Survivorship Matters Blog By CAC2 Member Mary Beth Collins
The day that a child completes treatment brings a special kind of glory. Some hospitals even have huge bells to ring to signify the occasion. Regardless of the symbolic gesture, a parent’s spirit hears trumpets sound, now beaming where darkness and fear were ominous for months or sometimes years. One’s life immediately transitions at such times, divorcing from the days of treatment highs and lows, fears of pending death, and the mosaic of so many emotions when parents yearn for children to be healthy enough to complete treatment. It is winning the grandest lottery on earth: your child has survived the unimaginable and is no longer in treatment.
Every day post-treatment is steeped in gratitude; it is the foundation for every step that follows. Every moment, every day, is a gift. And when sipping the first cup of coffee in the stillness of a new day, a glass of wine at the beach, or an unexpected pause waiting for the elevator or standing in the line at the grocery store, a parent’s mind returns from time to time to the sheer awe of his or her child achieving survivorship. At these times, Moms and Dads silently whisper “Thank you” to the world and above for the gift of their child. The sentiment is a constant. Gratitude is the heartbeat of the spirit of parents and survivors who now live lives that will never be taken for granted. So … when families are voicing the struggle with lifelong side effects of children who endured childhood cancer treatment; when they are articulating serious concern for health issues, fears regarding how to financial support something not covered by health insurance, or worries about bullying or how their child fits in socially with fellow classmates; when they confide their survivor may never be able to live independently, there is no need to remind them: “Just be grateful your child is alive.”
The phrase is heard countless times over the years, often by well-intended, caring people. I’ve heard that phrase shared by family members, neighbors, friends, fellow churchgoers, educators, and even some medical professionals. It is an “easy-to-go-to” statement; the kneejerk reaction that arises from awkwardness. It brings everyone back to what is neat, clear, concise: your child survived. It’s a way to re-establish what is comfortable, and to emotionally proclaim that something so unbelievably frightening is over and things have reset to the way they should be. The statement comes with an unspoken assumption that everything is now okay, or a need for the person to believe that it is. Sometimes it comes from medical experts who treated patients in the days with higher mortality rates, still celebrating every survivor story but now struggling with the gray of survivorship. As a parent when confronted with that type of response, I am left muttering a rather despondent “Yes, but…..”
Some people simply cannot relate to the ongoing challenges of survivorship, and want to offer sometoken of positivity believing such words are a comfort. In reality however, this statement can be fingernails on a chalkboard for a parent for two main reasons: 1) a parent’s gratitude is already passionate and everlong, and 2) it minimizes very real health and psychosocial concerns that often can be challenging, or even life threatening. The phrase is a testament that it must be black and white; a parent can either be gracious OR challenged, but not both. The reality is they co-exist. There is real heartache, real worry, real exhaustion in the day-to-day living of post-treatment. I suspect many are at a loss to what to say to that reality. I also suspect many family members and friends have an emotional need for the fight to be over, already so exhausted from months or years of worry from the unstable nature of childhood cancer living. What is intended as a naive and uncomfortable attempt to soothe and put unresolvable worry at rest instead puts salt in tender wounds. It reminds parents most cannot understand the challenges of survivorship. An attempt to comfort has resulted in a confirmation that the family is on their own.
The phrase is more resounding than most realize, as it echoes in a void of support services. For families living with hearing or sight loss, cardiac disease, limb-loss, residual disorders from their cancers, digestive issues, chemo-brain or chemo-induced ADHD, cognitive decline, or organ dysfunction, the impact on academics and quality of life are varied, and often gets worse as children enter puberty and mature into adulthood. Without psychosocial support for survivors and their parents, families are left to fend for themselves as they struggle with how to best juggle these issues, and how to pay for support with less than adequate health insurance for costs that far exceed the family budget. Or worse, many parents struggle with survivor issues where no support exists at all.
Without improvements to health insurance, professional development for adolescent/adult primary care physicians and psychosocial support in the general community, or the creation of appropriate services, it seems much of the childhood cancer community and the world says “You should just be grateful your child is alive.” If a health insurance policy only approves one prosthetic for a lifetime, how can a family support a growing child who lost a leg during tumor-resection surgery? With the intense anxiety that accompanies childhood cancer treatment, where is the guidance and counseling for parents after treatment is over given the high vulnerability to develop depression? Where is transitioning youth planning or vocational counselling for adolescent/young adult survivors?
