MOST RECENT UPDATES ARE ON TOP
The latest (1/23, 6 p.m.): DYLAN'S MRI WAS CLEAN! These are preliminary results and the doctor will have final results Monday.
The latest (1/23, 6 a.m.): Dylan has another MRI this afternoon at 1 p.m. Don't think we'll get results until Monday, though. Please keep him and us in your thoughts and prayers. This is his 6th since surgery in July '07 and the first 5 were all clean.
He had his annual checkup this week at the pediatrician, and we learned that his growth has slowed tremendously. Growth hormone was suggested, but this also makes cancer grow. The way my wife put it to the doc was that she'd rather have a short son than no son.
He also has another eye surgery due soon to straighten out his eyes. He has little to no depth perception currently.
Chandler is sad to have lost Wicked, which left L.A. and moved to S.F just after his birthday. However, we got him tickets to all the musicals playing this year at the Pantages; this Saturday he's going to see Phantom of the Opera!
The latest (1/11, 5 p.m.): School starts again tomorrow. Huzzah!
Chandler had a great birthday, with many Oz/Wicked gifts, Rock Band, Music and Family Games on the Wii and one more time to see Wicked at Pantages before it leaves.
The boys journaled stories of their grandfather's passing, playing with grandmother, enjoying Christmas booty, travelling all day on New Year's Day, and Chandler's birthday.
I have pics in my December 2008 and January 2009 albums and some video in MyVideos. I dropped my Christmas-themed profile and changed my profile playlist to all classical.
Dylan has an MRI coming up on the 23rd at 1 p.m. and another eye surgery soon. We'll update as we get information. Jana's dad's passing is still affecting us all....
The latest (1/6, 7 a.m.): The boys have this week off, then school starts back on Monday. We've kept up pretty well with the reading, writing and 'rithmetic over the break. The boys came have journaled stories of grandfather's passing, playing with grandmother, enjoying Christmas booty, travelling all day on New Year's Day, and Chandler's upcoming birthday. Dylan is reading/writing now, and has his first loose tooth. Chandler is turning 9 on Friday, and we're going to see Wicked that night -- his fifth time!
The latest (12/25, 1 p.m.): John Chandler, Jana's dad, died yesterday. (Here is his obituary from the local newspaper.) Dylan did not understand, but it seemed to hit big brother Chandler pretty hard. Though it has been a bittersweet Christmas this year, it was also a relief and blessing to not have to go through any more suffering on John's or his family's behalf. He was a great man in his community, and in my estimation, and he will be sorely missed. His funeral will be on Sunday in Nashville. Please keep Jana and her family in your thoughts and prayers, especially her mom, who will be living in their home all by herself. Jana's older siblings also live in Nashville and will be around, and their church family will also lend support, but things will never be the same again for any of them.
The latest (12/20, 6 a.m.): Vacation. All we ever wanted. School's out for winter. In one week, I've seen Chandler play the lead & superstar in his kids' production of Wicked, a couple of parts in their school's production of The Wizard of Oz, and in his school Holiday Show, and Dylan in two holiday shows. Plus Dylan is "Star Student" in class next month and has to give a presentation on himself. Can you tell we live in Hollywood? Here are some videos! We leave for Nashville tomorrow to meet up with Jana, who went there a week earlier than planned, to help her mom. Her dad's lung cancer is worsening. Please keep Jana and her family dad in your thoughts and prayers. After all she's been through with Dylan, this is really tough on her with her dad. And the boys, all three of us, miss Mommy. Thanks to the moms from school who helped out with the boys, so I could still work. God bless you, every one. :)
The latest (12/13 8 p.m.): Chandler was a superstar in his kids' production of Wicked, and Dylan had one of two holiday shows last week. Dylan also has his first loose tooth and is working it like a fiend. Jana is heading home tomorrow, a week earlier than planned, to help her mom. Her dad's lung cancer is worsening. Please keep Jana and her family dad in your thoughts and prayers. After all she's been through with Dylan, this is really tough on her with her dad.
The latest (12/1, 8 a.m.): THIS IS MY LONGEST UPDATE EVER! We thoroughly enjoyed our all-expenses-paid Make-A-Wish trip to Hawaii for Thanksgiving! Dylan chose Hawaii because he so enjoyed our last trip to Oahu for Christmas 2006. [View pics here on MySpace.] It all started last Saturday when the local MAW office gave us a bon voyage party at Gladstone’s in Malibu. We had some friends join us to send us off with a Californian style luau. We flew to Honolulu, Oahu, Tuesday and the flight was one of our best as a family (it probably helped that Mama Mia was the movie, so big brother Chandler was happy, and Dylan watched Ben 10 DVDs the whole way). We were greeted with sweet-smelling tuberose leis and escorted to our rental car. They put us up at the ResortQuest Waikiki. We were glad to stay in Waikiki because we were not able to see that part of the island on our last visit, because parking was impossible. Our hotel was right on the beach. The warm air and beautiful view from our balcony helped the aloha spirit set in quickly. The only negative thing one can say about Waikiki is the omnipresent cigarette smoke and butts from Eurasian and American Midwest tourists. After seeing my son go through cancer, this was not only disgusting, but scary. We avoided these people like the plague, though they even lit up on the beach, ruining the fresh air for everyone. Boo! Just after we unpacked and had a light lunch at Tiki’s, a great restaurant next to the hotel, we went to an authentic Hawaiian luau (Germaine’s), where we rode a bus there. The tour guide (“cousin Mark”) led us in song and introductions to our fellow partiers/cousins (we are all cousins in Hawaii). We watched them unearth a pig that had cooked underground all day (the meat eaters in the family loved it: after befriending so many animals at farm camp last summer, Dylan has decided to become a vegetarian). We also had lomi lomi salmon, poi, and haupia for dessert. Then we watched the various Polynesian dance styles on stage and Chandler got up on stage with a lot of kids to learn how to dance a hula (Dylan was asleep by then). Wednesday we ate our complimentary breakfast feast by the hotel pool and then hopped in the rental car for the Dole Plantation, where we made our way through the world’s largest maze, took a train tour of the plantation, and sampled pineapple ice cream. They also (mysteriously) had a koi pond full of fish that the boys enjoyed feeding. It was a true feeding frenzy. We made our way to the north shore next, to visit the luxurious Turtle Bay resort. The General Manager of the resort graciously allowed us run of the place (thanks, Bob!), since non-guests are not normally allowed in the pool, but Dylan wanted to revisit his favorite place on the island – their water slide. We also snorkeled on their beach and ate in their peerless restaurants, and mom got a massage. To see how beautiful Turtle Bay is, check out Forgetting Sarah Marshall, which was largely filmed at the resort. Thursday we took the Atlantis submarine ride to view the reefs and sea life below the surface. Mom fought back her seasickness and we all saw tons of colorful fish, two sea turtles and three sharks! The Atlantis is the world’s largest tourist submarine (but it runs on batteries to be “green”) and we also saw the world’s largest mosaic, which runs up the side of one of the hotels here. And mom never even got sick. It was a Guinness World Record trip! Once we got back to Waikiki, we spent the afternoon at the beach and the hotel pool, then went to world-famous Duke’s for our Thanksgiving dinner. Dylan unfortunately fell asleep because we couldn’t get early enough reservations. The food was delicious (turkey, stuffing, garlic mashed potatoes and pumpkin pie: yum!). Dylan had a cough before we left, but it worsened, so on Friday we sadly had to cancel a deep sea fishing trip to allow him to rest (were supposed to leave at 5 am); but we did have some activities: we ate breakfast on the beach and played on the wall that breaks the waves. Then we shopped for Hawaiian shirts and a dress for Mom, and Dylan also got himself some Pokemon cards as a half-birthday present. We drove up to Diamond Head, a dormant volcano and lay in the grass at the bottom while mom ran up to the top and back down (show off!). We ate at the local Cheeseburger in Paradise restaurant, where we had 5-napkin burgers, with mud pies for dessert. Dylan’s cough worsened in the afternoon, and mom thought it sounded much like the RSV infection Dylan had on his last round of chemo at Children’s Hospital. We took him to a local hospital for x-rays and mom’s intuition turned out to be correct. He had RSV again and an ear infection to boot, but nothing so serious that we couldn’t go back home. Getting back to the hotel was an adventure, as the entire area had been blocked off for a parade down the main beach strip where our hotel is located. We had to go down two one-way streets the wrong way, one of them in reverse (!), but made it back just in time to watch the parade and fireworks from our balcony as we ate pizza. Since Dylan was not feeling up to par, we had to also cancel surf lessons on Saturday (we were concerned about his balance and getting more water in his ears), and so we took it easy on Saturday, got Dylan’s antibiotics, and hung out in the room and by the pool until it started to rain heavily in the afternoon and for the rest of the day. The rain made it easier to pack and think about leaving. We had dinner back at Tiki’s again and got to bed early. We flew home early on Sunday, sad to leave, but happy to be back home, too. We had a blast, and we all had so much to be thankful for this year. Mahalo, Make-A-Wish! And Aloha everyone!
