn more TV time and a cupcake down the street with a friend of the family. They're at each other like caged animals, typical brothers, and as much as I hate to hear the screaming, it's music to my ears today!
The latest (1/15: 7 a.m.): Dylan has a big MRI on Monday. Please keep him and all of us close to heart.
Since I have the day off from work, we'll be going out to the hospital as a family, early Monday morning. Check back here Monday afternoon for results.
The latest (1/13: 7 a.m.): I'm excited, because I am taking the boys out for fun tonight after work. Jana will make sure their homework is done, because she is hosting a book club/dinner at our place. I'm not sure yet what I'm going to take them to go do (it's raining today in L.A. and will be dark by then, so it'll have to be indoors). Tune back in tomorrow to find out what we did. :)
The latest (1/12: 7 a.m.): The boys were happy after the first day of school. After a three week break, I think they started to really miss their friends and the routine.
They're also back to swimming for Chandler and karate for Dylan, and Chandler is doing the school talent show (singing the Beatles).
Chandler is working very hard on his current play, the first that he had to audition for, that has multiple performances in a real theater, and that people will pay to see the performance. It's called The Amazing Bone, an adaptation of William Steig's book. More here:
The latest (1/11: 7 a.m.): Chandler had a great 10th birthday featuring lots of games, movies and a small slumber party.
The boys start school today; though they're still both asleep as I write this and usually have been up for at least half an hour. I think it will be tough to shake vacation. Though Dylan said over the weekend, "I just can't wait to go back to school!"
Dylan has an MRI in a week, his first since we were in New York in September.
The latest (1/8: 8 a.m.): Tomorrow is Chandler's 10th birthday. Leave him a happy birthday comment on MySpace or Facebook. We're planning to open presents after a pancake breakfast. Then we're going to Avatar in IMAX 3D, ice skating in the afternoon (Jana will refrain!), and a small slumber party at night featuring a chocolate fountain, playing with our new Wii games, YooStar, and PG-13 movies. He's so excited to be in double digits!
As the Christmas carol says, "and Mom and Dad can hardly wait for school to start again," school starts on Monday. The boys had three weeks off this year. It has been fun, but I think we're all four of us ready to get back into a regular routine.
The latest (1/7: 7 a.m.): Dylan and Chandler have been going to a tutor in the mornings. The girl in Dylan's class started to cry after her mom left (this bugs Dylan to no end). The teacher asked Dylan if he ever feels like crying. He nodded. She asked him what he does when he feels that way. "I punch someone in the face," he said. The girl laughed. "Are you giving Olivia permission to punch you in the face, Dylan?" the teacher asked. Dylan smiled slyly and said, "She couldn't catch me."
Last night I came to find Dylan and Chandler making gingerbread houses, but with graham crackers and TONS of candy in the house, with their CoachArt coach. They were on cloud 9! More on CoachArt here:
The latest (1/6: 7 a.m.): Jana took Dylan out to Children's Hospital yesterday to have some pain in his leg checked out. It turned out to be nothing, just sore muscles, it seems, but we were a little nervous that the cancer had spread to his bones. We're relieved and grateful for another day "in remission."
Earlier in the morning, she got her cast off yesterday and even the doctor was amazed at how well it had heeled. He has her in an "air cast" for a week or two as a transitional aid, but she is walking around without the crutches or the "monster walk," as we came to call it. Some pictures of her getting the cast off are here:
Also, on Dylan's site, I've updated the November/December pics with lyrics page:
Since Jana and Dylan were at the hospital all day, I took the day off and took Chandler to his current play practice where they had a parents' meeting. I was amazed at how involved the parents are in this production (from 8 different schools), where they will have 8 performances later in the month into early February. The play is based on William Steig's book The Amazing Bone. More info here on the website one of the parents built:
The latest (1/5: 7 a.m.): We got home late last night. We were all so glad to sleep in our own beds and wake up without shivering! The boys will go to a local tutor this week (they actually enjoy it quite a lot) to make sure going back to school after three weeks off is a smooth re-entry process. Jana gets her cast off in T-minus 2 hours!
I have pictures of the boys from December here:
and a few of them in the snow here:
and here on Dylan's site, I've updated the December pics with lyrics page:
The latest (1/4: 9 a.m. Central Time): We return to balmy California tonight. It's snowed twice here in Nashville, so we've spent time playing games indoors and watching lots of Scooby Doo. We had the extended family over last night for baked potatoes and storytelling.
Dylan has been taking the medication he's on fairly well. It's dried out his skin, which has given him minor nose bleeds and chapped lips. Hoping the warmer weather in L.A. will help alleviate that, along with lots of water and lip balm.
Jana gets her cast off first thing tomorrow, back in L.A. We could not find a doctor who would take on the liability, so she had to keep it on all through vacation. The only good thing is it will help us breeze through security. A medical company is paying us to take pictures of Jana in her cast doing everyday activities; we should get $600-$800 for our (her) troubles.
The latest (1/1/2010: 8 a.m. Central Time): Happy New Year!
The latest (12/31: 8 a.m. Central Time): Here's to hoping 2010 is a much better year for Dylan and my family than 2009 was. We're coming up on the anniversary of when we were informed of his relapse. We'll get his blood tested again tomorrow at a clinic here in Birmingham, hoping his platelets haven't dropped any further. Then we'll drive back up to Nashville for a few days before returning to L.A. Monday.
The latest (12/30: 8 a.m. Central Time): I took Chandler to see A Christmas Carol yesterday and we talked about changes to our version afterward. We're committed to putting it on again next year, and maybe it will become a tradition. Chandler noted how dark the movie was, but how Jim Carrey brought a lot of laughs to the characters he played (more than half a dozen of them!).
We went to a friend of Jana's home last night, who lives here in Birmingham, and played a lot of Rock Band. That seems to be the game of the year for us! I am a little hoarse today, though....
One more day here with my parents and then we drive back up to Nashville tomorrow for the rest of our vacation, then back to L.A. on Monday.
The latest (12/28: 4 p.m. Central Time): I was so in vacation mode that I forgot it was Monday and didn't update today! Anyway, we got Dylan's blood drawn over the weekend to make sure his platelets are good and, although they're a little low, he will not need an infusion. We're checking again on Friday.
We were hoping Jana would get her cast off today, but no doctors in Birmingham want the liability and also think that insurance won't cover it (although it can't be that expensive to just remove a cast). We are hoping a relative of Jana's may do it when we're back up in Nashville, on Saturday. Otherwise, it will have to wait until we're back in L.A. Nothing serious, but still a pain for her to keep it on.
The boys have been playing with their toys and enjoying their grandparents and their aunt Annie. Because it was so cold here, we went and saw The Princess and The Frog today.
The latest (12/25: 10 a.m. Central Time): We drove down to Birmingham yesterday and baked cookies for Santa, read 'Twas The Night Before Christmas, and filled stockings while the boys tried to fall asleep. The boys cleaned up today for Christmas, getting lots of Wii games, ZuZu pets/playpen, and iPod touches for each. We'll have some photos next week.
The latest (12/24: 7 a.m. Central Time): We went to the Y again and the boys did a kids' circuit workout in the Youth Activities Center -- twice! They were proud of themselves. We had a feast with Jana's extended family here in Nashville (14 people!) and then opened presents and did our White Elephant/Dirty Santa gifts. Best gifts were Wii games, a digital voice recorder (for Chandler to work on his lines), and a check from Jana's uncle's family who decided to pass on gift-giving this year and donate to our family (see link at left for a tax deductible donation link).
The latest (12/23: 7 a.m. Central Time): We were going to eat breakfast yesterday at a fun restaurant called the Pfunky Griddle, where you cook your own pancakes in a griddle built into the table, but Jana's sister had a new griddle at her house, so we went there for breakfast instead.
While Dylan napped, Jana, her mom and Chandler laid some flowers on Jana's Dad's grave. He passed away a year ago, tomorrow.
The boys watched The Nightmare Before Christmas for the first time last night. Dylan is old enough to see the scary images without being too scared by them.
Tonight we celebrate Christmas here in Nashville -- just the kids in the extended family get gifts (it looks like it will be a Wii year). The adults do a White Elephant/Dirty Santa gift exchange with each other instead.
The latest (12/22: 9 a.m. Central Time): We had fun yesterday at the Y watching the boys go down their waterslide, then they jumped on the neighbor's trampoline, and at night we went to Jana's sister's house and watched DVDs of the boys' performance in the updated version of A Christmas Carol that Chandler and I wrote, and also Chandler's performance of Grease (and then we watched Bolt on their new home theater system, featuring Roku). Tomorrow we celebrate Christmas with the Nashville family, then drive down the next day to Birmingham.
The latest (12/21: 8 a.m. Central Time): We made it to Nashville last night, although it was the worst turbulence I have ever experienced in my many years of flying. The boys didn't notice since they were watching DVDs the whole way. Jana sat up front in the bulkhead row since she's still on crutches. Jana's brother and sister-in-law picked us up. We spent some quality time with Jana's family and experienced what cold feels like for the first time in a long time. We have a few days here, then drive down to Birmingham on Christmas Eve to see my family.
Dylan's skin is really starting to dry out, especially his lips, from the Accutane that is part of his anti-cancer cocktail his oncologist has him on now. We're doing all we can to keep him moisturized....
The latest (12/18: 6 a.m.): Dylan's platelets are a little low from the anti-cancer cocktail the doctor has him on, but not low enough to warrant an infusion (and thus asking for donors). This may change while we are on vacation, in which case we will need to rely on the social networks in the cities we're visiting for help. Watch this page for updates. We're also not sure where to go for blood draws while out of town that will still be covered. We'll have to figure that out.
We leave this weekend for Nashville, where Jana is from and where the rest of her immediate family lives, and then we'll drive down on Christmas Eve to Birmingham where my parents live (though I was not brought up there, I'm a Connecticut Yankee).
Chandler has his grade's musical performance today. No big solo for him on this one, just part of the group. And we'll be done with performances until next year, when he has another musical he's in in January ("The Amazing Bone"), the school talent show in February (a Beatles song), and the School Spring Production (TBA), which Dylan will probably act in also, after his star turn as the Crocodile in Peter Pan this year.
The latest (12/16: 7 a.m.): Dylan has a checkup today, including blood tests. More info tomorrow, possibly later today.
The latest (12/14: 7 a.m.): We had another big performance weekend, with both boys in church choir, singing "Go Tell it on the Mountain" and a lullaby song that the choir director wrote herself. Then during both services Chandler came back to sing a duet of "The Little Drummer Boy." Then last night, Chandler played Danny Zuko in a performance of Grease put on by the Adderley School for the Performing Arts. Check my videos page for "Drummer Boy" and "Sandy."
Click here: http://vids.myspace.com/index.cfm?fuseaction=vids.myVideos
Number one on Chandler's wish list for Christmas is to get a good agent. Maybe these videos will help toward that end....
Dylan is starting to get dry skin from the Accutane portion of the anti-cancer cocktail his oncologist has prescribed for the current treatment. It doesn't help that it's (relatively) cold here in L.A. Hoping for moisture in those little pores of his.
Jana is already stir crazy with the cast on her foot and having to deal with crutches all the time from her broken ankle. And we have 5 more weeks to go! :(
The latest (12/11: 7 a.m.): I had to pick Chandler up at his rehearsal for his duet of "The Little Drummer Boy" this Sunday. He and the guy he's singing with sound great and they both play bongos. They're using the version by Josh Groban, which you can hear on Chandler's playlist here:
Then we came home to eat some delicious veggie pizza Dylan cooked with his CoachArt coach. He is really turning into a little chef! They're making a gingerbread house next, which is Dylan's favorite edible thing to make. More on CoachArt here:
http://www.coachart.org/ So far so good for Dylan's "maintenance" regimen. His next scan is not for a while, but we're hoping it still shows him to be in remission. Most likely that will be when the six weeks of this medication treatment is over. More about this phase here (scroll down to the "Currently - Maintenance" section):
The latest (12/10: 7 a.m.): Though the boys had two plays last weekend, the performances are not over. Both boys have their orchestra performances next week and sing in choir in two church services this weekend, Chandler has a performance of Grease this weekend, as well as a duet in church of "The Little Drummer Boy" and he has started rehearsals for the role he landed in The Amazing Bone.
The latest (12/9: 5 a.m.): Dylan's still taking the meds well so far. No evident side effects. He gets his blood tested next week.
He has a family heritage presentation that he's presenting to his class today, with a family tree that goes back to his great-grandparents. His most interesting tidbit is that a second cousin once removed plays guitar in Mitchel Musso's band (Musso is a star on Disney Channel's Hannah Montana). I printed out this visual aid to help his classmates understand what a second cousin and "removed" means (I wasn't sure myself!):
I'm in San Francisco today, just for a day trip. Jana seems to be doing alright, although she had to take some pain medication last night to sleep.
The latest (12/8: 7 a.m.): Jana's surgery went well and her foot doesn't seem to be hurting much at all. I put a photo of the Xray with the pins and plate in my December photo album:
Dylan also seems to be tolerating the medication well so far. So things are looking up on the medical front for the David clan!
The latest (12/7: 6 a.m.): The boys were absolutely fantastic in their plays over the weekend. On Friday and Saturday they were in the school production of Peter Pan. After they gave a dress rehearsal on Thursday, lots of other students came up to both boys at drop-off to tell them how much they enjoyed the show. My sister and brother-in-law were in town to see it, which both boys loved. Most of you know how much our older boy, Chandler, loves performing, but I think little Dylan has been bitten by the performing bug -- he is already working on being the White Rabbit in next year's school production of Alice in Wonderland. There are a few pictures in my December photo album:
On Sunday both boys were in another play, this one an updated version of Dickens' A Christmas Carol that I wrote with Chandler's help. It got lots of laughs from the audience and great reviews afterward from those who attended. Many people want us to do an encore performance so they can see it again, and bring friends.
For those of you who are out of town, the script is here on Chandler's website:
http://chandler.ericdavid.info/christmas-carol (A few other attendees even thought I should develop it into a screenplay!)
We should have Dylan's medications all straightened out today after last week's fiasco. We got the one that they denied (Zolinza/SAHA) and started on it last night, but still need prescriptions faxed for the Accutane, as well as clear instructions on how to administer them. We are hoping for minimal side effects. Dylan seems to be doing alright so far.
We are concerned with reports from school that Dylan has been falling a lot. A year ago the same thing happened, just before his relapse. We hope it is only because Dylan likes to push his limits and not because of anything worse.
We just said goodbye to Jana, who is undergoing surgery on her ankle this morning to have pins put in, which means even longer to heal and more time on crutches and painkillers. I often sing her praises in this blog, but with her totally incapacitated, I am once again realizing how much she does for our family, and how much more than other moms whose kids are healthy.
The latest (12/3: 4 p.m.): I just heard from Caremark, and they relented! The prescription will be covered, although they have to ship it to us from Redlands tomorrow, so we may not start on it until Monday.
Their rep told me that they had reviewed the claim with the new information provided, and also spoken on the phone with our oncologist. We have to fax the prescription in to Redlands and have it shipped (we had hoped to pick it up at the hospital instead to get started on it that much sooner), but all in all great news.
Also, the rep apologized for the wording of the letter that I quoted, and said that the offending employee had received disciplinary action.
I am glad we did not have to go to the media, although I suppose publishing on social networks IS a media publication of sorts. Just to know that thousands of you had read my blog and the scores of comments and emails that I got was proof that we are all publishers, in a way (was just reading about this on cnn tech). "The brick walls are there for a reason. The brick walls are not there to keep us out; the brick walls are there to give us a chance to show how badly we want something. The brick walls are there to stop the people who don't want it badly enough. They are there to stop the other people!" ~ Randy Pausch, The Last Lecture The latest (12/3: 6 a.m.): We are supposed to get an answer from Caremark today. I'll update if and when we do.
Yesterday was a day of highs and lows. A boy at Dylan's school made fun of him, saying he doesn't have a brain since they took it out. This made him angry and then sad. The teacher wrote the parents but you can't unring that bell. He will have to live with this stuff forever, perhaps the rest of his life, because of just "lousy luck."
"Lousy luck" was the title chosen for an article in which Dylan was profiled this week by YourCause. You can read the article here:
http://www.yourcause.com/News/-Lousy-Luck--Leading-Cancer-Death-For-Children/1282 The best news from yesterday is that Chandler was offered a role in a musical version of William Steig's story The Amazing Bone! Only 12 kids got in out of 60. This is his first audition that he's gotten a part from. We are all so very proud of him. The musical theater is called Y.E.S. More here:
http://www.morgan-wixson.org/for-kids.cfm Today the boys have a dress rehearsal for their school play of Peter Pan (Chandler is playing Peter and Dylan is the Crocodile) with the whole school in the audience. Performances for the parents are Friday and Saturday nights and one of my sisters and her husband are coming in for it. The boys are so excited!
Tonight they boys also have a rehearsal for the play Chandler and I wrote updating Dickens' A Christmas Carol for modern day with a female Scrooge (Chandler is "Xmas History" and Dylan is "Timmy"). The performance is this Sunday at 2 p.m.: free admission, at our church (no sermons or offering taken, just fun times): Brentwood Presbyterian at 12000 San Vicente Blvd, 90049.
The latest (12/1: 6 a.m.): Our appeal to Caremark (prescription coverage) for the Zolinza (also called SAHA) was denied yesterday. We are entering a rare "second appeal" process now. If denied again, we may be forced to pay the $6,000 for the 6 weeks of pills, although the letter they sent our doctor states that we can bring a civil action against them, which probably has repercussions on future insurance coverage. This is the last thing we need after all we've been through.
To make matters worse, the letter says there is no standard therapy for children who have Dylan's type of cancer and who have failed the treatments (chemo and radiation) he has received. I quote, "These children will ultimately relapse and die. Zolinza is not medically necessary." Ironically, the slogan at the top of the letterhead says "Caremark: It all starts with care." It seems all they care about is saving money and writing crass letters.
My doctor wrote them back, though, to let them know that as of right now Dylan has not failed the final therapy he received (radiation), that the cancer appears to be in remission, and that the Zolinza is part of a cocktail of meds he needs to ensure any cancer that might be in there is killed off. He is ready to go to the media with this as he has never heard of such a denial. Please stay tuned, because if the second appeal is denied, we may need a phone or mail campaign from you friends out there. Our doctor has said that public outrage, especially when it's regarding a sick child, often turns the tables.
We had hoped to start Dylan on this therapy before Thanksgiving. Every week this goes on without treatment is a chance for any cancer cells that are in there to take hold and grow again.
The latest (11/30: 6 a.m.): We had a fun short week of work and school last week. Thanksgiving started out alright as we house sat for friends in their very nice house with home theaters and swimming pool/hot tub, but Jana broke her ankle Thanksgiving night while ice skating at the temporary rink in Santa Monica, and we spent the rest of the weekend taking care of her. Some pics here:
We saw Fantastic Mr. Fox Saturday morning and a live play of A Christmas Carol in Glendale on Saturday. Then we rehearsed our own Christmas Carol that Chandler and I wrote on Sunday -- the performance is next Sunday at 2 pm at 12000 San Vicente Blvd in Los Angeles (free admission, all are welcome). Chandler is playing "Xmas History" and Dylan is playing "Timmy."
Today we hope for good news from our benefits department about them covering the SAHA medicine for Dylan. If that is a go, we will pick it up today. If not, our doctor has threatened to call the media and maybe even Michael Moore! Stay tuned. I'll be updating more frequently this week. More info on the SAHA saga below.
The latest (11/23: 7 a.m.): We had a fun weekend, attending the Grinch musical at Pantages and then Cirque de Soleil. We realized we had seen so many fun shows in New York that we wanted to continue to do so back at home, as long as the price is right.
While it was hard being out of town last week, the conference I attended was informative and even inspirational, since it concluded with a keynote speech by Colin Powell. While I was gone, the kids had a normal week, although Dylan had to go in to the hospital to get prepared to start his next "maintenance therapy" of pills. However, we have found out that our insurance will not cover the SAHA medication which will cost us $6,000 for the six weeks of treatment. We are appealing that decision and awaiting a reply from the insurance company.
The other two pills he'll take on this treatment are Temozolomide and Accutane (normally used for acne). The purpose of this phase is to get any cancer cells that may be in Dylan's cerebral-spinal fluid to "mature" and stop replicating. Dylan has learned how to take pills, so this phase (6 weeks or so) should be fairly easy. Side effects are dry skin and some lowering of blood counts, but apparently not enough to put out calls for blood or platelet donations. Dylan goes in for an EKG today in preparation for the treatment.
Since the last four scans showed no change since he finished radiation in June, we're hoping that means there aren't any cancer cells in there and that the blips on the scans are either scar tissue from the biopsy nearly a year ago, or just dead tumor that got blasted by the radiation and that will just sit there. We are house sitting for some friends who have a really nice place with a couple of home theaters, huge kitchen and a pool with a hot tub. We'll be here all week, including Thanksgiving.
The latest (11/17): I heard that we had 29 people donate blood on Sunday for the UCLA Mattel Children's Hospital. This is huge as each adult that donates can help a few kids. Thanks to everyone who came out to donate!
Tomorrow (Wednesday), Dylan goes in for another pentamidine treatment and an eye appointment (he may need another eye surgery to treat the strabismus he suffered during brain surgery two and a half years ago). He will also meet with our oncologist who will start him on his "maintenance" therapy of pills Temozolomide, SAHA, and Accutane. Dylan has learned how to take pills, so this phase (6 weeks or so) should be fairly easy. Side effects are dry skin and some lowering of blood counts, but apparently not enough to put out calls for blood or platelet donations. We'll post in a big way if that changes.
The latest (11/13, 7:00 a.m.): Dylan had his first Coach Art lesson last night. He chose cooking lessons (Chandler is getting singing lessons). He made pumpkin muffins and wore his camouflage apron! Coach Art is a great service for kids with life threatening illnesses and their siblings to learn an art or sport. More about them here:
http://www.coachart.org/ Please consider donating to them (tax deductible) on their site (the "support us" section); they are a great charity to support.
The latest (11/12, 7:00 a.m.): The boys and Jana had a blast at Six Flags yesterday. The water slides were by far the favorite rides! They were drenched and shivering when they got home, soaked through to the bone. Here are a couple of pics of them in the Tweetie Bird bird cage ride:
Dylan gets his first Coach Art lesson tonight. He chose cooking lessons (Chandler is getting singing lessons). Coach Art is a great service for kids with life threatening illnesses and their siblings to learn an art or sport. More about them here:
Please consider donating to them (tax deductible) on their site (the "support us" section); they are a great charity to support.
L.A. RESIDENTS: there is a blood drive for UCLA Mattel Children's Hospital in West L.A. on Sunday from 10 am - 3 pm at 645 N. KENTER AVE, 90049 and they need more signups. Thankfully, Dylan does not need blood or platelets, but scores of sick kids do, and especially around the holidays when regular donors are out of pocket. Please call 310-825-0888 X 2 or email firstname.lastname@example.org to schedule an appointment. And please help spread the word in L.A. Thanks!
The latest (11/11, 7:00 a.m.): The boys have today off and are going to Six Flags with some friends. Since Dylan was named their park ambassador for the Cure Kids Cancer "Walk in the Park" event a year ago, we have been guests of the park, but haven't had the chance to take much advantage of it.
The latest (11/10, 7:00 a.m.): Chandler woke up this morning and pulled out a loose tooth! The boys have tomorrow off and are going to Six Flags with some friends. Since Dylan was named their park ambassador for the Cure Kids Cancer "Walk in the Park" event a year ago, we have been guests of the park, but haven't had the chance to take much advantage of it.
We were elated to learn that the new route for the L.A. Marathon (in March) was released yesterday, from the stadium downtown down to the ocean this time, and goes right in front of our apartment. Jana is planning to run in it and we'll be able to cheer her on right from our balcony. :)
The latest (11/9, 6:00 a.m.): Jana took the boys early Sunday morning to get the H1N1 flu virus shot since they are at-risk not only age-wise, but because of Dylan's compromised immunity from chemo and radiation. They got in right after all the pregnant women. There were lots of news crews there covering the scene. The boys said it didn't hurt much.
