Survivorship Matters Blog–What Is Survivorship?

What is survivorship?  For anyone touched by childhood cancer, the word is intimate, emotional, and somewhat complicated. Whether you are a child in treatment or beyond, parent, friend, practitioner, or researcher, the word is familiar, personal, and identifying. For each person, the word represents something unique. Is it just a label? Is it elusive? Is it a dream never realized? Is it a charge? Is it determinant? A proclamation? A destination? A victory? A curse?  An honor? Survivorship in its entirety embodies all of this.   All versions are worth exploring, if we are going to really embrace what survivorship means in the childhood cancer community, and what needs to be done to better understand survivorship, celebrate survivorship, and to truly support our survivors.

According to the National Cancer Institute, “survivorship focuses on the health and life of a person with cancer post treatment until the end of life.It covers the physical, psychosocial, and economic issuesof cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life.” So for the medical community, in other words, this is the goal for countless children who passed too soon. Our doctors, our nurses, our researches have fought passionately and completely to carve out treatments that allow our children to live. For a child to achieve the defined status of “survivor,” it is crossing the grand finish line after so many years of frustration and failure.  In 2019, more children are surviving cancer than ever before, and according to the Coalition Against Childhood Cancer (CAC2) Fact Library, it is expected that more than 500,000 children will have survived cancer by the year 2020.It is a huge victory for the entire medical community, and for that everyone is grateful.

With childhood cancer however, we need to slow all of this down a bit.  It doesn’t seem appropriate to think of it so “black and white” – one day your child is in treatment, and the next day treatment is over and now your child is a survivor. How do you qualify a child who because of treatment survives much longer than the prognosis predicts, but may never get beyond treatment? How do you reference death-defying moments while in treatment, since many children survive numerous therapies in a protocol before the chance to begin an official “standard of care” therapy for their diagnosis? Children are in protocols that last months, some even years, and endure so many difficulties because of the harsh treatments; they are surviving the treatment as much as the cancer.  What if, as is true for many kids, there is no protocol that guarantees them a life post treatment? Maybe survivorship for childhood cancer can actually exist while still in treatment, if they are in fact surviving. It seems fair to say that what currently lives in the textbooks – like so much regarding childhood cancer – does not seem customized and cut child-sized to fit the experience of those living with, and surviving, childhood cancer.

Accepting the determinant of “post treatment,” of becoming an actual survivor, can make the arrival of that day a most conflicting one. It is a day where trumpets gloriously sound for prayers answered, and the realization of the dream of hearing: “Your child is now NED (No Evidence of Disease).” Yet in the background of celebration are pulsating fears of a high relapse rate, short-term and long-term side effects, and/or financial challenges. It is the day where dreams envisioned you at the top of a mountain with the sun on your face; yet, once arrived you instead find a mountainous landscape with higher peaks, valleys, threatening clouds and beams of sunshine dancing about the horizon. This is when the dream precipitates a reality hard to fathom: survivorship isn’t a destination, the end of a road, but an endless journey yet to travel.  The “normal” life your heart longed to return to has distilled into a life sprinkled with the aftertaste of that life before the diagnosis, now mixed with your team of specialists, follow-up exams, and evolving fears nestled in your mind and heart. The song of survivorship doesn’t blast as you once thought it would; instead it is a more tired tune and a touch off-key as the realization hits you that life with survivorship is a new unchartered chapter instead of offering the rest you had hoped and dreamed silently, optimistically, and subconsciously, but superstitiously never articulated. With a sigh, a high five to doctors, and a new prayer for maintaining good health, many parents accept the term survivorship with the NED classification, having absolutely no idea where the path may take them.  Most parents are just exhausted from all that they have been through and are grateful that the looming threat of death’s door, snarling loudly and regularly while in treatment, has quieted down and created some breathing room for the moment.

Part of the challenge in living in the world of survivorship is the shift of comradery with families still in treatment. There is a gentle silent sensitivity returning with your child, now labeled survivor, to the clinic for follow up. The clinic appears the same with chairs, equipment, toys, and medical experts unchanged. But parents with survivors breathe an unspoken token of empathy to families that they have “left behind” because they are still in treatment. Words inadequately express the uncomfortableness of knowing your child’s survivorship is an unrealized dream for terrified parents still entangled in treatment measures to save the child, rather than to sustain a child. Sensitive glances and lingering thoughts compel parents of children still in treatment to journey on, sharing hope that these beautiful children too can become survivors. These moments, at their worst, dare to be tinged with guilt.  It is an unfair place to stand, feeling guilty that your child has responded well to treatments while others are not so fortunate; especially when news is shared that a child is not responding well to a therapy or stopping treatment altogether. It speaks to large hearts and incredible empathy that gratitude, guilt and compassion for others can co-exist. Parents of survivors learn quickly how to master such complexity.  Unfortunately, however, some parents find the weight of luck bestowed upon them suffocating as they struggle to accept now in survivorship that not every child will follow them. And at times they find it hard to confront their worry, challenge, and frustration with managing a collection of health issues, because they may only be able to allow themselves to be grateful their child is alive.

