- Prepping for the Day You Hope Never Arrives:Facing Recurrence
My 14–year–old son was eight years past diagnosis of a brain tumor. Gone were the pristine sick days when his white hooded sweatshirt stayed spotlessly clean for weeks at a time. Each time he left a muddy footprint on the kitchen floor I rejoiced; it felt so good to have a healthy kid again. However, my son was a survivor of an anaplastic ependymoma, grade IV, brain tumor, and although I wanted to be out of the woods, I knew we were not. I’d climbed out of the space where medical problems were fi led in my mind, yet I kept the door open because statics showed that the type of brain tumor he had, frequently recurred.
Still, I was determined to keep our lives as ordinary as possible. But for a brain tumor family this meant staying connected to sources of support. Parent programs, patient and sibling support groups [End Page 27] and camps, and we remained connected to hospital resources. Most of all we needed to have fun as a family, and we attended the cancer survivor picnics and parties our hospital hosted, where the doctors served as volunteers, grilling hamburgers and dishing up ice cream for the guest of honor patients.
My husband and I felt confident that as long as we worked as a team with our doctors and stayed connected to resources offered, we would find a way to meet any challenges that might surface.
In the end ultimately what saved us was this mosaic of support provided to us over the years from a multitude of good people and organizations offering help when we needed it most. And I had the opportunity to learn to accept help, which it turns out, is far harder than offering to help.
Shortly after my son Jay celebrated his 8th year as a brain tumor survivor, I watched him open the medicine cabinet and reach for the bottle of Advil, for the second time in a row that day. “Do you have a headache again?” I asked. He shrugged his shoulders, then hiccupped hard, and ducked his head in the toilet and threw up. Tears welled in his eyes. I sank into the deep, silent panic that made me calm.
Our primary care physician called in an authorization for an MRI. Jay hid his fear behind a mask of quiet strength. It was ten days before his fifteenth birthday.
While we waited for the MRI appointment, that week Jay was elected student of the month, and he got a lead part in the school play. My idyll of family hood continued until the MRI confirmed my worst fear—the tumor was back, and this time its fingers spread into the brainstem.
We had to decide on a plan of treatment. Surgery was scheduled. When Jay was admitted to the hospital and I requested that he be placed in the pediatric ward, an environment he was familiar with, they agreed. Although Jay was a teenager, the recurrence caused him to revert emotionally back to a younger age. It was as if he was seven–years–old again, reliving his first brain tumor experience, and he kept his childhood security item—a small teddy bear with him, tucked under the hospital covers, like he had with the first diagnosis.
Luck held. With surgery most of the tumor was resected and symptoms disappeared. Three days later, on Thanksgiving, he was feeling well enough to be excited about the Thanksgiving dinner our hospital provided us. A table and chairs were brought in, along with a feast of good food. The nurses gave Jay lavish attention, they laughed at the corny jokes he told, and made us feel like special company.
Within a week Jay was out of the hospital, recovering well. But what to do about the remaining brain tumor slivers that were inoperable? He had already received his lifetime dose of whole brain radiation, and chemotherapy available offered little hope of curing a recurrent tumor. But there was a small chance that stereotactic radiation might stall tumor growth. We set up a consultation.