Yesterday, Dylan also had a thorough Occupational Therapy evaluation (for two hours!) to try to get the LAUSD to pay for more OT off campus. He only gets a little bit each week, and this will help the balance problems I wrote about last week.
I updated Dylan's latest pictures page, where I use song lyrics as captions. You can view it here on his site.
The latest (11/5, 6:00 a.m.): We heard a sad story about Dylan from his physical therapist that helps him out at school. He was having trouble balancing (something she works with him on, and that is an effect of the stroke he had during surgery two years ago) and he looked very upset. She told him it's ok to trip and fall, that everyone does it, and that she even fell that very morning and lost her shoe. Dylan laughed at that and looked at her and told her that during P.E. the kids were playing kickball and that he ran to kick the ball, tripped and fell. All the kids laughed at him and he started to cry. Now we all have had those awful playground moments and we all know that kids can be cruel and I don't even think they meant to hurt Dylan's feelings. Obviously we do all we can to help his self-image, but sometimes his body just doesn't cooperate like it used to. You see, before this all happened, he was stronger than kids twice his age and could do anything physically. That's where he got the nickname "Superdylan." He's getting a lot of his faculties and coordination back, but it's not clear if he'll ever be like he was. It's just not fair this has happened to him. We always try to look on the bright side, but cancer sucks, plain and simple.
The latest (11/4, 6:00 a.m.): I posted some pictures from October we just got from the We Can family camp we went to a couple of weeks ago, on page 2 and 3 of this photo album:
The latest (11/3, 6:00 a.m.): Jana had a setback in feeling better after her tonsillectomy, but hopefully she should see progression through the rest of the week. Neither of us knew how long the healing can take.
The boys started a new swim class last night that was fun, but Dylan may need some motivation (candy?) to keep at it. So now they have this swim class, the school play, school orchestra, the church choir, go to therapy, do Coach Art (Chandler has a singing coach and Dylan is learning how to cook), and Chandler is in Grease and is writing a short play with me. I guess you could say we're back to normal. ;)
The latest (11/2, 6:00 a.m.): Jana had her tonsils out on Friday and spent the weekend recovering (and still is, but is doing great, according to the doctor). Lots of cold liquids and soft foods the first couple of days, but she's getting back to normal foods today and is weaning off the codeine that kept her in a purple haze.
I took the boys trick or treating on Halloween night, first to a friend's house and around her neighborhood, where Dylan literally dragged me from house to house and ended up walking more miles than he has in months. Candy is definitely his main motivation. Then we went to the big haunted house in Santa Monica (on 16th south of San Vicente), where we know the owners and were able to go inside. They had a contortionist and chocolate fountain, both of which mesmerized the boys.
Chandler slept over at his friend's house and came home super tired. I hung out with Dylan during the morning, playing Disney bingo and drawing superheroes and monsters on the white board. In the afternoon we went to the park and the pool. We packed up our Halloween box at night and got ready to re-enter normalcy today for school.
Please note that there is a blood drive a week from Sunday (11/15) to benefit the UCLA Mattel Children's Hospital. Dylan thankfully does not need blood (or platelets), but many children do, especially at this time of year when people are traveling and not donating, so please consider showing up if you're in West L.A. More info here:
It's nice to be somewhat back to normal (at least no hospital stuff for Dylan this week, just for Jana). I have even started some writing again in my free time (beyond this blog, of course).
The latest (10/30, 7:00 a.m.): Today is Jana's tonsillectomy. I stocked the fridge with lemon sorbet, fruit popsicles, jello and cold water. Today is also the kids' Halloween parade at school and a Halloween Extravaganza at my workplace, and kids are invited. We may not make it to the latter, depending on how Jana is feeling. I'm not doing to great myself as I have picked up a cough. Luckily, Dylan is in good health and his immunity seems to be doing fine. We should get blood results back today from the blood draw they did yesterday. The boys are very excited about Halloween. Chandler is going as John Lennon dressed as Sgt. Pepper and Dylan is going as Ben 10. I have a Captain Kirk outfit. Jana will be lying in bed recovering, the Mummy, haha. Happy Halloween everyone!
The latest (10/29, 6:00 a.m.): Dylan and Jana just left for the long trek to Children's Hospital to get a blood test for him. We are certain the results are fine and it's kind of a pain we have to do this, but it's necessary. Tomorrow is Jana's tonsillectomy and the kids' Halloween parade at school.
The latest (10/28, 6:00 a.m.): The boys are getting excited about Halloween! Chandler is going as John Lennon dressed as Sgt. Pepper (we had to hem an adult sized costume -- thanks to grandma!), and Dylan is going as his favorite cartoon character Ben 10 (we found the costume at the huge Toys R Us in New York). They have a costume parade at school on Friday and my workplace has a Halloween party that kids are invited to, with a haunted house and everything!
Jana had her tonsils checked out and they're removing them on Friday, so I'll be flying solo with the boys and relying, as we so often have, on friends to help out. Hopefully she'll be back in the pink for Saturday's festivities where we have been invited to more Halloween parties than we could possibly attend! A nice problem to have....
The latest (10/27, 6:00 a.m.): Chandler told me an interesting story yesterday about the family camp we went to over the weekend. He was playing a question and answer game with some of the older kids and one of the questions was "What is your favorite website?" The oldest boy who was kind of the leader of the pack all weekend joked at first that it's jokes.com, but then said, really, that it is myspace.com. Chandler was so proud to tell him that his dad works for myspace! :)
I'm waiting for pics from the family camp and still waiting for pics and video from Dylapalooza. Hope to get all that up soon. We did get pics from a pumpkin carving party on Sunday night we went to. Those are posted at the bottom of this page:
The latest (10/26, 7:00 a.m.): We went to the Ronald McDonald camp up in beautiful Idyllwild to join the We Can group (a nonprofit that supports kids with brain tumors and their families) for their annual family camp. Some fond memories are shooting bows and arrows with Dylan and watching the boys sing songs with their groups that they wrote themselves. We should have a few photos to share soon.
More on We Can here:
(click Programs to see a pic of Dylan drawing a star)
We had to come back from camp early, though, because the boys had a performance for their children's choir at church, a fun jazzy tune about shoes with visual aids. Watch the video here:
The latest (10/23, 6:00 a.m.): We are excited to be going to the Ronald McDonald camp up in beautiful Idyllwild to join the We Can group (a nonprofit that supports kids with brain tumors and their families) for their annual family camp. We'll have some fun photos on Monday.
The latest (10/22, 6:00 a.m.): I put together a series of short clips of video from Dylapalooza and posted it here:
http://www.facebook.com/video/video.php?v=181275856753 More videos and photos are coming soon....
The latest (10/20, 7:00 a.m.): We had an absolute blast at the benefit concert Dylapalooza last night. For those that couldn't attend and have asked how they can still contribute to the cause, please click here for a tax-deductible method:
Huge thanks to all of you who gave yesterday. Agents for a cause will leave this link up until the end of the year.
The evening started at Two Boots pizza, next to the Echoplex, which was one of our favorite pizza places in New York from our trip there in the summer. The Lonely Forest set up the indie sound for the night; then Leah Andreone, whose idea the whole thing was, added a sweet tone. It was fun to see kids running around a grown-up's joint, really driving home the point of the evening. After Dylan sleepily thanked everyone and then went home to bed, I stayed to cheer on Sonos, an ensemble of acapella/beatboxing jazziness and the layered samples of Emily Wells both acts which brought eclectic genius to the evening. Matt Costa was (appropriately) Bob Dylan reincarnate for a few quick, quirky songs, and then Tonic ("If You Could Only See") cranked up the amps and kicked out the jams for a big finish 'round midnight. You can hear selections of their songs on the Dylapalooza myspace and then link out from their to the artist's myspace pages that you like:
I'll be posting photos and video soon. It was great to see so many friends there from all parts of my life (kind of like I do on these social networks) and was grateful for everyone that decided to come out. There were a lot of other things going on last night and to those of you that chose our cause, we thank you. More specifically, the people I'd really like to thank for putting the evening together and promoting it are:
Leah Andreone David Androne J. Scavo Bob Carsten Risa Matsuki Jason Reynolds Terry Moren Bob Tonkin Jules for photos and video (coming soon!) All the production people and the artists. Mitchell, Liz, Damara and Charra from the Echoplex. Marko Shafer @ Hotel Cafe Jeff Castelez & Matt Solodsky @ Dangerbird Records Jamie Schumacher and MySpace PR Steve Mummolo and Brian Kuperman at MySpace Creative Services Chris George and MySpace Marketing All my friends who forwarded, reposted, retweeted and shouted from the rooftops about this event.
The latest (10/19, 7:00 a.m.): MySpace is putting on a benefit concert TONIGHT for our family, called Dylapalooza, at the Echoplex to help us with the medical costs that have accumulated for the past couple of years.
Buy tickets and get more details here: http://www.myspace.com/dylapalooza
For those that can't attend and have asked how they can still contribute to the cause, please click here for a tax-deductible method:
The latest (10/16, 7:00 a.m.): The MySpace sales conference was informative and inspirational. Even so, I am glad to be home and together with my family again. Speaking of my fam, my video won the competition about why myspace is MY space. I chose to tell our story with Dylan's battle with cancer and how the company and website have helped. Here it is if you haven't seen it yet (less than 3 mins long):
I won lunch with our CEO....
MySpace is putting on a benefit concert on Monday for our family, called Dylapalooza, at the Echoplex to help us with the medical costs that have accumulated for the past couple of years. We just added platinum-selling rockers Tonic ("If You Could Only See") to the list of artists! Buy tickets and get more details here:
For those that can't attend and have asked how they can still contribute to the cause, I'm working on a donations link that will go live on Monday.
Jana let the boys make cookies with her mom to celebrate the good MRI results. Jana's mom goes home today. It was great to have her here!
The latest (10/15, 6:00 a.m.): Jana met with our oncologist yesterday. He said the MRI scans look great and the only thing he sees in there is likely just scar tissue. Nothing has grown, and Dylan has now been off treatment for nearly three months. Dylan also got another pentamidine treatment and a flu shot. In two weeks we start three low-dose oral drugs to protect him from anything growing. No side effects from those drugs should occur. We should have a normal life for a while now until the next scan in a few months.
The latest (10/14, 8:00 a.m.): Jana is meeting with our oncologist this afternoon -- I can't join them as I am at an offsite sales conference. We are hoping for good news with the MRI results. The preliminary news was good, so we want more of the same.
Online ticketing for the benefit concert Monday night is live now. Go here to buy tickets: http://www.myspace.com/dylapalooza
Please share this link with your friends if you're in L.A. via email and social networks. Thank you!
The latest (10/13, 5:00 a.m.): Jana is meeting with our oncologist tomorrow -- I can't join them as I will be at an offsite sales conference with work.
The latest (10/12, 7:00 a.m.): We hope to hear from our oncologist about the latest MRI with definitive news some time this week. He has been out of town. The preliminary news was good, so we hope for more of the same.
We had a mellow weekend filled with playdates and sleepovers for the boys. We spent Saturday getting all our costumes for Halloween and the plays the boys are in (Captain Kirk for me, John Lennon in Sgt. Pepper dress for Chandler for Halloween, Peter Pan for Chandler for the school play, and a crocodile for Dylan for the school play).
Chandler also learned he is playing Danny in his acting/singing class version of Grease. Another lead role!
Jana's mom came to town. I have an off-site sales conference for 3 days starting tomorrow, so it will help to have her here.
MySpace is putting on a benefit concert a week from today for our family, called Dylapalooza, at the Echoplex. Online ticketing should go up, hopefully, today.
More details here: http://www.myspace.com/dylapalooza
The latest (10/9, 6:00 a.m.): No word so far from CHLA about the updated scans, but our copies arrived in the mail yesterday, so we know they went out from UCLA. We had our parent dinners for both boys' classes this week; it was nice to meet some new parents and see some that I hadn't seen in a while (and to eat some phenomenally great food!).
Jana's mom comes into town tomorrow for a week (no mother-in-law jokes, please!). I have an off-site sales conference for 3 days next week, so it will help to have her here.
The latest (10/8, 6:00 a.m.): The CD-ROM of Dylan's scans should arrive at Children's Hospital today to give us a more definitive answer, but we're not sure if anyone will read them or they'll just wait for our oncologist to return to town next week. Stay tuned.
The latest (10/7, 5:00 a.m.): Jana called UCLA about the missing scans and learned they had made an error in their records regarding Dylan's hospital number. They put ALL the scans on a CD-ROM and sent them to Children's Hospital for a more thorough reading, hopefully by the end of the week. Our oncologist there isn't back until next week, but someone else at the hospital should be able to read them and tell us more detail.
The latest (10/6, 7:00 a.m.): Preliminary results of Dylan's MRI are good. They compared the recent scan to one from April that showed that the tumors were smaller, which was the result of a scan between April and last week which we need to get copies of over to the CHLA doctors (the UCLA scan department was supposed to include ALL scans on their CD ROM, but did not, even though they told us they did -- FAIL!).
All in all, and knowing what we already know about the later scans, this is good news and we hope we can assume the answer is again NO CHANGE from the most recent scans and that the tumors in there are dead from the radiation, which is why they aren't growing.
The latest (10/5, 5:00 a.m.): We are hoping to hear back about last week's MRI today some time. If we do, I'll post results later tonight or in the a.m. on tomorrow's blog.
The boys had a blast camping over the weekend. They rode bikes and scooters around the campgrounds, explored the tide pools at the beach, cooked hot dogs and smores over the fire, and put on hilarious skits for the adults. Here are a few pics:
The latest (10/3, 7:00 a.m.): MRI results won't be read to us until Monday. No one was there on Friday that could read the scans. We're camping this weekend and just not thinking about it while waiting.
Friday a video was due at work (I work at MySpace if you didn't already know that) about why myspace is "MY space." I love the site for many reasons, and the people that make up the company for many more, but given only a few minutes, I chose to tell Dylan's story. Here is the video:
The latest (10/2, 7:00 a.m.): We're going camping this weekend up at Leo Carrillo. The boys are very excited. Will post some pics on Monday.
We should hear back from one of the other doctors at Children's Hospital with the results from yesterday's MRI some time later this morning. If I can provide an update on here I will. Stay tuned....
The latest (10/1, 6:00 a.m.): Dylan has an important MRI today (as long as his cold gets better -- can't do the anesthesia with a blocked airway). Prayers, thoughts, vibes, as always, for no change (which would hopefully mean the tumors in there are dead and not growing/shedding cells that would take root and grow again). We're going to try to get it read today, but we're not sure if that is possible to do. The MRI is at UCLA and our oncologist, who is at Children's Hospital is out of town until mid-October, so it will be someone else comparing slides.
The latest (9/30, 6:00 a.m.): Dylan and Chandler got their roles for the school play: Chandler is the title character, Peter Pan himself (though splitting the role with a few other kids to share the spotlight), and Dylan is going to be the infamous Crocodile, and also Peter Pan's Shadow, all by himself! They are both very excited. The show is two nights, Dec 4 and 5, at the boys' school. I'll post more details about when tickets are on sale, probably not for another month or maybe two.
Dylan was fitted for hearing aids yesterday. One of the permanent side effects of chemo is severe loss in the high decibels. Dylan misses a lot of "s" sounds in his words: he doesn't even know he's not saying them. So this should help. We're not sure when he'll actually get his devices. Should know later in the week....
Dylan also has an important MRI tomorrow (as long as his cold gets better -- can't do the anesthesia with a blocked airway). Prayers, thoughts, vibes, as always, for no change (which would hopefully mean the tumors in there are dead and not growing/shedding cells that would take root and grow again).
We may not get the results right away since we're doing the MRI at UCLA, our oncologist is at CHLA and he's leaving town for a couple of weeks. We may get someone else at one of the two hospitals to read it for us.
The latest (9/29, 7:00 a.m.): Both boys had colds all weekend and are still sick, though they did go to the beach Saturday and a friend's house yesterday to play Beatles Rock Band. They have today off from school.
A mom asked a lot of cancer families 14 questions on her Facebook page. I edited them a bit and gave my own answers below. It gives a different take on our history than I usually go into on these pages. Note that these are my answers and my wife, Jana, would certainly have answered many of them differently (perhaps she will provide her own response some time).
QUESTION #1 - Many people may not realize that Childhood Cancer comes in many different forms. Would you please share with us the type of cancer that your child has/had & what the treatment involved?
ANSWER - Dylan was diagnosed with medulloblastoma, a tumor in the back of his head, down near his neck. It was removed surgically, but he suffered post fossa syndrome, the equivalent of a stroke, during surgery. He could not sit up, talk, walk, eat, speak or even smile. He had high dose chemo, including a stem cell transplant, for 9 months; and lots of physical and occupational therapy which continue. He had clean scans for a year until a relapse showed up on January in his spine, called leptomeningeal disease. That was treated with chemo and radiation, which we had hoped to avoid, and then we tried an experimental treatment, called 3F8 monoclonal antibody treatment, in New York, which was not successful. We will start a new round of treatments next month and hope for the best. You can read a lot more about his treatment and history at his site: http://dylan.ericdavid.info/
QUESTION #2 - Would you please share with us the important dates marking your child's journey?
ANSWER - Dylan was born May 26, 2002, a beautiful day in the history of the world. July 28, 2007 was the day that changed our lives, when he was diagnosed. The next day he underwent surgery and suffered the stroke. August 24, 2008 Dylan started chemo. He first came home from the hospital on October 8, 2008 for a brief respite. After the last round of chemo and stem cell transplant, and yet another complicating infection, on February 25, 2008 we brought Dylan home, for good we thought, with only checkups in the future. January 26, 2009 was the day we learned of the relapse. Harder in many ways than the first time. February 19, 2009 Dylan started chemo again, and started radiation on April 27, 2009. He completed radiation on June 23, 2009. We left for New York July 24, 2009 and he came home on September 21, 2009.
QUESTION #3 - Please share some facts about childhood cancer that we, the general population, might not necessarily know?
ANSWER - It is much harder to deal with than an adult who has lived a full life and perhaps made certain choices that could have caused the disease. It's so unfair that the anger around the affliction never truly goes away. More children are diagnosed each year and brain tumors are apparently on the rise. Another fact is that the siblings are hit just as hard as anyone else in the family. Make a point to ask how they are doing as well and include them in gifts, etc. People stare and ask inappropriate questions: they don't know how to handle this, but our children are not freaks, they are unwilling victims of disease and surgery and infections and scars and shunts and side effects and did NOTHING to deserve it.
QUESTION #4 - Please share some ways that we might be able to help your cause.
ANSWER - Give your time - visit sick kids, join a cause that helps, write letters and send cards to the families, write congress and sign petitions; give your talent - cook meals, dress up as a clown, pirate, Scooby Doo, sing to the sick or play an instrument or paint a nice get well card; give your blood - there are ALWAYS shortages of blood and platelets, contact a local hospital to see how you can give; give your money - there are many good charities (more on that below), or you could donate your own kids toys to a local children's hospital.
QUESTION #5 - If someone is wanting to donate money to help find a cure, where would be a good place to send it? Where should we NOT send our money?
ANSWER - We think the Pediatric Brain Tumor Foundation would be the best place to donate. Curesearch.org is a second choice, for cancers in general. You can also donate funds to a local hospital that treats children. I have heard the American Cancer Society is not helpful with children in particular, perhaps because cancer in children is so rare.
QUESTION #6 - What would be some advice that you would like to share with friends & extended family of someone whose child was just diagnosed with a type of childhood cancer? Of someone whose child has been fighting for a while? Of someone whose child has died? What advice would you give to these friends & extended families?
ANSWER - Words will always fail, just be there for the suffering and bereaved, however you can. Know that you can never know what those people are going through, but that it will help for them to know you are there for them. Do everything you can to help them out with their needs without imposing yourself on them (e.g. visit them in the hospital, but check first with them or a close relative to see if they appreciate visitors). Some of the greatest needs during these times are little chores you could pick up: grocery shopping, doing the laundry, helping with the bills, gas cards, etc. Help them set up a carepage if they are not internet literate and you are (they are pretty easy to set up).
QUESTION #7 - As a parent of a fighter/angel/survivor - what is something that you wish people would say or do?
ANSWER - People have been so generous, giving of themselves: donating funds, blood, platelets, bringing meals, running races in Dylan's name, doing our laundry, giving us tickets to shows, picking up big brother Chandler, commenting on our social network sites, sending supportive emails, helping us with research, praying for us, thinking about us, just giving us a hug sometimes helps get through the day. On a larger scaled, people need to get involved in the fight, write your representatives, fund research, spread the word. Don't just sit there. :)
QUESTION #8 - As a parent of a fighter/angel/survivor - what is something that you wish people WOULD NOT say or do?
ANSWER - I am bothered when people tell me how strong I am. I'm not. I just do what any of you would do to muddle through such a tragedy. I wept every morning for a year and still do, frequently. I have dark thoughts that somehow his getting cancer is my fault, or that I did something to deserve this. I am disgusted with how I have let myself go and gained so much weight. I am also a little wary of the religious talk, especially that God will give us what we want if we pray hard enough or have enough faith.
QUESTION #9 - During your journey what is something that someone did for your family that really ministered to you?
ANSWER - The blood and platelet donations were huge, and as much as we need money to offset the mounting medical bills, I think the actions that had the biggest impact in our lives, especially Dylan's, were when people came to visit him in the hospital. His childhood friends came and brought gifts and played with him, family members traveled great distances to make him laugh, two friends came dressed as Shaggy and Scooby (his favorite show), another dressed as a pirate. This ministered to us as much as our actual ministers from our church who came to pray, no small thing in our view.
QUESTION #10 - For those of us who want to reach out to you but really aren't sure what to say or how to act. What would you advise?
ANSWER - We aren't as touchy as some folk. Jana and I are pretty down to earth and honest when it comes to our needs and feelings. So don't avoid us or refrain from reaching out. Don't be ashamed of your own feelings or the hugeness of what we're facing. We need you. All of you. So come give us hugs, send emails or comment on our pages, call on the phone, come by our home (if everyone's immunity is good and you aren't showing signs of illness). We resisted this kindness at first, but have come to learn that it is a special grace to be able to receive the gift of someone's presence, time and love.
QUESTION #11 - If a person/family has limited time/finances what are some ways that they can still be involved in this fight?
ANSWER - We're all on email now and many on MySpace, Facebook, Twitter and other networks. Many also belong to organizations, both secular and religious. Ask your group, church, temple, mosque if they help and if not, make them. Find a way to share the story you have learned with those groups you belong to, real or virtual. If you don't have time or money, someone you know will and that will be a way you can help, through casting your net widely.
QUESTION #12 - What are some businesses that we should patronize that are supporters of Childhood cancer research?
ANSWER - We love Make a Wish -- they sent us to Hawaii -- and you can donate to them through Cold Stone Creameries. Six Flags asked Dylan to be their ambassador for Cure Kids Cancer, another good place. USA Florist gives proceeds to the Pediatric Brain Tumor Foundation if you order through their site. Here are the sites:
QUESTION #13 - Fighting childhood cancer can really hit a family hard in many different areas- physically, mentally, emotionally, spiritually ... but there is another area that I want to talk about- financially. Will you please share how you or other families that you know were affected in this area?
ANSWER - Cancer and its related treatments can cost millions of dollars. We have at least $1.5 million so far in insurance claims. We know of other families who have or will need to claim bankruptcy. We were fortunate in comparison in that we have good insurance through work and my workplace has been very understanding and flexible with hours, working from home, keeping me on the payroll and not forcing a leave of absence, etc. (Thanks, MySpace!) Even so, we have had tens of thousands of dollars of costs both medical, and related to travel, parking, and so on that we normally would not have faced.
QUESTION #14 - Is there something on your heart that you just want to share?
