One might think, in the absence of active treatment, that life goes on as normal. There definitely are normal components to my week that can capture and hold my attention. Consuming a huge chunk of my energy, though, is a constant and undeniable awareness of this latest addition to Cailyn’s journey. This awareness colours everything… adding intensity to emotional moments, and seriously limiting my capacity to care about day-to-day considerations.
I see my pink sticky-note with “5 X 5” written on it everyday (“Turning the Page”). I love this mantra but I realize that the worries I have today about the outcome of my daughter’s health journey will most definitely matter to me in 5 years. Obviously, we can’t cross a bridge until we physically get to it, but the enormity of the bridge makes it plainly visible from any direction and at any time.
Some of the steps we’ve taken towards “the bridge” are:
1. Sending a “long” email to Cailyn’s oncologist. Well… “long” refers more to the amount of time it took me to compose than to the actual length of the note. My intention with the email was to document what I understood from our conversation last Thursday afternoon, and to ask questions, whose answers will hopefully guide us towards good decisions. Unfortunately, the most important questions don’t have black and white answers…
2. Beginning to understand what’s involved in participating in a drug trial. The trial is hosted by Toronto Sick Kids. As a result, if Cailyn’s tumour has the right “inhibitor”, we’ll be spending a significant amount of time in Toronto. Cailyn was thrilled to learn that the drug would be taken orally… meaning that she wouldn’t require surgery to put in another port. She wasn’t thrilled about the amount of time she would be spending in a new and unfamiliar place, and neither of us like the idea that this drug would be taken for an indefinite amount of time. Thankfully, Cailyn’s New York neuro-surgeon is coming to our aid again. He is arranging for the required testing to be conducted in New York, the only place where there is enough tumour to actually complete the test. This speeds up the process of learning if the drug trial is a possibility for Cailyn.
3. Contacting key support resources at Cailyn’s school and at London Children’s Hospital. When I picked Cailyn up from school a couple nights ago, I felt that she was a little low. I asked her “how are you doing, Cailyn?” She simply said, “I feel like I’m drowning”, and then added “academically”. I was shocked and truly concerned for her emotional well-being. She has never over-dramatized anything pertaining to her health and well-being, so her statement really got my attention. This interaction has sparked emails and phone calls to the individuals who can hopefully help us create academic solutions and who can help her cope with all of the emotions that must be roiling around in her head. I’m afraid how this kind of feeling could deepen with the advent of treatment.
“Staying in the moment” has been a real challenge over the last three weeks, with each day presenting a minimum of at least one interaction with her team. I am sincerely hopeful I have more success over the next three weeks!