***Over the weekend
Kai and I are back at Camp Sunshine and this time we brought Gigi (my mom)!
She has been there to witness most of the awful things Kai has had to endure over the past 16 months I really wanted her to experience some of the good stuff too.
Camp is one of the good things that comes out of this world. A magical place, not just for all of the amazing things they provide for us while we are here (meals, activities, support groups, a break from our kids!) but also because I get to witness everyone’s kids doing amazing things, making friends, singing, dancing, laughing, helping each other out. Things I may never get to see Kai do. Just like my first time here the camp talent show was a big highlight of my week, for this exact reason. It is amazing to watch what these kids can and are willing to do in the safety of the camp stage. I am in awe every time.
Of course with all the fun and laughs and smiles also comes the work. The time to talk openly and honestly and work through some if the crazy we all live.
The first parent workshop is the hardest. You know the AA style meeting for all us nutty brain tumor parents. The one where we go around the room and say who we are. What kind of tumor our kid has, how many treatments we’v done, and how long we’v been struggling to stay sober… I mean stable
The first time I was at camp I brushed over my turn to tell our story. I was alone and nervous and confused. We were at a point of picking a new protocol. I didn’t know anybody and honestly I was pretty intimidated. It’s hard to lay it all out in a room full of strangers. It’s hard to say it out loud to anyone most of the time. This time I knew I had to talk. I did better but the more talking you try to do the more likely it is you will end up in tears. The tears came quickly and the room cried with me. This time It was hard to get through our story for a different reason.
I’m Kerri and my son Kai has a hypothalamic optic glioma. We came to camp for the first time in July and this time we invited my mom. When i was here in July Kai had just failed off of his second protocol, first carbo/vinc then Avastin/irenotecan and I was trying to decide what to try next. With the support of the families I talked to that week I decided to try the oral 5 drug protocol, but after 5 weeks Kai failed off of that as well. A little over a month ago we went inpatient and when he came home worse than when he went in and we decided to take Kai off the chemo altogether. We are now only doing pain management….
I can write it out pretty concisely , but in real life, these words were a major struggle. I was crying and shaky and trying so hard to get it all out. I felt bad that my mom was sitting there next to me unable to say anything, both of us paralyzed by the weight of the room. Not just Kai’s weight and situation, but all of us. Every story. Every struggle. Because even those who are doing well, live different lives than they did before Brian tumor diagnosis.
These tumors and treatments beat up our kids. They strain marriages and friendships and families. They take from siblings. They change everything within reach. Cancer, brain tumors, take over much more than cells and the space they occupy.
But being at camp helps us take some of our life back, together. It takes a village and camp is that village for many of us.
Someone said to me today that Kai’s fight, his gains his losses his successes and fails no longer belong to just our family and I feel that too.
Being at camp gives us all a little hope. Not necessarily hope that I can save Kai, but hope that things can be different, whatever that may be. Assurance and acceptance that we are never in this alone and that we will always belong. The people here, the other parents, give me that extra push of confidence that I am doing the right thing for Kai no matter what choices i make. That’s something I need a lot of reminding of lately, so I am very thankful to be here for that today.
When I applied to camp this time there was a big part of me that was afraid we would never make it. That Kai wouldn’t make it. I am glad we did.
And by then end of today people were already talking about the next brain tumor session in december…we’ll see….