Going into 2017, I have mixed emotions about cancer. I feel optimistic about my son’s battle with the disease itself, but I am frustrated about the long term side effects of the treatment he endured. It seems that with each passing year, we find out about more long term effects. I know from discussions with other parents, and from our personal experience, that survivors face numerous issues. Long term effects of cancer treatment are a complex problem that can involve or lead to physical, cognitive, and mental health issues. Regular follow-up is necessary, and for many of the issues this means trips to the hospital. These trips can be physically, financially, and emotionally draining.
Time away from school and work results in time spent playing catch-up. Long hours spent commuting to appointments take a physical toll of their own. The financial impact can result from extra money spent on gas, parking, wear and tear on vehicles, and food. The costs may be less than what were incurred during the actual treatment (surgery, chemo, and radiation), but they are just as real and can have a significant impact on families. Emotionally, the impact cannot be easily measured. Simply walking into the hospital can make children, teens, and parents feel anxious. Living with the constant fear of recurrence, or flashbacks to the time of diagnosis, can take a toll on the mental well-being of the patient or the family. Support for the mental health of survivors, siblings, and parents should be available and discussed regularly.
I am grateful that my son is a survivor so I feel guilty for mentioning anything negative about dealing with long term effects. It is heartbreaking that so many children die from cancer because research has not led to cures, and dealing with long term side effects is something that any bereaved family would gladly accept. My hope is that more funds will be given for childhood cancer research.
It is a complex problem, dealing with cancer. At the same time that research is conducted to find better, less toxic treatments for childhood cancers, more resources need to be devoted to survivors in the form of financial and emotional assistance.
My son will be leaving the children’s hospital before the end of 2017. The wonderful staff has been preparing him for that transition, and I have no doubt that he will manage it just fine. What remains to be seen is whether or not the long term effects of the treatment he received as a toddler and child will worsen and whether new ones will emerge. If they do, I hope that help will be available to him.
Karen is a writer and volunteer childhood cancer advocate. In the past, she was a financial planner and homeschooled for nine years. She is married to Frank and mom to Tobin and Katriel. Over the past 14+ years since Tobin’s diagnosis, Karen has supported other parents with similar experiences and has been part of many organizations which raise money for childhood cancer research and awareness, especially paediatric brain tumours. Notably, Karen is a very active volunteer with Meagan’s Walk, a volunteer-based organization for paediatric brain tumour research.