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Prepping for the Day You Hope Never Arrives: Facing Recurrence

It was 1998, and 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 filed 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 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.

We had to work with a new pediatric oncologist, because when Jay was five years post cancer, our insurance company decided that he didn’t need to see an oncologist anymore, and he was routed to a general practice pediatrician.

I told our new oncologist, what I knew, recounting our past eight years, my vocabulary carrying perfect medical jargon. The world of childhood brain tumors taught me to speak professional-to-professional, to shake off the happily-ever-after aspect of life. I wanted to be told the brutal facts, and I’d learned that even the slightest emotion in my voice might prevent doctors from telling me everything I wanted to know.

Meanwhile I encouraged Jay and our sixteen-year-old daughter to continue on with their ordinary routines, to live as normal as possible. I forced myself to stay in the moment so that I could help my children stay calm. Having a positive attitude was important to Jay. Although he had very low energy he attended school half-day because he loved school.

Medical treatment was slow to begin because there were numerous procedures and appointments required to get the ball rolling. A month later we were still completing preliminary procedures. Truth to tell, we knew there was little hope for long-term survival, even with the best medicine, but we didn’t know what else to do. Most of all Jay worried that stereotactic radiation might make him so sick that what little time he had left would be wasted. While we waited we talked about calling it off and calling Hospice instead.

Jay was the one who first brought up the subject about not being sure he wanted to try stereotactic radiation because of the risk of debilitating sickness without resulting in a long-term survival. Although he maintained hope, at some level Jay seemed to recognize what he was up against and he made it easy for us to talk about it. But it only took me about two minutes to understand that we should not talk about it with anyone within our childhood cancer and childhood brain tumor support groups. When I attempted to bring up the subject that this recurrence had a poor prognosis and held little hope for a cure, I could feel a wall go up letting me know this was not their territory.

At the winter holiday party a few days later the director of our childhood cancer support group, a group that was associated with our hospital and that we had an eight year history with, hinted that it might be time for us to seek other social avenues of support now that the tumor had recurred. Jay’s best friend was also a cancer survivor in this group and he and his family did what they could to pave the way to help others accept us. But things never completely softened. Although we were never told to leave, it was clear they didn’t know how to include us. A similar situation occurred within a childhood brain tumor support group we were involved with.

I could understand the support groups feared we might become too needy and drag down the social gatherings with our sorrow. Most of all, I sensed they were worried that we might drag down the other families and steal their hope of survival. Although we were sad and needy, we had the good sense not to show it, because we understood that there was not an infrastructure in place within these support groups to meet the challenges of families faced with a recurrence with a poor prognosis.

Also least expected was the amount of personal friends and co-workers who backed away from us. It was difficult for other parents to understand that Jay was living with a brain tumor, and he didn’t want to be cut off and classified as dying. We were in an awkward stage where Jay felt well enough so that he didn’t want to stay home in bed, but it was awkward socially to go out.

But since we had experienced a solid background of good community support keeping us strong for eight long years, we were able to emerge with the confidence we needed to carry on. Still, it was challenging for me because far too often Jay and I found ourselves alone, at our wits end, needing someone to perk us up, and I felt it was my job to keep us both from becoming too isolated.

Holding on to faith, like a rope tied from the house to the barn in a blizzard, I began to accept support from new friendships that suddenly began to emerge like miracles seemingly from nowhere. Many of the good people who offered support were doctors, nurses and social workers, but none of them were assigned to our case. Instead they were befriending us and offering to help from the goodness of their heart.

These were the people we talked with, because they let us know they were open to talking about it, and they invited us into their homes to share a meal. Also, thankfully, a new social worker-friend also arranged for a volunteer organization that provided home-cooked meals, to have fresh green salads and hearty soup delivered to our doorstep on Tuesday afternoons.

The volunteers who brought the food offered to stay for a few minutes, and asked us about our week. They didn’t force conversation, but let us know they were available to talk if we wanted. Often we found something funny to laugh about too. It was becoming increasingly clear that the magic of comfort food, bringing us together with new friends, along with laughter, was a strong medicine that could carry us when all else failed.

Fortunately the sibling cancer camp our daughter had grown up attending was about to begin the winter session. All along my daughter had preferred the sibling only sessions over the combined sibling/patient sessions because she needed a group to call her own.

Meanwhile, my son continued to feel reasonably well. He had decided that someone would be the first survivor of his type of brain tumor, and perhaps it could be him.

Jay did his best to move forward with his life. As ill as he was, he gave the impression he’d outlive all of us. But suddenly late at night his voice grew raspy. The next morning he had difficulty swallowing and his chest rattled when he breathed. We called our doctor and after a quick exam Jay was admitted to the hospital. An MRI was ordered.

The news wasn’t good. The MRI showed the tumor was three times as big. I blinked in surprise. Jay knit his brow as he let the news sink in. We sat silent, frozen in the moment, while in a hushed whisper our oncologist explained that Jay’s body was beginning to shut down. We had an appointment the next day to start stereo tactic radiation. But we had run out of time. I made a quick phone call to Hospice and we waited for the hospital paperwork to be competed, allowing Jay to leave. By now he could barely speak, his words were slurred. He could no longer swallow water or eat food. Yet he was completely alert and fully coherent.

He wrote notes when he wanted to tell us something, and he wrote me a note that said, “How am I going to eat?”

I blinked back tears. My mouth remained open as I searched for a reply. I took a deep breath of hospital air that smelled of old wax and disinfectant.

“As your body begins to slow down, you probably won’t be feeling hungry,” I offered. We faced each other, not two feet apart, yet in different universes.

Jay stiffened, drew back from me, then he punched me in the arm, hard. A second later he pulled me close to him and gave me a light kiss on the cheek.

Twelve hours later Jay was settled in at home, where everything was peaceful and familiar, with his dog at his side. Hospice began, and the final piece in the mosaic of support created by a multitude of good people and organizations offering help when we needed it most it, fell into place.


Copyright © 2013 The Johns Hopkins University Press. Reprinted with permission.