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Creating a Career in Children’s Cancer Advocacy

Susan Schnur: Tell us about Adam, and about what it meant to care for him.

Adam was diagnosed in infancy with a large brain tumor. We were told he had only months to live. But he lived until he was almost 14. Being his mother was a 24/7 job; keeping him alive was tremendously complex—he had one catastrophic complication after another. He had many surgeries, a hemorrhage at age three that left him aphasic, with serious word-finding difficulties. Pie had perceptual problems, disabling headaches, constant pain. We never knew what would happen from one day to the next—vomiting, seizures, we just didn’t know. Adam wasn’t expected to live. How do you raise a child who is not expected to live? For one thing, you’re medically hypervigilant. This part was extremely stressful for me. I had to be the buffer between Adam and the rest of the world in every way.

Like many children with brain tumors, Adam also had very disturbed sleep patterns. He woke up at 4 AM, SO I did, too. We’d work on his skills—social skills, academic skills, motor skills. One morning he asked me, “Are you my mother or my teacher?”

Was that a good question?

That was the question. I was trained as a neuropsychologist— that term didn’t actually exist yet—specializing in children’s cognitive and language development, and now I had this damaged little child. All my life I had really wanted an academic career. But that’s how it worked out; it’s your responsibility to love and take care of your children. I was equally concerned with raising my daughter—with raising a healthy sibling—not just raising a dying child who wasn’t dying. How do you raise a dying child and his sibling day to day, how do you manage, side by side, the banality of living and the terror of dying?

I founded the Mary McDowell Center for Learning, a school for children with learning disabilities, during this period. There was the need for an institution like that in lower Manhattan and Brooklyn. I visited many schools and saw how they worked. When I founded the Mary McDowell Center, I thought it might be appropriate for Adam, depending on his needs at the time, but as it turned out, Adam didn’t go there. But it serves children like Adam— kids with spark who require extra help. The fact is, I was Adam’s neuropsychologist—I was his teacher and his mother. I had to have a grasp of his core cognitive integrity, of what kinds of instruction would yield only humiliation and frustration for him, and what alternative routes would work. Adam could learn if only we were clever enough to adapt the world so that he could succeed at tasks. We had to enable him to bypass his lower-order deficits and access his higher-order intellectual potential.

What happened, then, around the time that Adam died?

My husband and I separated, my daughter was in her senior year of high school. No nurses anymore, no kids, no husband. My entire world disappeared—work, love, home life. That’s enough to kill anybody. You know, when someone so close dies, disappears, it violates object constancy—physically and psychologically. You expect noises when there aren’t any, you’re primed for routines when there are none. No crayoned drawings, no unmade bed. It took a long time for me to learn about that absence, about Adam’s not being there. You’re still listening for noises in the middle of the night, you expect the bus to come down the street. One has to learn to unlearn all the connections—not just to Adam, but to events, objects, everything associated with him.

When children die, parents’ attachment gets mapped onto residual events and ideas and objects. At a gathering where there were other women who had lost children, we started to talk about the physical things associated with our children, and everyone pulled out a picture, a locket. It’s a way of holding on. Your children are so physically close. Clothing, even a foundation named for your child, helps us physically hold on to our children; it’s part of being a mother. The physicality of the mother-child bond is so elemental. There were several times when Adam was expected to die, and I carried him around with me all the time. I had this notion, this irrational fantasy, that I could protect him with my body, that somehow I could keep him alive with my body.

It was clear to me later that I had post-traumatic stress symptoms—I had all the classic signs: intrusive images, depression, sleeplessness, startling. For a while, I just tried to do one thing every day that would put me back in touch with the world. A walk, a lunch with a friend, and if I couldn’t do it, I couldn’t do it. And it was really a tremendous agony to figure out what I was going to do next; I was unemployable. How could I explain to a prospective employer what I had spent the previous 13 years doing? It shocked people. I couldn’t recoup an academic career. I took a course in pediatric neuropsychology to see if I could do a second post-doc. But it didn’t fit—I knew both too much and too little. It was very hard to translate my experience into a “career.”