The latest (11/23, 8 a.m.): We had a FEAST at Gladstone's yesterday, compliments of the Make A Wish Foundation, who were wishing us bon voyage and aloha as they are granting our wish trip to Hawaii. We were able to invite four other families and we all ate TONS of free peanutes, clam chowder, sourdough bread loaves, salad, burgers or fish tacos and chocolate cake and watched seagulls, dolphins and other beach wildlife (including the kids). We played on the beach for a while afterwards. We leave Tuesday for Oahu, and wish you all a Hau’oli La Ho’omakika’i! We'll take lots of pics. :) Please consider patronizing Gladstone's, who gave Make A Wish a huge discount that they normally don't get, if you live locally. Let them know Dylan sent you, the kid who had the big party in the back room on Saturday afternoon. And as we come to the end of the year and you're considering what charities to donate to, the Make A Wish Foundation not only takes dollars, but also air miles, which makes trips like ours possible. Thanks for considering this worthy cause.
The latest (11/17, 8 p.m.): Dylan's class heard from a safety instructor today, who warned the kids never to stick their heads out the car window. Dylan had to ask, "But what if you need to throw up?" That's my boy. Meanwhile, big bro Chandler took a test today for the advanced GATE program at school, the little smarty pants! We are also all getting excited about our Thanksgiving vacation trip to Hawaii courtesy of the Make A Wish Foundation! :)
The latest (11/9, 7 a.m.): The boys had a wonderful Halloween, we were so glad to all go trick-or-treating together as a family.
The latest (10/29, 8 p.m.): Although initiated by a shaken-baby brain injury case, the peition to change the way brain injuries are categorized will help kids with brain tumors, like my son. This was on the Today Show this morning. Please consider signing the petition here:
You can see the girl's story that triggered the petition and read about their interesting open source approach to medical records and information by visiting other parts of the site.
The latest (10/26, 7 p.m.): The family all went to a campground near Idylwild called the Ronald MacDonald Camp For Good Times. A pediatric brain tumor support group called WeCan sponsored the event. Click here to see some photos from the event. Click here for more information about WeCan. We love this group. They have been so great to Dylan. Please consider making a donation (click here), so they can keep having events like the camp. For Halloween, Chandler is going to be a devil and Dylan is going to be a superhero. Chandler also recently got four more costumes (and props!) for his plays.
The latest (10/22, 11 a.m.): Dylan had an eye appointment today. He will need a couple more eye surgeries, scheduled for early November. They are in-and-out and he only has mild pain the day after, so we are hoping things all go well and this is the last surgery he'll need.
The latest (10/13, 5 p.m.): DYLAN'S MRI WAS CLEAN!!!
The latest (10/11, 4 p.m.): We bought the boys' Halloween costumes today: Chandler is going to be a devil and Dylan is going to be a superhero. Chandler also needs to buy four more costumes (and props!) for his plays. Both boys also signed up for Marathon Kids, where they walk or run a little every week to total 26.2 miles by March. More info: http://www.marathonkids.org/index.asp
The latest (10/9, 8 a.m.): Jana's dad is doing really well. He had a CT scan and the results showed ~90% reduction in the size of the tumors. The oncologist was amazed!
The latest (10/3, 9 p.m.): Dylan just showed me he learned how to shuffle, side-to-side, like in basketball practice. A year ago he was in a wheelchair.
The latest (10/2, 7 a.m.): Dylan's big brother Chandler came home last night with a blue ribbon and diploma after having been named citizen of the month for his class for September, the first of the year! Dad is proud as all getout!
The latest (9/15, 8 p.m.): Dylan's ear and eye appointments were OK. He was fitted for hearing aids (the only permanent side effect of chemo was hearing loss). And he'll need another eye surgery (a side effect of the stroke he had during surgery crossed his eyes). He has another checkup in a month to determine when the surgery should be and to pick up the hearing aids. His next MRI is also in October. Dylan was recently chosen as an "ambassador" to the Cure Kids Cancer program (part of the Children's Miracle Network). Here is Dylan's PSA commercial he recorded for an event at Six Flags September 6 and 7 with Marla Maples and other big-hearted celebrities, from Marla's site. Thanks, Marla!.
The latest (9/14, 4 p.m.): Dylan's hair is coming back in, looking a lot like it did before with tight curls, sandy blond with highlights. See this page for a picture from Sunday. He has ear and eye appointments at the hospital tomorrow. Hoping for good news on both. We also have an MRI coming up soon.
The latest (9/6, 3 p.m.): Chandler and Dylan had their first week of school this week. They are both doing well and LOVE their teachers. Chandler got his STAR testing scores back and scored "Advanced" in both language (411 out of 600) and math (573 out of 600).
The latest (9/1, 8 a.m.): Jana and the boys are home. I put a few pictures up on the Pics page. They went to Nashville in August to visit Jana's dad who has cancer and is going through chemo.
The latest (8/21, 12 noon): The boys called me today to tell me they ate pancakes at a restaurant where you cook them yourselves on a griddle built right into the table. Dylan had chocolate chips, Chandler had M&Ms, Mommy had banana slices and Aunt Linda had blueberries! They also went to the toy store where Dylan got a little dragon and Chandler got a little wizard. I sense magic afoot. They're all heading out to the lake house to do some boating and fishing!
The latest (8/17, 8 a.m.): Jana's dad has cancer now. Jana and the boys are in Nashville with him until the end of the month. He has started chemo and is experiencing mouth sores. Jana is helping around the house, and her dad told her that many of the things she said to him during Dylan's illness are helping encourage him now (and he quoted them to her!). The boys are having a lot of fun with various activities and are working on their Southern drawls.
The latest (8/1, 10 a.m.): Chandler's performance in Legally Blonde (as Warner Huntington III) was stellar! All the parents went out of their way to congratulate him on his performance.I hope to be able to post some video soon..... We also reached a serious landmark recently: A year ago, July 29, 2007, Dylan underwent surgery to have his brain tumor removed and we began a long journey of struggle and triumph. We are grateful and thankful for the love and support shown us through the past year.
The latest (7/27, 4 p.m.): This week, Dylan dropped out of special ed summer school, turned on to Wii Fit, and tuned in to fitness camp, attending with his new best pal and brother from another mother, Wolfie -- better than OT for balance and rehab! Chandler is in acting camp, the only boy in Legally Blonde, the musical. Male lead role is a given. Surrounded by pretty girls all day long.... Smart kid. :) The grand performance is this Thursday -- Omigod! Speaking of acting, we picked Chandler's headshot and are getting it printed. The set was taken at Martha's Vineyard, where we summer every year, (see my album titled "Chandler's headshots" photos by photographer Max Bossman -- we picked the first one, as did many of you; the current myspace profile pic was the runner up). Just returned from Martha's Vineyard and had a great time. Dylan took farmer's camp, milked goats, fed pigs, turkeys, geese and chicks. Chandler went to an acting camp there where they write a 15-minute play based on the kids' interests and perform it at the end of the week.
The latest (7/16, 6 a.m.): DYLAN HAD ANOTHER CLEAN MRI! Dylan is in summer school this month, one for kids with special needs. His enthusiasm and sense of humor are already making a mark on the teachers. Chandler is in acting camp at Adderley, the only boy in Legally Blonde, the musical. Jeez. Just returned from Martha's Vineyard and had a great time. Dylan took farmer's camp, milked goats, fed pigs, turkeys, geese and chicks. Chandler went to an acting camp there where they write a 15-minute play based on the kids' interests and perform it at the end of the week.
The latest (6/29, 5 p.m.): Dylan is improving every day and we're working hard on getting him caught up on the school he missed. Big brother Chandler passed his yellow karate belt test! We head out to our annual vacation to Martha's Vineyard for the fourth this week. Many pics to come....
The latest (4/30, 8 p.m.): Dylan is being featured in a new commercial for a partnership between Cure Kids' Cancer and Six Flags Magic Mountain. We're going to Six Flags to shoot a commercial with him tomorrow, then going some time next month to New York so he can be on the Today Show!
The latest (4/25, 10 a.m.): We're faced with the decision of surgey for Dylan's eyes or trying to strengthen the muscles with an eye patch. We're hoping the patch does enough, if his eye muscles are as strong as the rest of him, this will be no sweat for SuperDylan. Plus I hear pirate fashion is back in this season. :)
The latest (4/20, 1 p.m.): We all went camping at Leo Carillo. Chandler and Dylan cooked their own franks and smores over the campfire and we played games, told scary stories and went to the beach and found some shells to bring home as souvenirs.
