 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.
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, although 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 are 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 is currently 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, when the report was "stable." We are facing a bone-marrow transplant with high-dose chemo soon as they have recently found a good match in the donor registry. He was nicknamed "SuperDylan" well before he was diagnosed, for his strength and agility. Now he 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 the struggle for survival that this little soldier has waged.
See the links to the left for more medical information and updates from our journey.
You can also add us on Facebook, Google+, MySpace and Twitter, if you use any of those social networks.
Some quotes that have helped us make it through all this.
"Hope cannot be said to exist, nor can it be said not to exist. It is just like the roads across the earth. For actually there were no roads to begin with, but when many people pass one way a road is made." ~ Lu Hsun "So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared tothe coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever." ~ St. Paul, 2 Corinthians 4:16-18 "Got to kick at the darkness 'til it bleeds daylight."
~ Bruce Cockburn
"There is no birth of consciousness without pain." ~ C.G. Jung "In love's service, only wounded soldiers can serve." ~ Thornton Wilder "The world breaks everyone, and afterward, some are strong at the broken places."
~ Ernest Hemingway
"In the depth of winter, I finally learned that within me there lay an invincible summer."
~ Albert Camus
"Whenever you see darkness, there is extraordinary opportunity for the light to burn brighter."
~ Bono
"All that the downtrodden can do is go on hoping. After every disappointment they must find fresh reason for hope."
~ Alexander Solzhenitsyn "Never give up. Take what life throws at you and throw it right back. If life keeps throwing, then you have a tennis match going. Learn to like tennis." ~ Glenn Ford "It makes all the difference to know there's someone else screaming alongside you." ~ Susan Howatch "Life is what happens to you while you're busy making other plans." ~ John Lennon "Demons run when a good man goes to war." ~ from Doctor Who ˆ"Remember to play after every storm!" ~ Mattie J.T. Stepanek
"The best way out is always through."
~ Robert Frost
"God is what's good in me." ~ from Death Be Not Proud "Enjoy every sandwich." ~ Warren Zevon Formerly superdylansite.com, this site was built, migrated and is maintained by Dylan's dad, Eric David |