ANSWER - There is a saying to rejoice in your sufferings. I don't know who could ever do that, but the outpouring of affection, giving, charity and love we have experienced is greater than anything I have ever experienced. We live where famous people get all the perks and are adored by millions, but feel that we have been granted the kind of attention that usually goes to those more fortunate in life; that we have been blessed in a way by this tragic happening; that it has made us stronger in some ways and has certainly given us the chance to put things in perspective, to focus on what's important and to remember to hug our kids every day and appreciate the little things that make life beautiful. The latest (9/28, 7:00 a.m.): Both boys had colds all weekend and are still sick, though they did go to the beach Saturday and a friend's house yesterday to play Beatles Rock Band. They have today off from school.
The latest (9/25, 7:00 a.m.): Dylan has been having a rough time in school this week because he gets so tired. Hopefully he'll get back on L.A. time soon and the effects of the raditaion will continue to wear off.
Chandler tried out for the school play yesterday, Peter Pan, and on video for the Grinch musical playing at Pantages this holiday season. The video had to be 2 minutes long and feature a spoken intro, a dance routine, and a song. Here are links: Please comment, we read them to him and it makes him feel great! Thanks.
The latest (9/24, 7:00 a.m.): We met with Dylan's oncologist yesterday afternoon (after fighting brutal traffic out to EaHo and arriving a half hour late). He was disappointed about the Sloan Kettering antibody treatment (and our treatment by some of the staff), but felt hopeful that the MRIs done there showed no change, and that the CSF fluid they tested had no tumor cells in it. He was also hopeful because we have many things left to try. No one has the corner on the market treating this kind of cancer, he said.
First is to get the MRI a week from today, and see what it reveals. With the good MRIs and negative CSF fluid tests, it could be that the tumors that it shows haven't changed are indeed dead, although it's hard to tell without another biopsy, which we want to avoid for now.
We have to wait 6-8 weeks after ending the New York treatment before beginning the next one he has planned, which would be early November. Since Dylan has had so many treatments, there are many drugs he can't have any more, either because they'd be too toxic and possibly cause more cancer. He wants to give a few oral medications for "maintenance" for six weeks and see what happens, called Temozolomide, SAHA, and Accutane.
After that, we may try Celebrex and Calcitriol (vitamin D3) which have shown some promise, but lack hard, strong data. On the more experimental treatments (thanks to all who have suggested them), we will need to wait until the above treatment is complete, AND the tumors are growing, so hopefully we'll never need to go there. If we do, we might try to inject drugs straight into his spine, since we know it can't trickle down from his brain, because of the blockage of his CSF flow (hopefully from scar tissue, rather than tumors). Drugs he had in mind for this radical approach were: Topotecan, Etoposide and Thiotepa.
He said that Dylan looks great, given the circumstances, and ordered blood work which we'll get back some time today. Our next meeting with him is scheduled for mid-October (he's out of town for a while), but we'll get MRI readings from someone else on his staff before then. We'll also work, finally, on getting Dylan a hearing aid while waiting to begin the next treatment (a permanent side effect of the high-dose chemo he had a year ago is severe hearing loss in the high decibels). We'll be testing his spinal fluid and getting MRIs about every three months from now on, until we know for sure one way or the other if things are growing or not.
Chandler tries out for the school production today, Peter Pan, being allowed one 30-second speech and one 30-second song. He's reciting the Preamble from the Constitution for the former, singing the first stanza and chorus of "Let It Be" for the latter. Hope he lands a great role! After school, we're taking him to videotape a 2-minute song and dance routine for yet another tryout, this one to be a Who from Whoville in the Pantages production of the Grinch musical, which starts in November.
The latest (9/23, 6:00 a.m.): We went to Back to School night and learned a lot about the boys' teachers, what their curriculum will be, what is expected of them in class, saw some parents we hadn't seen yet at drop-off, and met a few new parents (following Dylan's advice to "make some new friends"!).
I have early meetings at work. If I can recover from the short sleep nights, I'll start walking Chandler to school again Thursday and Friday. I miss that time together. Also can't wait until Dylan is big enough and energetic enough to join us one day.
We meet with Dylan's chief oncologist late this afternoon. Come back for the report tomorrow....
The latest (9/22, 6:00 a.m.): Not much to report from yesterday. Dylan and Chandler went to school and had a normal day. They swam at a friends' house and came home and did homework. If only every day was so, well, everyday. :)
The mail brought (among the hospital bills) the great news that Chandler got his STAR tests from last year, and scored "Advanced" in both math and language! Tonight is "Back to School" night at the boys' school where we hear from their teachers about what the year will be like for our kids.
Last night Dylan told me to "make a lot of new friends" today at work, just like we tell him to do at school. So cute. He must think work is like school and we go around to different classrooms and learn about things.... Hmmm, maybe it is!
We also made an appointment with Dylan's oncologist for Wednesday afternoon. Hope to learn a lot about next steps then....
The latest (9/21, 6:00 a.m.): Our New York oncologist finally emailed on Friday to say that very little, if any, of the antibody treatment trickled down to Dylan's spine, where the cancer is. We are very disappointed by this news. She did say that his spinal fluid was clear of cancer cells, which is a bit of good news. We have an MRI on October 1 that should tell us more about the tumors in there.
Later Friday, some of the Mets came by the Ronald McDonald house to deliver brand new washer/driers to all the rooms. Dylan got ANOTHER baseball signed, this time by the '69 Mets Bud Harrelson. Bud asked Dylan if he likes baseball and Dylan replied, "Well, not really." Gotta love his honesty!
Jana and Dylan came home Saturday and we drove Chandler out to the Adderley school in the Palisades straight from the airport for the first rehearsal and tryouts for "Grease." Between naps, the boys jumped in the pool with some friends. Here are a few pics of Dylan in New York and the wet boys at home:
Yesterday we did our normal church and children's choir thang, and played at the park in the afternoon, and had friends over to swim in the pool until dinner time. Also, Dylan is "Star Student" in class this week. He filled out a poster all about himself last night, and the class learns about him all during the week (favorite color: blue; favorite animal: badger; what he wants to be when he grows up: a karate instructor; favorite place: Dylan's Candy Bar in New York; favorite thing to do: swim; etc.).
This week, we meet with our oncologist here about next steps. We will investigate any other open studies, medical treatments, alternative therapies and possibly travel abroad where regulations are less stringent and medications sometimes are years in advance of those in this country. It all depends on what's been proven to work with this type of cancer in kids.
On a sad note, we join hundreds of online friends in grieving the death of a little girl we met two years ago at Children's Hospital, who lost her battle yesterday after many years of fighting this evil disease. She just turned 10 on Saturday. Regina, rest in peace, little princess. May your family find some modicum of solace in knowing you're no longer in pain, and may the hole left in their lives neither ache too badly, nor for too long....
The latest (9/18, 6:00 a.m.): Dylan only got one out of four antibody treatments, his CSF was just too slow. The alternative therapies do not appear to have been effective. The doctor on our case wouldn't answer Jana when she wanted to know if the scans showed whether it went down to his spine or not, because it wasn’t in the computer (though she could just as easily have gone to the lab and checked). She said she’d call Jana when it was online and let her know. She didn’t call. Needless to say, it's disappointment enough to be turned away from further treatment, but to be treated that way by your primary oncologist is not what a cancer mom should have to deal with.
We are hoping other treatments that our oncologist here in Los Angeles has in mind might also work. I'll post more about those as we learn about them ourselves.
Jana and Dylan return tomorrow, and Dylan is Star Student in his class next week. We have an MRI scheduled at UCLA for October 1 which should tell us what is going on in his spine. It's the waiting game until then....
The latest (9/17, 6:00 a.m.): Dylan saw a craniosacral therapist again yesterday. Jana thinks it is helping; she thought the antibody treatment seemed to be flowing better on Tuesday, compared to the last time she watched the results on the machine and they said his cerebral-spinal fluid (CSF) was too slow. However late yesterday afternoon, they ran a second scan and it was better than last time, but probably not good enough to continue on to a second treatment.
They'll run one last scan and let us know if they can move on to a second treatment or not. As hard as it is for them to be all the way across the country, I am really hoping they can stay there and get at least one more treatment. Please hold Dylan close to heart and stay tuned for the answer, hopefully, later today....
The latest (9/16, 5:00 a.m.): Dylan started treatment yesterday and we'll know if he continues next week either today or tomorrow. Stay tuned on here for updates.
He was treated to a visit from the whole New York Yankees team at the hospital and pitcher Andy Pettitte spent most of the time with Super Dylan. Here is a photo of him with a ball Andy signed:
I was asked to speak to members of the Advertising Industry Emergency Fund last night, which has helped our family financially during both episodes of cancer. If you're in the ad industry, it's worth checking it out. I hope I did them some good in giving back to them and sharing my story with others. Here's their site:
The latest (9/15, 6:00 a.m.): Dylan and Jana flew back to New York yesterday and had a good flight. They flew Virgin America again, which has all the Disney Channel shows Dylan loves. I gave Jana my copy of The Guinea Pig Diaries to read; a really funny book. I miss them badly. :(
He gets his first injection of the larger dose of antibody treatment today and we'll know, possibly tomorrow, but probably Thursday, if they'll continue on with another week. Hoping for minimal to no side effects and good CSF flow. Thanks.
The latest (9/14, 5:00 a.m.): Dylan saw the craniosacral therapist Friday after school and she thinks she did some good, but she could sense that his cerebral-spinal fluid was slow (dry, actually). They return to New York this morning for the first official treatment tomorrow, and we'll know if they'll get any more weeks of treatment on Wednesday or Thursday when they measure his flow.
We had a good weekend: Jana and the boys went to the beach on Saturday while I worked on another film-related article and the latest page of pictures on Dylan's site:
We had dinner at Souplantation (again) with a friend of mine from film school whose parents lent us the apartment in New York. Then, on Sunday we went to a picnic at our church and saw a lot of friends we had missed over the summer, and then enjoyed the Brentwood Art Show down the street.
Both boys enjoyed their first week of school. They are doing the Fall Production of Peter Pan at school, although Dylan has decided he doesn't want any lines. Chandler is also doing a production of Grease at the Adderley School in Pacific Palisades.
Chandler goes home with a different mom and friend from school each day this week and I'll pick him up after work. We're also hoping to start walking together to school again after today (have to run Jana and Dylan to the airport immediately after dropping Chandler off at school).
The latest (9/11, 5:00 a.m.): After seeing Ground Zero first hand, this day means a lot more to us now....
The second day of school went well for both boys. Dylan's hair has grown back enough that he got a haircut, a tiny trim of a couple of millimeters, but this will make it look better when it grows in more fully.
Chandler told me he played baseball during recess and hit a home run! I was so proud of him. He isn't really into sports, but does well when he gives it a try.
We went to the boys' favorite restaurant for dinner, Souplantation (their grandmother calls it "Super Celebration," which it was, of our return home). Dylan sees a craniosacral therapist this afternoon to, hopefully, open up his CSF flow for more effective treatments when he returns to New York next week. Whatever you think about alternative therapies (I am a skeptic myself), please keep Dylan in your thoughts and prayers in the hopes that it will do the trick. More on this kind of therapy here:
The latest (9/10, 5:00 a.m.): Dylan and Chandler started school yesterday and both got teachers that they like. It was great to see everyone again and even meet a few new parents and kids. They are half days this week with light homework to ease into things. Mommy also celebrated by taking the boys to Twist for frozen yogurt. :) Then Chandler went to a musical dance class last night at 7 pm -- don't know how he did it!
We are all tired from travel and jet-lagged, still on NY time. I am hoping that Dylan and Jana don't adjust too well, only to return to New York and be feeling off for another few days. Dylan said today he misses New York, but mostly missed "The Hamsters" (Hamptons) and seeing his grandparents and aunts & uncles.
The latest (9/9, 6:00 a.m. Pacific!): We had a looooong day yesterday packing and traveling. Traffic was bad in New York with everyone back from the summer, so we missed the 45 minute cutoff to check in with bags. I sent Jana and the boys on ahead through security with carry-ons and they made the flight, and I had to take a later one with all 8 (!) of our bags, arriving home after midnight.
The boys awoke around 4 because we're still on New York time and we got up to realize that our house is covered in a fine film of soot from the fires. Dylan can't breathe this stuff in, so we'll have to clean it all up while the boys are at school today. We're excited for the first day of school today and to learn which teachers the boys got for the year.
We are so glad to be home, and want to send some shout-outs to people we are grateful to for making our New York trip so memorable:
- My friend's parents for loaning us their apartment for nearly seven weeks
- My parents for renting a house in the Hamptons so we could escape the city every weekend
- My sisters and their fellas for offering support above and beyond the call of familial duty
- The doormen in the apartment and car service drivers for being so kind and gracious
- My managers at work and the whole New York MySpace office for creating a welcoming work environment
- Everyone who gave us rides to and from the airports
- Everyone who made us meals, sent the boys gifts or gave us tickets to shows, screenings and museums
- Everyone who donated funds to help offset the costs of the trip (including the medical bills)
- Everyone who donated platelets to Dylan (or tried)
- Everyone who put mental and spiritual energy toward Dylan's healing and our family's strength for the journey
- Everyone who gave us suggestions on what to do with kids in New York city (list below, with strik-throughs of things we did)
- Anyone I have unintentionally left out because I am jet lagged and brain-dead Shows:
Blue Man (Vegas)
Little Mermaid (L.A.)
Young Frankenstein (L.A.) Museums
Museum of Natural History
Metropolitan Museum of Art (near apt)
Museum of Modern Art (near work)
Guggenheim (near apt) Frick (very near apt) Cloisters (Harlem) Madame Tussaud’s Wax Museum
Ripleys Believe it or Not Museum USS Intrepid Museum (midtown East, on the river, taxi) Queens Museum of Art (panorama of NY)
Empire State Building
St. Patrick’s Cathedral
New York Public Library (near work)
Grand Central Station (Whispering Gallery) (42nd and Park, near work) Harvard Club Algonquin Hotel (famous Round Table)
Top of the Rock Chinatown Ground Zero (south) Statue of Liberty & Ellis Island (off South tip of Manhattan)
Jeffrey’s Hook Lighthouse (Geo Wash Bridge) (North, take taxi?)
South Street Seaport (far to the south, take train?)
Bronx Zoo (take the train)
New York Aquarium (Coney Island)
Coney Island (carousel, brass ring) (day trip) Fun & Games FAO Schwartz (just at South of Park on our side) (Plaza Hotel) Toys R Us ferris wheel (Times Square) Yankees or Mets game (11th)
Chelsea Piers (ice skating and bowling and a driving range, by the water) (near Intrepid)
Playland, Rye NY, boardwalk is in the movie BIG Restaurants
Mars 2112 Carmines
Patsy’s Pizzeria (69th & 2nd)
High Life (78th & 2nd) (near apt)
Dylan’s Candy Bar (near hosp) Serendipity 3 Ice Cream Shop (Frozen Hot Chocolate w/Whipped Cream) (near hosp)
J.G. Melon (near apt) Serafina (near apt) Luke’s (near apt)
Ruby Foo's (Times Square) Oriental Garden (lower East)
Mickey Mantle's (just South of Central Park)
Thalia's (Times Square)
Ellen’s Stardust Diner (Times square)
Jekyll and Hyde Club (just South of Central Park)
Famous Original Ray’s Pizza (near work)
Barney Greengrass (breakfast).
Macy’s Café (midtown)
Carnegie Deli (just South of Central Park)
Katz’s Deli (downtown)
Two Boots Pizza (Lower East)
Il Nido [closed]
Pretzels/Pizza on the Street (doc says not for Dylan, though)
Zabar's Deli (upper West side)
Grimaldi’s Pizza (downtown)
The latest (9/8, 7:00 a.m. Eastern): We leave New York today to attend the start of school, knowing that Jana and Dylan will return to New York next week for treatment (Kenter moms: let me know if you can take Chandler after school next week, send me a message). We'll miss this town we've come to love, but are all yearning for home after the delays and frustrations of the hospital here. We just wish the fires were out in Cali. Dylan's also going by the hospital for one last trip to the playroom and injection of platelets, if he needs them.
For our last hurrah, we had an action-packed weekend of touring New York, including: riding the subway (Dylan thought there would be sandwiches) and the Metro system, visiting Grand Central station, the New York Public Library, Planet Hollywood, the Statue of Liberty, Ground Zero, the Museum of Natural History and Central Park. We also went out to the Hamptons for our last weekend this summer. Photos of our weekend are here (start at the bottom of the page):
The latest (9/4, 5:00 a.m. Eastern): We changed plans (again) and are going home Tuesday as originally planned. Jana wanted to look into an alternative therapy (cranial sacral therapy) that might open up Dylan's cerebral spinal flow and let him get more than one therapy when they return. The doctor here and our pediatrician were not against it. Jana's also looking into a distance healer that says she can also help. So we will be there for the first few days of school and then they'll return the following week for at least one therapy and maybe more if the alternative stuff works. One can only hope that it does, if only because Dylan believes it will help and his mind makes things change.
Chandler loved Shrek last night -- he wishes he could be in it! I'm taking today off work to show the kids some more fun parts of the city (Statue of Liberty, South Street Seaport, Grand Central, NYPL, and more). If time allows, I will bring them by work for a few minutes, for those lucky few in the New York office who decided to show up.
We have one more weekend in the Hamptons and we come back to spend Labor Day at the Museum of Natural History and hanging out in Central Park (and packing!).
Tune in to my next blog (Tuesday) for the recap and more fun photos!
The latest (9/3, 10:30 a.m. Eastern): The doctor told Jana they can only do one treatment, not four, because Dylan's CSF is flowing too slowly, and doing more than one injection would give him too much radiation to his brain. Also, they need to do the 48 hour scans to make sure it's going smoothly, and can't start until Tuesday, so we wouldn't be finished until Thursday, a week from today, which means we're going to miss the first week of school. We had hoped we could do the one injection today and go home as planned, but it was too late to do so by the time the decision was made (they only do these injections Tuesdays and Thursdays). At least we are getting some treatment, and not leaving empty-handed after all we've been through, and we're only missing three days of school instead of three weeks, but this is pretty much a let-down.
The latest (9/3, 7:00 a.m. Eastern): The doctor did not give us any answers yesterday, saying that she needed to consult with the brain tumor board before making decisions or proceeding, so we are NOT getting any treatment this week. That much is all that's certain. We should hear back some time this morning about whether they've decided to proceed with treatment, or perform some kind of surgery, or just send us home, or maybe another option, based on the tests this week.
So we should have enough info some time today to determine the course of the next few weeks, especially whether we return together for the start of school, stay here as a family unit, or split up in one way or another. Stay tuned for, hopefully, an update of substance later today.
I went with the boys to the toy store that's next to our loaner apartment here in the city and let them get what they wanted. Chandler got a ghoulish green ghost mask (he's already stoked about Halloween) and Dylan got a Spiderman action figure on an ATV assault vehicle thingy.
I'm planning to take Chandler to one final musical tonight, Shrek, in case we're still leaving town next week.
The latest (9/2, 7:00 a.m. Eastern): Jana asked me to join her at the hospital yesterday, in case we got bad news from the study that had to be done, so I took the day off work and spent most of the day waiting for results. I have always disliked hospitals and children's cancer wards are the toughest place to spend your time, because of all the suffering you see. Hats off to Jana for dealing with it for so many years now; I have only been "on duty" on weekends, for the most part. Yet there are also many smiles and bright spots in the time spent there, because, after all, they are still kids.
Dylan spent most of the day playing video games in the playroom (his favorite spot in the city, by far), and Chandler made friends with two other 9-year-old boys who both have cancer. He is so sweet, and was really nice to them. He had his second "CSF flow study," to determine what's going wrong with the flow of his cerebral-spinal fluid. We are hoping that last week's snafu was a technical error and not anything serious that will further delay treatment.
We didn't really learn much, and they will have to go back in today for more testing and hopefully something definitive. The doctor promised we would know one way or the other today. The options are we can continue with the therapy tomorrow and next Tuesday and take the boys home for school as planned, or we'll have to stay and deal with whatever is causing Dylan's cerebral spinal fluid not to flow correctly. Stay tuned for an update later, hopefully with good news.
So, once we had thought we were done with everything yesterday mid-afternoon, I split off from them and went to the Times Square TKTS booth to buy Mary Poppins tickets for last night (it's discounted same-night seating to most Broadway shows), and run some other minor errands. Jana and the boys went home. Just after I got the tickets, I heard from Jana that they had to go back to the hospital for the Pentamidine medicine that he's taking instead of Dapsone, which was what was causing the elevated liver enzyme counts. That was a pretty big blow, because she thought she could have the rest of the day to relax.
They all got home around 6 and then Chandler and I went to the show and really enjoyed it. It was quite different than the movie, or even the books, all of which I read to him when he was younger. It was definitely a super(califragilisticexpalidocious) show! We also downloaded a lot of the soundtracks to all these musicals to his MP3 player. Can't wait to see what he picks to sing for the school talent show this year....
The latest (9/1, 7:00 a.m. Eastern): You may have seen my update after yesterday's blog that Dylan's treatment will be delayed again while they take another look at his CSF flow. If not, click this link for all my past updates, including yesterday's:
We're meeting with the doctors this morning to ask them if the smaller treatment needs to be repeated (the doctor we spoke with yesterday did not think so and that we could proceed with the therapeutic treatment). And if the therapeutic treatment can be given on Thursday, or if everything will be pushed back yet another week. This depends on whether or not the flow study needs to run a full 48-hour course or if there is room for compromise.
Then Jana and I will need to decide whether we all stay past the beginning of school, or if we go back and just Jana and Dylan return, just for longer than we had hoped for, or if we can keep to our plan (they would return for treatment on Sept. 15th and return after treatment on Sept. 22nd). Those last two treatments are also contingent upon the amount of radiation the earlier treatments are giving him. He may be getting too much and thus they would be cancelled.
So a lot is up in the air, which has become the norm for us. Nevertheless, it is very hard on Jana to go through all this mostly alone, although I am with her in person. I am glad to be able to join her this morning for a short while to give moral support.
Also, please note that September is Childhood Cancer Awareness Month. While rare, pediatric cancer is the leading cause of death by disease in children younger than 15, according to the American Cancer Society. More than 12,500 children nationwide will be diagnosed with cancer this year. However the prognosis for these youngsters is not as poor as it used to be. The five-year survival rate for children with cancer is 80 percent, which is up from 50 percent in the early 1970s.
Here is a great cause that gives you a way to help fight childhood cancer every day this month. Download the calendar here and do what it suggests:
The latest (8/31, 10:30 a.m. Eastern): We received an email just now from the head oncologist at Sloan Kettering, telling us that the treatment last week did not go as planned: the PET scans showed the injection did not flow in Dylan's spinal fluid as it was supposed to, but instead drained out his shunt. So either the shunt was mis-programmed by a technician there, which would stink but would be better than the other option, which is that the tumors have grown and blocked the flow of Dylan's cerebral spinal fluid (CSF). The doctor thinks the latter is highly unlikely since Dylan had a good flow study recently and the MRIs showed no growth of tumor. So they need to run another CSF flow study tomorrow, instead of continuing with treatment, and this may throw off our whole treatment schedule by at least another week, that is, if it's the better of the two possibilities. Please keep us in your thoughts and prayers as this is very nerve-wracking and frightening for us all.
The latest (8/31, 8:00 a.m. Eastern): Dylan took the first week of treatment well, but it was a smaller dose than the remainder will be (last week's was more of a test at 2 millicuries, the remaining 4 therapeutic treatments are 10 millicuries each). He is supposed to get the full dose tomorrow, and we're not sure if side effects will be cumulative as they were with standard radiation.
We're planning to fly back to Los Angeles right after the injection is complete next Tuesday (9/8) so the boys can go to the first day of school on Wednesday, and then Jana and Dylan would return for the final two injections. The final two treatments may be cancelled (because he is getting too much radiation according to the nuclear medicine scientists). We hope to learn more about the final two treatments and Dylan's travel plans at the end of this week.