The latest (4/16, 6 a.m.): Dylan went to his kindergarten class so he could compare to his preschool and pick. It just so happened that it was the day for computer class so Dylan think kindergarten rocks! (that's my boy)
The latest (4/14, 8 a.m.): Daddy and the boys went shopping for Mommy's birthday yesterday (her bday is tomorrow, tax day). The boys hit the pool in the 90 degree heat over the weekend and, when the sun went down and things cooled off, we went to the playground each night where Dylan is doing the monkey bars again! We had some misdirections at kindergarten, so we decided to take Dylan back to his preschool. He has visited his class a couple of times and we're going to gradually reintroduce him to school. A day or two this week, then 3, 4 and 5 times each week after that (and then the school year will be over). I was talking to a friend yesterday, who knows I am a filmmaker at heart, and we wondered at how I haven't been taping anything. The last video we have of Dylan is his preschool graduation. That may be the next video I take of him: at this year's graduation, a full year and a few lifetimes later.
The latest (4/5, 6 p.m.): Dylan and family went to an event today to educate parents with kids who have cancer about how to navigate the waters of getting support and therapy from Regional Centers and, especially for us, the LAUSD. The sponsoring group was WeCan: www.wecan.cc While the parents were learning, the kids, siblings included, wrote and reheased a play for the parents, assisted by some young actors and writers who donate their time. As you can imagine, our little ham Chandler took over the direction of his segment and stole the show. Dylan also played a part: a boy asleep in the hospital, who dreams of an unusual trip to Oz,where the "Clint" (read: "Wizard") of Oz, played by Chandler, helps a boy find his voice, a guy find some pizza, and another guy find his TV on-switch (so he can watch Ben 10 -- Dylan contributed that, the Oz stuff was all Chandler). Chandler made a lot of new connections in the acting industry and many legs were broken.
The latest (4/1, 11 a.m.): The last month of being together as a family have been heaven. Dylan's hair is growing back in and soon, he's just going to look like any other kid with a buzz. It's strangely bittersweet to know that his scars and shunt won't show anymore. It's a constant reminder of our suffering and triumph over this disease, but also causes people to stare which makes us all a little uncomfortable. Dylan has been going out to restaurants, parks, playgrounds and we will be heading to the beach this weekend with him! He's having trouble weaning himself from the television that was often his comfort during tough times in the hospital, but will be starting school today, so that should occupy his imagination. Dylan has chosen to visit his old preschool teacher's class, though he is also welcome to attend the kindergarten class he would have been in this year, with the same teacher he'll have next year. He may go to both for the rest of the school year. We'll see how he feels.... Big brother Chandler also got used to being an only kid and is having to make room for brother again, just like when the little guy was born. We're getting him involved in another musical at the Adderley School (his performance from High School Musical just hit 200k views on YouTube), and he wants to get an agent. Anyone know a great kids' agent out there? Last, in case you didn't read it last week, Dylan had his third checkpoint MRI last week and it was clean. Yay!!!
The latest (3/26, 12 p.m.): Dylan had his third checkpoint MRI today and it was clean. Yay!!! Today is also day 30 after Dylan was discharged from the hospital, when he is basically able to do anything: have visitors, eat out, go to movies, the park, the beach. Time to celebrate!
The latest (3/19, 7 p.m.): Our cat Barrington died today. We are all very sad; I am out of town and bummed that I can't mourn with the boys and Jana in person. :( On a happier note, Dylan had a checkup today and did great. He played hockey and was running to get the ball. He hasn't really run until now, not since July. His balance and speech are getting better each day. My in-laws are in town and have been a big help around the house. They took Chandler to see Wicked (his fourth time!) last night and tonight are seeing The Glory of Easter at the Crystal Cathedral. Dylan saw the Glory of Christmas with us last year and wanted to know if there's a Glory of Halloween. :)
The latest (3/13, 8 a.m.): Our cat Barrington has cancer now, unbelievable. We aren't sure how much longer we'll have him around, or how much treatment we can afford. Maybe sensing our impending loss, the boys took out a fish tank that Chandler got for his birthday, and went with Mommy to buy a fish (dubbed "Fred Reddy"). Now the boys outnumber the girls 5 to 1 in our home!
The latest (3/11, 6 p.m.): Our cat Barrington came home from the vet today. They are still running tests on what may be wrong with him. But at least all our boys are home. Dylan wanted to order dinner from the "Pizza Department" to celebrate!
The latest (3/9, 3 p.m.): We have had a great weekend. Chandler had his school talent show Friday and Saturday nights; and we all went to a playground yesterday and a big hike on Sunday (see my March 2008 album for pics). We had to hospitalize our cat, Barrington, who had renal failure, but who is doing well. Another boy in the hospital....
The latest (3/5, 8 p.m.): Dylan went back to the hospital for a checkup. We were told that he is ready to go back to school (!) in a couple of weeks, can go out to play in parks, and can even go to the movies if it's a matinee and not too crowded. The doctor said he definitely needs therapy and to keep up our search for excellent resources on the West side. He visited a therapy place yesterday and, while Mommy was digging through her purse for her keys, he quoted the entire Over the Shoulder Organizer infomercial to her! Clearly he has been watching too much TV.... Dylan and Chandler helped make cookies last night while Daddy was away on a business trip. He came back with two Oscar statuette replicas for the boys that say WORLD'S GREATEST SUPERSTAR on both.
The latest (3/1, 8 a.m.): Having Dylan home this week has been wonderful, and his nightmares have stopped now that he is off the nasty chemo and not being awoken through the night for vital signs (though he continues to talk in his sleep, as he has always done). We're seeking physical, occupational and speech therapists on the West side to avoid the often dreadful commute to east L.A. for what is non-specialized treatment. Any referrals you can offer would be appreciated. Please use our contact form to connect us. While we're going to miss CHLA's peerless staff on floors 4 and 6, we are glad to not be separated as a family any more. It really stretched our family to its limits. Learning how to live together again has had its challenges, but we have had some great moments already. Dylan is walking again, eating like a horse, and loving doing things at home with Mommy like helping cook, reading books, playing with all his toys, and going to the park. Both boys are their stubborn, candy-movie-loving, beautiful selves again, and it's strangely endearing to hear them yelling insults at each other and fighting (boys will be boys). Eating meals together, playing Wii, pillow fights, bedtime stories, bath time, even watching Idol together has been sublime, and made us grateful for the little moments we often overlook.
The latest (2/27, 11 a.m.): Dylan didn't have an MRI after all -- they got all the way out there to learn that it's too soon after his RSV virus that he had to perform it. So they ran other lab tests that they needed to do anyway, but we won't have the third MRI for a few more weeks. One good thing is the doc cut back on Dylan's meds after seeing his numbers, from ten pills a day to just one! Recent news (2/25, 4 p.m.): HOORAH! Dylan just arrived home after a long morning of waiting to be released. Later big brother Chandler will be home and we'll all be together again for the first time in weeks! They did say Dylan was low on potassium, so I ran by the FIM cafe and grabbed some bananas. He is happily watching Scooby Doo and Pokemon (some things never change) and has a healthy appetite -- he asked Mom to provide him a selection of foods from which his royal highness would choose his next snack (just like in the hospital, where he was spoiled).
:) It's time to issue another HUGE thank you to everyone who has put energy toward Dylan's healing and the maintenance of my family's stability. Your prayers, thoughts, messages, comments are all greatly appreciated. You donated blood, money, food, gas; you gave us toys, games, action figures; you visited us in the hospital, had Chandler over for playdates and sat with both kids so Mom and Dad could go out to dinner once in a while. For all that you have given us, we are eternally grateful and know that it all contributed to our son being alive and kicking today.
The latest (2/23, 9 a.m.): Dylan is confirmed to come home on Monday! We wish we could have you all over to celebrate, but he can't really have visitors for the first 30 days. We will be so glad to be together again as a family after this final round of chemo which has lasted more than 30 days.
The latest (2/21, 7 p.m.): They have put Dylan back on morphine (he had been having withdrawal symptoms -- the morphone was to numb the pain of mouth sores, a side effect of chemo). He is eating again, mostly Danimals. They will just have to wean him more slowly, and that means he'll be in at least through the weekend. Let's just hope he doesn't contract another hospital bug before he can get home. We have been through a MAJOR cleanup project at home, in preparation for Dylan's discharge. We have to have his environment as germ-free as possible and we will have to keep it that way for the first 30 days after discharge, because he is still somewhat immunocompromised. We need to clean all the windows, tubs, showers, floors, all clothes, sheets, blankets, every toy, game and stuffed animal that he may touch or play with. We cleared the place of almost every extraneous thing so that we only have to clean the essentials. Jana's sister has been in town this week and it has been a huge help, as always, to have someone beloved to sit with Dylan while we did all this work.