Ultimately, though, your 13 years of parenting and your Ph.D. and your non-profit work—it all must have made you professionally singularly valuable.

Yes. Well. First, I had to stop hemorrhaging inside. I learned to protect other people from how I felt. But it’s always there—the loss, the anguish—just not so close to the surface.

I started consulting for a few non-profits, and I was on the board of the Children’s Brain Tumor Foundation. They wanted me to be their first executive director, and I helped start the non-profit North American Brain Tumor Coalition. I began to get inquiries from the National Cancer Institute of the NIH, and the FDA, to serve on advisory committees as a patient advocate. The whole idea of “patient advocacy” was coming into its own because of AIDS and breast cancer activism. At first it felt really difficult to be immersed in childhood cancer issues all the time—no escape, all these parents turning to me for advice, but then I realized, “Flow incredible. How bizarre that I’ve come into this high-profile career.” The very things that I thought were discontinuities and detrimental qualities became the combination that these national organizations found valuable. I worked very hard to learn about national issues and make my role valuable.

I founded the Children’s Cause for Cancer Advocacy six years ago. Doing the work nationally on behalf of children with cancer, and their families, was sorely needed; no one was following the issues, and I now felt that my combined experiences obligated me to do this. I wrote a chapter on advocacy for a pediatric oncology text. Five years after that, I wrote another one. My grasp of the issues was better. I became a professional of a rather unique sort—my work had to do with saving other children, not Adam. I always talk about “our children.”

There are two issues in pediatric oncology where I thought my advocacy could make a major difference: one has to do with accelerating access to new, targeted therapies to treat childhood cancers, and the other, making sure there is appropriate follow-up care and services for survivors, for children and young adults who have late effects from cancer therapies. Hopefully newer, more targeted treatments will eventually result in fewer late effects. We do training, conduct workshops, craft legislation, write about cancer policy, and advise national programs.

Do you feel that people who have not lost a child can understand your experience?

Well, I don’t feel anymore that parents who have lost a child are the only ones who can understand. Over time, you learn other ways to translate your experience. An example is the classic dilemma of how to answer the question, “How many children do you have?” That used to be agonizing. I would say, “I have two children. I lost one, and one is in law school.” Now I have other words. “I work as a national advocate on childhood cancer issues.” People know you don’t do this unless there’s a personal reason. And you learn that eye contact can communicate how very personal these reasons are.

Some parents of special-needs children feel they can never do the right thing to help them.

That’s true. I’ve called this the double-bind that parents of special-needs children experience: If we don’t spend “sufficient” time reinforcing lessons from professionals, we are seen as neglectful. But if we understand our children’s strengths and challenges and try to recommend strategies for learning and coping, we are seen as “overparenting.” As a professional, I can now frame this as a challenge: Flow can professionals collaborate with parents as peers, as they struggle to urge their children toward competent futures? Flow can neuropsychologists see parents as collaborators? Parents are the only ones who must integrate the information about their children from the multiple disciplines and specialists who see them. How can parents translate their wisdom into strategies that can be implemented at school and at home?

Adam asked you whether you were his mother or his teacher. Flow about Adam? Was he your son or your teacher?

Both. His own fierce determination and our approach to cognitive rehabilitation enabled him to jog, to be my sous-chef, to go to a local public school and to after-school programs and music lessons. He was loving and funny; and \\iijoie de vivre was irresistible. He had the desire, above all, to be just like a “normal kid.” All our children have that desire. They have a profound wish not to be socially isolated, and they have a deep delight at continuing to be alive— just like everyone else. How can we meet this desire? Like so many childhood cancer survivors, Adam was socially isolated. Only when we know how to teach successful social interactions can we begin to match the wishes and the rights of our children to be just “normal kids.”

Adam did have one friend whom he saw occasionally, and this ordinary interaction with a peer was perhaps his greatest joy. In one of his last stories, he wrote: “This past weekend my friend Stuart came over to visit. We bounced around. We goofed about. We both went to see ‘Teenage Mutant Ninja Turtles’. It was grand.”