We spent the weekend in the Hamptons, as usual, but -- not as usual -- had to find many indoor activities to keep us occupied as it rained all day Saturday. I took Chandler to a musical at the Sag Harbor theater called Dames at Sea and then Jana to the movie Julie and Julia.
On Sunday, we went out to Montauk, near where my sister lives, and she showed us around the area. We had lunch by the docks where we could watch the fishing boats go in and out, and then went to the Montauk Lighthouse. Chandler and I climbed to the top and also climbed on the rocks on the beach.
The latest (8/28, 8:00 a.m. Eastern): After a PET scan in the morning, Dylan met up with Chandler and their L.A. friends and they all went to the Central Park Zoo then climbing on some of the huge rocks in Central Park. Jana was so pleased to see how much Dylan has gotten his energy back.
Last night we went to the world famous Serendipity restaurant for their trademark Frozen Hot Chocolate and a yummy meal. Here's a picture of the frozen concoction:
Off to Sag Harbor for the weekend again!
The latest (8/27, 6:00 a.m. Eastern): Dylan is doing well so far. He had a PET scan yesterday and another one today. The purpose of the scans is to see how well the antibody treatment is flowing through his spinal fluid, and thus how much radiation he's getting from the treatment.
Dylan and Chandler's friends are in town from Los Angeles, and Chandler had a sleepover with them after we all ate out at J.G. Melon's. They may go to the Natural History Museum and Planetarium today.
The news of Ted Kennedy's passing was hard for me to take. Though Dylan is 7 and not 77 and stronger than anyone I know, it is still hard to see another one gone from this horrible disease. Here is a list of semi-famous people who have suffered from brain cancer, only a few of whom have survived:
http://en.wikipedia.org/wiki/List_of_brain_tumor_patients (For those new to our struggle, Dylan had a brain tumor two years ago. He is currently fighting a relapse that is in his spine. A full history is at http://dylan.ericdavid.info/)
The latest (8/26, 7:00 a.m. Eastern): Dylan started treatement yesterday. He took it well and really had no side effects. But the dose this week is 5x smaller than next week's, which is when we'll really know how severe his reaction will be. The side effects are nausea and pain, so they gave him a painkiller/anti-nausea cocktail, including Atavan. He wore a little grin and told his mom, "I'm feeling pretty good at the hospital today!"
Chandler and I went to Billy Elliott and loved it! We got house seats from a friend who knows the man who plays the father (and won a Tony for his performance). He gave us a backstage tour after the show which was fascinating, and he was really a friendly and energetic person, especially after all that work. I think Chandler really identified with the story of a boy who is different than the others and wants to pursue his dream to be creative. A photo of Chandler with the actor is here:
http://viewmorepics.myspace.com/index.cfm?fuseaction=user.viewPicture&friendID=114817476&albumId=2561164&page=5 (also a photo of Dylan's antibody port in his head at that link).
Because of the delay in starting treatment, we have changed our return to Los Angeles to September 8. We'll go to the airport after Dylan gets his injection and the boys go to the first day of school the next day. They'll be jet lagged, but both strongly wanted to be there to see what teacher they got and who is in their classes.
The latest (8/25, 7:00 a.m. Eastern): Thankfully, Dylan was able to get both brain and spine MRI scans done at once yesterday, and we have EXCELLENT news -- no change since the last MRI a month ago. The doctors were ecstatic. We were glad to get them both done at once, not only to get the good news all at once, but also because he can't eat after midnight before a scan, so we only wanted to put him through the hunger drill once.
He also had a blood test yesterday, and his liver enzymes and potassium counts were good, which is more EXCELLENT news -- this means we can start treatment today, finally! He gets his first antibody injection at 2 p.m. today. Still need your spiritual energy toward eradication of all cancer cells that are left with this antibody therapy. If you're curious, see this page for a description of how it works (scroll down to the "antibody" subsection of the first section): http://dylan.ericdavid.info/Home/treatment-chemo--rehab
His platelets were a little low, so he's getting an infusion in the morning before the treatment starts. This means we need people in New York to keep donating platelets at Sloan Kettering -- best times would be Thursday through Saturday of this week so they're ready for his next injection on Tuesday of next week. See this page for info:
http://dylan.ericdavid.info/Home/treatment-chemo--rehab/donating-blood-and-platelets Lastly on the medicine front, he tried to take his Pentamidine (see my past updates) via a nebulizer (he breathes the medicine), but couldn't stand the taste, so they're going to give it to him by IV instead, which is not as effective, but his counts will stay low. The respiratory therapist told Jana that just after meeting Dylan, "In all my 30 years of doing this, I haven't met such a special kid. I am already in love with him!"
To celebrate the good news, I took the boys (and Jana) to FAO Schwartz to pick out a toy (Dylan got a Ben 10 action figure and Chandler got yet another black hat for his collection, although a Harry Potter one this time, instead of Wicked). Jana wowed the crowd with a near-perfect rendition of Chopsticks on the Big Piano from the movie "Big," and then Chandler did a good job playing "Ode to Joy."
Then we went by the Plaza Hotel to see where Eloise lived, and then on to the Jekyll and Hyde club, which is like a haunted house restaurant. Photos from our celebration here:
The latest (8/21, 7:00 a.m. Eastern): The family took the day off from the hospital and played in Central Park and went to a toy store and back to Dylan's Candy Bar.
Then for dinner, we went to Mars 2112, where you ride a simulation space ship to Mars and eat among the red rocks and aliens when you come out the other side. After that we went to the Gazillion Bubble Show which was amazing. They brought both boys up on stage and they both were huge hits with the audience. Chandler got to wear a bubble hat, and Dylan was inside a huge bubble by himself, then with another kid, then with three other kids. The woman running the show kept making sure Dylan kept showing her his "beautiful smile" which kept the audience smiling too. Here are photos:
Mars Photos at the end of page 4:
Bubble Show Photos on page 5:
The latest (8/20, 5:00 a.m. Eastern): Dylan's blood tests came back and they were good, but not good enough to start treatment. They'll test again on Monday. We are hoping that switching his meds will continue that trend, and that he will be able to start Tuesday. His platelets were higher, but still not high enough. Thanks to all who have donated this week, we will continue to need them into next week.
If we finally start next week, Dylan will definitely miss the first couple of weeks of school. Not sure if we'll keep Chandler with us for family togetherness, or if I will return with him, or if he will return with a friend who will be out here and stay with them until we get back.
We are going to the Gazillion Bubble Show tonight, and are sitting in the front row! I wrote the producers and they agreed to bring the boys up on stage and do something special with them. I'll post photos as soon as I can. The latest (8/19, 7:00 a.m. Eastern): Dylan returns to the city from the Hamptons today to get his blood tested and we hope he can begin treatment tomorrow. Please send all your healing thoughts, prayers and energy his way. Chandler called me just now to tell me that he went trapeezing yesterday -- he was flying 25 feet up in the air and was so excited.
Last night, I went to a screening of a movie here in Times Square, titled "All Good Things." It was excellent, with a great script and a killer cast (Kirsten Dunset will likely get an Oscar nod -- yes, you read that correctly, she was superb). It was also intriguing to see the process of asking the audience questions about where they were confused, what they liked/didn't like, etc.
The latest (8/18, 7:00 a.m. Eastern): Our doctor from Los Angeles spoke with the one here in New York and they agreed to take Dylan off the medication that may be causing his liver enzymes to be high and switch him to Pentamidine instead, which must be administered via a nebulizer.
Jana and the boys are coming back tomorrow from the Hamptons, where they have been enjoying themselves. We'll test Dylan's blood and see if maybe we can start treatment on Thursday. There has been near-record heat here in the city, with more rain on the way. Boo!
The latest (8/17, 7:00 a.m. Eastern): Dylan and Chandler absolutely love to be out at the Hamptons with my parents. I joined them after work Friday and we went inner tubing Saturday and out on my dad's dingy Sunday. Photos here:
http://viewmorepics.myspace.com/index.cfm?fuseaction=user.viewPicture&friendID=114817476&albumId=2561164&page=4 Jana spoke with our oncologist from Children's Hospital over the weekend about Dylan's liver enzyme counts being high. He said he would recommend to our doctors here in New York that Dylan stop taking Dapsone.
Jana had suspected this was the culprit, since other counts of Dylan's had reacted strangely to his once-per-week dose of Dapsone while we were at UCLA. She was glad to have her suspicions confirmed. The plan is take him off the Dapsone and hopefully start treatment next week. Our oncologist also mentioned a few other treatments that are out there, should we not get the antibody treatment or it not be effective. He comforted Jana and told her not to panic, which was a message we both needed to hear. Radiation ended quite a while ago now and our fear is that the tumors are growing again in his spine. He told us that the MRI results were very promising this far out from radiation and to keep the faith.
The latest (8/14, 5:00 a.m. Eastern): Dylan's blood count results came back. They are still not OK for starting treatment (the liver enzymes, technically his ALT and AST, are high; the bilirubin counts are OK, platelets are dropping, though [NEW YORKERS, PLEASE DONATE PLATELETS - CLICK HERE]). We can come back in for testing later on next week, but there is nothing we can do to help these counts. This is a huge setback and we feel really helpless. The doctor even said we could go back to L.A. if we want until they stabilize, but with school starting up soon, that would separate us as a family to return mid-semester.
Dylan's hair is growing back and the current treatment will not affect that, which is good, because he is ashamed of being bald, as much as we tell him it's "in" nowadays. However, his hair is not growing in at the bottom in back and never will -- this is the area where the blast of radiation went into his brain (you can kind of tell from this picture:
although there are always advances in these kinds of medicines, so perhaps by the time he is older there will be an uber Rogaine that he can use. Also, based on the rules of male pattern baldness, the lower back of the head is the ONLY place he'd have hair left later in life. :(
Though Jana and I have been having trouble sleeping since leaving home, the boys are sleeping well. And Dylan's nightmares seem to have stopped, though he still talks a lot in his sleep, which is often funny. Recent quotes: "I want to drive!", "Chandler, you idiot!", "Shut up! I'm trying to talk on the phone." and "My mommy will get me one." (not sure just what it is she will get him, he did not recall upon waking).
The latest (8/13, 7:00 a.m. Eastern): Dylan had Occupational Therapy at the hospital yesterday, and goes in today for another blood test that should tell us if we begin treatment on Tuesday. Will post results as soon as we get them ourselves.
We are starting so late that it may cut into the beginning of school (9/9), although they may not give him all the treatments if they prove too toxic as they test him along the way. We aren't sure what to do about Chandler and school -- I may return with him, or he may go back with friends and live with them until we return. We will probably just cross that bridge when we get to it and not fret too much now.
Dylan and Chandler have both become stars at the hospital, especially in the playroom where they are Rock Band heroes. The playroom is huge and has all platforms of video games. Dylan said this morning, "That is the BEST hospital in the world, because they have an awesome playroom!" He is already quite the gamer. The boys have also discovered a wonderful toy store next door to our building. There is also an arcade in there where they have spent a lot of time lately. They have also been reading a lot of books (Chandler read the whole Judy Bloom Fudge series and now is reading Inkheart, Dylan is into Laura Numeroff's books, Jana is reading the two books that inspired Julie and Julia).
After they're done at the hospital, they will go to the Hamptons for an extended weekend with my parents. I'll join them after work tomorrow.
The latest (8/12, 7:00 a.m. Eastern): After a day off from the hospital relaxing, Jana and the boys joined me after work for the Yankees/Toronto game last night.
My sister arranged for a car service to take us and bring us home. The driver was the sweetest man, a father himself, and wrote my sister the nicest email about us after the game about the love we show each other, how smart Dylan is, and how he feels for us and what we're going through. The tickets (in the "Legends" section) just four rows back from the Yankees dugout and just off first base, were donated by a friend and her husband.
On the way in we grabbed some free Skittles for the boys. We got there just in time for the national anthem and it all went uphill from there. We ordered food at our seats (also free!): nachos, a hot dog and fries, a lobster roll, a veggie wrap, a fruit bowl, sushi and fried zucchini with gorgonzola, and ice cream sandwiches for dessert, plus Gatorade to drink.
The Yanks took a quick lead, but lost it after a few innings and for most of the middle of the game. During this time, they brought Dylan a cater-made booster seat, and brought us four game balls and two Yankees ballcaps for the boys.
The Yanks hit two home runs in a row in the 8th to seal the game, and a cameraman came over soon after to put the boys up on the JumboTron in close up! Dylan asked me, “Daddy am I famous now?” I said yes. He said, “You mean like Hannah Montana is?” I said almost!
We left just before the game ended to beat the rush, and got home in just minutes, thanks to the car service, tucking the boys in around 10, not much later than usual. Thanks to everyone that made tonight a night to remember for the rest of our lives!
Photos from the game are here, pages 3 and 4 of our New York album:
The latest (8/11, 6:00 a.m. Eastern): Good news/bad news: we finally heard from the hospital late last night to say that Dylan's high liver counts are dropping, which is good, but not enough to start treatment today. Platelets were a little low but now low enough to need an infusion. We will hear from the doctor today about when they want us to come in for another blood test. As Tom Petty sang, the waiting is the hardest part.
On the far brighter side, we all are going to the Yankees game tonight, courtesy of a friend of my sister's and her husband, who got his company to provide us four tickets in the "Legends" section, just behind the Yankees dugout and right at first base. Maybe Dylan or Chandler will even get a foul ball, or one tossed to the crowd by a player. Pics coming soon....
The latest (8/10, 7:00 a.m. Eastern): Jana and the boys went to the Hamptons Thursday night, since treatment was delayed for Dylan's blood counts to correct themselves. I joined them Friday evening, taking the "Cannonball Express" train instead of the bus. I had a ticket for the train, but wanted to get on the reserved seating train which has more room. I was on the online wait list and, when I was nice to the reserved-seating girl, she gave me her own seat, plus her reserve ticket (an $18 additional fee, on top of the train ticket itself), because I was carrying my MySpace laptop bag, and she told me, "I love MySpace!" A couple of yuppie guys in line, clearly Wall Street wannabes, gawked at me in disbelief. Funnily enough, they sat across the aisle from me on the train, leering at me over their Heinekens, like Cinderella's step-sisters with their too-fat-for-the-slippers feet.
We spent the weekend playing Madlibs, Cadoo (kids' version of Cranium) and cards, doing puzzles, reading out summer books, playing with Brewster (my parents' dog), eating great food and just chillaxin'.
Our part of the Hamptons is very natural. The boys have seen turkeys, deer, bunnies and fed bread to a family of swans that came up to the dock, pictures here:
I came back to the city last night on the cockeyed caravan the midnight Jitney, while the rest of the family return to the city today, so Dylan can have his blood tested again and hopefully start treatment tomorrow. More details to come....
The latest (8/7, 6:00 a.m. Eastern): Dylan got blood tests again and the liver count wasn't any different, so they said to come back Monday and try again. So the soonest treatment will start now is Tuesday. Platelets hadn't changed either, but right now it's the liver issue that's giving us the red light.
So he, Chandler and Jana went out to the Hamptons and I'm going to join them after work tomorrow and we'll all come back together on Monday, at least that's the plan. Stay tuned for more Hamptons stories and photos, and keep us in your thoughts and prayers so we can finally get going on this treatment. We have been here two weeks now, as of last night, can't wait much longer....
The latest (8/6, 7:00 a.m. Eastern): Dylan (and Jana and Chandler) started out yesterday with the day off from the hospital, so they decided to go to Dylan's Candy Bar (partly because of the name and partly because it's world famous). Jana got sour cherry balls; Chandler got Nerds, Chocolate and a Sour Sprayable Lolipop; Dylan got Laffy Taffy, M&Ms, Hershey's Kisses and Reese's Peanut Butter Cups! When Jana allowed the boys to get all that candy, Chandler said, "are you SURE you're my mom?" :) They walked there and back, to burn off a fraction of the calories consumed. Apparently the candy is very expensive there; the bill was almost $50! Here's their website:
They were going to go to the zoo in the afternoon, but unfortunately, as they were getting ready, they got a call from the hospital that Dylan's liver enzymes (bilirubin) were elevated, and that he needed to come back in for another blood test. So they walked to the hospital, after the long walk to and from the candy store. The albumen count was relatively the same yesterday, so we're not starting the treatment today. We may find out when we can begin, or may just need to wait for that number to drop. He has had this before, but it never interfered with radiation treatment, but this kind of injection is prevented by the elevated numbers, unfortunately.
His platelets were also low the day before, but close to the cutoff (they were at 42, need to be at 50), and rose up but only to 48 yesterday, so please keep your appointment if you're donating. He may well need yours! To schedule a donation, in New York only, go to this page and follow the directions.
When I say they walked, I mean Jana and Chandler (who is being such a trooper about all the walking). Dylan rides in a stroller, which must be humiliating for him since he is now 7 and hasn't needed to ride in one for years. He just doesn't have the energy after the radiation to walk more than a few blocks.
The latest (8/5, 5:00 a.m. Eastern): Dylan had Occupational and Physical therapy yesterday and also got his blood tested. We'll get the results, including his platelet count, today. He begins treatment tomorrow, a light dose of the antibody to see how he takes it. Hoping for minimal side effects.
Chandler was a hit at the hospital's talent show yesterday, singing the Beatles' "Let It Be" and getting a standing ovation when it was over!
We also got the great news yesterday that our insurance will cover the treatment; it was touch and go there for a while, but they have a new program for cancer cases and put a former oncology nurse on our case as one of the first to try the new program. She was able to push it through, explaining why we need this therapy and how it will help others in the future. What a relief!
Today is a day off and the boys plan to go to the zoo and do other fun things around the city with my sister. Pics, hopefully, to come soon....
The latest (8/4, 8:00 a.m. Eastern): Jana and the boys came back last night from the Hamptons. My mom and Chandler had a funny story where they saw a family of swans while out in the boat. They ran back to the house for bread to feed them and came back. But the older swan puffed up and chased them back to the boat! It was scary, but they laughed about it afterward. The killer swan!
Dylan has a blood draw today and Physical Therapy/Occupational Therapy appointments. Chandler is in a talent show at the hospital pediatric wing -- he's singing the Beatles "Let It Be." I know he'll rock the house! They have tomorrow off and then treatment begins Thursday. No musicals booked yet for this week. I'm looking into the twofer, TKTS method....
The latest (8/3, 7:00 a.m. Eastern): Another relaxing day in the Hamptons yesterday: some of us took a walk along a path to the beach, went to the bookstore to pick up some summer reading, went out for dinner at a great restaurant (Tutto Il Giorno in Sag Harbor). I returned alone on the bus (Hampton Jitney) to return to work. Jana and the boys decided to stay an extra day, since they don't have a hospital appointment until tomorrow.
The latest (8/2, 9:00 a.m. Eastern): After a 3-hour drive to the Hamptons (usually takes 2.5, but traffic was hellacious), we met up with my parents and spent the rest of the day on the boat, cooking dinner, playing cards and consuming great quantities of food and drink.
The boys are so happy, you can hear it in their voices and see it in their eyes. We're building great memories for them both and making so much more out of this trip than just treatment for a life-threatening disease.
I think this will help us beat this thing as much as the medicine (not to mention your prayers, thoughts, vibes, from near and far, please keep it up, everyone!). Photos from yesterday are here (page 2 and 3):
The latest (8/1, 8:00 a.m. Eastern): After a long day of ups and downs at the hospital yesterday, I heard from the doctor with good news: Dylan completed the CSF flow study and, while the flow was slow the day before, yesterday he passed with flying colors! It took a long time to get results and the good news, which stressed poor Jana out.
She also learned the actual treatment wouldn't start until Thursday, pushing our trip and plans back a full week, but after speaking with the doctor, it appears we'll either be done on September 3 (and return to L.A. on the 5th, still in time to get back for the start of school), or may be completing treatment a week earlier and stick to our travel plan as-is. We'll know for sure around the middle of August. He will need to be on medication to shut down his thyroid, on steroids to reduce inflammation, and pain and anti-nausea medicaiton.
They'll also not have the entire week-long regmien of therapy that we thought was necessary. Only one or two days per week will consist of more than a couple of hours in the hospital.
The last bit of good news is that the information I posted about steroids side effects yesterday is not going to be as bad as we had thought. Dylan will not get the bloated appearance and irritability we were thinking, since the amount he is getting is very small, so that is also very good news.
The treatment schedule and medications are outlined on this page, in the Antibody section:
We head out to the Hamptons today to meet up with my parents and see the house they rented, and relax. Many pictures to come!
The latest (7/31, 8:00 a.m. Eastern): Dylan continued the CSF flow study yesterday and needs one more check-in today; the doctors were a little concerned about how things are flowing in there, but feel like treatment is pretty certain to begin Monday. We'll know for sure by the end of the day.
I caught Jana on the phone at the hospital as she met with the doctor. The MRI results were good "treated disease" is what she said showed up, nothing new and nothing spread, so that's all good to hear. During the treatment, Dylan will need to be on steroids to reduce the swelling in his brain, because his CSF fluid is leaving his ventricles. This will increase his appetite and also make him swell up. A lot of activity will help reduce the swelling but he is so tired from the radiation he had, we don't know if we can get him to be active enough. Another medication will shut off his thyroid temporarily, but we don't expect serious problems from that. He will also need to be on a half-dozen other medications for management of the nausea and pain side effects.
As a family, including my sister, who lives here, and her boyfriend, met me for dinner near my office. On the way here in the taxi, they saw a car explode and burn up in Central Park. Welcome to New York! We went to Ellen's Stardust Diner for dinner, where the servers sing for the crowd. The waitress let Chandler sing a few bars from Wicked ("The Wizard and I") and the applause for him was deafening!
After that, I went with Chandler to Wicked (his seventh time to see it! but his first time in NY). We sat fifth row center (!) thanks to a friend and some of Chandler's classmatest parent's (so grateful). He loved it and laughed harder than I have ever heard him. We went backstage after the show and saw the wigs, masks, costumes, props, orchestra pit, stage machinery and even got to go on stage. Chandler was on cloud nine (in other words, he was defying gravity!). While tucking him in (after midnight!), he told me, "Daddy, people care about me, too!" Often times people forget that Chandler is just a little boy who is also going through a very tough time. Here are a few photos from the evening:
The latest (7/30, 7:00 a.m. Eastern): Dylan began the CSF flow study yesterday and should complete it today (although they may need an extra day to check it, sometimes they need a 48 hour snapshot). We have gotten a lot of calls to Sloan Kettering for platelet donors.
Thank you everyone who has signed up. We will continue to keep you posted about our needs. Even if Dylan does not use your particular donation because of circumstances beyond our control, they will be used by someone who really does need them. We have found that a large part of this experience has been to raise awareness about blood and platelet shortages and to encourage people to make it a regular habit to donate. See Dylan's donations page, at bottom, for Los Angeles donation information.
We are still waiting for MRI results. Hope to have those tomorrow.
The four of us went to the Lion King musical tonight, with house seats reserved, courtesy of a good friend back in Los Angeles. The boys absolutely loved it as did the grown ups. Lots of laughter from Chandler who got all the jokes and Dylan was enthralled with the animal marionettes. I wish I had recorded all the cute and funny things he said to me during the show. Priceless. Thanks, Nancy!
Tonight I go with Chandler to Wicked, also house seats, and also courtesy of friends back home. Thanks to Marcia for arranging and everyone that pitched in; and thanks to my sister for getting us back stage passes after the show!
Dylan will spend the evening with my sister and Jana gets the night off to do whatever she wants to do.
The latest (7/29, 6:00 a.m. Eastern): Two years ago Dylan had brain surgery, which resulted in a stroke that ended the life of his "old self." He is still an amazing little kid with lots of fight and spirit, but I often wonder what he would have been like without those setbacks.
Dylan could not begin the CSF flow study because his platelets were very low (they have been in the 50s lately, which is the cutoff, according to our head oncologist here, but yesterday they were only 38!).
We need everyone that is able and eligible in the New York city area to donate platelets at Sloan Kettering. See Dylan's donations page for information:
http://dylan.ericdavid.info/Home/treatment-chemo--rehab/donating-blood-and-platelets or just call the donor center director Joe Licata @ 212-639-8177.
