DYLAN DAVID: May 26, 2002 - May 22, 2013
Welcome. This site contains more than 175,000 words from the blog I kept of Dylan's cancer journey. The below page is a summary of those six harrowing years, while the entire blog is archived on four long pages in the Archives section. The Memorials page covers Dylan's funeral and the speeches given there, as well as a few other memories. The History page is more medically oriented (and helped me remember dates and drugs when doctors asked about previous treatments and procedures. The Quotes page has some words that helped keep us going, and the Donations page is where you can support organizations that also helped keep us going.
In late July 2007, at age 5, our son, Dylan, had a malignant brain tumor removed at Cedars Sinai Medical Hospital, and then received chemo at Children's Hospital Los Angeles until late February 2008.
He also suffered the equivalent of a stroke during surgery: he couldn't eat, walk, talk or even sit up on his own. Lots of rehabilitative therapies have helped to recover most of those faculties, to an extent. The type of tumor is medulloblastoma, with a subtype of "anaplastic." It is not hereditary, does not run in families, was not caused by anything we did in pregnancy or any time thereafter, and is not contagious. In the words of our oncologist, it was just "lousy luck."
Medulloblastoma is the most common malignant brain tumor in children, diagnosed in about 400 children a year in the United States, with a survival rate of about 70 percent. The anaplastic subtype is more aggressive in nature, and has a lower survival rate.
Dylan has an older brother, Chandler, who has been affected by this tragedy as much as anyone.
After high dose chemo, checkpoint MRIs and spinal taps in October 2007, January, March, July & October 2008 were clean. However, a scan in January 2009 showed masses growing in Dylan's spine: A relapse. A biopsy showed it to be a recurrence of the same kind of cancer, showing up as Leptomeningeal Disease, which is an even more grim prognosis, with a shorter survival curve. Dylan had two months of chemo and then six weeks of radiation that, because of complications, extended through mid-June 2009.
We traveled to New York City for experimental "monoclonal antibody" treatment at Sloan Kettering in August and September of 2009. Unfortunately, the treatment was not successful because Dylan's cerebral-spinal fluid was not flowing; even so MRIs taken during our trip showed no change in his tumors, and a test of his CSF fluid at the end of therapy was clean of cancer cells. MRIs taken in early October 2009, and January and April 2010 also showed no change. The spots on the scans were hopefully just dead tumors and scar tissue. Our doctor declared Dylan to be in remission and put him on a "maintenance" regimen of pills for six months.
On July 22, 2010, we learned to our dismay that the cancer was back again, a second relapse, this time in the brain. We took him off the maintenance pills for a month and did another scan and analyzed his ventricular fluid. This showed no other tumors and no cancer cells in the fluid.
Dylan had his second brain surgery September 22, 2010, from which he recovered remarkably fast. All the tumor was removed. Subsequent scans in October showed a second tumor in the brain and two more small tumors at the base of the spine.
We took Dylan to Belgium from October 18 - Nov 25, 2010 for vaccine therapy, but an MRI on Dec 13, 2010 showed that it was not effective.
Dylan received gamma knife treatment on January 5, 2011 and started on an open study at Children's Hospital on February 16, 2011, which was a combination of three drugs. Dylan's platelets dropped repeatedly on the open study. An MRI on April 18, 2011 showed that the gamma-knifed tumor had shrunk a bit, but that other new tumors had grown, so he was taken off the medications.
Dylan started on a new drug in Boston at the Dana-Farber Cancer Center on June 2, 2011. An MRI on July 28, 2011 showed that the tumors in his head had continued to grow and that a new tumor had shown up in his spine.
Having returned to Los Angeles, Dylan went on oral etoposide, the single-best chemo drug one can try alone (instead of as part of a cocktail). An MRI on August 31, 2011 showed that the tumors had shrunk, some even disappeared, although the disease is not minimal-enough to move on to the next step: another bone marrow transplant, but this time involving a donor (unfortunately neither his parents nor Dylan's brother, Chandler, are a match, so we must go to the national registry to, hopefully, find a donor).
