CANCER FUND

Dylan’s family requests that donations be made to the Pediatric Brain Tumor Foundation of the US, 302 Ridgefield Court, Asheville, NC 28806 (http://www.pbtfus.org/donate.htm) in lieu of flowers.

THE CANCER AND THE TREATMENT

In early June of 2002 Dylan sprained his ankle while delivering newspapers. His ankle refused to heal, in part, it seemed, because he kept twisting it again and again. In mid-June he started complaining of numbness in his foot—he couldn't feel the heat of the hot sand at the beach in his right foot while he could barely walk with his left foot due to the burning sand.

When Dylan was taken to Children's Hospital in Columbus to check on his unusual sprain and numbness, an MRI revealed a tumor on his spinal cord spanning nearly three vertebrae (Lumbar 1, Thoracic 12, Thoracic 11). It was the tumor that was causing the numbness and loss of ankle control.

After biopsy surgery, pathologists diagnosed Dylan's cancer as Glioblastoma Multiforme, the deadliest of all brain cancers, which usually kills its victim within six to nine months. He immediately started radiation. Two or three weeks later his biopsy was rediagnosed at the James Cancer Hospital at Ohio State University as an anaplastic ependymoma. While still very threatening, this different form of brain cancer can sometimes be cured with surgery, radiation, and chemotherapy.

With radiation therapy temporarily suspended, Dylan had the tumor surgically removed at Johns Hopkins Hospital in Baltimore on August 30, 2002. He returned to Columbus in mid-September, where he entered the rehabilitation hospital at Children's Hospital.

Soon after Dylan's return to Columbus, his surgeon called to tell us that the tumor had been rediagnosed once more, now more vaguely as a high-grade glioma (which can include both anaplastic ependymomas and glioblastomas), warning that the cancer might be more deadly than an ependymoma.

In late September, after completing his resumed radiotherapy, Dylan traveled to Houston to be prescribed a chemotherapy treatment by the M. D. Anderson Cancer Hospital. In October he began an oral regimen of Temozolomide, Celebrex, and Accutane, carried out and monitored by Children's Hospital in Columbus.

Dylan's MRIs showed no recurrence of the cancer into the New Year. But in early February his scan revealed new spinal cord tumors and a plaque-like coating of cancer cells throughout the bottom half of his brain. We immediately changed his chemo protocol, in collaboration with his oncologists at Children's and at M. D. Anderson, to weekly intravenous doses of Irinotecan and, every six weeks, BCNU.

Dylan's April MRI scan showed a miraculous decrease in the cancer, with the brain completely cancer free to the naked eye and with a marked decrease in the size of the spinal cord tumors. In conjunction with chemotherapy and the addition of thalidomide, Dylan also underwent more radiation therapy to the entire brain and the remainder of the spinal cord. The good scan was also the story in May. But in June the story changed once more.

Now there was an increase in the number and size of the tumors in the spinal cord, a recurrence of the plaque-like film in the brain, and a small tumor developing in his cerebellum. Dylan chose to continue his current chemotherapy, believing that, with such good results initially, perhaps the delay between treatments in order to receive radiotherapy contributed to the relapse.

Scans throughout the summer seemed to support Dylan's instincts. The tumors were held in check through August. But September showed a mixed scan, with marked growth in the spinal cord, a reduction in size of the tumor in the cerebellum, and the growth of two small tumors in his cerebrum. At this point, again with the advice of both his Columbus and Houston oncologists, Dylan's treatment changed to VP16 and Carboplatin.

In early October Dylan appeared to be suffering from mild seizure-like episodes and was admitted to Children's, where on the following day he suffered one or two more serious and obvious seizures. A brain MRI scan showed increased growth throughout his brain and spinal cord. Dylan's oncologist warned us that he might not make it through the night.

Dylan nevertheless pulled out four more good weeks from the jaws of death before his final week of repeated seizures, deterioration, and final, peaceful death.

PURPOSE

Dylan died of brain cancer after an eighteen-month struggle. Through lucky and miraculous turns of events adding to the skill of all of his medical team, this year and a half, as it turns out, was far more time than any prognosis could have predicted. Despite being confined to a wheelchair and having lost control over almost half of his body, Dylan continued to live each day as normally as possible—he just wanted to live the life of a normal teenager. But in the end, no matter his bravery and determination, no matter the wonders of modern medicine, the cancer won.

Research and treatment for brain cancer are far from adequate today. We can only hope that such will no longer be the case tomorrow. All the future Dylans of the world, children with so much vitality and promise, deserve the unending support of the rest of us who remain and can still fight this deadly disease. This is what Dylan wanted and why he donated his brain and spinal cord to cancer researchers. The purpose of this memorial site, then, is to try to help make Dylan's dream a reality.

LINKS

• Young Adults Surviving Glioblastoma
• eMedicine Glioblastoma entry
• Harvard Glioblastoma entry (1994)
• Brain Tumor Medical Database
• Michael T. Glass Glioblastoma Research Foundation
• Columbus Children's Hospital
• Johns Hopkins Hospital
• M D Anderson Cancer Center
• Kristen Kenzig's Memorial Links