Note that, unlike donating blood, donating platelets takes 2+1/2 hours, a much more serious commitment. Also, platelets expire after just a few days (whereas blood can be stored for about a month), but you can also donate platelets more frequently than blood, so we try to stagger the donations out across the time of need and ask people to return as often as possible to donate them. Still no MRI results, but we're not expecting much change from the one a couple of weeks ago. There is a meeting scheduled with another oncologist tomorrow, but the delayed CSF flow study may conflict with that.
On the lighter side, Chandler wowed the playroom crowd with karaoke versions of my favorite rock band, the Beatles' "Let It Be" and "Help," but didn't belt it out because Dylan was napping in the room. He will probably give them a full-blast "Twist and Shout" next time!
The four of us are going to the Lion King musical tonight, with house seats reserved, courtesy of a good friend back in Los Angeles. Thanks, Nancy!
The latest (7/28, 6:00 a.m. Eastern): Today marks the two year anniversary of our discovery of Dylan's cancer. His first MRI was July 28, 2007.
We should get Dylan's latest MRI results today from the scans done yesterday. We're hoping they show continued shrinking of the tumors in his spine.
Dylan hopefully begins his "CSF Flow Study" today to ensure he is a good candidate for the therapy (I mistakenly posted that it began yesterday). We'll have results from that tomorrow or possibly the day after. Keep us close to heart as we await results on the MRI later today and on the flow study hopefully tomorrow.
He has to go in earlier than planned to get another blood test. His platelets were a little low yesterday and we are hoping they rose overnight to an acceptable level. If they are too low, they can't begin the treatment; it is too dangerous. We aren't sure if we should put out calls for platelets yet. Keep an eye on this page for updates.
We recently connected with the Lance Armstong Foundation, and I created an "inspiration" story page, link below, and am asking everyone to add your name, like a petition. It will help world leaders change their minds about supporting cancer research, which will soon be the leading worldwide cause of death globally:
The latest (7/27, 6:00 a.m. Eastern): The whole family was tired from Saturday's epic trek, so yesterday I walked over (just a few blocks) to the Metropolitan Museum of Art by myself to see some of their masterpieces. I thoroughly enjoyed the Greco-Roman statues, and the Impressionist and Modern works of art. The armor, swords and guns were also of interest. The Van Gogh rooms proved to be the most crowded, so I took my time there to make sure I saw them all and read all the placards.
After Dylan awoke from a long afternoon nap, we went to Hi Life on 2nd Ave for dinner. We got there just before a HUGE downpour hit and we watched people running in the rain as we waited for it to pass (thank God I had the weather channel radar on my blackberry to time our return home). Dylan and Chandler were a little started by the lightning and thunder, but got used to it pretty fast. Read my review of that and other restaurants in NY and LA here:
If you missed my weekend posts, you can read my Archived Updates on Dylan's site (link below):
Plus, here are pictures from the weekend:
Dylan gets another MRI today (required by the Sloan Kettering protocal; the one we just had at UCLA was not within 3 weeks of starting the therapy here). We are hoping it shows continued reduction of tumor size. Keep us close to heart as we await results on the MRI later today or tomorrow.
I am working from the Newscorp building here for the rest of our trip. My sister lives here and will help out with the kids, as will some of her friends, as well as my parents, who come in Saturday (renting out in the Hamptons), so they should be just fine without me.
The latest (7/26, 9:00 a.m. Eastern): We woke this morning and walked through Central Park on our way towards Times Square. The park was thriving with people running, biking, skating, picnicing, bird watching and just existing.
We ended up a little lost, but came out at Columbus Circle and proceeded down Broadway, enjoying the streets, window shopping and, finally, the lights and displays of Times Square.
First we went to Carmine's for a HUGE meal of Caesar salad, Spiedini and Manicotti, then dragged our heavy bods over to the Hard Rock to see some of the displays and get myself a new T-shirt. Then we went on to Madame Tussaud's Wax Museum. Highlight of the day for Dylan (who wanted to go home the whole day) was the 4D Spongebob where the seats moved, poked you in the back, blew air on you, blew bubbles and even smelled like pickles!
Jana and Dylan went home while Chandler and I continued to the Ripley's Believe It or Not Museum to see all the amazing and freakish people and artifacts of the world. We stopped by the Gershwin Theater, where Chandler's favorite play Wicked is playing, and by the Newscorp building where my office will be while I'm here for the next five weeks. Then we went to Top of the Rock to view the city from above, though both of us being afraid of heights, we split asap and went to Mars 2112 for dinner, where you ride a "spaceship" simulation to Mars and eat among Martian beings (thought their Happy Birthday song they sing to celebrants is still the same one as ours here on Earth). We walked home from that area and got home just as it got dark, stopping to look over Central Park's wall to watch the fireflies light up, but there were too many to count.
I uploaded a few MORE pictures to my myspace album I've created for our best New York pics:
The latest (7/25, 9:00 a.m. Eastern): We woke late for New York time (still on Pacific time in our body clocks), and were all moving slowly from our late arrival last night. Actually, Chandler got up at 6 a.m. to tell us that something was wrong, because someone kept honking outside in the street. We told him that people honk a lot in New York and that he's just going to hear a lot of car horns and maybe sirens. A siren wailed just then, and so he nodded groggily, and went back to sleep.
We walked to the hospital, which is a mile away (pushing Dylan in the stroller), for a noon appointment. Walking the streets is fun, there's a lot of energy and it's not too hot (yet?). We also mostly avoided the rain that threatened to fall all day, glad of this, having forgotten our umbrellas.
At Sloan Kettering, we filled out forms for half an hour, visited their AWESOME playroom, bumped into an old friend from Children's Hospital who is here with his daughter, also suffering a relapse and getting a similar therapy, and met with one of the main pediatric oncology doctors. We filled in the doctor on the history of Dylan's case (he remarked on how harsh are the therapies Dylan has been on, how he cannot begin to comprehend how nervous we are as parents (he's single with no children), and how much he's going to try to help us get started quickly) and learned more about the therapy that's to come:
We can expect little to no side effects other than some nausea, vomiting and diarrhea. That sounds bad, but we have seen far worse, and can manage these with medications. Next week we scheduled another MRI (the one in Los Angeles that I was feverishly rescheduling and was told could not be done here because of inter-state laws turned out to be relatively unnecessary), a "CSF Flow Study" test (that will determine if we go forward with the treatment), and meet with another key doctor on the staff. Then the therapy will begin the following week, the first week of August. That week will be intensive, all day every day, but then, after that, if all goes well, we got the good news that he only goes in for one day per week for the last three weeks of treatment. At the end of the visit, Dylan got blood drawn and an Xray of his chest, basic rudimentary procedures. Dylan slept through most of the day, but poor Chandler had to suffer through all the medical terminology and waiting. They're both troopers.
We stopped along the way home for some world famous New York pizza. I uploaded a few pictures to my myspace album I've created for our best New York pics:
The latest (7/24, 9:00 a.m. Eastern time!): We left for the airport at noon yesterday, but our flight was delayed for two hours because of storms in New York. We flew Virgin America, which has many amenities that make flying a lot easier, free television being the most applicable to the boys. I sat with them and let Jana sit behind us undisturbed.
We arrived after midnight. Our friend's parents, who are letting us use their apartment, sent a driver to pick us up. It was such a relief to have a personal welcome and a brief tour of the surroundings as we came in, instead of a cabbie that doesn't speak our language. The apartment (on Madison Avenue!) is large, and will feel like home for our long stay through the end of August.
My sister, who lives here, and her bf, were also waiting at the apartment to welcome us and help us get settled. The boys were tired, but energized by the city lights, town car, the nice apartment, and seeing Aunt Annie and Nico.
We meet with the doctors today to learn more about the treatment. More on that tomorrow. The rest of the day is unpacking and getting to know this part of the city. If we can make it here, we'll make it anywhere!
The latest (7/23, 7:00 a.m.): We leave this afternoon for New York for treatment for Dylan. Very exciting! I'll keep updating this area during the trip (bookmark this page, if you haven't already) and will try to upload videos and photos frequently as well.
I changed my MySpace profile and playlist for the journey:
The latest (7/22, 7:00 a.m.): Dylan went by Cedars for a checkup yesterday and the doctor said he is doing fine. He and Chandler and Jana came by work since it's so close, but couldn't come up since they had a playdate to get to. We sat out in the grass in front of the building and ate strawberries and pineapple from the cafe. His hair is starting to grow back. Yay! (Chandler gets his cut today for the summer).
We leave for New York tomorrow for the antibody treatment. We'll be gone for six weeks. I'll keep updating while we're gone, so you can follow our Big Apple Advetnure. More information about the antibody treatment is on this page: History & Treatment
The latest (7/21, 6:00 a.m.): Dylan got his blood tested yesterday and did NOT need blood or platelets. He's making the stuff all on his own.
He and Chandler had a six-hour playdate with a couple of their favorite friends, cooking (and then cleaning up, yay!), playing on the Wii, battling with Nerf darts, and dressing up in costumes. So great to see them both living a normal life, and that Dylan has the energy to play again.
Today Dylan has a follow-up visit at Cedars, post-op to check on his head. They plan to come by work afterwards. It's so fun to see them there.
The latest (7/20, 6:00 a.m.): Dylan came home from his one-night stay in the hospital on Friday (surgery was to change the valve in his head to one that will allow the antibody injections for therapy in New York). He is doing alright, although he has been sleeping late -- until 1 pm (!) on Saturday and until 11:30 a.m. Sunday, with normal bedtimes the nights before.
He and mom rode their bikes down to Cold Stone Creamery Saturday afternoon for ice cream in the sweltering heat, and then met up with Chandler at the beach (Chandler had a sleepover at his best buddy's house Friday night).
Sunday we cleaned house to have a nice place when we come back from New York in 6 weeks (we leave Thursday), and then made M&M cookies as a reward. In the afternoon, we went to a birthday party where an air-conditioned truck was pulled up in front of the house with four huge flat screens hooked up to Wiis so the kids could play non-stop video games. Dylan was in heaven. Chandler played with the older kids in the back yard, not being much of a gamer. Most of the older kids were pretty California girls, so he was just fine, thank you very much. ;)
Dylan goes in today for a blood draw at UCLA and tomorrow for a follow-up to his surgery at Cedars and hopefully get his bandage removed. Picture of it here in my July album on Myspace (no login required to view):
The latest (7/17, 7:00 a.m.): Dylan had his surgery yesterday to install the valve he needs for the NY treatment (it was a Medtronic Strata II rather than a Codman, but it's basically the same thing, different brand, link below). His platelets were low, so they gave him platelets first (thankfully they had some on hand here at Cedars, which is why we ask people to keep donating wherever you are).
They did not give him the LP (spinal tap) that our oncologist here ordered, because of the platelets being low and the risk of causing bleeding in his spine and giving him those nasty spinal headaches again. We checked with the onc in New York and he said the LP was not required, which was a relief. The doc here just wanted it to see if they could detect cancer cells floating around in there. Dylan has had 4 LPs in the past and all were negative for cancer, although he definitely had cancer, since it has come back.
Jana spent the night with him, and he should be discharged this morning. She had a bad headache last night (not a migraine, as she had feared, but more like a tension headache) but is feeling better today.
The latest (7/16, 5:00 a.m.): Dylan just left with Jana for Cedars Sinai (I'm dropping Chandler off at camp later, and then he has a playdate, so I can go in to work). He's got surgery to install a "Codman programmable valve" in place of the shunt that drains any excess CSF fluid out of his brain. They need this installed so that they can shut off the drainage while he gets the therapy and then turn it back on when they're done. He will also get a spinal tap, which we hope does not result in the painful spinal headaches Dylan has had before. I'll go visit them later in the day to see how they're doing. He'll have to spend the night there tonight and come home tomorrow. Need everyone's spiritual energy to ensure everything goes smoothly. Thanks.
In case you missed it, we got great news yesterday that we are approved to go to New York for the experimental treatment! We fly out next Thursday (the 23rd) and are there through the end of August, getting treatment at Sloan Kettering. More info on the treatment at this URL, at the bottom of the "Relapse" section:
I'm currently working with insurance to get the treatment pre-approved, which they're denying because of the experimental nature. Yet this is the only treatment available for Leptomeningeal Disease, which is the particular type of cancer Dylan has this time.
The latest (7/15, 1:00 p.m.): We just heard that we are approved to go to New York for the experimental treatment! We are so happy. This will hopefully eradicate the tumors and any cancer that's left in Dylan's system.
He's got surgery scehduled for tomorrow here at Cedars to install a "Codman programmable valve" in place of the shunt that drains any excess CSF fluid out of his brain. They need this installed so that they can shut off the drainage while he gets the therapy and then turn it back on when they're done. He will also get a spinal tap, which we hope does not result in the painful spinal headaches Dylan has had before.
We fly out next Thursday (the 23rd); we have a place to stay for free donated by a friend's parents (thanks again, Russ!) and lots of great tips on where to go and what to do with kids in the Big Apple.
The latest (7/14, 6:00 a.m.): Dylan had his blood checked yesterday and he needed neither blood nor platelets. We are so glad he's on the mend!
We hope to hear from the New York doctor tomorrow. Also want to find out more about what the day to day treatments are like and how much free time mom and the boys will have to explore the city.
The latest (7/13, 7:00 a.m.): We had a great weekend together, appreciating the little things that make family life great: meals together, swimming in the pool, even watching TV.
We also watched a lot of home movies from when the kids were young, before cancer hit Dylan. Chandler said he wished he could be carefree like that again. It was so sad to hear, but good to know he feels he can say something like that to us. Not sure how Dylan felt about it. In his imagery for kids therapy, he has been playing a lot with a small skeleton figure. When the therapist asked how old the skeleton is, Dylan said "4." He had just turned 5 when he was diagnosed, so he is mourning the child that he once was.
We still haven't heard for sure about the trip to New York and if it's a go. The doctor there is out of the country until Wednesday and we're scheduled for surgery on Thursday (Dylan needs a new device inserted in his head to get the injections for the experimental antibody treatment). We sent last week's MRI to our doctor here at Children's Hospital and he feels Dylan would qualify for the treatment, so we're hoping the New York doctor concurs and we can move forward with our plans.
The latest (7/8, 4:00 p.m.): Dylan is HOME! We are so glad to have him home with us and be done with the hospital stays. Dylan scarfed down a bunch of cookies, quesadilla and pie when he woke up, but then had his yucky medicine Flagyl which he now has to take because of the bacteria that they identified, and chased it with a pint of grape juice, so he threw up everything when he got home. I think his empty stomach rebelled at all the sugar. :(
We also got preliminary MRI results. One tumor that was 3.5 mm is now around 2 mm, another that was 2.5 mm is now around 1 mm in size. We aren't sure what this means for New York and also aren't sure that if they would be even smaller if we had kept the original MRI date of next Thursday, since the radiation keeps working even after the treatments have stopped. The treatment in NY is to eradicate any cells floating around in there, but, as the NY doc said, if there are significant tumors, the treatment would be ineffective. We just aren't sure what "significant" means.
We drove home along Sunset Blvd. to see the brush fires by the Getty Museum, and saw at least six fire trucks heading up the hill. Hope the masterpieces are OK.
The infection Dylan has is called Bacteroides. More info here:
http://en.wikipedia.org/wiki/Bacteroides Luckily, Dylan can take the Flagyl in a pill form instead of the nasty tasting liquid.
The surgeon who is going to insert some hardware in his head for the New York treatment was concerned about the infection. While we haven't gotten clearance yet, we're hoping he goes ahead with the surgery (next Thursday at Cedars) so we can keep our dates for the NY treatment (if that is still on).
So we still need plenty of prayer, thoughts, vibes, etc. Please keep 'em coming!
The latest (7/8, 6:00 a.m.): Dylan is getting an MRI today and after that's done, we'll get it read by a doctor and then take him home. We're hoping for a clean scan. If it's clean, then we'll go to New York for the experimental antibody treatment (that will get any remaining cells eliminated), if it's not, New York may be off and we aren't sure what would come next or how well we will handle the news.
They identified the bacteria that Dylan has and the medicine he has to take for it is the hated Flagyl, which tastes like castor oil turned sour. Dylan thinks its the worst liquid invented by man, and it cannot be taken by pill or intravenously, it has to be a syrup. If he chases it with grape juice that helps get and keep it down, but we're all a little bummed that we're back in the flagyl saddle again. I had to wake him up at midnight last night to take his dose. :(
This has been a week of disappointments and setbacks. Let's hope today is a brighter day. They'll be taking him down for the MRI at 8:30 a.m. We hope to have results by noon.
The latest (7/7, 7:00 a.m.): They kept Dylan in for two more nights so they could identify the gram-negative bacteria more specifically, and prescribe the right antibiotic for us to give him at home. He'll come home tomorrow. We're all bummed about it, Dylan even cried when I told him, but there is a silver lining: they're also going to give him an MRI tomorrow (Wed) which we previously had scheduled for the 16th. This will tell us if the radiation has worked and if his tumors have shrunk or not, and will also tell us if the trip to New York is on or off.
We previously had a conflict with the MRI and the surgery that will be necessary for the New York trip, which was going to cause us to delay that trip by a full week (and pay a lot of fees), so we're ecstatic at this turn of events. If the MRI comes back with problems or questionable, we're just back to doing it on the 16th a second time to see if things have cleared up in the interim, and we'll delay the trip, (which is where we stand right now anyway). Tune in tomorrow afternoon for the MRI results (and please pray hard, think healthy thoughts, send clean vibes, etc.).
In other good news, we have been worried about Dylan's balance and gait, as it seems to have grown much worse lately. This was one of the first symptoms of his tumor 2 years ago, and has made Jana and me really nervous that something is growing. The doctor told me yesterday that edema in the brain around that area is a normal cumulative side effect of the radiation he got, and that this is likely what is causing the balance problems, not tumors. The MRI will confirm this, and we should see his balance improve steadily as the effects continue to wear off now that he's done with radiation.
The last bit of good news is that Dylan did not end up getting platelets after all, because he was to make enough himself and bring the levels up. We'll know more on Thursday when he gets checked again, so don't cancel those appointments just yet, but we're really hoping all the calls for donations will soon be a thing of the past.
The latest (7/6, 7:00 a.m.): Dylan is still in the hospital this morning, but we're expecting to bring him home today and treat him ourselves there. Jana has learned how to inject the antibiotics he needs intravenously and that's all we're doing in the hospital. We just had to wait for the weekend to be over to get the home health company to bring over the Rx drugs.
Jana, Chandler and Jana's friend Jamie spent time with Dylan during the day yesterday playing hot potato, telephone and tag out in front of the hospital while Dylan was off the IV for a few hours. I went home and took a nap to try to catch up on the sleep deprivation that I suffer sleeping at the hospital. I slept at the hospital again last night and had to take a half day off work today to recuperate and, hopefully, help bring Dylan home.
The latest (7/5, 7:00 a.m.): We had to bring Dylan in to the hospital yesterday: the blood they took Thursday showed he had a "gram-negative" bacterial infection, which can be quite dangerous (see link below). We started out in the emergency room where they took more blood and started him on wide-spectrum antibiotics. We could treat him at home, but the company that brings antibiotics to the house is off on weekends and holidays.
They admitted him to the nicest and largest room on the oncology floor, with a great view of Westwood Boulevard, which was eerily empty because of the holiday (just a week ago, it was in gridlock because of Michael Jackson's passing). I thought they were going to give him platelets, but they held off since his blood counts had risen since Thursday. They may give them to him today after his blood labs come back from this morning's blood draw.
It's possible he doesn't even have the bacteria, and that it was a contamination of the line when they took his blood (he has very few symtpoms). They did a chest X-ray to confirm, but it showed nothing is growing in his chest, so we need to confirm whether or not it's in his urinary tract instead. He fell asleep before I could get a pure urine sample, bu the night nurse got a sample.
The blood they took yesterday will also be a good check of if the bacteria is in his body or a contamination of the line, though. He has been running a low-grade fever all week, so something is going on and as much as we're bummed to miss out on the fireworks, it's better to be safe than sorry in this case.
Jamie, Jana's friend since childhood, came into town from Nashville to help out. We had thought she would simply be celebrating Independence Day with us at home, but instead played cards with all of us at the hospital for a while (we let her win at UNO, just to be polite), before going home with Jana and Chandler to watch the Brentwood Country Club fireworks over the fence. Jamie recorded the fireworks on her phone and showed them to Dylan the next day, so he didn't feel like he totally missed out.
I slept with Dylan at the hospital. He fell asleep around 7 p.m., probably worn out from the activity, although his appetite has been voracious, which is a good sign that he's going to be OK. He slept through the fireworks, though. :(
The latest (7/3, 7:00 a.m.): Although Dylan had a low-grade fever off and on during the week, we did not have to take him in to the emergency room. I even stayed up most of the night Wednesday taking his temperature every hour or so. He had his blood tested yesterday and was a little low on platelets. Our donations were off a bit, so the latest donations won't be ready until Monday, when he will get them. We're not totally out of the woods yet, but are really hoping we're done with the need for donations. Please keep it up for another week. Stay tuned to this blog for updates on his needs.
We're looking forward to the 4th of July, our first here in Los Angeles. Jana has a friend coming to town tomorrow, so we'll take her to see one of the better shows, and also use her services to go on some date nights. Jana and I really want to see My Sister's Keeper and I really want to show Jana how much her tireless efforts for our kids are appreciated. :)
I'm off work today and, after last month, really needed a long break from the rollercoaster, though I'm probably going to spend a part of the day trying to work out scheduling MRIs and minor surgeries for Dylan, coordinating between 4 hospitals. We're gearing up for our trip to New York in a few weeks. Big Apple or bust!
The latest (6/26, 6:00 a.m.): While Dylan was getting both blood and platelets yesterday, their nurse told them to look out the window: Michael Jackson was being brought in to the UCLA hospital and they both could see the news crews and ambulance arriving. Luckily they parked in a lot on the side of the hospital and were able to avoid the media circus and get the boys to their afternoon camp on time. We will need donations for the next couple of weeks. Thank you to everyone who has donated or will. Truly the gift of life. To donate click here:
The latest (6/25, 6:00 a.m.): Dylan had to go in yesterday to get prepped for both blood and platelets that he is getting today. We hope this is the last infusion he will need, but he will get tested again tomorrow and next week.
The boys are settling in to their summers otherwise.
The latest (6/24, 6:00 a.m.): Dylan completed radiation yesterday. They even gave him a diploma! Pic here:
A few of the nurses and doctors told Jana how refreshing it was to have a mom who had a great attitude and sense of humor, and what a gem Dylan was (you have caught a glimpse of that with my updates and some of his quips).
He will still need to go in for blood tests, as the radiation continues to work for a few more weeks even though the treatments are done. But his counts should rise consistently now and he should be back to normal in a week or two. The doctors have said that certain symptoms would have started to show if the tumors were growing in his spine, so we're grateful for that. The tough part now is waiting for July 16 when we have the next MRI.
We also received our last meal delivery yesterday. Thanks to all who brought us meals, which took that worry off Jana's mind and helped us keep costs down as well. We're glad to get back to normal for a month before we go to New York.
If you're in New York or have lived there, we'd love advice for what to do with kids in the city. Dylan is pretty active and likes parks; Chandler loves Broadway shows. Thanks!
The latest (6/23, 6:00 a.m.): Dylan got radiation yesterday but also needed platelets. Los Angeles residents, please keep donating. He will continue to go in for blood tests, but no more radiation after today -- so I'll be posting less frequently until the MRI on July 16 and then more when we are in New York (late July through end of Aug). Watch my online status for updates.
The latest (6/22, 6:00 a.m.): I had a great weekend and Father's Day with the family. Dylan had lots of energy for the park and the pool after graduation on Friday (Click here to watch the video.)
