September is the month dedicated to Childhood Cancer Awareness.
If you want the quantifiable statistics associated with childhood cancer, you can find stats on many different websites pertaining to incidence and mortality. I shared some of them in my post last year Childhood Cancer Awareness. In Canada, it is the second leading cause of death in children, after accidents.
The quantifiable statistics around Childhood Cancer are truly frightening. And, for each black-and-white statistic available, there are many immeasurable impacts that fundamentally change the lives of families with a diagnosed child. In honour of Childhood Cancer Awareness and thousands of other families on similar journeys, I will attempt to share some of the immeasurables, as they pertain to our health and well-being, our relationships with our families and friends, and our finances.
In this first post on the subject, I am going to focus on family health and well-being.
Children who are diagnosed with cancer and brain tumours don’t just suffer as a result of their illness and the treatments used to cure or control it. They also suffer from the long-term side-effects of their illness and the consequences of the treatments. Cailyn’s tumour and surgeries have caused left-sided weakness (hemiplegia) and double vision, both contributing to a significant fatigue. As a result of her hemiplegia, she has had reconstructive surgery and continues to wear a splint on her left foot so that the mechanics of how she walks don’t erode the quality of her knee and hip joints. Because she has double vision, she has had two surgeries and will need glasses, that occlude one of her eyes, so she can drive. From neuro-psych testing, we know that she has an unusually high number of academic strengths – but those are not always reflected in her marks, and I believe that it is because of the bone-deep fatigue that she feels frequently. She is but one of thousands of children who deal with difficult, lasting effects from procedures and treatments.
Understandably, the health and well-being of the care-givers doesn’t appear on the list of daily considerations… it can’t even make it to the top 20. Unfortunately, the wear and tear caused by stress is real and can be quite serious. Some of my medical team believe my brain tumour developed because my immune system was exhausted. Five years into my journey with Cailyn, I had 4 sinus infections over 5 months. A couple months later, I experienced double vision which signalled the presence and growth of a brain tumour. However, having been diagnosed and treated, I can now, unequivocally, state that my personal health doesn’t make my daily or weekly radar… not because it isn’t important, but because it isn’t AS overwhelming and consuming as Cailyn’s is.
Apart from the potential big consequences of this journey, there is the exhaustion that develops as a result of being in an extended “fight or flight” mode. This exhaustion impacts our ability to care about the day-to-day minutiae – not always able to enjoy the fun ‘stuff’ nor maintain the critical hopefulness that has fuelled all of our best decisions and actions. Even when children aren’t in active treatment, there are follow-up appointments and scans, along with the potential that our children’s diseases can return with a vengeance, as many of us have experienced. There hasn’t been one week in the last couple of months that I haven’t had at least one appointment for Cailyn. These appointments are stressful because some aspect of Cailyn’s health is being examined and considered, compromising the family’s sense of well-being.
This is just a glimpse… stay tuned for more…