The latest (2/20, 9 a.m.): Dylan was sick most of the night, vomiting and having diarrhea. We are hoping it's just withdrawal from the morphine and nothing more serious. We have FOUR cleaning women in our home today, executing a MAJOR cleanup project going on at home in preparation for Dylan's discharge. We have to have the place as germ-free as possible, and spent the weekend clearing out anything from the place that we didn't need to have around. Now we need to clean all the windows, tubs, showers, floors, all clothes, sheets, blankets, every toy, game and stuffed animal that he may touch or play with. We have window cleaners, carpet cleaners and four cleaning women coming over the next few days to get the place "BMT clean!" Yesterday, they moved Dylan down a floor since he was no longer testing positive for the virus he had caught, and no longer needs to be in the part of the hospital that deals with infectious diseases, and no longer needs to be in the BMT either (though he's next door, just in case). Still working on eating and drinking without pain swallowing. We hope to have him back home by the end of the week....
The latest (2/18, 8 p.m.): They moved Dylan down a floor since he was no longer testing positive for the virus he had caught, and no longer needs to be in the part of the hospital that deals with infectious diseases, and no longer needs to be in the BMT either (though he's next door, just in case). Still working on eating and drinking without pain swallowing. We hope to have him back home by the end of the week....
The latest (2/17, 7 p.m.): Dylan is off oxygen and GCSF. Two more milestones toward discharge. He needs to start eating and drinking more. We hope to have him back home by the end of next week.
The latest (2/16, 8 a.m.): Dylan just completed his last Ribavirin treatment for the RSV virus he got that gave him pneumonia. Phew! This is another major hurdle on the way back home. He needs to start eating and drinking more as they wean him off the morphine and other drugs, then he will get his passport to come back to the West side! Hopefully this will be within the next week -- most of you know what kind of appetite our muscular little SuperDylan has! Jana's sister, Aunt Linda "Binda" comes to town today. More cavalry!
The latest (2/15, 11 a.m.): Dylan has been in the hospital 25 days. How long, O Lord, how long?! :)
The latest (2/13, 9 p.m.): A friend came out to the hospital and sat with Dylan, and another friend took care of big bro Chandler while Mommy and Daddy met halfway between the hospital and home at Morel's at the Grove, which was a superb dining experience (which, if you know me, is something I enjoy with great, er, relish). It was nice to have a quiet, romantic meal (rose included, ahem) without the crowds and rush. As the quote below says, I can't imagine going through this with anyone else, and I'm glad we got to take a time out and just remember what the other looks like for a couple of hours. Thanks Renee and Steve! And thanks to all the other moms and dads and friends who have been taking Chandler after school, making lunches, praying for, asking about, and helping in so many other ways with our first son. Meanwhile, back at the hospital, they are starting to discuss Dylan's discharge instructions with Mommy, a good sign!
The latest (2/12, 8 p.m.): Dylan had a visit from another mom who plays the harp in a trio along with a flute and viola. They had to play in the hallway since he's in isolation, but because of that the whole floor got to enjoy the music. Dylan's blood cell counts are rising and he is doing a lot better than he was this weekend, he is breathing easier and has his color back, but he's still testing positive for the virus (more info below), so they're continuing the treatment and keeping an eye on him. He is wearing an oxygen mask to help him combat the pneumonia (see the Pics page). Saturday: Dylan was moved early this morning, because has the RSV virus in his lungs, so they need to put him in a "negative air flow" room (he has been in a positive one so far) and give him two treatments that are not normally prescribed but are in the case of someone so immunocompromised: one Synagis via IV that he got last night, the other, Ribavirin, which he actually breathes in, sitting inside two plastic tents (see a couple of pics of him in them in my new February 2008 album). It's not good for us to be in the room for the 2 hours (3x per day: starting at 6 am, 2 pm and 10 pm) when they administer the Ribavirin, since it can float around in the air and give everyone else the side effects from it (headaches, nausea, burning eyes) that Dylan will get. The plastic tents keep the airborne drug from escaping and getting around the room, but it invariably does.
The latest (2/8, 11 a.m.): Dylan's counts are up which is good news for the mouth sores, but will make the pneumonia symptoms worse. They are going to drain Dylan's lungs today because the pneumonia is creating a lot of fluid. If they don't do it soon, it can thicken and become more difficult to drain. However, the CT scanner that they need to guide their drainage surgery just went down after they had spent about an hour getting him ready to be transported from his isolation room. Thanks everyone for your concern. Keep an eye on this page for updates as I can get them. And please send up any thoughts, prayers, vibes for healing. Please consider donating blood and platelets in the next couple of weeks.
The latest (2/7, 3 p.m.): They will be removing fluid from Dylan's lungs tomorrow to analyze it better. His white blood cell counts are not high enough for them to operate yet, it's too dangerous.
The latest (2/6, 7 p.m.): Dylan is doing better. He just asked for a pushup popsicle. The first time he's wanted to eat in days! A great sign that things are turning up for the little guy. Thanks everyone for your concern. A second set of X-rays today showed a slight improvement -- and the congestion is just in his right lung, the other one is fine. He will not need a CT scan after all, unless he takes a turn for the worse. But the signs so far are pointing up. Earlier he was running a fever (they even packed him in ice today), but his temperature has come down. He is still on morphine for his mucositis (mouth sores), and so is sleeping a lot. Dylan's white blood cell numbers are going to start coming up soon, which will help with the sores, but which can also make the pneumonia symptoms a lot worse. Keep an eye on this page for updates as I can get them. And please send up any thoughts, prayers, vibes for healing.
The latest (2/5, 7 p.m.): Xrays came back and showed that there was a lot more fluid in Dylan's lungs than they had thought. Nevertheless, he is happily watching Spongebob and giggling. Though family is in town, Jana is heading back out there to just let him know she's there for him. Earlier: Dylan has contracted pneumonia and it is very serious and dangerous because he has no cells in his body to fight off the infection. Keep an eye on this page for updates as I can get them. And please send up any thoughts, prayers, vibes for healing. Dylan's grandmother "Mops" is in town and his aunt "Annie Banannie." Dylan's white blood cell count is zero and will remain there for a while. He is on morphine for his mouth sores. People entering the room have to wear masks, protective gowns, latex gloves and slip-on booties because his immunity is so low.
The latest (2/3, 8 a.m.): DADDY'S BIRTHDAY IS TODAY! My mom and sister come to town today. My ears are still ringing (and my eyes a little blurry) from watching two digital 3D movies last night. I took Chandler to the new U2 3D IMAX, and was amazed at the technology and, of course, the music and Bono's writing, which is peerless. Then we went to the Hannah Montana's Best of Both Worlds concert movie, also in 3D. Chandler is in a group that's doing the title song for the talent show at school -- he's playing Billy Ray Cyrus! Meanwhile back at the ranch, Dylan's white blood cell count is zero and will remain there for a while. He is on morphine for his mouth sores. People entering the room have to wear masks, protective gowns, latex gloves and slip-on booties because his immunity is so low.
The latest (2/2, 9 a.m.): Dylan woke up requesting morphine for his mouth sores. :(
The latest (2/1, 10 p.m.): It looks like Dylan's mouth sores will be coming on soon. My mom and sister are coming to town to help out. Dylan's stem cell transplant went well. Moving forward, we'll be dealing with side effects and waiting for his counts to come back up so he can go home. On this round, that can take 3-6 weeks.
The latest (1/30, 7 a.m.): Dylan undergoes the stem cell transplant today. They are stem cells they actually harvested from him a couple of months ago. This will help him recover from the extremely heavy dose of chemo he received. Please keep him in mind. The procedure is supposed to be at around noon. After that, it's dealing with side effects and waiting for his counts to come back up so he can go home. On this round, that can take 3-6 weeks.
He has already needed blood, and will be needing platelets also. Please consider donating platelets in the next couple of weeks.
Also, big brother Chandler lost two teeth (upper lateral incisors) on Sunday. I wanted to wait to get home and take a picture of him before sharing the news (see my profile pic).
The latest (1/27, 4 p.m.): The blood drive went well today. Thanks to everyone who donated. We still need platelet donations through the next few weeks (see the Blood page about donating platelets). Dylan's last day of chemo is today, then he'll have two rest days, and then the stem cell transfer operation. After that it's dealing with side effects and waiting for his counts to come back up so he can go home. On this round, that can take 3-6 weeks. Obviously we're hoping for 3.
The latest (1/23, 8 p.m.): Dylan is back in for his last round of chemo. Tomorrow will be the last time he'll feel good for a while. He'll need baths three times daily because his skin will be secreting the toxic chemo chemical that's he's being given. Our friend Renee is staying with Dylan tonight, and Mommy got to come home and sleep in her own bed. Our cat Barrington is ecstatic. This round involves a "stem-cell transfer," and will last anywhere from 4 to 7 weeks. Because his immunity drops so drastically, he is in isolation the whole time, not able to leave his room and not able to accept visitors. It is by far the most intense of the six rounds he has endured. Jana and I have returned to our schedule of her being there during the week and me being there on weekends and Mondays. Also, a blood drive in Brentwood (90049) has been announced for Sunday, January 27.
The latest (1/17, 1 p.m.): Dylan had a spinal tap Wednesday, the final results from pathology showed no malignant cells. Dylan will be back in for his last round of chemo (which lasts a whole month long) on Monday.