While the number of childhood cancer survivor clinics are increasing, some do not provide support for side effects. Medical staff will explain to patients that the appointments are a means to annually document the lifelong impacts from treatment received years earlier. Quality of life is not addressed, simply observed and noted appropriately. That stark reality is a strong discouragement for patients to return to the hospital, feeling like they are lab rats instead of patients. A few years ago, a 23 year old turned to an online neuroblastoma Facebook group asking who are the doctors to care for side effects, since her survivorship clinic is only documenting them and told her it was not the purpose of the evaluation to treat the side effects. The only thing more painful than hearing a survivor ask such a question was the lack of response from fellow families also living in a world without support.
The void is real for an ever-increasing group of survivors struggling with side effects and no options to minimize the impact on quality of life. Some survivor clinics are beginning to outline issues, and some even go out of their way to pair patients with emerging services. My son has the benefit of working with a very sensitive and well-intentioned survivor clinic who always wants to provide some type of response to every issue. In my son’s early teens, with hearing loss increasing, cardiomyopathy developing, chemo-induced ADHD well established, and cluster migraines forcing him into home/hospital care for academics and living in a dark, shade-drawn room most of the time, his need for psychosocial support was critical. We explored everything provided to us. Josh would attend appointments with active migraines, sometimes excusing himself from time to time to vomit, in order to talk to nonprofit executive directors or social work interns who simply proved they didn’t understand. They offered him camp experiences and support groups targeting teenagers recently off of treatment, his supposed peer-to-peer support was focused on anticipatory nausea, nightmares of needles, and fear of relapse. I found a survivor conference that included an anxiety workshop, in which the presenter referenced preparing for a biology test as an example of stress. Josh demanded we leave immediately saying, “Let me tell that guy what real stress is!” When Josh met with a social work intern at our hospital, she talked to him for fifteen minutes and reported to me he was a great kid who didn’t need any help. I had desperately reached out to her earlier in the morning begging for a meeting after he shared with me (the first of three times in his life) that “there is a fate worse than death, it’s this.” Where is the support for a teenager whose treatment was in the toddler years, and issues are escalating in puberty? Where are the psychosocial support standards for children grappling with maturity beyond their years, trying to make sense of day to day living with challenges that limit so much of everyday life? Where is the career counseling for adults inspired to do something of value but are convinced they will have to flip hamburgers for the rest of their lives? Where is the confirmation that our community still supports our children after they survive?
Every time a childhood cancer survivor invests in hope that a medical expert can help or a service exists, and then is let down with the realization that faith was unfounded, it confirms the suspicion that no one understands and nothing will help. One of the concerns I’ve had over the years was that my son would develop tinnitus, a common occurrence with chemo-induced hearing loss. Each year he was screened, and he responded that it wasn’t an issue for him. A few years ago I spoke with a close friend about her tinnitus, and learned a great deal about how challenging it really can be as an adult. At dinner that night I shared with my son how grateful I was that he was spared something that could make things even worse. “Oh Mom, I have it,” he replied. I couldn’t believe my ears. I reminded him I was at the screenings and heard him tell his doctors that he didn’t have it. I will never forget his response, and I paraphrase: “Mom, why would I tell him I have it. You know what will happen next. I’ll have to cancel something I want to do to stay at the hospital. I’ll get tested. We’ll have to wait for results. The news will be bad. And worse, they will tell me they can’t do anything. I’m tired of hearing how bad my health is. I’m tired of talking about how it is getting worse. It never gets better.” His words sunk in slowly, working their way from my breaking heart to my mind. And then it suddenly occurred to me: “Honey, are you telling me you have other symptoms you don’t talk about?” And he quietly said “Of course, Mom.” Then he got up and left the room. When we fail to provide what our survivors need, when we are so consumed with gratitude for our children surviving that we stop short of supporting the issues that challenge them, we lose their trust in the medical community, in our schools, and in our families, and then our survivors truly are left struggling alone.
It is time to provide real options that make a difference in our childhood cancer survivors’ lives, as it is their quality of life that serves as the barometer of our success. In response to the first Survivorship Matter blog “What is Survivorship” published only a few months ago, a survivor commented about the duality of gratitude and the challenge of lifelong side effects as simplyas I’ve ever heard it: “I often say ‘the good news is I’m a childhood cancer survivor; the bad news is I’m a childhood cancer survivor.’ Grateful to still be here, but it’s sure not been an easy journey.” When we listen to our childhood cancer survivors, we learn. The gratitude is real. But so too is the challenge.
Mary Beth Collins, author of the blog #SurvivorshipMatters, is a parent advocate with a son who was diagnosed with neuroblastoma in 1999 and juggling a number of chronic side effects from treatment. For 20 years she has advocated for childhood cancer issues, focused more recently on issues related to survivorship.