This is my third post in honour of Childhood Cancer Awareness Month. The month is over but the need for a cure remains.
I watched a burial service on Facebook last month for a young person that we know through our journey. Anthony’s tumour, like Cailyn’s, was also diagnosed as a slower-growing tumour (glioma) in his brain-stem. His mother, Ann, and I connected at a neuro-oncology conference and realized that our kids were on similar journeys. Unfortunately, earlier this year, Anthony’s tumour ‘morph’ed into the most aggressive brain tumour I think there is, a DIPG (Diffuse Intrinsic Pontine Glioma).
I can’t even begin to imagine what Ann is feeling, nor do I ever want to be in a position where my understanding becomes crystal clear. This is one of the worst things a family can face and, at a time when they need the most support, they can feel the most alienated. The loss is huge, the hurt is unavoidable, and the concerns of the “normal” world are so inconsequential. Just think about how difficult the simple question of “How are you?” would be to answer.
When someone asks me how I am doing, I often struggle to answer. Not because everything is going wrong, but rather because not everything is quite right! There are a lot of great things…
1. Lauryn has started to read voraciously. She has read twelve books since the beginning of July. A truly blessed outcome is that her relationship with Cailyn has blossomed as they discuss the books that they have both enjoyed.
2. Academically, the girls’ school years are off to decent starts. Activity-wise, Cailyn is helping manage the school basketball team, she’s in the senior orchestra (playing violin), and she’s playing wheel-chair basketball. Lauryn’s 14U club volleyball team started their season with a bang… winning a 15U Exhibition tournament. She is playing basketball at school and playing cello in the school orchestra.
3. I have been focusing more attention in the last few months on rebuilding my career than I have done in the last decade. As a result, I have had the occasions to remember my power to create / contribute to exceptional experiences and processes. These occasions are diametrically opposed to the majority of experiences in the medical arena, where we are often reminded that we are powerless to change the situation that takes us there.
4. Cailyn’s tumour, after a year of growing, has been stable for almost a year. It would be very wrong to not have this on the positive side of the ledger. We have had no weekly chemo, with its difficult side-effects, since before Cailyn’s foot surgery in April of 2016.
So, why is it so hard to just answer “I am doing really well, thank you.” Because, unfortunately, I know there is no guarantee that Cailyn is “out of the woods”, with no risk of tumour progression and no serious long-term impacts from all of her interventions. We have had four different appointments with her specialists in the last three weeks… every appointment is an “in-the-face” reminder of the challenges associated with Cailyn’s health journey.
Regardless of how difficult it might be to answer “How are you?”, thank you for continuing to ask parents like me. It gives us an opportunity to “unload”, to feel better understood by those we care about, and to decrease the sense that we are alone in both our situation and feelings.