Hello. My name is Mary Place, and I wanted to share my 10-year-old son Jeffrey's story. Last January, my husband and I received the shocking news that Jeffrey had a brain tumor. We never expected that our child, who had seemed perfectly healthy his whole life, would ever face such a challenge.
It started during the holidays when Jeffery had flu-like symptoms, including fatigue, headache, upset stomach and vomiting. Our pediatrician in Connecticut ran multiple tests, and we learned that there was fluid on Jeffrey's brain—a condition called "morbid hydrocephalus." At that moment, our whole world just seemed to fall apart.
Jeffrey needed immediate surgery to get rid of this fluid, and since transporting him was dangerous—he was at risk of having a seizure or stroke—he had the operation at our local hospital. The surgery revealed that Jeffrey had a benign brain tumor that was blocking the drainage of spinal fluid through his spinal column. After they removed the tumor, several complications arose and another surgery was required to implant a shunt that would drain the fluid properly. Then he had another operation because the drain wasn't working. That's when we learned that Jeffrey would need yet another surgery to address his hematoma—a dangerous gathering of blood on the brain.
In March, we transferred Jeffrey's care to Liliana Goumnerova, MD, a neurosurgeon at Children's Hospital Boston, who specializes in the management of pediatric brain tumors. Dr. Goumnerova met with us and thoroughly evaluated Jeffrey. She was extremely kind, and involved Jeffrey in our discussions about his condition. She carefully explained the challenges of his case but was confident she could correct Jeffrey's many complications. We were admitted the following morning and stayed for 19 days.
The Neurosurgery Department's staff immediately put us at ease and became a strong support system for us. After Jeffrey's first procedure on the shunt, Dr. Goumnerova performed a surgery to create an actual drain in the center of Jeffrey's brain. This was a huge success because it meant that Jeffrey wouldn't need a permanent artificial shunt, which would have been prone to infections. We were amazed how she performed this intricate surgery, in such a critical area, without any complications.
After this success, Dr. Goumnerova corrected Jeffrey's hemtatoma with one last OR visit. My husband and I are overjoyed by the outcome and have tears in our eyes every time we see Dr. Goumnerova. We were so blessed to have our child in her care.
And the care we received didn't end there, as we met many other caregivers through the multidisciplinary neuro-oncology team offered through Children's and the Dana-Farber Cancer Institute (DFCI). In particular, our oncologist, Christopher Turner, MD, regularly met with us, guiding us through our fear, while educating us on our future. We felt like we'd gained a strong advocate for our son. We were pleased to learn that Dr. Turner is affiliated with the Jimmy Fund Clinic at DFCI, where Jeffrey's recuperation and health will be monitored closely in the months and years to come.
The nurses on the Neurosurgery Unit were fantastic, as everyone took a special interest in each child. When Jeffrey was finally up and about after each operation, there was a wave or smile for him at every turn. There were clearly very difficult patient cases on our floor and I was impressed by the nurses' ability to successfully manage their many challenges with ease.
We eventually returned to Connecticut with a much more optimistic outlook about our son's future. Although 5 percent of his tumor remains, Jeffrey's team doesn't recommend radiation or chemotherapy at this point. We have regular MRIs at Children's to monitor the tumor, as well as a small spot on his spine. If that tissue grows, we're confident we have the right team to deal with it.
Jeffery is doing great. He's back in fifth grade and has resumed an aggressive schedule of physical, occupational and speech therapy sessions. He's regained his strength and weight—13 pounds since leaving the hospital. And although we're avoiding contact sports for the time being, Jeffery's back to playing baseball.