The latest (1/14, 3 p.m.): Dylan had a routine checkup today and only needed some platelets (thanks for continuing to donate everyone!). This weekend, Dylan said, "I'm kinda glad I don't have hair, because for one I can't get lice, for two nobody can pull it, and for three I don't have to wash it!" We joke that his hair is in Hawaii, because it's on vacation and it will be back in a few weeks. Dylan will be back in for his last round of chemo (which lasts a whole month long) a week from Monday, but for now we're going to enjoy him!
The latest (1/10, noon): Dylan is home now! They let him go because his numbers were high enough. He'll be back in for his last round of chemo (which lasts a whole month long) a week from Monday, but for now we're going to enjoy him as a family all together again! Dylan made it through this latest (5th) round of chemo without mouth sores. Chandler had a nice, but quiet and bittersweet birthday as we are all separated; he also expressed sadness tonight that he is having trouble fitting in at school. I think he's had to grow up ahead of time because of the situation and hope he can return to just being a kid soon.
The latest (1/5, 9 p.m.): I had to run Dylan back to the hospital for running a slight fever. He was readmitted and we'll probably be here a few days to ride out the side effects, mostly mouth sores. I took Chandler to see Wicked today (his third time to see it!), one of his Christmas presents to him, and changed my profile song to suit the mood.
The latest (1/4, 5 p.m.): Dylan had an MRI today, the second since we started chemo, and it was clean! One more round of chemo (the most intense, it will take up the whole month of February), and then we'll be done.... Big brother Chandler is sick, he was throwing up all night, and we're concerned that Dylan's blood counts are dropping and he's compromised immunity-wise.
The latest (1/3, 7 a.m.): Dylan came home last night. Finally! They're having a blood drive today at work. Not as many signups as last time, and the hospital needs it now more than ever. There's always a shortage around the holidays.... Dylan, Mommy and Chandler were literally heading out the hospital door at noon yesterday when the nurses stopped them and re-admitted Dylan for having an extremely low magnesium count, for which he could have a seizure, so we're glad they caught him before he left.
The latest (1/2, 9 a.m.): Dylan is coming home today, but the good news is tainted by the fact that he had a checkpoint hearing test and has shown significant hearing loss. The doctor said he may need hearing aids. I had feared this as he has been having trouble understanding me and pronouncing certain sounds that he was able to last month. Nearly every other aspect of chemo side effects go away: nausea stops, mouth sores subside, hair grows back, even the effects of the stroke Dylan sufferered during surgery can be overcome, but the cumulative hearing damage is permanent. Though Dylan is home, he'll soon be subject to the side effects, mostly mouth sores, from this latest round of chemo. We have to rush him back in at the slightest sign of fever, and keep him clear of any germs. We may not be able to manage the mouth sore pain as they seem to have been getting worse each time.
The latest (1/1, 10 a.m.): Dylan will not be coming home today; his blood count numbers went the wrong way. Maybe tomorrow. Chandler's favorite new present is his portable stage (really) and Dylan's is his new batch of Pokemon cards (he is also scary good at Connect 4). HAPPY NEW YEAR!!!
The latest (12/31, 4 p.m.): Dylan will most likely come home tomorrow if his blood count numbers are high enough. They were close but no cigar today. Mommy and Daddy took turns over the long weekend to get their house into shape, clearing out old toys, clothes and games and boxing up the Christmas decorations (sob).
The latest (12/29, 4 p.m.): Dylan has C-Diff, a common infection in hospitals, so is in isolation, which is nice, since there's no roommate, but is also awfully lonely. Mommy and Chandler went ice skating today and reserved the rink for Chandler's birthday party next month.
The latest (12/26, 10 a.m.): Dylan is back in the hospital for the fifth round of chemo. Dylan and Chandler had a wonderful Christmas, with tons of presents, family and food.
The latest (12/25, 3 p.m.): Dylan and Chandler had a wonderful Christmas, with tons of presents, family and food. Dylan got Pokemon cards galore and Chandler got his own stage to put on shows with. It's back to the hospital tomorrow, though, for round 5 of chemo. We'll have lots of games and movies to bring.... In case you haven't heard yet: Dylan is now walking! He is roughly at the stage of a 1-year-old, making 10-20 steps, shakily but strongly; having gotten to here from complete paralysis from the stroke he suffered after four and a half months of hard work (and setbacks by chemo and the related side effects). He will start his fifth cycle of chemo on Dec. 26.
The latest (12/22, 3 p.m.): Eric's parents ("Mops" and "Pops") are in town and have been taking the boys to shops, to lunches and dinners at fun restaurants, and to the movies. See the pics page for today's visit with Santa at the Third Street Promenade.
The latest (12/19, 8 p.m.): Dylan is now walking! He is roughly at the stage of a 1-year-old, having gotten to here from complete paralysis from the stroke he suffered after four and a half months of hard work (and setbacks by chemo and the related side effects). When a co-worker heard about our dilemma with Dylan, she told me about an organization here in L.A. for people in the advertising industry with family emergencies, aptly named the Advertising Industry Emergency Fund. After assessing our immediate needs, they are helping us cover our medical deductible, which resets January 1, which really takes a load off our minds financially. They also sent enough Ralphs gift cards to cover a month’s worth of food for three hungry boys and an overworked mom. As you’re deciding which nonprofits to donate to this year for tax purposes, please consider giving to the AIEF. Or at least shout out some praise. Their website is http://www.aief.org/ We’ve also spoken recently with the Make A Wish Foundation, who are trying to figure out how to appease Dylan’s Pokemon card mania. We are considering a trip to Seattle to the plant where they are made (and a side trip to do his next favorite thing, fishing, for salmon no less!); or if that won’t work out, a shopping spree at the local Pokemon card retailer, Aahs.
The latest (12/17, 1 p.m.): Dylan is now walking strong and steady across the room. He still has a ways to go, but is amazing everyone! He is roughly at the stage of a 1-year-old, having gotten to here from complete paralysis from the stroke he suffered after four and a half months of hard work (and setbacks by chemo and the related side effects). By the time treatment is complete (March-ish), hopefully he will be running again.
The latest (12/14, 9 p.m.): Dylan took his first steps, balancing himself determinedly, and walking about ten paces from Mommy to Daddy! Look out world; he's back! They let Dylan out early for the holidays. They have agreed to delay his next round of chemo until Dec. 26 so he will definitely be home for Christmas. He went with Mommy and Daddy to big brother Chandler's holiday show and class party -- Chandler got a soccer ball from his "secret snowflake" and Dylan got to eat lots of sweets. Everyone is remarking on Chandler's performing and at how tall Dylan is getting.
The latest (12/12, 8 p.m.): DYLAN CAME HOME TONIGHT! They let him out early for great behavior; Mommy learned how to do a lot of the therapies at home, and made arrangements for some outpatient therapy next week. They have agreed to delay his next round of chemo until Dec. 26 so he will definitely be home for Christmas.
The latest (12/9, 5 p.m.): Dylan enjoyed his day trip home today. He had some schoolmates over to help celebrate his half birthday -- they decorated holiday cookies and romped around the house. Chandler dressed up as Santa to pay the kids a visit and to let them all know they're on the nice list (but Mommy and Daddy made the naughty list!). We plan to keep Dylan in another week and bring him home for the holidays on the 15th. They have agreed to delay his next round of chemo until Dec. 26 so he can definitely be home and healthy for Christmas Day.
The latest (12/8, 8 a.m.): Dylan had a fun visit yesterday with the L.A. Kings hockey team. They signed a pennant and cap for him and he took a picture with their mascot Bailey the lion. Dylan continues to work really hard on his therapies (occupational. physical and speech) to help him recover from the stroke he suffered when the tumor was removed. We have been approved for a day trip, so we'll be bringing him home tomorrow morning, returning to the hospital by 8 p.m.
The latest (12/6, 9 a.m.): Dylan is working really hard at his therapies and enjoying himself. He woke up at 6, wanted to dress himself, eat and get started earning points for his next toy (he picks a toy on Wednesdays, bought with the points he earns in his various therapies (physical, occupational and speech). Big brother Chandler is going ice skating after school with some classmates!
The latest (12/4, 6 a.m.): Though we are delaying the beginning of the next round of chemo until Dec 26, so Dylan can definitely be home for Christmas, we have made the tough decision to readmit him to the hospital this afternoon for therapy (physical, occupational and speech). He will be on the rehab floor of the hospital which is his favorite part, and with the therapists he really likes. We may have him in all the way until the 26th, though Mommy is planning to watch the therapy and see if she can't recreate it at home starting in mid-December.
The latest (12/1, 9 p.m.): Dylan got to see big brother in the school play on Friday night and in his soccer finals today. We may return to the hospital for rehab as it is hard to find a good outpatient place that our insurance will approve. We are also discussing with the doctors delaying the beginning of the next round until Dec 26 so Dylan can definitely be home for Christmas.