Chandler starts TWO camps today, one which is a really expen$ive one that we got a scholarship to for siblings of kids like Dylan, the other is at our church. He has attended the latter every year and is really looking forward to it. He was a little scared about the new one, but will do just fine. Tomorrow is Dylan's last day of radiation, and so after that I'll be posting less frequently. Watch the date on here or my online status for updates. He has an MRI on July 16 and we've already booked our trip to New York from July 23 through August 31 for cutting-edge antibody treatment at Sloan Kettering.
The latest (6/19, 6:00 a.m.): After radiation yesterday, and a blood infusion, Dylan joined his class on their field trip to the Science Museum. He was able to see the 3D movie there jump out at him, which means his eyes are getting back to normal. His last radiation session is Tuesday.
Today is his kindergarten graduation and both boys' last day of school. They're going to the beach after school is out. They are so excited! Dylan goes in for radiation early, then straight to the auditorium to sing with his classmates.
We're probably going to have a beach day for Father's Day. Not sure what else the weekend holds for us. We have a few options. Tune in Monday to find out!
The latest (6/18, 6:00 a.m.): Dylan got radiation again yesterday, so we have 4 more sessions (Tuesday is the last planned day). He even went to school afterwards since he was re-enrolled, and his teacher said he knows the songs and the hand moves for his graduation ceremony as well as the kids that were there all year. I'll get video of the ceremony tomorrow and upload it asap.
He joins his classmates today after the hospital on a field trip to the Science Center downtown. They'll watch a 3D movie about sea creatures. Since his eyes have been straightening out, we'll be interested to see if the 3D works for him.
Chandler and I walked to school again and will likely do so for the whole week, though we have to go in early Friday since he has a half day and Dylan's culmination begins at 8:30. Hope the other moms and dads don't mind me being a little sweaty and in shorts at the ceremony. It's important we have that one last walk together. I'm so proud of them both!
The latest (6/17, 6:00 a.m.): Thanks for your notes about Dylan not participating in the graduation ceremony. The problem has been solved: Jana had to unenroll him from his home school and re-enroll him in the school so he can participate in his culmination ceremony Friday. Sounds like it was just a simple matter of paperwork and politics.
He got radiation yesterday, his counts were high enough. If he can just make it through 5 more (I have been off by one in my recent posts; his last day is Tuesday), we will be done with this chapter.
Yesterday was a tough day at work. About a third of the workforce was let go. I was not one of them, and many people were grateful for me because of my situation with Dylan. But I was sad to see so many friends go. There's a lot of talented people out there, recruiters!
The latest (6/16, 5:00 a.m.): Got word last night that Dylan can't participate in his kindergarted graduation ceremony, I guess because he was not in class for (most of) the second half of the year, although he attended the whole first half, and has been getting schooled at home. Very, very upset about this.... UPDATE: Jana had to unenroll Dylan in our home school program and re-enroll him at school so he can be in the ceremony on Friday. Thank you all for your support and thanks to the school for working with us.
Dylan got radiation yesterday, but he also needed platelets (please keep donating Los Angeles!); he may not get treatment today, based on his blood counts. We had stopped giving him the painful G-CSF shots, but Jana will resume them this week. We only have 6 more sessions left, so we hope we can knock them out, and move on to the next phase (New York in late July and August). I noted yesterday that his schedule may change, but they're keeping it the same, so he doesn't have to stay
"NPO" (no food) all day. We are grateful for this much good news.
Chandler and I walked to school yesterday. This is his last week of school, so I'm shooting for another five-day walk week, but Mother Nature may not cooperate as rain is in the forecast.
The latest (6/15, 6:00 a.m.): Friday afternoon, I saw a play Chandler was in for an after school class. They did some improv first and then the play, about a boy waiting for the call to be on a TV trivia game, where Chandler was the main character. He had a lot of lines, including having memorized the names of all six wives of Henry VIII(!). His reward was a sleepover at his best friend's house, while Jana and I got some quality time with Dylan.
Sunday afternoon we all went to the boys' school for their annual family festival where they have food, rides and games (ring toss, coin toss, basketball hoops, magnet fishing, and, their favorite, the cake walk), as well as contests in Skittles eating, find the gum in the whipped cream, hula hoops/human pretzels and loudest burp. You pay to eat/ride/play, then get tickets to pick a prize on the way out. The money all goes to the school, so it's worth it.
Dylan is still on radiation this week, but because it has been delayed, they are changing the scheduling on us. We hope they can keep seeing him in the morning, because if it's in the afternoon, he is not able to eat all day (since they put him under) and he has finally gotten his appetite back. More on this tomorrow....
The latest (6/12, 6:00 a.m.): Dylan continued radiation yesterday. 8 more sessions to go. He even went to school after, he was feeling so well, and then to a party afterward. Hopefully this feeling will keep up since next week is the last week of school.
One drawing he did with his therapist showed our family, but with him in a bed, asleep. She said it shows he doesn't really feel a part of us, which is not unusual for a kid with so many issues. But we definitely need to work on making him feel included.
We'll all go to their school's family festival this weekend together. They have a lot of fun games to play there. I also need to spend more one-on-one time with him, since Chandler gets it every morning, although that's tough because I'm at work and he goes to sleep soon after I get home....
The latest (6/11, 6:00 a.m.): Dylan started back on radiation yesterday; his blood counts were high enough, thank heavens. We hope we can knock out the last 9 sessions as quickly as possible. He went to karate for a private lesson, for the first time in months; and also went for his first session to his "guided imagery" therapist. Her website is interesting: http://www.imageryforkids.com/ Chandler and I walked to school -- we may have our first father/son five-day walk week this week. After school yesterday, he had a fun playdate with friends that involved Twist yogurt, trampolining and making an iMovie. At night, while Jana went for a swim (she's training for a triathlon), we practiced Dylan's graduation songs: Sing a Song, I Believe I Can Fly, The World is a Rainbow, I'm Growing Up & a poem by A.A. Milne about growing up. Links to most of them are below. After that, we listened to a guided meditation tape from Dylan's new therapist. You flex, then release each body part, then tell it you love it. We all lost it during "I love you, buttocks"! Sing A Song: http://www.youtube.com/watch?v=Ab-Ne52cwKo I Believe I Can Fly (chorus only): http://www.youtube.com/watch?v=-v2YjmY_14k The World is a Rainbow: http://www.youtube.com/watch?v=IEw3owf3i-Q When I Was Six: http://www.cs.rice.edu/~ssiyer/minstrels/txt/1097.txt
The latest (6/10, 6:00 a.m.): Dylan had the day off from the hospital yesterday, so he was able to attend my 'performance' as internet ad guy at his school. I spoke to Chandler's class first, then another third grade group, and then to Dylan's class last. Here's a photo of me sporting all my swag:
The kids were very receptive and had some excellent questions. I told them about social networking in general; broke down the parts of any site (profile, blogs, status, photos, playlists, etc.), showed them my own versions, and updated my status in real time in front of them. We also talked about Facebook and Twitter,as well as some of the social networks for kids that are out there (most popular were WebKinz, Club Penguin, Poptropica and Neopets). Since I used to work at Netflix, there were also a lot of questions about that service, since most of the kids get their movies that way now. Ironically, on the way in to work, Barbara Streisand's "Children Will Listen" was on in the car: Listen to it here (song 6):
Dylan starts back on radiation, hopefully, today. I am cautiously optimistic that his counts will stay high enough to get through the last sessions without any more delays. He has his next MRI scheduled for July 16; this will tell us if the radiation has been working and if we can get the experimental antibody treatment in New York. We took him to start seeing a therapist (Chandler has been seeing one since the first bout with cancer), who specializes in kids his age, especially in imagery: using his imagination to make the cancer go away. He has been having a lot of nightmares, so we hope this will do him some good in his psyche.
The latest (6/9, 6:00 a.m.): Dylan did not start radiation yesterday as planned. His counts were too low and they delayed it until Wednesday.
Jana sat with him from 8 am until 3 pm just getting blood drawn, and then given, and then platelets given. It takes that long.
Please keep up the donations through the end of the month. His counts will likely stay low even after radiation is done. Click the link below to learn more about donating:
I'm doing Career Day at the boys' school today, representing MySpace and discussing social networking in general. Will be interested to see how much the kids already know about it.
The latest (6/8, 6:00 a.m.): Dylan is back on radiation today. He has 10 more sessions. If he has no more delays, our last day will be June 18. His kindergarten graduation ceremony is the next day, the 19th, and we would love for him to be able to attend. He is not on chemo any more, because of how it's making his blood and platelet counts drop. We're concerned about this because the chemo was supposed to make the radiation more effective.
We've noticed Dylan's eyes (which have been crossed because of a stroke he suffered during brain surgery in 2007 that gave him what's called strabismus) are improving. He even mentioned it the other day on his own, that he can see better. He had a surgery to correct this a while back and we were looking at another one, but it may not be necessary.
I went to a friend's house on Saturday for a barbeque, while Jana and the kids had a pool playdate. I came home to see our neighbors having a lemonade sale and they gave all their earnings to Dylan as a late birthday present surprise!
Sunday, we cheered Jana on in the Brentwood 5k. She finished just when she wanted to. Then we went to a birthday party at the aquarium that's underneath the Santa Monica pier. Dylan knew that starfish vomit on their food before eating them and learned that sea cucumbers eat sand and poop it out clean, so when we get to the beach, we're walking mostly on sea cucumber poop. Then after that appetite-enhancing session, we had bagels and cake. :)
Chandler went to a friend's house for trampolining and swimming in the afternoon, but Dylan was too tired. I stayed home with him and did his homework. We have to work with him a lot at home (Jana does most of it), to keep his mind sharp and fight off the negative cognitive effects of the radiation.
The cumulative effects of radiation are starting to take their toll: In addition to the low blood and platelet counts, Dylan's skin is burned where the radiation enters and he is sleeping a lot because of the lethargy from low blood counts. We can only hope this means the cancer feels just as bad as he does.
He also has a very low appetite. He's not nauseated, just not hungry. He only will eat things like ice cream, cake, and other sweets, which we give him just to get the calories into him, but this is also concerning because sugar is said to make cancer grow.
The latest (6/5, 6:00 a.m.): It was a slow news day yesterday, which in my book is awesome: no news is good news. Dylan read books to Jana for two hours in the morning, then, by the time his home schooling teacher came, he was so tired, he fell asleep on her! Then they went to the library to pick out a movie, and then up to school to play with Chandler and other kids on the school yard. Dylan picked Tom and Jerry to watch; Chandler watched The Truman Show. Neither of them are into watching sports, yet, so I followed the Lakers victorious Game 1 online. Chandler walked to school with me today in the rain, with umbrellas; so he did it every day this week. His first 5-day walk week! Dylan goes in to the hospital but only to get blood tests and meet with the new oncologist.
The latest (6/4, 6:00 a.m.): In addition to the blood and platelet donations, I wanted to thank those of you who signed up for meal deliveries. We have been having some delicious and wonderful meal times together every night. We have some dishes to return, a couple of casseroles, so please let us know if you're still waiting to get anything back.
Jana walked to school with Chandler yesterday and joined some other moms on a hike they take in the mountains regularly. It was good for her to do something normal on a weekday. I missed our quality time, but will walk with him tomorrow and Friday, plus the last two weeks of school when Dylan is back on radiation (if you missed yesterday's blog, his blood counts were so low that they took him off chemo and radiation for the rest of the week). Chandler had an awesome playdate yesterday after school with a couple of his favorite girls from school. They watched the talent show DVD which was just distributed, jumped on the trampoline, had dinner and made lunch for the next day, wondered what that liquid was falling from the sky, and he got some boxing lessons from their dad. Dylan had blood drawn yesterday instead of today, and his counts are still pretty low. He'll get more taken Friday and they'll meet with the new oncologist, Dr. Moore. Dylan said he likes "Dr. Less" better than Dr. Moore, because he wants less doctors in his life!
I took Dylan up to his STAR class yesterday morning before work, STAR is an enrichment class in addition to his regular kindergarten class, where they sang "Happy Birthday" to him, loudly, along with four other recent bday kids, and then drew a big cake on the white board which the bday kids all "ate" with erasers. Then they gave him a bag of toys to bring home and play with. He also went over to his "girlfriend's" house because it was her birthday today and had some cake. He doesn't admit that he likes her, but he was asking for days before about what present he should get her, so I think he really does care.
The latest (6/3, 6:00 a.m.): Dylan's blood counts were too low yesterday for him to get radiation, and the new oncologist decided to not give him radiation until Monday, which extends the end date now to June 19th. This can happen again, too, which makes the New York trip impossible to plan precisely until radiation is finally complete. The silver lining is that Jana and Dylan get a break from the hospital routine, and they both could use it.
They gave him blood from one of our donors yesterday. Thanks and please keep donating blood as well as platelets. He doesn't go back in until Thursday, and just to get his blood drawn for the labs.
Last night we had fun at the school's fundraiser for third grade at California Pizza Kitchen; it was sheer pandemonium. One kid even broke the escalator with a Croc shoe!
The latest (6/2, 6:00 a.m.): Yesterday morning, Dylan wanted to fly his helicopter again, the one he got stuck in a tree Sunday night. I told him to wait until we could go to the park when I got home from work, but he was adamant. Jana took him out in front while I got ready to walk Chandler to school. I went out a few minutes later and the helicopter was stuck in a tree again, this time 40 feet up! We got a pool cleaning tool out to try to reach it, but I just batted it down deeper instead. Jana later climbed the tree and got it out. She sent me a picture of victorious Dylan holding it. See my June album on MySpace:
Chandler and I hope to walk to school every day this week. We only have three weeks of school left, that's 15 walks if we do it every day. He loves walking now and doesn't even want to drive. I love talking with him, smelling the roses and jasmine that bloom along the way, calling my mom on Chandler's cell phone to tell her our latest favorite joke, and seeing people wave and cheer us on. On the way back, I listen to tunes. I'm working my way through my oldies collection, which usually has a good walking beat. This week it's Sam Cooke.
Dylan was cleaning his room (at his mom's behest) in the late afternoon, and was putting away something up high on his shelves, when he slipped, fell back and landed on a toy car, getting quite a goose egg on his head. Jana took him in to the emergency room (another pic is on that page above of the bruise) to get a CT scan and some platelets. Since his platelets are low, the risk is that he could bleed internally in his brain and it would not stop bleeding. That is why these platelet donations are so crucial. I came out to the hospital and sat with the family for a while, got Chandler to do his homework, and then brought Chan back home to sleep.
Jana called later to tell me that the CT scan was fine. They waited for his platelet level to come back up high enough, and let Dylan come home around midnight. Just another day in the life of SuperDylan and family.
The latest (6/1, 6:00 a.m.): Our weekend began Friday night with a funeral for our longest-living fish, Freddy, a Beta who died unexpectedly. We gave thanks for his life and how much happiness he had brought, and then sent him on his way down the river.
The three boys saw UP early on Saturday morning. What a great movie. While it was hilarious and one of Pixar's best, Daddy also cried during the scenes about the relationship between the old man, Carl Fredricksen, and his deceased wife, Ellie. What a strong and unbreakable bond they had. The boys patted me on the back during the weepier moments.
Then we came home to throw Dylan a small pool party for his birthday. Thankfully his counts were high enough to be around a few other kids, who shot water guns at each other, ate Baja Fresh and some awesome macaroni and cheese cooked by our new best friend Evelyn, a classmate's great grandma, who is a brilliant cook and has been providing meals for us every weekend for many weeks now), and then gobbled up some sublime red velvet birthday cake that the boys helped Jana cook from scratch Friday night.
Sunday, Chandler sang in the children's choir, in robes and all! Hopefully he got his performing fix for a few weeks. We may not be able to enroll him in any drama classes during the summer because Dylan's treatment is so up in the air. In the afternoon, Chandler took a bike ride in the mountains with Mom and Dylan did more pool time with a pal.
Sunday night, I took Jana to the Lionel Richie concert at the El Rey, courtesy of MySpace. He played EVERY hit from his entire career, including the Commodores. Jana said it was the best concert she could have seen, bar none. Jana was in marching band in high school (trumpet), and her band played in the Rose Bowl the year Lionel Richie was the Grand Marshall. We hope to have a benefit concert for Dylan at the El Rey (now scheduled for September, back to school and, hopefully, back to normal), so it was nice to be able to check out the venue with that in mind.
Our friend Jill sat with the boys, playing Uno and other games. She brought Dylan a little toy helicopter for his birthday and it got stuck outside in a tree! "Team Yes" taped a broomstick onto the end of Chandler's microphone stand and, on tiptoe on top of a chair that a neighbor lent her, Jill got that helicopter down safely. :)
The latest (5/29, 6:00 a.m.): Chandler and I have been walking to school again! Please honk and cheer as you pass -- it's worth bothering the residents a bit, if it lets Chandler know he has a lot of fans too, along with his little brother. Yesterday we saw Obama leaving in his big helicopter, it flew right over us!
Jana met with our head oncologist, Dr. Lasky, for the last time yesterday (he's moving to Harbor UCLA, down south) and he told us we have 12 more radiation sessions (not just 6 as we had hoped), because of skipping sessions when his counts were low. That puts the end of radiation on June 15. This also pushes back our trip to New York to the last week of July through the end of August, and that is only if the treatment at Sloan Kettering is justified, which we will only know from an MRI four weeks after treatment is done. However these dates are still subject to further pushing back if complications continue over the next few weeks. Dylan will be getting platelets today. Please keep donating, Angelenos! Thank you for this precious gift of life.
Overall Dr. Lasky said he is impressed with how well with how Dylan is doing with this relapse, which was good to hear. If the tumors had continued to grow, we probably would have seen symptoms of that with Dylan, so he feels confident that they are shrinking instead, which is also a good indication that the New York trip will be on.
Last night, Dylan started asking mom about how babies get their food. She told him about breastfeeding, and that he used to breastfeed. They also talked about where babies come out of the woman. "Yuck! Gross! I'm SO glad I'm a man!!!" he said.
The latest (5/28, 6:00 a.m.): Dylan's blood counts were too low to get radiation yesterday. He needed a blood infusion (and platelets the day before). Thanks to those of you who have donated. Please keep it up for the next few weeks (click the link to the left), he may need them even after radiation is complete, which is supposed to be next Friday, a week from tomorrow.
We aren't sure if the pauses in radiation treatment will push us into an extra week or if they can make it up by giving a higher dose. A delay in the schedule will also push our trip to New York in July back. Jana will meet with our oncologist today, and he will give us more information about the radiation schedule. Sadly he is leaving UCLA for another branch, Harbor UCLA, at the end of this week. We will meet his replacement soon, who will help shepherd us through the end of radiation and into the next phase of treatment.
Jana is exhausted after a month of taking Dylan in for radiation every day, plus suffering through the two months of chemo prior. She continues to administer antibiotics at home three times per day, and give Dylan those painful G-CSF shots every day. At least there's just one more week of this treatment left.
To hopefully help with her fatigue, I got lucky and won two free tickets yesterday to see Lionel Richie on Sunday at the El Rey, courtesy of MySpace Music. I'm taking Jana. It will be good to see the El Rey, because I've never been there before and that's the venue where we want Dylan's benefit concert to be (which has moved to August). More on the benefit to come....
The latest (5/27, 6:00 a.m.): Dylan had a good birthday: thank you those who commented happy wishes (we counted around 100!). We read them all to him. He got lots of Pokemon cards, pool toys, Wii Super Smash Bros Brawl, Ben 10 action figures, two HUGE balloon bouquets, assorted other toys/games, plus cash from his two spoiling grandmothers. We all went to California Pizza Kitchen for a dinner that benefits the boy's school, helping to buy technology for the classrooms.
Since our oncologist gave Dylan today off from chemo/radiation, we let him attend school in the morning, and bring cupcakes to share with his friends and teachers (and big bro Chandler, who was well enough to go to school -- we even walked!). Dylan had blood drawn early in the morning, and unfortunately they called as he was having lunch after school with his friend Sean to say Dylan needed blood & platelets. Not the best thing to do on one's birthday (photos here, page 2). Sean went along to help and kept Mommy occupied while Dylan napped and got his infusions.
The latest (5/26, 6:00 a.m.): IT'S DYLAN'S 7TH BIRTHDAY TODAY!
We had a fun long weekend, featuring a visit from the boys' cousin Brad who drove in from Phoenix. Unfortunately we had to lay low because of Dylan's low blood counts, but still took the risk of going out to Cold Stone Creamery and Marix restaurant. He brought his one-eyed Pug Ogie with him, who kept the boys giggling the whole time. We also hit a Memorial Day BBQ yesterday and played a rousing game of kickball.
Our oncologist gave Dylan the day off of chemo/radiation yesterday because of the holiday and today also because of his birthday. He gets to do whatever he wants today, which will involve taking cupcakes to his class at school, opening presents and playing with them, and eating candy and cake! He and Mom and Chandler are playing Uno, our favorite card game, as I type this. Dylan won the first round!
The latest (5/22, 6:00 a.m.): Only two weeks of radiation left! Dylan's 7th birthday is Tuesday. A times, we weren't sure if he would ever see the day come. Because his blood counts were so low this week, they have taken him off the chemo for a week, and are only giving him radiation. However, the chemo is supposed to help the radiation be more effective, so we hope the radiation still works.
We had a nurse visit the house last night to show us how to administer the antibiotic to Dylan through his line (no shot). We were surprised at how easy it is, and I'm so proud of Jana for insisting we do this at home. Dylan also asked the (male) nurse to give him his painful G-CSF shot since he thought the nurse might do better than Jana. He gave the nurse a B in shot-giving, and told mommy she gets an F. Little wise-acre. :)
Jana's nephew, Brad, comes in from Phoenix today to help out over the weekend. He's bringing his one-eyed pug, Ogie, with him.
Chandler is getting better and should go to school today, although we'll drive and not walk so he can use all his energy to fight off the cold. He will also get his musical fix with Dirty Dancing tomorrow at Pantages. Booyah!
We also started talking to the doctor in New York about dates for the experimental antibody treatment. A lot depends on if radiation has done its work or not. If not, we will not need to go to New York and will try a last-ditch medication here. If so, we'll likely have dates of travel in mid-June. This makes planning extremely difficult (and travel extremely expensive). I'll post more info when we have it.
The latest (5/21, 6:00 a.m.): Jana spent most of the day yesterday fighting hospital politics to bring Dylan home. Her argument was that sitting in the E.R. to get antibiotics every 8 hours was more dangerous than just bringing him back in for it, since the hospital contains more and worse germs than the ones we knew we were up against at home, and since she brings him in every day anyway for radiation. She even arranged to have the antibiotics delivered at home where she can give Dylan the shot herself (she has become quite adept at giving shots). One nurse told her she has never seen a mom fight so fiercely for her little bear cub in all her years in healthcare. Yay, Jana!
He got radiation yesterday, but they took him off the chemo for a couple of days to let his counts come back up. She finally brought him home around dinnertime. We listened to his playlist, played games and watched Idol (the first half). We were all wiped out, so we Tivoed the rest to watch today. We already knew the results from reading online posts about it. The TV networks should do something about the time zone issue.
