by Amy Wilcox (Ryan's Mom)
Our son, Ryan, was a typical energetic, squirmy 3 year old, until one day we noticed that his balance and coordination was a little off. At first we didn't think much of it; however, over the next couple of weeks he progressively got worse. His little legs would shake when he tried to climb up the stairs, or he would fall over while getting dressed.
Eventually, he was unable to climb into his car seat without help. He seemed to be getting weaker and weaker and we knew that something was not right. On May 5, 2001, we rushed Ryan to Children's Hospital in San Diego where the doctor's immediately sent him in for an MRI. The results were nothing that we were prepared to hear....our son had a Brain Tumor. A mass about the size of a grape was deep inside his brain. The tumor was causing pressure and fluid build up (hydrocephalus) that brought on all of Ryan's symptoms and coordination issues. He was admitted that day... the first of many nights he would spend in the hospital.
The next day we met with the oncologists and neurosurgeons. Ryan's first surgery was to relieve the pressure build-up in his brain. The procedure was called a "third ventriculostomy". After he recovered from this surgery, the biopsy was next. That surgery was more difficult. His tumor was located in the "pineal region" and was very hard to get to. Since Ryan's tumor was "inoperable" he would have to be treated with chemotherapy and/or radiation therapy. The biopsy results came back as a "Pilocytic Astrocytoma"...a "low grade" benign tumor.
After 17 days, Ryan was released from the hospital and would begin his 14 month chemotherapy regimen two weeks later. Ryan's tumor was "benign", and the doctor's were not sure if chemotherapy would even affect this slow-growing tumor. Since surgical removal was not an option and radiation was too aggressive at this time, chemotherapy was our first hope. After 14 months of chemotherapy and numerous blood transfusions Ryan's tumor was still there.
The Chemotherapy seemed to have stopped or slowed the tumor from growing; however, it was still there and the doctors were watching it closely. Ryan had routine MRIs and check ups. He was even put on a "maintenance chemo" at home. In April 2003, shortly after Ryan celebrated his 5th Birthday, the MRI showed that his tumor was getting bigger. He would now need to start radiation therapy. So, every day for six weeks he was given radiation to his brain. The doctors were hopeful that the radiation would kill his tumor. We needed this to work... it had to work. This, we feared, was our last option to help our son.
In June 2005, Ryan was 7, he started having headaches again and he did not feel well. We called his doctors and an MRI was scheduled the next day. Our worst fears came true... Ryan's tumor had began to progress again. Now it was about the size of a plum and encroaching vital areas of his brain. The tumor was considered at "end stage" and would probably continue to grow and eventually be fatal. Surgery was our last and only hope. Since his tumor had "finger like" roots that were embedded in his healthy brain, removing the entire tumor was considered impossible. Over the next few days we met with different doctors, we even flew to Stanford University to get a second opinion. We knew surgery was imminent, and we needed to find the right surgeon. We came back to San Diego and met with Dr. Michael Levy at Children's Hospital, San Diego and he presented an "unconventional surgical approach" to removing Ryan's tumor. He would go through the top of the head and down to where the tumor was located. He made no promises as to how much he could remove; however, he was confident he could remove about 95%. Ryan's surgery was scheduled five days later. On June 14, 2005 our prayers were answered. Dr. Levy performed the "impossible" and completely removed Ryan's inoperable tumor. The tumor that Ryan battled for 4 years was gone! Not only was the surgery a success but Ryan is doing better than his doctors predicted. Ryan is 9 years old now and in the 3rd grade. He is in Cub Scouts and plays baseball. He is still watched by his doctors with MRI scans every 6 months. It has been almost 3 years since his last surgery and there is NO sign of any tumor recurring. His scans have all been "clear". Ryan is a true inspiration to all that know him. He has an amazing spirit and love of life and his courage and strength continues to inspire us all. My wish in telling Ryan's story is that is could bring some hope to another family in a similar situation. Dr. Levy performed a surgery that most doctors still believe is impossible. Our son is living proof that miracles can happen.
Feel free to contact me with any questions regarding Ryan's diagnoses and treatments. I will be willing to share any information I can.