Additional MRI and PET scans on October 4 and 5, respectively, showed additional tumor shrinkage along with a reduction in the swelling around the dying tumors from August. Also, the PET scan showed the tumors were for the most part dead, as much as can be detected with their samples. A lumbar puncture (spinal tap) showed no change in the number of "suspicious" cells, which can also be taken as good news and no cause for worry, according to our oncologist. Dylan's blood counts remain steady and strong. Dylan has remained on the etoposide with continued shrinkage showing in the monthly scans up through January 2012, when the report was "stable." An MRI in March was also stable.
We were facing a bone-marrow transplant with high-dose chemo in the June 2012 time frame. They have found a man who is a 9-out-of-10 match in Germany and June was the time he could donate. We put Dylan through a score of invasive tests for insurance approval and medical appropriateness of the match and then had to run the tests all over again because they have to be used to set a baseline 30 days before starting the procedure (insurance took longer than 30 days to approve). However, the final MRI of these tests showed that the lesions had grown and the bone marrow procedure was put on hold.
Dylan underwent brain surgery again, on the left side this time, on June 14, 2012, to remove as much of the tumor as possible and to biopsy it to see if it is medulloblastoma or another, mutated form, of brain cancer. Results showed it was the same, medulloblastoma, but that most of it was alive, not dead, as we had hoped.
On July 11, 2012, Dylan started a new antibody therapy, Erbitux, that has been successful with one other kid with medulloblastoma. The treatment is outpatient and is a simple injection into his port in his chest. After a month of injections, Dylan showed only minor side effects until he suffered multiple seizures on September 5, 2012. An MRI the same day showed the tumors had grown, and that Dylan had more tumor load than ever before and that it was growing faster than ever before. Basically, he is out of options. We could try a few other things out of desperation, but our oncologist has recommended hospice and palliative measures.
Dylan started palliative whole-brain radiation on September 17, 2012. On September 18, he suffered more tonic-clonic (grand mal) seizures. Hospice, which we had recently set up, came and administered medication to control it. This round of seizures left him with severe amnesia and no ability to store short term memories. He remembers long-term memories, who we are in our family, but can't remember much since he got cancer and also can't remember anything that just happened to him.
He was put on steroids which made him constantly hungry and bloated: the image we have seen in other cancer kids shortly before the end. He completed radiation on October 10 and later in the year was taken off the steroids.
An MRI on November 13 showed significant shrinkage of the tumors; good news in that it buys him some more time. A meeting on November 28 showed there are no Phase 1 trials for which Dylan qualifies, so instead, on December 5, 2012, we started a chemo regimen of Avastin and CCNU (three rounds of Avastin to one of CCNU).
An MRI on February 13, 2013, after completing two rounds of the new regimen, showed the tumors to have shrunk even further. He will continue on these meds as long as his body will let him (the effects on his blood counts are cumulative, so this is not a permanent solution). Another MRI on May 3, 2013 was stable, with less edema around the residual tumors, great news.
However, on May 18, Dylan suffered a seizure that lasted for days. His condition progressively worsened and he finally breathed his last on May 22 at 5:20 a.m. He would have been 11 on May 26. Dylan will be missed, but his spirit and his message to "Remember Just to Love" will live on in our memories and our hearts.
Well before he was diagnosed, Dylan was nicknamed "SuperDylan" for his strength and agility. His body was lean and muscular, his eyes a bluebird wingtip-blue, and his hair was goldenrod with almost sunlight-white highlights. Later, after he was diagnosed, he was (and still is) called SuperDylan because of his determination, will, fortitude and indomitable sense of humor, which have been an inspiration to many. I wanted to share his fighting spirit with everyone through this website, which gives you a mere glimpse into his struggle for survival.
Dylan loved playdates, karate, hard rock music, playing handball, Wii, Uno and "freezeball" (he made it up), going to arcades, and watching Ben10, Adventure Time, Scooby-Doo, Wipeout, and Phineas and Ferb on TV. He was a serious foodie, a strict vegetarian and animal lover, a ferocious hugger, and even after coming back from a stroke, could do 300 pushups, a perfect split, and he wanted to be a karate instructor when he grew up.
See the link tabs at top for more medical information and updates from our journey. You can also add us on Facebook for updates and more photos.
Formerly superdylansite.com, this site has been visited by thousands of readers around the world since it was originally published in August, 2007. This site was built, migrated and is maintained by Dylan's brother, Chandler David, and Dylan's dad, Eric David.