This has been a week for focusing on Cailyn’s potential. Stuffing my mind are thoughts about the potential risks to the different treatment options, and the impact of all of this craziness on Cailyn’s academic potential.
I have had a headache the last few days that has been impossible to ignore. Wondering about how hard the winds and rain are going to hit is emotionally very uncomfortable – which moves me to wonder if that’s what is producing the physical pain I’m feeling…..
Cailyn’s oncologist followed up with New York on Friday, but there’s no results from the tissue testing yet. Hopefully, we’ll learn this week if Cailyn’s tumour has the inhibitor required for her to take part in the trial. If she has the inhibitor, I imagine we’ll be heading to Sick Kids in Toronto shortly after finding out. If she doesn’t have the inhibitor, we’ll be waiting until the 25th to learn what has been going on with her tumour since her last scan.
The Provincial Tumour Board recommended three treatment options if she doesn’t qualify for the trial… there are two chemotherapy protocols and one radiation protocol. I have shared these options with Cailyn and they have been percolating in both of our minds. She shared with my parents that she was leaning towards radiation because the treatment takes the least amount of time. I totally understand why, after just finishing 4 years of weekly chemotherapy in March, she wants the “fastest” treatment. Radiation scares me… I have told her that part of the process of choosing the best option, is considering all sides of the decision… pros and cons. Radiation brings with it the potential for a couple of gargantuan cons. When I told Cailyn that one of the real risks was the development of other malignancies at a later time, her response was “well… that’s later!”
There’s nothing easy or straight forward about making this decision, for either Cailyn or me. Sure, it’s possible to learn about the documented risks associated with each of the therapies. But, the likelihood of these side-effects happening is completely unknown and, even more concerning, the list of risks is not complete… Cailyn has experienced unexpected side-effects along her dozen years of intervention… side-effects that impact her today.
Understanding specifically how Cailyn would be impacted by each treatment option would definitely facilitate effective decision-making, but it would never make it easy for us. Now, with Cailyn participating in the decision-making process, it will be harder for her. 🙁 I do know that our decision matrix will include the variables of school and social life… as time and opportunity for the “normal” things will figure into our list of pros.
Here’s to having enough information and insight to make the best decisions.