Just to keep as many germs out of the house as possible, Chandler had a special mid-week sleepover at a friend's house (thanks, Wendy!). He went to school yesterday to take the state test, and he felt a little better. I'm off to pick him up in a few minutes. He is still sick, though, so he is staying home again. We are all a little bummed about the Idol final call, but were glad to have 'met' Adam Lambert on television and watch him wow us every week. Congrats to Kris who we like, but do not love. :)
The latest (5/20, 6:00 a.m.): Dylan still had a mild fever all day yesterday (likely from picking up the cold Chandler has), but it spiked to 100.9, and so Jana brought him in to the E.R. Dylan was so sad to leave the house – we were watching American Idol and he wanted to vote for his favorite, Adam. While in the E.R., they were talking about their favorite things to do, and Dylan told Jana that his is to spend time with his family. They took his temperature in the E.R., but it had dropped back down to 99.5, where it has been the past couple of days. They said they normally don’t admit kids until they’re above 100.5, so Jana gladly brought Dylan back home (she called from the car singing “I’m on my way; I’m on my way, home sweet home,” which is a song they often sing on Idol when contestants go home). Dylan burst in the door and hugged me hard, and we voted for Adam 12 times (he first wanted to vote for him “googleplex” times, but I explained how this was not feasible, so he lowered it to a dozen). However, our oncologist called around 11 from Chicago where he was visiting, and was awoken himself by the UCLA nurse on duty, to have Jana bring Dylan back in, saying that he has seen bad things happen with kids on chemo/radiation who stay home with mild fevers that blossom into much worse infections. He was asleep, so too tired to be upset to leave the second time. I spoke to Jana this morning and they are alright. They’re still in an E.R. room, but she was able to get a cot to sleep on. He’s on antibiotics and they will still give him chemo/radiation (we were concerned that the treatments would be delayed, putting off our trip to New York in July). I will try to get off work a little early so I can relieve her, and maybe spend the night with him in the hospital; he will probably need to stay overnight for the rest of the week until his fever is gone. This kind of emotional rollercoaster is not unusual for cancer kids and kept me up late worrying and upset. Props to Jana for taking it far better than I do: whiny emo dad! Chandler still has a cough, but I have to take him in to school, since he missed two days of state testing that he has to make up today or get a zero on. We may not walk to school at all this week unless the germs clear his chest. :(
The latest (5/18, 9:00 a.m.): Dylan is halfway through radiation -- this week is 4 of 6. He only had that one day when the machine went down that he will have to make up. He needs the painful G-CSF shots every day now, and also needed platelets last week. Please click the Donating Blood and Platelets link to the left to schedule a blood or platelet donation any time in the next few weeks, just so we are sure to have some on hand.
Dylan (and big bro Chandler) have been swimming in the pool over the warm summery weekends; Dylan can only swim when they de-access his port (a permanent device that goes straight from his chest to his heart to administer chemo and anesthesia). However, he has started to feel tired from the effects of treatment and we have been told that this tiredness can last up to a year after completion of treatment. Those of you who know Dylan personally know he is not a low-energy type of kid. We hope that this tiredness does not last as long as usual.
I'm writing this from home where I am sitting with Chandler, who is sick (a cold, not the flu, thank God). We are worried that Dylan may catch it -- his white blood cell counts are very low -- which may delay radiation and also delay the trip to New York for July. Chandler is getting caught up on his book report, reading Bridge to Terabithia.
The latest (5/15, 6:00 a.m.): Dylan had an appointment at Cedars, where any surgical procedures are done. This was in preparation for our trip in July to New York, to schedule the installation of an Ommaya reservoir in his head. This will be where the antibodies are injected straight into his brain. The antibodies are irradiated and latch on to any cancer cells that are left after the broader radiation that we're doing now.
Since Cedars is very close to work, Jana and Dylan graced the FIMeteria with their presence for lunch. He had a PB&J, no crusts. :) After posting that he was 'in the house' on my status, some folks came up to see him. Mommy told a bad joke, so Dylan said "You're fired!" That got a big laugh. Then he said I was fired too! Thank heavens he is not part of the new regime at MySpace! Then we walked around and said hi to some of his bigger fans around the building. Everyone loved his pirate bandana and matching Black Dog shirt. I think it made him feel special to know he has so many fans.
The latest (5/14, 7:00 a.m.): Well, after that good news post yesterday, I came home to learn that Dylan's blood counts had dropped to zero since Monday, and that Jana had to give him one of those shots in his leg once they had gotten home. Since the results of radiation are cumulative, it looks like these shots will be a part of life for the rest of radiation (three more weeks after this one).
Chandler (and the rest of us) were happy to learn that Danny and his stubble face got voted off Idol, and that our favorite, Adam, has gone on to the finale. Chandler has decided that he wants to submit a tape to America's Got Talent, which is due tomorrow out in Burbank. So we're scrambling to get something recorded and on tape today after school. We'll probably have him sing something from Wicked, although after seeing the musical Rain, he is singing a lot of Beatles.
The latest (5/13, 8:00 a.m.): Dylan is doing well this week so far; his blood counts were way up on Monday after getting those painful Neupogen (G-CSF) shots on Saturday and Sunday. We hope that we don't have to give him the shots again this weekend, though. It is not easy to do that to your own kid.
I drove Chandler to school today because he was up until 11 watching the finale of the Biggest Loser. I hated missing out on our quality time. We'll hit the pavement again tomorrow....
The latest (5/11, 6:00 a.m.): I am glad Mother's Day came during this radiation treatment, because I am so grateful for Jana and how strong she has been during this whole ordeal. She got a good re-energizing weekend to prepare for the coming week. Every weekday, Dylan can't eat in the morning (because he will be put under later in the morning); they have to go in and get chemo first while Dylan is really hungry, then he gets knocked out to get radiation (he can't move a millimeter during this), and then she waits patiently for him to wake up with a smile and a Luna bar (Smores flavor). Then she brings him home, around noon, and tries to keep him entertained and educated (we have a teacher that comes to the home, but only for 1.5 hours per day). We have to keep his brain active, because of the possible side effects to his cognition of the radiation. Luckily he likes to play board and card games, so that helps. Every weekend, she has to give him very painful Neupogen shots in his leg on Saturday and Sunday, to help pull his blood counts back up, another side effect of treatment.
For Mother's Day, we made Jana breakfast in bed; we went to the beach for a bike ride; we went to Krispy Kreme; we got her an iPhone (and Chandler got a phone, too, for holding up his end of a contract we had with him about getting physical activity every day); and we had friends over to swim in the pool. I did a week's worth of cleaning up around the house so Jana doesn't have to worry about it, and we had two friends bring meals over so lunch and dinner were also worry-free.
The latest (5/8, 4:00 p.m.): Dylan told Jana he wishes he could be a baby again, but stay an almost-seven-year-old in his mind, so he could live a longer life (!). He will need to get Neupogen (also known as G-CSF) shots over the weekend -- we have to give them to him at home -- and they are VERY painful. :(
The shots are to raise his blood counts which have dropped, not drastically but enough to give him risk of infection and another run to the E.R. We have started asking for blood donations again for the next four weeks. Click the Donate blood link to the left for info. (Note that we do NOT need platelets and shouldn't, although that may change, so keep an eye on this blog for updates.)
Nevertheless, his appetite is as strong as ever and he asked to bake some scones after he got home from his daily treatment today. Can't wait to get home to taste them! I walked Chandler to school four days this week. Today when I left him he was surrounded by a dozen girls. Daddy didn't raise no fool! :)
The latest (5/7, 5:00 p.m.): Dylan's blood counts dropped low enough that he needed a Neupogen shot and a blood infusion. We had stopped asking for blood donations because we were told he probably wouldn't need them. It was OK for today because they had some on hand, and he was allowed to come home, but we should start up the blood donations again next week until we're finished with radiation (four weeks from tomorrow). Click the Donating Blood and Platelets link to the left for info on donating. Note that we do NOT need platelets and shouldn't, although that may change, so keep an eye on this blog for updates. One bit of good news is that his nightmares seem to have stopped.
Chandler and I walked to school today in the heat, both sweating like horses by the time we got there. He told me he used to cry at school for Dylan and because he was scared about our family breaking up (he has seen the results of some vicious divorces at school). I reassured him we were all together for the long haul and that he will be my number one son forever. Blood, sweat and tears; what a day!
The latest (5/6, 6:00 p.m.): Dylan is taking the radiation well, although his blood counts are down today. They are not as far down as they were during the chemo we had prior to radiation, so we are hoping we will not have any infections that force us to go to the E.R. and stay overnight (all his treatment now is outpatient). We also should not need blood or platelet donations (though we encourage people to donate anyway, as some poor kid will need them). He will likely get a Neupogen shot tomorrow instead, to help pull his counts back up, and will probably need one of those injections every week until we're done (four and a half more weeks).
Chandler is also doing well. Although I did not walk with him to school, I did spend a half hour with him on the school yard before class started. He has been practicing singing the Alphabet song backwards (!), and did it for me without even checking his "script." He is also excited about our upcoming trip to New York in a couple of months for the experimental treatment for Dylan; and is hopeful to see a lot of musicals, and maybe even go backstage to some, if we can pull some strings (i.e. Wicked, Legally Blonde, Mary Poppins, Shrek, Spamalot and Billy Elliott).
The latest (5/5, 6:00 p.m.): Dylan switched to a new antibacterial medicine, Dapsone, to keep infections at bay yesterday and it caused him to be extra drowsy, and for his SpO2 to be low (the oxygen levels in his blood), so just to be safe they X-rayed his chest to be sure there was no fluid buildup and he is fine. Chemo and radiation continue into week 2 as scheduled and he seems a lot better today. He saw his home-school teacher and actually seemed to enjoy it -- usually he crawls under the table when she comes! He has also been having a lot of nightmares lately, something additional to think/pray about.
Chandler overdid it at a playdate Monday afternoon and pulled a muscle, so the walk to school was slow and arduous today. I may take a day off of walking him to school tomorrow, although I have already come to love this time with him, and it's nice to see everyone waving and honking as they pass by in their Beemers, Mercedeses and Lexi.
The latest (5/4, 7:00 p.m.): They fixed the radiation machine and Dylan started week 2 of radiation today. He also went to his Physical and Occupational Therapists after the treatment, so he has been tired with a mild headache all afternoon. The minivan's brakes went out, so Jana tried to take it in and take him to IHOP while it was getting fixed, but Dylan felt so bad, they had to call it off and just come home. I will take the car in tomorrow. I finally cashed in two gift cards from my team at work for Chili's and brought home some dinner so Jana didn't have to cook. We'll be starting up meal deliveries again this week to take some of the work off her shoulders until radiation, and the school year, is finished. Let me know if you would like to help with meals, Angelenos!
The latest (5/1, 6:00 p.m.): May day! May day! Houston we have a problem! Dylan was getting day 5 of radiation and the machine broke. I'd like to think it was his superhuman strength that did it, but it was probably just like my work laptop: always overheating. We'll probably have to make up the one day, since he did not get the full dose of rads, which may delay the New York treatment by a week. We will not know for sure until we're closer to completing our six week course of treatment.
Dylan mentioned that he felt like there was "lightning" in his body again last night, but all-in-all he is doing well. We only had that blip of headaches and vomiting on Monday which I think can be chalked up to too much time under anesthesia. Mom is trying to keep his mind active with online quiz games, puzzles/Legos, and lots of reading -- he even read Dr. Seuss' Hop on Pop by himself in its entirety yesterday!
Thanks to all who responded about big brother Chandler. Siblngs often have it just as hard emotionally as the kid with cancer. I think the positive energy and comments here and on the social networks will do him a world (wide web) of good. :)
The latest (4/30, 6:00 p.m.): I walked Chandler to school today while Dylan was getting his chemo/radiation. He said he doesn't feel people care for or about him like they do for Dylan. I told him how many of you out there pray for him, think about him, ask about him, but he said he doesn't feel it; it would be great if people, especially other kids, asked him how he's doing and not just Dylan once in a while. We also have gotten Chandler weekly counseling as the school lost its budget for that. It's costly, but worth every penny. He is certainly doing better than when we were separated during the first bout with cancer a year ago, but is a really sensitive kid that needs extra TLC.
Meanwhile back at the ranch, Dylan has been doing so well -- other than Monday's reaction -- that the doctor allowed him to attend school this afternoon. He loves his classmates and teacher so much! :)
The latest (4/29, 8:00 p.m.): Dylan did great on day three of radiation; no headaches or nausea. I am hoping Monday's rough ride was just an anomaly. He saw his teacher that comes to the home in lieu of his going to school, and went for a walk with Mom. I met with some folks this morning about doing a benefit concert to help us with medical bills and our trip to New York in July. More info coming in the next couple of weeks!
The latest (4/28, 8:00 p.m.): Dylan had day two of radiation and had no headaches or nausea. In fact, he walked a couple of miles to a friend's house, played Rock Band ("Eye of the Tiger" is his favorite song, and, although he is one of the greatest fighters I know, he has never seen any of the Rocky movies), and he even jumped on the trampoline! He is gearing up to watch The Biggest Loser and then call it a night. One thing about the treatments is that every day he has to stop eating from midnight through until he wakes up from anesthesia around 11 a.m., so he gets super hungry. Mom is always there with a yummy snack for him when he arises from his drugged stupor. He's usually a demon when he awakes, but so far he has done OK, probably since he is only out for an hour as compared to MRIs, which are twice as long.
Big brother Chandler went to Long Beach on a science field trip for school where he saw the Queen Mary, got on another boat where they caught a stingray and tasted sandy mud from the ocean floor (ewww, I know!). He said it was the best field trip ever. We resume walking to school tomorrow. Feets don't fail me now!
The latest (4/27, 10:00 p.m.): Dylan started radiation today. He has never had it before; we have previously only given him chemo. Things went well for the first half of the day, but Jana called me at work to let me know that he said his "brain hurts" around 2 p.m., and that he would like some "peace and quiet" which is a turn of the tables on the usual -- we're usually telling him to shut the heck up so we can think! Dylan took a nap, but woke up with nausea and severe vomiting a couple of hours later. By the time I got home, all that had subsided, and he was doing alright. The problem is that these side effects are cumulative, so we can only expect it to get worse; we're hoping we can time the pain and anti-nausea drugs better moving forward, to last through the afternoon. It's just one day at a time this week.
I walked big brother Chandler to school for the first time, and we really had fun. Jana, the personal trainer, has taken the lead on walking or biking to school with him, which the school principal loves for a lot of reasons (healthy, saving gas, freeing up parking, and quality time with your kid, to name a few). I have gotten out of shape with the last couple of years of hospital stress, so it was a rude awakening for my lower body, which rebelled violently to the excessive movement (it's a mile and a half from our home, and then lucky Chandler got to sit down in class while I trudged the same distance back). We also had a big day at work, meeting our new overlords, who proved to be funny as all getout and inspirational to boot. Let's just hope the new chapter we just started at MySpace is not Chapter 11. ;)
The latest (4/26, 6:00 p.m.): Dylan enjoyed his last weekend before radiation with two birthday parties. We are optimistic that radiation side effects will be minimal and the treatment effectiveness will be maximal. Please pray, think good thoughts, send positive vibes and energy, whatever you've got, we'll take it.
The treatment is outpatient at UCLA in Westwood, and should last from 8-11 a.m. every weekday for six weeks. Even so, Jana will be home most afternoons with Dylan, and it would be helpful if some other moms could help sit with Dylan for an hour or so while she gets things done, goes for a jog, runs to the grocery store, etc. Let me know if you can help out, locals. We could also use help with dinners for the family/lunches for Chandler, for those who wish to help out. Thanks so much!
The latest (4/24, 9:00 a.m.): We just got the spinal tap results and they were negative, i.e. no malignant cells, which is great news. His blood counts are also high, so we're ready to have a great weekend without worries, and hit radiation on Monday full force. Dylan won't be able to attend school for the rest of the year, so he has gone in as a visitor most of this week. It's funny because he LOVES school, whereas big brother Chandler is the one who would love to skip out the rest of the year....
The latest (4/17, 10:00 a.m.): We met with the UCLA oncologist yesterday, and the MRI results are not good. There are new tumors that have grown in his spine up high near his neck, but the doctor still thinks the chemo has had an effect in slowing that growth. We are working closely with the UCLA radiation department to get him scheduled in for his six-week course of treatment as soon as possible. It appears we will begin some time next week. We are also going to have him on chemotherapy during the radiation treatment, but even so it appears we will not need blood or platelet infusions, so we are not calling for donations as of right now. The treatments last roughly from 6-7 a.m. until 9-10 a.m. Monday through Friday, with the rest of the day free. The doctor has also ordered another spinal tap before we start, to establish a baseline. We are concerned: Dylan had very painful spinal headaches for 4 days after the last one. Hopefully this time he will not....
The latest (4/13, 1:00 p.m.): Both boys had a blast last week camping up at Leo Carillo. Highlights were finding hermit and fiddler crabs on the beach during low tide, hiking up to a 40-foot waterfall, bird watching (red-tailed hawks were the fave), playing charades and performing hilarious skits by the campfire (most of our friends on the trip are comedians for a living) and, of course, perfecting the art of making s'mores. We have met with the doctors to go over Dylan's next phase of treatment, radiation: We are tentatively scheduled to begin radiation therapy next week. It is tentative, because Dylan will need to be sedated every weekday for the half-hour treatment (he can't hold still that long), so the anesthesiologists need to be coordinated with, and may not be able to take Dylan as a patient until later than next week. We are not going to Boston for radiation after all and will stay here, which will cause less disruption to our family and allow older brother Chandler to finish this school semester along with his classmates. The radiologist took Dylan in to see the radiation machine and show him the laser lights that help target the beams. He moved the machine around and the table back and forth with a remote control, and won some new fans at UCLA. :) He will continue on chemotheraphy during radiation, but they're taking him off the chemo that caused his counts to drop so low that he got infections (cytoxan). He will have oral etopiside and carboplatin, along with the oral temodar he has already been taking. Side effects will be similar to those of chemo: nausea and vomiting and lowered blood and platelet counts, but there will also be growth retardation in his spine (though most growth occurs in the legs, so he may be just an inch or so shorter than he would have been). He will need to see an endocrinologist when radiation is done and will likely be put on Human Growth Hormone. He may also have cognitive issues later in life, the example we were given was that he might have trouble in math in junior high and need to work extra hard on it, but nothing like the issues we have seen in other kids (treated decades ago with harsher doses), which is something of a relief. Radiation is scheduled to last 6 weeks, although that can be prolonged by complications. Then there will be a 3-week break before we go on to New York for the experimental antibody treatment, which is supposed to last 4 weeks. The timing of our trip to New York coincides with my parents annual trip to Martha's Vineyard in the month of July, so hopefully Dylan will be well enough and allowed to travel over to the island on weekends.
The latest (4/7, 6:00 a.m.): Apologies for not posting for a while. I did not have a lot to report, and still don't: We still haven't gotten anything conclusive from the MRI. The UCLA doc needs to coordinate with the CHLA doc to determine if the chemo has had an effect since the scan that showed the relapse in January. There are still small tumors there, so there is no way we can say it is clean. We meet with the UCLA doc on Thursday and with the radiologist Friday. We are not going to Boston for radiation, which I blogged about a couple of weeks ago, but which many people missed. Please see the archive of these updates on Dylan's site (link below) for details (see 3/26 update).
My sister and her boyfriend leave town today heading back to New York. We managed to concoct some great SoCal weather for their visit, which ends today with cold and rain coming in, so they really lucked out. They were also lucky to have Dylan out of the hospital for their stay so they could see the sights of Los Angeles. Both Dylan and his big brother Chandler have had a great time with them, going to the Pier, Promenade, their hotel pool and the Art Show that was in Brentwood over the weekend. I also got to take Chandler to see Rain: The Beatles Experience (our generation's version of Beatlemania) and it was spectacular: those of you who know me know I am a huge Beatles fan. I got to introduce Chandler to a few new Beatles songs, and sing along with him to the ones he knows.
This week is Spring Break for the boys, so I took the week off from work. We had hoped to plan a trip to Sea World, but the upcoming doctor meetings will prevent that from happening. We may take a day trip down as far as the Wildlife Animal Park which both boys would love. Dylan is especially into wild animals, like lions and tigers and bears, oh yeah!
The latest (4/1, 12:00 p.m.): I spent the night with Dylan in the hospital and now have spasms in my back from sleeping on the plastic couch in his room. Thankfully, his blood counts have risen high enough that they have said he can come home today (no fooling!), so hopefully we can all get better (Mom has been sick as well).
The docs agreed to give him an MRI at UCLA instead of Children's. He is going in any minute for that, and we may have results as soon as this afternoon, but probably not until tomorrow. Nail-biting time....
We just got some financial assistance from the Advertising Industry Emergency Fund, who helped us during Dylan's first bout with cancer. This will help us cover our family medical insurance deductible. Learn more about these great people at http://www.aief.org/
The latest (3/31, 6:00 a.m.): Dylan's fever eventually rose high enough that we had to take him in to the E.R. The children's floor of the UCLA hospital is full again, so Jana had to sleep in the E.R. with him, again. While I gave her a break during dinner last night, I had them roll in an extra gurney so she could sleep on it. Last time she had to try to squeeze in on Dylan's gurney with him. They came in at 1:30 a.m. to move them up to a private room on the pediatric floor, so the rest of the stay should be more comfortable.
He probably has caught the cold that the rest of us have had and so he's on antibiotics. He has to go 48 hours without a fever for them to release him. He will also need blood and platelets today.
The worst part of this is that the MRI that was scheduled for today at Children's Hospital had to be cancelled. He has to get it at Children's instead of UCLA because they want to use the exact same equipment as when he was first diagnosed with this relapse. And so now we can't reschedule until he's out of UCLA, but it's extremely difficult to get a slot at Children's Hospital MRI center. We are just hoping that we can get lucky and grab a time in the next couple of weeks once he's well again.
The latest (3/30, 8:00 a.m.): Dylan's running a little fever; we were up since 3 taking his temperature periodically. If his temperature goes up any more (past 100), we'll have to run him in to the ER again. It costs us $200 every time we've had to do this, so we'd like to avoid it if we can, but the risks of him developing something like pneumonia or RSV again are costly in their own way. Also, he has an MRI tomorrow. Please think, pray, send positive energy our way.
A friend kindly gave us two tickets to the Nickelodeon Kids' Choice Awards, so Mom took Chandler and they had a blast and saw a ton of celebrities! We're going to review the Tivo recording closely to see if they got on TV. They fortunately did not get slimed. :)
Friday's fundraiser in Boston raised us a whopping $1,000! Thanks to Dan in Boston to help us with our travel. Since we aren't going to Boston (see my note from last week), we'll use the funds for our trip to New York in July. My sister comes to town this week with her new beau. She's taking time off from being a big cheese wedding/event planner in NYC to help out with the boys.
The latest (3/26, 6:00 p.m.): My parents left town. It was great to have them here. The boys spent many fun hours with them playing games, shopping, eating out, and they even had a special sleepover at their hotel! Unfortunately, in addition to seeing them go, we have started hitting some roadbumps: Dylan's blood counts have started to drop, so he went in for some blood this afternoon, and will likely need more, and platelets also, soon. Thanks to all who have donated. He looks pale, and is tired and feels weak in his arms. His home school teacher came in early this morning to work with him, and his PT and OT from school made special arrangements so they can keep seeing him and working with him -- they really dig him. So he has had a full day that he'll end with popcorn and Idol. We also met with the doctor today to discuss the planned treatment in New York (roughly during the month of July), which may need us to clear additional hurdles to be considered for eligibility. So it may not happen. We're not sure what to do in that case. We also learned that unfortunately there is no room for us in Boston: at first they were going to be able to take us in mid-May when we needed to start getting radiation, but then one of their machines has broken down, which can delay their schedule for months. There are other facilities that do proton radiation, but the more we have looked at it, there are no conclusive tests that show that proton is any better than photon as far as side effects and damage. We are opting to stay at UCLA, hoping that we're making the right call, and welcome less disruption to our lives by having to move away for that much longer.
The latest (3/22, 11:00 a.m.): Dylan came home last night and my mom and dad came to town. I took my parents to Chandler's talent show -- Dylan has to avoid other kids. Chandler did great in his performance singing the Jonas Bros. "Burning Up" once again. Watch it here. Some middle school girls came up and told him how awesome he was after. He blushed!
For some reason, Chandler has woken up and thrown up two mornings in a row, but then both nights did the school talent show like a pro. Not sure if it was too much candy in the green room or something else, but we're keeping him separated from Dylan as his blood counts will soon start to drop. We also have to keep him well hydrated as they would have been doing so via IV, but let us come home early. I have also been sick, but should be over it in the next day or two, hopefully.
