Waiting for further insight into the latest growth in Cailyn’s tumour has been a surreal experience. It feels like we’re in the eye of a storm, waiting for the wind and rain to arrive. Although the timing of this calm has been appreciated – including a long week-end to celebrate Thanksgiving with family and friends – my awareness that a front with horrendous wind and rain is currently heading our way certainly challenges my ability to enjoy the special moments.
I heard from Cailyn’s oncologist late yesterday afternoon. She had just finished presenting Cailyn’s case to her peers at the provincial Tumour Board meeting. As a result, the waiting period will continue. On one hand, we can celebrate that we have some wiggle room to understand the options and to investigate whether or not Cailyn can participate in a trial of a new drug. On the other hand, this situation is not unfamiliar to us… before Cailyn started her last 4 years of chemotherapy, we were in the exact same position… there was documented growth and we waited for the next MRI results to confirm that we had to act. Of course this waiting is horribly difficult. There is a chance, though, that the progression (documented as a 75%+ increase in the area of two measurements between January and September) can stop. This balance between waiting and acting is necessary because there are serious risks / ‘quality of life’ realities associated with any treatment option.
We will also be waiting for Cailyn’s tumour to be tested for a specific mutation. If it tests positive, she will qualify for the new drug trial mentioned above. This is something that she would begin as soon as it was organized, without waiting for the next MRI.
I shared all of my notes with Cailyn and my parents last night. I could really see Cailyn’s maturity and strength in her reaction. She definitely took everything seriously but she didn’t appear to be too overwhelmed by the situation. I appreciate that it would have been tougher for her to manage everything if I had to tell her we were starting treatment next week. That doesn’t detract from her ability to focus on the potential options; their risks; and, the plan to determine actions after the next scan, approximately 6 weeks from now.
In parallel with my efforts to understand the pros and cons of the options available to Cailyn, I’m going to do my best to stay in the moment… it’s the only “place” we have the opportunity to have fun, experience peace, or make a difference to someone or something. I appreciate first-hand how challenging a goal this can be…
Yes… it’s all very surreal…