In those early years of survivorship, side effects from treatment are quickly determined. Some children are lucky, and are truly blessed with a side-effect free life after treatment.  Fortunately for many other children, some immediate issues begin to disappear as they grow older, stronger, healthier.  Life carves out a new normal when days are spent more at home and school, consumed by friends and afterschool activities, and management of side effects – academic support, visits with doctors, medications and the use of assistive technology- blends with everyday life.  Families settle into a definition of survivorship that feels comfortable. Challenges with a growing family may even resemble a more typical one at times, with just a whisper of the threat of a potential relapse or the emergence of additional side effects. Some parents however, even years out of treatment, struggle to mutter the word survivor, as if the word alone may conjure a relapse or new diagnosis.  Life is still anchored in monitoring health symptoms and worrying about potential problems. Sometimes an overwhelming threat of possibility achieves a compromised reality when fear looms large and unbridled.

Throughout the years in survivorship, changes continue, and for some children issues grow more concerning and new side effects evolve. For the child who is in middle school or high school, these changes start to occur at a time when most are examining individuality and defining what life means to them. The increasing side effects and management of them is almost incomprehensible while struggling with the shock of how dramatic the changes can be during puberty. A teenager who otherwise is beginning to determine who they are, what interests them, navigating interests in dating and life in general may find that medical issues bolt them to being a “survivor” first and a teenager second, preventing many teens from living the life they watch their friends enjoy. As more challenges develop, surviving survivorship becomes extremely hard as it becomes obvious that it is the differentiator that prevents them from just being “one of the kids” at school. What is worse, their struggles can be routine, with quality of life significantly compromised, creating a life in which they are barely surviving day to day.  It is a far cry from being the superhero that everyone told them they were when they were younger.

What some families are starting to realize is that for many of our long-term survivors, very young children during treatment who mature and transition into adulthood, there is a life beyond survivorship. These teens and young adults declare independence from their medical history.  These survivors have tired of the label and remove it since it does nothing to describe the day-to-day struggles that now define their days.  Some without any memory of the treatment, but having lived a lifetime steeped in survivorship, decide that adulthood will be free of the bondage of side effects, doctor’s appointments, and looming threats of what may come next. Independence of their medical issues is a proclamation to the world; a promise that life will be different simply becausethey have decided they need it to be. Resistance to evaluations, ignoring new symptoms, and often a refusal of medication, young adults decide to go rogue in mind, body and spirit, leaving parent advocates fatalistic about a life without monitoring and continued care. But the aftertaste of survivorship can’t be shed like a snakeskin; the essence still lives on in these survivors who insist on ignoring it and enjoying their freedom. That is until the next threat of a serious side effect or concern about a new cancer diagnosis demands acceptance of their medical history and their vulnerabilities as they explore the evolving reality of their health.  Beyond survivorship is plagued with a medical history that is grappled with to the level that a survivor has the strength to recognize it in the mirror, or when symptoms no longer comply with the need to deny it.

Returning to the medical definition, embracing survivorship in childhood cancer certainly is a medical charge if we take to heart the last sentence: “Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life.”  It reminds us all that there is so much still to do to educate parents and service providers about the issues after treatment, to support children as they mature into adults, and carve out programs responding to the needs of our survivors.  It is time more survivors thrive, rather than just survive.

Fortunately, not every survivor is overwhelmed by significant side effects throughout the lifespan. Survivorship brings them good health, and these young adults enjoy living a life of their choosing outside of annual evaluations.  Some of these survivors, inspired by their medical teams, embrace their history with great determination to help other children plagued by childhood cancer. Tomorrow’s nurses, doctors, researchers, radiologists, child life specialists, and policy advocates will be sprinkled with survivors sharing hope with families and colleagues through their own stories, and impassioned expertise.

It is important to recognize the needs of all of our survivors, and the great variance of quality of life among them.  There are some similarities among each diagnosis, but even then, due to familial vulnerabilities, two survivors of the same cancer can still struggle with different issues as they mature into adults. One survivor can be free from issues, while another can struggle with growth issues, cardiac disease, prematurely-aging organs, limb-loss, hearing loss, cognitive delay, secondary diagnoses, or an endless list of other concerns.  It is a great charge to create a framework of support for our survivors.   It is the blessing granted by beating so many childhood cancers with our current treatments. There is still so much to learn about survivorship and how to best support our survivors.  The time is now to come together and focus on what quality of life looks like for our survivors, grow support and services for these teens and young adults, and help provide the life we dreamed for them when we prayed they would survive. Our survivors are depending upon it.

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.

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