Dylan is happy to be home, especially with the grandparents in town, and out of the shared room with loud snoring neighbors. He has already played with his grandparents (the Wii and his favorite card game Apples to Apples) and took them to church and out to lunch. He and Chandler also plan a sleepover in their hotel room, if all are feeling up to it tonight.... If you haven't seen them yet, I recently uploaded videos of Chandler in a couple of performances, one from school, and a couple from rock band camp, also one of us playing our favorite family ball game, freezeball. Watch them here!
The latest (3/20, 8:00 a.m.): Dylan was admitted to the hospital yesterday for his next inpatient treatment, which should only last a couple of days. Unfortunately they are in a shared room, apparently with a loudly snoring neighbor. :( Hopefully they can move into a private room today. Mom is going to see Chandler's first talent show performance tonight (he's singing "Burning Up" again), so I'm going to (try to) sleep with Dylan, and will have to wear a mask, because I have caught a cold Chandler had last week. My mom and dad come into town tomorrow and we're going to see Chandler's second talent show performance. Hopefully Dylan will be released tomorrow.
The latest (3/18, 10:00 a.m.): Dylan begins the inpatient treatment of chemo tomorrow. He is OK on blood, but needs platelet donations this week and next week when he will likely need them. Please schedule a platelet donation at UCLA, call Fernando at 310-206-6187 and be sure they are "directed" to Dylan. For more info, click the "Donating Blood and Platelets" link to the left.
The latest (3/16, 12:00 p.m.): Dylan goes back in for the larger dose of chemo toward the end of the week, which starts our second month of chemo treatment. He will be in for a few nights starting Thursday night, with family coming to town Saturday to help for a few days. We were supposed to take a two week break between the months, but, because Dylan was off chemo for a couple of weeks because of low blood counts, they're skipping the break and just going on into the second month and taking the break after, then either going into a third month of chemo or then on to Boston. We have an MRI on the week of April 13th which will be the deciding test on whether we stay or go.
Ominously, Dylan has started to learn sign language. His hearing loss is permanent and is pretty severe in both ears; this round of chemo might complete that deterioration. I uploaded videos of Chandler in a couple of performances, one from school, and a couple from rock band camp, also one of us playing our favorite family ball game, freezeball. Watch them here!
The latest (3/12, 5:00 p.m.): They just started Dylan back on chemo today; his blood counts were high enough. This is outpatient chemotherapy, so he'll be able to sleep at home tonight and until he gets another fever. He'll continue to need blood and platelets for the next few weeks, and we don't know if or when we'll have another delay in chemo scheduling because of low blood counts. Chandler just played a leading role today in an after school version of High School Musical 3, this is in addition to his three performances coming up of the Jonas' Bros "Burnin' Up." He really shines when he's on stage. Hope to upload video soon....
Just learned that more family are coming to town, both the week after next, and the first week of April. That will be a huge relief.
The latest (3/10, 8:00 p.m.): I haven't updated because, thankfully, things have started to get back to normal, all things considered. Dylan had a teacher come to our home to teach him for a few hours. She was impressed with his smarts! Dylan has lost most of his hair, but some stubborn fine blond hair is clinging on for dear life. Though it's hard to watch the hair fall out, it tells us the chemo is working. Speaking of whic, his counts have remained too low for him to restart chemo; we don't want to delay, but don't want him to get really sick, either.This also throws off our planning for the eventual moves to Boston and New York, which we are trying to research (schools, places to stay, places to eat/shop, places of worship, etc. -- any advice/connections are appreciated).
The latest (3/8, 6:00 p.m.): We went out to the park today since it was such a beautiful day: Dylan can't be inside, especially not near any other kids, since his counts are low. We also went for a good long walk: Dylan spends a lot of time in bed when he's in the hospital, and doesn't get the exercise he was getting before the relapse. We also have been spending a lot of time playing Wii while we are inside: Wii Fit for all of us, Ben 10 for Dylan, Sing It for Chandler, Guitar Hero for Jana and Rock Band (singing) for me.
The latest (3/7, 11:30 a.m.): DYLAN IS HOME! I wiped down the whole house in an hour flat to degermify as much as we could. His counts are up, but not optimal, he still could catch something and have to go back. We start up chemo again next week.
"Big ups" to Jana who stayed with Dylan the majority of the time and didn't opt for television to pass the time, but played games, did homework, read and danced with him. We're also grateful for the donations of blood and platelets, daily delivery of food, and countless prayers and positive energy coming our way. I also have to thank my associates at MySpace for their understanding, support, and love during the trials and tribulations of the past month and months to come.
The latest (3/6, 5 p.m.): Dylan may be able to come home tomorrow! His blood counts need to continue to rise and cultures they took need to remain negative. Dylan got some OT in his hospital room today (still needs it from a stroke he had in '07), and also saw a teacher, his first outside of school. According to mom he enjoyed both. He is losing his hair pretty fast now.
The latest (3/5, 6 p.m.): I spent the afternoon with Dylan in the hospital, reading books, playing Connect 4 and 20Q, doing homework, watching TV & DVDs. He has had no fever since we brought him in, is in great spirits, has his dad's appetite, and gets up to hip hop dance during every Disney Channel show theme song (see his playlist for examples); we're really only here so they can run cultures and see what grows: something caused the fever in the first place. These kind of lab results takes 48 hours of mostly just sitting here and waiting, ugh. He will likely need platelets in the next week or two, so thanks for those of you that did or will be donating. Platelets expire faster (after just 5 days), so please consider donating repeatedly, as we need to be sure there are always fresh bags on hand for when they're needed.
The latest (3/4, 3 p.m.): We finally got in to a private room on the pediatric oncology ward. Dylan is doing OK, has a good appetite and attitude and is wooing all the nurses, as usual (even the male ones!). I'm with him now and Jana is coming back tonight to sleep with him. We're going to keep him in a day or two to ensure his numbers stay down. Hope to get him home Thursday if all goes well....
The latest (3/4, 7 a.m.): Just talked to Jana. She's still in the ER waiting for a room, slept OK, got coffee. Dylan's fever is down. We're waiting for blood results, though, so more info to come. They had trouble accessing his "port" which is a permanent entry point they've installed for giving meds and taking blood, direct from his chest to his heart. This caused the little guy (and his mom) a lot of pain. :(
The latest (3/3, 6 p.m.): Jana just took Dylan in to the ER, again, because he started running a fever (101.7). He had been coughing this morning, so we had feared something like this. We also got his blood counts back: they are at zero. This means he has no ability to fight off infections. They will give him blood, antibiotics and fever reducer, and try to get him admitted in to a room (the floor for kids like him is full) until he can get better. He can't take any visitors because of his immunity being zero. More info to come as I get it from the hospital. I'm home with Chandler, trying to get him to do his homework....
The latest (2/26, 7 p.m.): Dylan went in for a checkup and to start the next mini-cycle of chemo, but his counts had fallen so sharply that they decided to postpone it a week, which postpones Boston and New York another week, and this could happen again. Makes it hard to plan travel and lodging.... Our oncologist at UCLA was donating blood himself and the donor center told him to tell Dylan that he has plenty of blood. :) He will still need platlets for a few more weeks, so (re)schedule for the week after next. If you still want to donate to help the other kids in the hospital, we also encourage that. There is always a dire need. We are proud that Chandler got in to the school talent show! He's singing the Jonas Brothers' "Burnin' Up" which you can hear on my Chandler playlist. He is also singing the same song with the Adderley School, where he has previously done all his big musicals, so he's really going to rock the mike. He is also rehearsing an oral presentation about Teddy Roosevelt that he's going to give -- in Rough Rider costume. All performances will be uploaded to myspace video promptly. :)
The latest (2/25, 8 p.m.): Dylan's blood counts from yesterday were good enough that we weren't called in for a transfusion today. He goes in for a checkup tomorrow and they'll run the labs again. Jana's family leaves tomorrow. We will really miss the help around the house and with the boys.
Dylan went by school for a visit today -- it was "Twins" day, so Chandler and he both wore their Walk in the Park shirts from our Six Flags Cure Kids Cancer event. He really misses school and was sad to leave before the other kids. He will probably not go back until after the summer.
Chandler has also been hit hard emotionally by this relapse, as he was the first time. He has voiced how scared he is and also wonders why all the kids ask how Dylan is doing, but not how he's doing. We are trying all we can to make him feel special and important, but Dylan has so many needs that sometimes it is hard.
The latest (2/24, 7 a.m.): We had a rough day dealing with insurance yesterday -- they weren't going to allow the prescription chemo medicine at first and we had to jump through a few hours' worth of hoops on the phone. Then at the pharmacy things had gotten tangled up even worse. We finally got his chemo pills at the end of the day. He also had a nurse come to the house to draw blood -- we're waiting for those results as we expect his counts to drop soon. Should hear back this morning....
Dylan's hair will be falling out soon. He's itching like crazy, but that means the chemo is working. Right now mom is washing his hair for the first time in a while (he can't take a bath/shower until the incision on his back is fully healed -- he gets his stitches out today). He is all boy and is resisting the hair wash like a bad puppy dog. :) Also, Dylan's second bottom middle tooth fell out last night! He has a lot of money now!
The latest (2/22, 4 p.m.): Since he will not be able to return to school because of his dropping immunity, Dylan has been spending a lot of time at home.
He does not feel bad right now, so he has been quite active: playing Wii Fit, Ben 10, Apples to Apples, building with Legos and blocks, and lots of wrestling with daddy. His appetite is great, he's off the anti-nausea medicine and he is drinking lots of water and taking his medicine, mostly, without a fuss.
He will be in and out for a while and will still need blood and platelets, but we can do most of what we need to do here at home.
The latest (2/21, 2 p.m.): DYLAN IS HOME!
He will be in and out for a while and will still need blood and platelets, but we can do most of what we need to do here at home, where he'll feel better anyway. He's not feeling all that great, but we're so glad to have him home. Just need to keep him hydrated and clear of germs. Checkup on Thursday
The latest (2/20, 12 p.m.): Dylan started chemo, finally, late last night. He is responding very well to it and we have a new group of Dylan fans among the doctors and nurses. :) Jana's mom and sister are with him today and tonight and they are hinting that he might be released as soon as tomorrow! Also, his story is featured on this new site from MySpace: http://www.myspace.com/livingonmyspace Check it out! In case you're just tuning in: Dylan was admitted to UCLA Mattel Children's Hospital last week to begin chemo for at least one month. He'll be in for 5-7 days, then out for a week, then back in again the following week.
UCLA Mattel Children's Hospital Website:
Treatment lasts either one or two months, depending on how the cancer responds to the chemo. Once chemo is done (either mid-March or mid-April), it's on to Mass General in Boston (the only place that does proton rather than photon radiation, on pediatric patients) for six weeks. Then we hop over to Sloan Kettering in New York for radioactive antibody treatments for four weeks.
The latest (2/17, 9 a.m.): We had a nice long weekend together as a family at home and out & about, and it may be our last for a while. Dylan goes in Wednesday or Thursday (we find out for sure today) to start chemo at UCLA. Treatment lasts either one or two months, depending on how the cancer responds to the chemo. Also: Jana's mom and sister arrive Thursday for a week. It would be great if they could have a guest house or something similar to stay in on the West side of L.A. Anyone able to help out? We have the exciting job today of collecting his urine for 12 hours. It's called a creatinine clearance, to set a baseline to make sure his kidneys work during chemo. You wake up, pee, then collect for 12 hours thereafter. Then they test it again during treatment. However, Dylan was adamant about going to school, and didn't need to pee this morning, so we got to tell the teacher the important message that Dylan can only pee once, we need to note what time he does, and that he has to hold it the rest of the morning until we pick him up at lunchtime. Once chemo is done (either mid-March or mid-April), it's on to Mass General in Boston (the only place that does proton rather than photon radiation, on pediatric patients) for six weeks. Then we hop over to Sloan Kettering in New York for radioactive antibody treatments for four weeks. HELP! WE NEED BLOOD AND PLATELET DONATIONS starting now through the end of March. You must be in Los Angeles to donate. Schedule a blood or platelet donation at UCLA and tell them you want to "direct it" to Dylan; here is more info: Donating Blood & Platelets
The latest (2/13, 8 p.m.): After looking over all options, we have decided to have treatment done at UCLA, starting mid-week next week. The treatment will be pretty much the same as we would get at Children's, but it will be much closer to home. We're having family come out the week after next to help.
The radiation that is planned after the first two months of chemo may need to be done in Boston (the only place that does proton rather than photon radiation) in mid-May and then to New York (where an experimental procedure is done) for the month of June. This is all subject to change, but that is the basic plan.
The latest (2/11, 8 p.m.): The pathology lab results came back and this is indeed a recurrence of medulloblastoma manifested as leptomeningeal disease in the spine. Most of the second opinions we've been getting have indicated we're able to do all we can here in town, either at Children's or UCLA Mattel. This is a relief in that we will not need to move away or be split up as a family. We met with the oncologist and head nurse at Children's again to go over the other consults and they gave us a little more hope for Dylan's chances. To see Dylan, you'd never know anything was wrong with him. The oncologist today was amazed at what great shape he's in. He is still tender where he was cut open, though, and I keep patting him on the back, out of habit, which hurts him. :( We meet with the equivalents at UCLA tomorrow. UCLA is preferable in that it's a lot closer. Both head doctors know and respect each other, so it may just come down to convenience this time. A more experimental therapy is also in the plan, involving radioactive antibodies that go staight to the cancer cells to kill them, at Sloan Kettering in New York in about 3-4 months, for about 4 weeks. The boys' aunt Annie lives in New York, so we'll have some support (not to mention MySpace's office there who are huge David family supporters!), and Chandler will be able to see Wicked at the Gershwin, which is like his Mecca.
The latest (2/9, 8 p.m.): Although we did not get lab results back, based on the surgeon's recommendations, we spent the day getting all Dylan's medical records together and packaged for second opinions from Cedars, Duke, Sloan Kettering, Johns Hopkins, UCSF and UCLA. We already know what Children's wants to do (described in detail here). The surgeon was sure enough that this is the ominous Leptomeningeal Disease that we had feared, and maybe other kinds of tumor as well. The treatment will be the same no matter what, so we're forging ahead. The earlier good news that no cancer was in his spinal fluid was not a false alarm, but just a spot of sunshine in an otherwise dark week.
Dylan is home with us, but cannot return to school, according to the surgeon, until his entire course of therapy is done. We were hoping to lead a mostly normal life throughout this bout, but it may separate us as a family, depending on where we end up having treatment, and even if we stay in L.A. will prove a greater strain on us than we had thought with Dylan spending all his time at home.
So the bottom line is we're in for another tough slog, and can only hope that the side effects are minimal, and that SuperDylan will beat this cancer like he did the first time....
The latest (2/7, 2 p.m.): Dylan is home! He's making blueberry muffins with mom. His back hurts but is manageable with Tylenol.
The latest (2/7, 7 a.m.): Dylan is doing alright and may even come home from the hospital today or tomorrow. We're still waiting on lab results that will tell us if this is Leptomeningeal Disease and will get second opinions from UCLA, Duke, Sloan Kettering and Cedars also. He has a little pain but less than expected; is on Tylenol and morphine and ready to get out of there. We also don't have MRI results that should tell us if the doctor got all the tumor out. Stay tuned....
The latest (2/6, 8 a.m.): Dylan and mom had a rough night because of the pain from the incisions in Dylan's back, but he is doing well and will be allowed to eat today. Good news: The tooth fairy came and Dylan is the richest kid in the unit! An MRI today will confirm the tumors are history. We'll update as we get the results.
The latest (2/5, 1 p.m.): Dylan is out of surgery from the biopsy. We will be in the hospital for 4-5 days as Dylan recovers. He has to lie flat on his tummy, which won't be easy to keep him down! The doctor feels that it was indeed tumorous growth, but that he got all the tumor out. So this still could be cancer and still could be the Leptomeningeal Disesase we feared. It will take a few days to get the results, so we won't know for sure what's going on until next week some time. For now, we're just hoping that things go smoothly and that Dylan recovers quickly. We are in the PICU at Cedar's Sinai, 6th Floor, North Tower, Bed 8. Also, the doctor was concerned about Dylan's loose tooth (his first) so they yanked it when he was out! The tooth fairy does come to hospitals, the doctor told us, so Dylan will be a few bucks richer along with a few tumors poorer!
The latest (2/4, 8 a.m.): Dylan passed his yellow belt test! Let's hope he kicks butt on his other big test tomorrow, too.
The biopsy will tell us for sure what we're up against. He is supposed to be hospitalized for a few nights, however this may change depending on the biopsy results. Thankfully it is at Cedars, which is nearby.
Thanks to everyone for my birthday comments yesterday. You all know what I'm wishing for.
The latest (2/3, 7 a.m.): Today is my birthday!
Dylan has his yellow belt test in karate today. Big brother Chandler has been helping him learn his blocks, stances, and the five pointed palm exploding heart technique.
Chandler is Star Student of his class this week! He gets to tell them all about himself and feel generally special. He needed that just now with the latest news about Dylan.
Dylan went in for a preliminary visit to Cedars Sinai before his biopsy Thursday. He is supposed to be hospitalized for a few nights. (This is what we were told the first time, though, when we spent many weeks in the hospital.) Thankfully it is nearby.
The latest (2/2, 7 a.m.): Dylan and I spent the weekend on our backs. I had the latest cold that's been going around and Dylan had complications from his spinal tap where he had to lay flat for four days straight. He is just now starting to feel better. We still have the biopsy coming up on Thursday to determine if and what kind of tumors are growing in his spine.
We finally bit the bullet and bought a minivan from a friend. Mommy is officially a soccer mom! You can also read her updates at a new Caring Pages she just set up: http://www.carepages.com/carepages/SuperDylansite
The latest (1/31, 4 p.m.): Dylan has had spinal headaches since his procedure; they are so strong that if he sits up for more than a minute or two, he throws up. He's been lying flat on his back through the day yesterday and a sleepover (his first!) last night and all day today. His friend Sean was so nice last night, playing as Dylan's doctor, feeding him, giving him water, wrapping his head in a Japanese samurai headband, changing out the DVDs. They sat up talking until 11 p.m. :)
The latest (1/30, 1 p.m.): Thanks everyone for your emails, comments, messages, and phone calls full of comfort, shared sorrow, encouragement and offers of spiritual engery, thoughts, prayers and time helping out with our family's needs. Dylan is sore from the spinal tap, but otherwise doing well. He is not feeling bad from the recurrence, is not in the hospital, but home watching TV, and got a great review from his teacher today during an IEP meeting. She said he was a model student and she wishes all students were more like him! :) Dylan happens to have a severe ear infection along with everything else (Dad is also sick, but ignoring it to help him while he stays home from school), so he's on pain meds and antibiotics. We are all taking the good news below to heart for the weekend and girding ourselves for next week.
The latest (1/29, 8 p.m.): GOOD NEWS! The spinal tap showed NO cancerous cells. We got results sooner than expected. However, they still will perform a biopsy of the growing masses they see in Dylan's spine next week. We aren't out of the woods yet, but the dense thicket is starting to clear.
MORE GOOD NEWS! Chandler got in to the Gate program for gifted children at school. Like father, like son. :)
The latest (1/28, 4 p.m.): We have ominous and shattering news to report. Dylan has had a relapse; the cancer is back.
Though I reported that Dylan had a clean MRI scan on Friday, the MRI was clean as far as the brain scan goes, which is what I posted Friday and over the weekend, but the doctor was not too sure, apparently, about the spine. On Monday, just as I was leaving for work, the doctor called to tell us the spine was not clean and, having had a specialist look at it, he is pretty certain the cancer has metastasized and that there are a few small (.5 cm) tumors growing. Dylan is not exhibiting any symptoms and seems happy and carefree; he is still in school and karate and living life like normal. We went out and met with the doctor and the head nurse at Children’s Hospital Monday, looked at the scan and went over the treatment.
The next steps are to make absolutely sure it’s cancer with a spinal tap tomorrow (there’s a tiny, 2%, chance it is not); then to treat him with chemo and radiation: Chemo for two months, starting next week (drugs this time are Temodar, Cytoxan, Irinotecan, and Carboplatin), and then another 6 weeks of low-dose radiation (involving driving out to Children’s Hospital every day, a 90 minute commute round trip for a two minute procedure). So about 3 months from now we should have a better idea of what the future holds for us (that will also be right around his 7th birthday).
Relapse is every cancer parents’ worst fear, and is harder to take than the first cancer, because now you know how horrific the ordeal can be, and that the odds of survival are smaller now. The good side of this is that we caught it early, that it’s not in the brain, that it is treatable, and that many relapsed kids have had this particular treatment and have been cured. Plus, those of you who know Dylan know he is a fighter, has a great attitude and is very bright. And we really have the best doctors in the world for kids’ cancer.
We avoided radiation in his first bout, because the side effects are irreparable and can damage Dylan’s intellect. So far, most of the side effects from surgery and chemo in the past are things we can overcome (stroke, hair loss, mouth sores, secondary infections, etc.).
Though he will lose his hair again, and will need blood and platelet donations again, this is a lighter chemo treatment: he will not get mouth sores, will not suffer more hearing loss, and will only need a couple of overnight stays -- happily most of this can be done outpatient -- so our family won’t be strained as greatly as in the first episode. We aren’t sure yet how much damage the low-dose radiation can cause; this is our greatest fear right now.
The head nurse gave us some priceless advice on how to tell Dylan. When we told him that the “bad guys” were back, but not in his head, and that we wouldn’t be in the hospital as much, and that the doctors and our church and school and work and our other friends would help fight this battle, he cried -- we all did -- and asked some questions to which no one has any answers, though we tried our best to, and then he bowed his head and accepted the reality. We went out to dinner with dear friends to let the boys know we weren’t going to stop living our lives because of this.
Yesterday we met with the neurosurgeon at Cedars Sinai. He will perform a few preliminary operations that will be preparatory to chemo and radiation therapies (putting in a new port, and what’s called an Ommaya Reservoir). He cannot remove the tumors because they are likely too small to see with the naked eye. He mentioned Leptomeningeal Disease which, if that’s what it turns out to be, means very bad news.The spinal tap should help us determine if that’s what Dylan has. We get that tomorrow and hope to have results some time Friday. We are shocked and scared, but trying to stay positive.
Thanks to all of you who have already sent notes of support and love; brought or sent meals and gift baskets full of toys; and the offering of blood, platelets and funds (we have re-opened the SuperDylan fund); they are greatly appreciated. Please keep us in your thoughts and prayers, because we do believe this has healing power.
The latest (1/27, 6 a.m.): We received shattering news yesterday.
Dylan’s MRI was clean as far as the brain scan goes, which is what I did post Friday and over the weekend, but yesterday just as I was leaving for work, the doctor called to tell us the spine was not clean and, having had a specialist look at it, he is pretty certain there are a few small (.5 cm) tumors growing.
Relapse is every cancer parents’ worst fear, and is harder to take than the first cancer, because now you know how horrific the ordeal can be. The good side of this is that we caught it early, that it’s not in the brain, that it is treatable, and that many relapsed kids have had this particular treatment and have been cured. Plus, those of you who know Dylan know he is a fighter, has a great attitude and is very bright. And we really have the best doctors in the world for kids’ cancer.
The short term next steps are to make absolutely sure it’s cancer with a spinal tap tomorrow (there’s a tiny, 2%, chance it is not); then to treat him with chemo and radiation: Chemo for two months starting next week (drugs this time are Temodar, Cytoxan, Irinitecan, and Carboplatin), and then another 6 weeks of low-dose radiation. So 3-4 months from now we should have a better idea of what the future holds for us (that will also be right around his 7th birthday).
We avoided radiation in his first bout, because the side effects are irreparable and can damage Dylan’s intellect; we aren’t sure yet how much damage the low-dose radiation can cause. So far, most of the side effects from surgery and chemo in the past are things we can overcome. Also the brighter side of this is that though he will lose his hair again, and will need blood and platelet donations again, he will not get mouth sores, will not suffer more hearing loss, and will only need a couple of overnight stays – happily most of this can be done outpatient – so our family won’t be strained as greatly as in the first episode.