The latest (11/29, 7 p.m.): Dylan's numbers were stellar, so they let him come home; he will be able to see big brother in the school play on Friday night! Mommy's feeling better and everyone is happy to be together again. We are also discussing with the doctors delaying the beginning of the next round until Dec 26 so Dylan can definitely be home for Christmas.
The latest (11/28, 10 a.m.): Dylan's fever is down, but he has C-Diff. Mommy has a monumental headache. Hopefully his white blood cells will rise enough for him to come home to see big brother in the school play on Friday night.
The latest (11/27, 9 p.m.): Dylan has an infection after all, a common one that is caught in hospitals called C-Diff. Previously they made him take the medicine for it, called Flagyl, orally, and he hated it more than anything. Now they're letting him take it intravenously instead. He is in good spirits, but mom is not feeling well, having had a day-long headache.
The latest (11/26, 12 p.m.): Once nice thing about the holidays at the hospital is that things are very quiet around here. We didn't even have a roomate last night (all rooms at CHLA are shared). Dylan's fever is finally down and he does not have an infection as we had feared. He'll still stay in until his white blood cell counts are up, a few more days at least, and he may stay in for rehab as we have had trouble finding good rehab places to take him outpatient (and he really misses the cute therapists in the rehab wing). :)
The latest (11/25, 12 p.m.): Dylan developed a fever, so we had to bring him back to the hospital. He will miss the Glory of Christmas pageant we had planned to go to tonight at the Crystal Cathedral with live animals and flying angels (they are graciously letting us reschedule for another time). But he did get a few precious days at home with the grandparents; something to be thankful for....
The latest (11/23, 10 a.m.): DYLAN IS HOME NOW!
The latest (11/23, 6 a.m.): We had a fun day at the hospital yesterday. A group came and made everyone dinner, Dylan won a raffle prize (a Spongebob bath set!), and we spent the rest of the day just chatting. Dylan may come home today, all dependent on those precious blood counts....
The latest (11/22, 9 a.m.): Sad news: Dylan's blood counts did not rise as we expected and they have kept him in the hospital. To add injury to insult, his mouth is starting to hurt. We will probably not get him home now until next week. Nevertheless, we're going to have a happy Thanksgiving at the hospital. There's a lot to be grateful about. Come back later for pics of our brave little pilgrim.
The latest (11/21, 5 a.m.): Dylan is coming home today! We'll get to have Thanksgiving together at home. He will probably need to return next week for the chemo side effects because we can't manage the pain of his mouth sores at home. Please consider giving blood or platelets. Having them on hand helps us combat the side effects as effectively as possible.
The latest (11/20, 7 a.m.): Dylan called me today to tell me he's coming home tomorrow!
The latest (11/19, 7 a.m.): Round 4 of chemo is finished; side effects to follow.
The latest (11/16, 6 p.m.): Dylan started the fourth (4 of 6) round of chemo today. We have put out another request for blood/platelet donations. Jana's parents are in town -- the cavalry is here!
The latest (11/15, 8 a.m.): Dylan was readmitted for a leak he had in his "power" line that goes straight into his heart. He is having a "port-a-cath" put in today instead which is internal and will allow him to do things like take a bath in a tub and maybe even swim. He will undergo the operation this morning. He was going to be going back in today or tomorrow anyway for the next round of chemo.
The latest (11/12, 8 a.m.): We had a blast as a family yesterday at the Calabasas Classic 5/10k run and jog-a-thon. We had a lot of people running for team SuperDylan and they each represented a couple score more people who sponsored and donated to help us out. Jana and Chandler ran and Dylan and Eric clapped. :) A huge thanks to everyone that came out to Baja Fresh in Brentwood yesterday. Dylan had a great day and Chandler spent the day at Universal Studios. Fun!
The latest (11/9, 5 p.m.): Eat at Baja Fresh in Brentwood tomorrow, November 10, any time of day in Brentwood and bring the donation flyer and they'll donate 15% of your meal's value to the SuperDylan fund, part of the Talbert Family Foundation (see Donations page for more info about the TFF).
[download a Baja Fresh donation flyer here - you must bring this flyer with you for the SuperDylan fund to benefit]
The latest (11/7, 7 p.m.): Dylan went in for another check up today, with stellar results. He has been having an absolute blast at home and in the neighborhood, and we hope we can keep him out until the next round of chemo, which will start in about a week.
The latest (11/3, 7 a.m.): We went back to the hospital today -- but ONLY to take some free family photographs, check the Pics page to see one. Dylan is home. He's having trouble sleeping at night, so I slept with him. Every hour or two he would have a bad dream, then reach out and touch my arm, and then fall back asleep.
The latest (11/1, 1 p.m.): Dylan had a fun Halloween even though stuck in the hospital, and Chandler had a blast, too, scaring people at friend Ken Carlson's haunted house. Ken, a dear friend, hands out about 2,000 teddy bears to local community kids and this year included a note about Dylan's plight and how to get to this site to get more information. Word is that we'll bring Dylan back home tomorrow. Yay!
The latest (10/31, 8 a.m.): Some doctors came by Dylan's room this morning dressed as huge M&Ms and gave Dylan candy for a Halloween breakfast. Hoping the candy helps lift his spirits and his blood counts. (Word is he may get out on Friday). Dylan is dressing as a wolfman and Chandler is a vampire this year (go to the Pics page to see them).
The latest (10/30, 10 a.m.): It looks like Dylan will not be out for Halloween, though they do have quite a party at the hospital since it's full of kids. He is down, understandably, the morphine (for mouth sores) probably doesn't help, either.
The latest (10/29, 8 a.m.): I had to rush Dylan back to the hospital yesterday as he had a fever. They finally got us back into a room at midnight. Dylan's mouth sores are also back so it may be best to be where the morphine is. Hopefully he'll be back out in time for trick-or-treating.
The latest (10/28, 8 a.m.): Although we're so happy to have him home, Dylan has been having bad dreams and his mouth sores are returning; we don't have the pain management resources at home that they have at the hospital. Tomorrow he goes back during the day for a checkup, and can get some help then. Today features his first visits back to church and the Brentwood Farmer's Market.
The latest (10/26, 3 p.m.): Dylan finally came home this afternoon. He had an MRI during the week and the doc said the results were "pristine" -- no cancer anywhere to be found. He will continue on his regular course of treatment, but thankfully will NOT need radiation.
Plus, even better, he is home again!
The latest (10/25, 6 a.m.): Dylan had an MRI yesterday and the doc said the results were "pristine" -- no cancer anywhere to be found. YAY!
Plus, even better, he is coming home today!
He will continue on his regular course of treatment, but thankfully will NOT need radiation and will hopefully kick this cancer's butt for good. Three cheers for Super Dylan!!! Also, Chandler had a blast last night at his Halloween party: friends from class helped him decorate his house in a spooky and kooky way.
The latest (10/24, 4 p.m.): Dylan's MRI results came back. They were "pristine," according to the doctor. Yay!
The latest (10/22, 8 p.m.): Dylan moved rooms after a full day playing games, taking naps and finishing chemo. Stay tuned for the side effects.
The latest (10/21, 9 a.m.): Dylan is doing OK so far in the third cycle of chemo. The side effects will start soon. We hope they are short-lived and his blood counts come back up fast and we can bring him home soon.
The latest (10/18, 9 p.m.): Dylan returned to the hospital tonight for the third cycle of chemo. After a week of being out, we are hoping to get him back home soon. "Mops" (Eric's mom) and Aunt Ann (Eric's sister) are back in town to help through Sunday. Dylan had a fun playdate yesterday with some friends from school, and Daddy came home from a business trip to San Francisco to find some fun Halloween decorations in the house, donated by a friend. :) Daddy brought Dylan a miniature S.F. trolley car, and Chandler a teddy bear in Alcatraz prisoner stripes, and Jana a new shirt with a tiger on it.
The latest (10/17, 1 p.m.): Dylan returns to the hospital tomorrow for the third cycle of chemo. After a week of being out, we are hoping to get him back home soon. Check out this motorcyle ride this weekend (10/20-21) to raise funds for the pediatric brain tumor foundation!
The latest (10/15, 6 a.m.): Dylan and Chandler had a blast at Camp Ronald McDonald this weekend. There's an important MRI this week and we believe he starts round 3 of chemo this weekend. Site updates: We removed the Needs page recently as they have all been met (thank you!). We also reinstated the Calendar with more relevant info on the chemo rounds, fundraising events, blood drives, and more. Also added Dylan's supporting meds above, with links. And split up the Photos page into 3 pages, one for Children's, one for Cedars and one for B.C. (before cancer). Finally, we added lots more info to the blood donations page.
The latest (10/12, 7 p.m.): Dylan got stem cells taken from his blood today, but no MRI -- next week for that. He is camping tonight in Idlewild at Ronald McDonald House's Campgrounds. Fun!
