Kai was so excited for his first full day of camp that he decided to wake up at 2:45 this morning
He has been on steroids since Thursday and I think he was feeling the full effects by this morning. Thankfully after a few other meds to help take the edge off we were able to get a few more hours of sleep.
After breakfast it was time to hand Kai over to his volunteer in the nursery. I did pretty well with drop off… but im not gonna lie, i snuck in for a few short visits throughout the day. Its hard to be away from him especially when i know he’s right there AND not feeling very well, but the volunteers here are truly amazing and I know he is in good hands.
I don’t know where they find these kids but The amount of maturity, insight and compassion these teenage volunteers show Is truly one of the most amazing parts of camp so far…though I have to say most everything about camp is pretty amazing.
After dropping off the kids we played some fun group games and after lunch was the first parent meeting. You know, the one where we all sit in a big circle and go around the room telling our stories. I can tell anyone every detail of Kai’s story anytime, but sitting in that room, alone, with about 30 other families I will admit I was overwhelmed. When it was my turn to talk I kind of glossed over and rushed it a bit. It was all I could do to get out “my son Kai was diagnosed last year, at 8 months old, with an optic glioma. He is treated at Dana Farber. He had an MRI last week that showed tumor growth. We now have to decide on a new protocol in the next few days” at which point I should have said PLEASE HELP!!!!
But I didn’t have to say it. They’ve all been here before. We’v all been asked to make this impossible decision gambling with the lives of our kids. At some points listening to the other stories gave me a hope I don’t usually allow myself to have. There are families who were diagnosed as little as 6 weeks ago and people who have been at this 20 years here. It is amazing to step outside our situation and see the possibilities and lives that others have lived desire having an inoperable brain tumor.
After the meeting many of us huddled in the hall telling stories, asking questions, laughing, crying. I have a feeling there will be a lot more of this to come. This is one of those life changing, safe places where you can say it all and everybody gets it.
Kai continued to have a pretty ruff day today. Thankfully his doctor is the on site doc. for the week so he has been checking in with us. This evening we decided the steroids are causing more harm than good so we decided to start weaning Kai from the steroids tomorrow. Hopefully he will be feeling better soon.

First day of camp!