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The burden and blessing of childhood cancer survivorship


Gabes My Heart

September is Childhood Cancer Awareness Month. While I am proud to be a part of the childhood cancer community, I sometimes feel that as our children graduate from active treatment back into the real world we can lose sight of the value of the close relationships we have formed along the journey. This year, one of my objectives for childhood cancer awareness month is to shed light on the true scope of the challenges facing our youngest cancer survivors. Childhood cancer survivorship is both a burden and a blessing for our children and a lifelong battle no matter how long that life may be. My son Gabe is a 9-year-old cancer survivor. He was diagnosed at the age of 1 with a soft tissue tumor in his sinus passage. Gabe now struggles with the side effects of chemo, radiation treatment and repeated surgeries. Most acutely, 28 radiation treatments destroyed his pituitary gland and arrested the growth of his jaw on the right side. After falling off the growth charts for a while, he is finally growing with the help of a human growth hormone. Unfortunately, as Gabe's growth speeds up so does the deformity of his face on the right side.

Gabes My Heart

Photo by Red Pepper.Far from being singular in the late-term effects of cancer treatment, Gabe, in fact, is exposed to an amazing community of friends who live contentedly with amputated limbs, graft-versus-host disease, cognitive delays and/or secondary cancers.It is vital that our children learn to rely on their cancer community as they are likely to live for many years after active treatment ends. As they grow, the long-term effects of cancer treatment become much more evident and extreme. Some, like Gabe, suffer greatly as their bodies and brains were not fully grown or developed when treatments were administered.The side effects of childhood cancer are not only physical, there are emotional burdens of survivorship too. Guilt and worry are prevalent among parents of survivors. Our children are encumbered by having been exposed to very adult medical issues at such a young age that they can have difficulty relating to children their own age. Survivors of childhood cancer can be overly anxious and some even suffer from post-traumatic stress disorder (PTSD). Hardly surprising when most of them have to use both hands to count the number of good friends they have lost. With all the responsibility of carrying the torch for lost friends and dealing with both medical and educational issues it may seem like the blessings of childhood cancer survivorship are hard to find - but they are in abundance. As parents we are blessed to know that we are not alone in the issues of raising a survivor. We commune in online networks, in chat rooms or in-person support groups at organizations like Gilda's Club.Our children are blessed to live in a time when there are survivorship clinics with incredible teams of doctors to chart and treat the long-term effects on our children's bodies and minds. There are opportunities to find kinship and camaraderie at survivorship camps, where, for one week, our heroes lose the burden of being a curiosity and enjoy being around true peers. As I work to educate families through my non-profit organization, Gabe's My Heart, I communicate a very clear message of optimism. The concept is that by encouraging and empowering families, we enable them to stay composed and focused as they face the diagnosis of childhood cancer together as a family. I strongly believe that we can carry this philosophy forward through to survivorship.The relationships my family developed along our journey have helped guide us through the worst times in Gabe's treatment. Those same friendships are still the ones I rely on for support in my times of doubt and frustration. By nurturing those friendships I stay close to my cancer community, and I am reminded not to focus on the burdens of survivorship. We received the most amazing blessings from cancer survivorship, and that is Gabe himself. He is here with us still and we will face his late-term effects, whether medical or emotional, together as a family.

Photo by Red Pepper.Lu Sipos is founder of Gabe's My Heart, a non-profit organization that provides education and support to families and children with cancer through its Chemo Duck program. She lives in Spring Hill, Tenn. with her husband Rob and movie star, cancer survivor, son Gabe.

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