The latest (10/11, 9 p.m.): Dylan is back in the hospital, but just for a couple of days, to get stem cells from his blood that he'll need transfused back in after the 6th and final round of chemo, and also to, hopefully, get an important MRI that will tell us if any new masses have grown. Dylan, Mommy and Aunt Linda waited alllllll day long for a room to open up and finally got one at dinner time. Tomorrow they'll harvest the stem cells, and hopefully also schedule the MRI. Stay tuned for more medical news....
The latest (10/10, 8 a.m.): Dylan has been having a blast with his toys at home and is getting to be a FAST crawler! It's almost like we had another baby and he is just ramping up to standing/walking very quickly! Aunt Linda (Jana's sis) is in town, having fun with him, too; we are glad to have a helping hand, even though we are home. Chandler will be seeing his school's new counselor today. He has been extraordinarily open about his feelings with us and we hope the counselor will also allow him to process them smoothly. Back to the hospital tomorrow and Friday for a stem cell harvest procedure and checkpoint MRI.
The latest (10/8, 8 p.m.): DYLAN IS HOME! After a whole day away from the hospital, we visited for a couple of hours to meet with Doctor Finlay today to discuss his upcoming (Thursday and Friday) stem cell harvest in preparation for transplant after the last round of chemo in February. We also have a major MRI coming up, probably on Friday also. While we were at the hospital, we dropped by the rehab floor to see a few of Dylan's favorite therapists and his favorite fellow patient, Emily. :) Stopped by Cold Stone Creamery on the way home and received a serenade from friend Abigail on her new cello. A heavy dose of Scooby before bed. zzzzzz.
The latest (10/7, 2 p.m.): Dylan is bouncing back so quickly that the doctor said he can come home. YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!
We will still need to return for the upcoming rounds of chemo, 5 days of inpatiet treatment per month, but the life of separation that our family has been living will largely be over after 10 weeks of hell.
Our hope is that he will not have any serious issues at home, and will learn to live without a bed that mechanically moves up and down.
We still have a long road ahead, and will continue to need your love and support for the next four months, but for now, we will be mostly back to normal with big smiles on our faces! :)
The latest (10/6, 7 a.m.): Dylan is doing alright. He has his own button to push now if the mouth sores are too painful, the button gives him morphine. He had some nightmares last night. Hope we aren't building a little addict! His white blood cell count is on the rise. No day pass Sunday, though. And this time he used some of the platelets that were donated recently. THANK YOU! We have been in the hospital 10 straight weeks now.
The latest (10/5, 7 a.m.): Dylan woke mommy up early to play catch. He's feeling a lot better!
The latest (10/4, 8 a.m.): Dylan's fever is gone. Doing well. Dylan had a bad reaction to some platelets Tuesday night, he was shaking uncontrollably and it was terrifying for Jana. But they gave him some Benadryl and he is OK now. The mouth sores continue, but are manageable. That same night Daddy took Chandler to see Dave Matthews Band [setlist]. The highlight for Chandler was seeing his P.E. Coach at the concert. Small world!
The latest (10/1, 9 p.m.): Dylan's mouth sores are back. He will probably need morphine to deal with the pain. Hopefully they will be short-lived. The doctor said the next few days would be rough for him. It was really hard to leave him knowing what he's up against. Since he has a cold, he is in isolation, and so we can't share our room with anyone else, which is good because it keeps things quiet at night. Dylan had a nightmare last night, though, so we are hoping for sweet dreams tonight.
The latest (9/30, 11 a.m.): The side effects are about to hit. Please pray/think/hope for minimal effects this round. He has already lost his appetite and his white blood cell counts are at a low. He has a cold and woke up coughing like nothing I've ever heard before last night. On top of that, his line that runs into his heart backed up and there was blood all over the sheets. It was like something out of the Godfather. :\ Dylan has been in the hospital for 9 straight weeks. On the bright side, Dylan is back up on the rehab floor and loving it. He really thrives with the various therapies he has here (physical, occupational and speech). A recent article was published about Dylan in the Brentwood News and is also online at the West L.A. Online blog.
The latest (9/29, 3 p.m.): Dylan is back up in rehab and loving it. He really thrives with the various therapies he has here.
The latest (9/28, 1 p.m.): Dylan is moving back up to rehab!
The latest (9/27, 5 p.m.): Dylan completed the second round of chemo. Now for the side effects....
The latest (9/25, 10 p.m.): I went to Chandler's open house at his school tonight. The teacher said Chandler came over to him during class and told him he misses his brother. Thank God he can express those downer emotions but oh, how I wish he didn't have to feel them. And some of his homework expressed his sadness and fear as well. Plus he has had a couple of nightmares lately. We are all starting to feel the strain of separation, but I wonder if Chandler doesn't feel it the most intensely. He is a sensitive and big-hearted guy.
The latest (9/24, 3 p.m.): Dylan is doing pretty well so far in the 2nd round of chemo, though he threw up 3 times yesterday (2 of the 3 were because of nasty medicine he had to take). This can change at a moment's notice, but we're hoping for no mouth sores or infections this time around. Thanks everyone who donated blood and platelets. We will be well stocked should he need them. Keep that great support coming! Check above for a list of the chemo drugs he's on, and links to more info on Wikipedia about each one. Saturday marked our 8th straight week in the hospital. :\
The latest (9/22, 3 p.m.): We have moved back down to the 4th floor for the 2nd round of chemo.
The latest (9/20, noon): Amanda Bynes did indeed come by the hospital for a visit to the "Teen Lounge" at Children's Hospital and Dylan got her autograph (for both him and Chandler) and many pictures with his heartthrob! Therapy continues and Dylan is doing well. They're on a points system and yesterday he traded in his points for two toys: a Spiderman cap and a Teenage Mutant Ninja Turtles action figure. There was a blood drive at my workplace today that was very successful. Dylan starts chemo again tomorrow (Friday).
The latest (9/19, noon): Rumor has it that the boys' favorite comedienne, Amanda Bynes, is coming by the hospital for a visit to the "Teen Lounge" at Children's Hospital and are screening Sydney White this afternoon. You may recall Chandler got to ask her a question at the MySpace Black Curtain Screening of Sydney White, so now Dylan will get his chance to meet her! More pics to come. Therapy continues and Dylan is doing well. They're on a points system, and today he gets to trade in his points for a toy. There's a blood drive at my workplace Thursday. And then we have a big meeting with all the doctors Friday morning.
The latest (9/16, noon): Scooby Doo and Shaggy visited Dylan today, and really made his day. (Thanks, Robbie, OC Princess and Ali). They spent some time goofing around, eating Scooby Snacks (yum!) and watching new Scooby DVDs. Shaggy's daughters (didn't know he has procreated, didya?) made get well books for him that are very touching. Click to my MySpace hospital photo album (titled August/September 2007) and click to the last page to see the latest pics. Mommy also came with Chandler with goodies from the farmer's market: a hot dog and some pluots -- Dylan's faves! A gold star day all around....
The latest (9/15, 9 pm): Dylan finished a gruelling week of speech, occupational and physical therapies.
The latest (9/14, 8 pm): Dylan continues to impress the speech, occupational and physical therapists. He has more tomorrow and a day off Sunday when we're expecting a VERY special visitor. Tune in Monday morning for pics and a recap of the visit. Also, the marketing gals at work loaded us down with swag for Dylan and his friends, so check my myspace default pic (link above) to see Dylan wearing a new cap, and click through to my photos to see big bro Chandler wearing everything at once!
The latest (9/13, 7 am): Dylan is astounding the OT and PT therapists with his strength, but he is also as smart as is he is strong and handsome (parental bias?). The speech therapist gave him some tests and he scored on one of them in the 99th percentile! It is a lot of therapy and by the end of the day he is spent, and a little ornery, but a trooper who knows that this hard work will get him back home faster.
The latest (9/11, 6 pm): Dylan had Occupational Therapy, Physical Therapy and Speech Therapy today, and is EATING again! They have moved him, again, to a larger room with a view of the Griffith Observatory and the Hollywood Sign (photo to come). The Presidential Suite.
The latest (9/10, high noon): White blood cell counts are WAY up, so Dylan should be feeling great soon. Plus, even better news, we're moving up to the rehab floor which is supposed to be super fun. Yay! We'll be in room 667-A. Stay tuned for more good news!
The latest (9/9, 9 a.m.): White blood cell counts are up, yay! That means his mouth sores will go away and he'll be able to eat again. We're supposed to move up to the 6th floor tomorrow for a week of intense therapy now that the chemo side effects are fading. Then it's back down to the 4th floor the following week for the next round of chemo. Yuck. Looks like we may not go home until late in the month or even October. Updated our list of needs added some items and removed others that people have donated, and added info about donating blood & platelets.
