An update that seems to have been forever in the making… and yet, there’s still much to be decided.
It was a very long day yesterday, involving over 3-1/2 hours of meetings with three specialists about the latest growth in Cailyn’s tumour. Thankfully, my headache didn’t start until we were driving away from the hospital but it was bad enough when we arrived at my parents that I was actually considering NOT having a glass of wine. In the end, the wine won!
On the side of “Positive”, we had great interactions with all three of the specialists, and we have some wiggle room to both make the best decision and for Cailyn to have a little more normalcy before jumping right back into the fray. On the side of “Negative”, an intervention will be required and there are significant cons for each intervention. We have the undesirable task of choosing the best of the worst. Before I share some of the details, I would love to thank my brothers (Mark and Michael) and parents for helping me prepare the questions for all three appointments, my brother Michael and parents for travelling with Cailyn and I to London and participating in the meetings, and our nurse case manager for coordinating everybody’s busy schedules.
Due to space restrictions, only Michael, Cailyn and I met with the neuro-radiologist to review the last 8 MRIs and to learn why it’s so difficult to reproducibly measure the tumour’s dimensions. I felt he understood and empathized with our situation – growth of any kind in the brain-stem is alarming – and actually led us to the film library where he suggested we get CD copies of her MRIs so we can measure them ourselves at home. He told us he would welcome us contacting him about concerns with any dimension. Unfortunately, there’s no way to see what nerve nuclei Cailyn’s tumour is at risk of “bumping up against” with more growth… he actually felt that any of the cranial nerves could be impacted negatively. Although we can see a MARKED difference between the MRI at the beginning of this year to her latest MRI, the tumour does not appear to have doubled, like the measurements would suggest. I pointed at a very bright point on the scan (that wasn’t near her tumour) and asked “what is this”? He said it was her pituitary gland, and the brightness of it, along with its shape, suggested to him that Cailyn’s hormones were “pumping”. This could definitely explain the latest changes in her tumour, and support her oncologist’s belief that further growth will happen.
We all met with both the radiation specialist and Cailyn’s oncologist. I have been afraid of radiating Cailyn’s brain-stem for over 12 years. The radiation specialist did a great job of sharing information about the process, its risks, and the steps taken to minimize the risks. The greatest source of my concern for radiation is that there is no redundancy in the brain-stem… each cell is unique and if any particular cell is destroyed or weakened, the unique purpose performed by that cell is lost or compromised. We learned that the process for neutralizing all tumour cells requires that the radiation be applied to a healthy band of normal tissue surrounding the tumour as well. Ouch… what a scary proposition. Cailyn conceptually likes the idea of radiation because it’s a much shorter process. The chemotherapy protocol is comparably long and drawn out.
We also discussed the different chemotherapy protocols available with Cailyn’s oncologist. She has been an important part of our team for a dozen years. We’re quite familiar with two of the protocols discussed, as Cailyn has been on both of them. A third protocol is quite scary, as it has produced some good results but is highly toxic… fundamentally decreasing her quality of life while on it.
We gained important insight from all three of these meetings and appreciated the openness and honesty of each specialist. Assuming that Cailyn doesn’t experience new symptoms, she will have another MRI in February. If she feels any change, her stay from treatment is over, but we’re hopeful we have some time to make peace with the best option for her.
It was a very long day for Cailyn. I can’t imagine what she felt but she managed the difficult conversation around options and risks with grace. When I dropped her off at school this morning, I put down the window as she was walking away from the car and yelled “I admire you Cailyn”. I saw her smile before she turned away… I’m glad she couldn’t see my tears.