There are many, many Tuesdays over the last number of years that have involved a visit to the hospital for Cailyn and me. This last Tuesday was no different! I picked her up mid-morning from school and we headed to London for a follow-up appointment with her oncologist.
We had a few conversations over the three hours we were there… a little fortuitous, a little serious, and a little “fun”.
On the fortuitous front, we ran into one of my friends, a fellow Mom of a brain-tumour survivor. She was walking back to her office and our chance meeting gave us the opportunity to catch up with each other and our daughters’ journeys over a cup of coffee. The fact that we were over an hour late going into our appointment actually facilitated a better visit. During the course of our conversation, my friend shared information with us that reinforced some of the serious risks of radiation. I haven’t circled back with Cailyn to discuss what we learned, but having another adult, that Cailyn both knows and respects, reinforce what I have shared with her, is a sincere gift.
Our discussion with Cai’s oncologist was certainly more serious… it covered the latest scan results, the need to follow-up on her last cardiology ultrasound, port options, and what’s next. Dr. Zelcer is going to review the MRI results with the radiologist to confirm stability of Cailyn’s tumour. She appreciates why this confirmation would give us peace of mind.
After Cailyn’s port removal last April, she had to have a cardiology scan to see where the “unretrieved” tubing was situated. Unfortunately, the results were unclear and the positioning of the tube needs to be determined. The arrangement of this additional test hasn’t been on our radar with the advent of the progression in her tumour. It’s back on the radar and her doctor is going to work with cardiology to get this new test ordered. Stay tuned.
Interestingly, Cailyn’s question to her oncologist was where her next port could be put. A couple of different options were considered, along with the option to have a PIC line put in. Cailyn was more curious about this latter option than I would have anticipated. A “Port-a-cath” is entirely under the skin, whereas a PIC line is like an IV. Thankfully, it’s not a decision that has to be finalized at this moment. The one thing we do know is that a new port can’t be put back in the place where one rested for 11.5 years!
I wanted peace of mind. Peace of mind that the tumour truly is stable and the peace of mind that would come from learning we have some emotional wiggle room. I asked her doctor if there was data that might suggest that stability could continue for a longer period of time. I qualified by asking if we could assume that Cailyn wouldn’t require treatment this next year. Her answer was “no, we can’t assume that”. Interestingly, Cailyn’s comment to me, after the appointment, demonstrated where she’s at emotionally. She said that even if her doctor HAD been able to tell us that she likely wouldn’t need treatment this year, she wouldn’t have believed it. Ouch!
The “fun” conversation was with our social worker. I asked if she could follow-up on the status of our wish trip with the Children’s Wish Foundation. Cailyn would like to take a river cruise… a trip I’m confident we would all love! Hopefully, trip details will be forthcoming.
Here’s to more “fun” than “serious”!!