The latest (9/7, 7 p.m.): Mommy was with Dylan all week; and it was one of the toughest weeks yet. Dylan is starting to lose his hair. He had a transfusion yesterday after getting a blood infection. He has a low white blood cell count, causing him to get injections that are very painful. Dylan continues to have painful mouth sores as a side effect of the chemo; they are giving him morphine to manage. He has also lost some weight. The good news is that the doctor has said we "may" go home in a few days. Woo!
The latest (9/5, 8 a.m.): Dylan has had painful mouth sores as a side effect of the chemo; they are going to have to give him morphine to manage. He is in low spirits, as you can imagine, and needs your positive energy as much as ever. [Side note: Big bro Chandler started school today: a little structure back in our lives.]
The latest (8/31, 8 p.m.): Dylan is finished with his first round of chemo. Side effects appear to be minimal so far. He had some nausea and headaches. Now his head is itchy, but Benadryl helps, tho makes him sleepy. He still has his gorgeous hair, for now. :) And also he finally finishes his yucky antibiotic called Flagyll. Yay! I'm here at the hospital with him for the long weeekend....
The latest (8/29, 11 p.m.): Dylan is finished with his first round of chemo. Big brother Chandler went to the MySpace Black Curtain Screening of Amanda Bynes' new movie Sydney White, Amanda made an appearance, and Chandler got to ask her a question.
The latest (8/28, 7 p.m.): After a couple of tough days on the chemo (nausea, vomiting and general bad attitude -- he even took a swipe at his OT and used some choice words with her), Dylan is feeling better and even dressed himself today!
The latest (8/27, 8 a.m.): Dylan is having a tough time with the chemo. Very sick and an allergic reaction last night. :(
The latest (8/25, 8 p.m.): We moved to the 4th Floor. Chemo begins tonight, day zero, four weeks after we went to the emergency room with Dylan.
The latest (8/24, 5 p.m.): Dylan had a "power line" installed so that he will not need any more shots, all done through the lines that go straight to his heart. Dr. Finlay came and told us that a second spinal tap using a more current method shows NO cancer cells in his spinal fluid: it has not spread. Great news!
The latest (8/23, 10 p.m.): After waiting all day, we finally moved to Children's Hospital and are currently in room 611 East. We love the people and the place. Yay!
The latest (8/22 -- make that 8/23, they delayed us by a day): We are moving from Cedars to Children's Hospital today. We have had excellent treatment at Cedars, but for the next phase of therapy and recovery, Children's will be the best place for us. We have been in the hospital for 27 days, 23 of those in ICU.
The latest (8/22): We are moving from Cedars to Children's Hospital today. We have had excellent treatment at Cedars, but for the next phase of therapy and recovery, Children's will be the best place for us. We have been in the hospital for 26 days, 22 of those in ICU. We have slides going to Johns Hopkins to determine the subtype of cancer, and MRI results coming this morning to tell of any remaining, or new, tumors.
The latest (8/21 - 1 p.m.): Dylan gets another MRI today. The brain and spine this time. Hoping for good results. We also hope to move to Children's hospital tomorrow.
The latest (8/20 - 9 p.m.): We met with Dr. Jonathan Finlay today. Here are his consultation notes, which add some medical detail to the above story which is obviously lacking in such being that I wrote it! We were very pleased with him and plan to have the best of care at Children's Hospital. While we were gone, Dylan took a walk, with some help from a therapist and Aunt Annie, out of the room into the hall ("and back!" Dylan adds).
The latest (8/19 - 10 a.m.): Eric's mom and sister come in to town today. Dylan is continuing to make great progress. A room just opened up. We have moved to the 4th floor and out of the PICU! We are now in room 4002! New pics are on my myspace, page 2 of the second photo album (August 2007).
The latest (8/15 - 4 p.m.): Dylan had the shunt put in, so no more turban. We're also confirmed to move out of the PICU tomorrow. That's the good news. However, the spinal tap results came back and the cancer has spread past his brain, into the spinal cord, but no farther than that. This moves him from average risk to high risk, which means a more aggressive treatment coming up. This is a worse prognosis than we had and we're still letting that fact settle in....
The latest (8/13 - 9 p.m.): Dylan took a wheelchair out for a spin and left the ICU for 10 minutes, looking out the 6th floor windows and feeling the sunlight on his skin (too bright for his eyes, though).
He saw cars and people, buildings and palm trees; and even spotted a plane far in the distance that daddy didn't even see! Funny how we take all this for granted.
He's getting stronger every day, able to roll himself over in bed now, speak more clearly, eat like a champion, and tease the nurses. :)
The shunt surgery is, hopefully, Wednesday. This will bring us to the next phase and one step closer to bringing the boy back home.
Those of you who are praying, thinking, sending positive energy & good vibrations (hey, this IS California, after all), please keep it up. It helps Dylan's morale and we all know how much that can help people heal.
The latest (8/12 - noon): Dylan's getting a spinal tap today. The shunt will be put in Wednesday or Thursday as Dylan has been febrile from a CSF all week (running a fever due to an infection). Then we'll be moving out of ICU, probably the day after that.
The latest (8/10 - 7 a.m.): the little Dylster made a couple of healthy poops for the nurses last night, and I'm almost as elated as when he said "I love you!" :) After all the manly meals he's been having all that food had to go somewhere, but I'm proud of my little guy not needing any assistance to take care of business. But (somewhat more) seriously, they took him off antibiotics last night and his fever has come down. Still a little wait-and-see, but we think he may be good to go for Monday's surgery and, hopefully, a step toward moving out of the ICU (and, eventually, taking him home again). The shunt will be put in Monday as Dylan has been febrile all week (running a fever). Then we'll be moving out of ICU, probably the day after that.
The very, very latest (8/8 - 7 p.m.): Dylan said "I love you" in his weak little voice to me today. Then he demanded to watch Bugs Bunny! He ate a full meal (peaches, cottage cheese, carrots, bread, chicken noodle soup and two chocolate pudding desserts!) and can hold his Spiderman cup and sip water from it. They have removed his feeding tube for good! Slowly, he is returning to us. :)
The very latest (8/7 - 10 a.m.): Dylan can say "mama" now! It's nearly as exciting as when he spoke his first words (it was "ball" then, the little sports nut). Working on "dada" now. :)
The latest (8/6 - 9 p.m.): Those of you who know Dylan know he LOVES to eat (he's like his dad that way). Since he hasn't been able to chew, we have tried not to eat in front of him. Today he kept opening his mouth, but saying no to his now-standard lollipops: he wanted food. Mom snuk him some avocado and bread, but when she tried to pop some sushi in his mouth she was caught by the nurse. They called in a nutritionist who actually marveled at the little Dylster's ability to be able to chew his food thoroughly and drink from a straw. He ate two whole chewy granola bars today! That's my boy. :) Grandparents (Jana's) came to town tonight and won major brownie points for bringing the first Pokemon movie on DVD. He was entranced.
The latest (8/5 - 3 p.m.): Dylan is dancing (to, you guessed it, a Scooby Doo soundtrack), able to wave, nod and shake his head "no," hold a lollypop in his own mouth, give kisses on the cheek, and he even sat up on his own for a few minutes. He has his wicked funny sense of humor and his megawatt smile back in full force, and so has the nursing staff wrapped around his little finger. :) We'll be moving rooms Monday or Tuesday, hopefully, out of the Pediatric ICU into a regular, private hotel room. The grandparents will be coming to town soon, so that will gives mom and dad a bit of a break and some more familiar faces for Dylan to see. We also hope to know about the next steps this week with inpatient therapy (we will either be moving in two or three weeks to Children's Hospital or Miller's in Long Beach). He's getting a shunt put in tomorrow morning in his head. This will enable him to have more mobility.
The latest (8/3 - noon): Dylan sat up for half an hour, propped up in a chair, and was happy to be able to look around his room. He can also now give the "thumbs up" sign and communicate with us that way. Still watching Scooby Doo! :)
The latest (8/2 - 3 p.m.): GOOD NEWS! The type of tumor is a medulloblastoma instead of epydenoma (sp?) which is easier to treat and has a greater recovery rate.
The latest (8/2 - 9 a.m.): Dylan can open his eyes and watch movies (one eye is offset, but will get better or need to be corrected with surgery) and he is responsive. His right side is weaker than his left and he can't speak yet, but the therapists all feel this will come back, hopefully 100%. It may take as long as a year, though. Big brother Chandler came by yesterday and I think they both are better for the visit. We hope to have the full lab results today and get a road map for treatment from the doctors (and maybe even learn when we can expect to bring him home).
The Super Dylan website was originally created August 1, 2007. The below email was sent the day of Dylan's surgery to as many people as I could reach. July 29: If you haven't heard yet: It's been the worst weekend of my life as we have had to rush our son Dylan, 5, to emergency brain surgery to have a golf ball sized tumor removed from the back of his head. He is in the OR as I type this and we do not have a prognosis yet. We should know more tonight after the 6-8 hour procedure. It has been very hard on us all; we are really scared.