Our time at camp was amazing. The support they provide is invaluable and I feel so fortunate to be able to revisit this amazing place with these amazing people. But now we are back home and we’r jumping right back into the busy week ahead
I just sat down and read my ‘letters from camp’ posts from our first visit and it was a great reminder of where we were at at that time, just a few months ago in July. Reading those posts, so much feels exactly the same yet this time we seem to be fighting for a different hope and a different fight.
I said in one of our parent meetings that I am so happy to be here but I also feel like I have one foot in the bearevment group already. It’s a hard and tricky place to be and the more I try to accept that this is where we’r at the more I seem to be fighting the other way.
As my mom and I talked about our weekend on our ride home, I kept coming back to the feeling that I spent months trying to convince Kai’s team that the chemo was not doing him any good, but as soon as they agreed with me and we took him off I immediately started fighting back in the other direction. ( at least in my head) its just so hard because I remember promising myself over and over again over the past 16 months that I wouldn’t do this. I wouldn’t second guess and I wouldn’t allow myself to be ‘tricked’ into continuing treatment when I felt it was doing more harm than good. I was afraid the doctors would convince me or that our family would have a hard time letting go…but here we are at that point and the only one fighting me is me…
The decisions we have to make as brain tumor parents are unbearable. It is something that comes up over and over again in our group discussions. No matter how much we all try to feel confident in our decisions or at least be at peace with them, but really how can we make these decisions? We are not doctors. We are not researchers. We all make our best educated guess and then we have to keep moving forward. Everyone. Everyday. Only, the decisions we have to make can sometimes be a matter of life or death for our kids. No matter how hard I try to rationalize it, accept it, there is always room for that one teeny tiny spark of ‘what if’s ‘ ready to ignite.
I left camp with a lot of questions. Questions about treatment, questions about Kai, questions about myself.
For now, life must go on. We are right back to our busy life, Kai at the respite center tuesday and into the clinic on Wednesday. We will see his oncologist, neurologist, and the PACT docs again.
I hope I can keep everything straight, ask my questions, stay confident and strong.
I hope I can feel some reassurance and relief at the end of the day.