We recently spent a weekend at Camp Okizu, which is a free camp specifically for northern California families dealing with childhood cancer. Jack had attended with his dad and step-mom last year and everyone came back raving, so we were really looking forward to it. The camp didn’t disappoint and our trip was very special indeed.
So special that I’ve been ruminating over our experience and trying to put it into words since we got back a week and a half ago. The trip overall gave me a bit more peace, although I’m not sure I can explain why exactly. It was a little bit of stress relief, a little bit of validation, and a little bit of forced ‘dealing.’ It was a medley of awesomeness that was both healing and thought-provoking.
As for the awesome and fun parts, we spent some time shooting arrows at targets (I felt like Merida!), and Jack got to go fishing and actually caught a good-sized Bass. He was so proud! We sat down as a family for every meal! It was wonderful to sit together and relax and eat and talk without having to worry about cooking and cleaning. We attended a campfire and roasted marshmallows for s’mores. Jack ‘participated’ in a campfire song – which meant that he went up on stage with the other kids but acted like a frog eating bugs while everyone else sang and danced. We were afraid he was stealing the show from the other kids but everyone took it in stride (and we realized afterward that he was improvising because he has memory issues).
We were told a couple of times that Jack was the favorite kid among the camp counselors. Jack always has a story about something strange and interesting, or a goofy joke to tell, and the adults just cracked up at his precociousness. Counselors sat with us every meal! One counselor made Jack a friendship bracelet and also helped him get a letter from the legendary camp mascot “Tajer” (who is part jaguar, part tiger, and part badger). I wish we knew her name and could thank her directly. The counselors were seriously amazing.
In the mornings at camp the adults and kids were split up for separate sessions. The kids went and did various activities while the parents attended what was basically group therapy. We shared our stories – there were a many types of cancer diagnoses and families were in various stages of treatment. The founder of the camp led discussions on 504/IEP plans (and why every cancer patient should have them) and dealing with sibling issues, then opened things up to anything else that was on our minds.
One family there was dealing with a terminal diagnosis. Their story had quite an impact – they are living through our worst fears. It really struck me how unfair it is that a child can be perfectly fine and even neurotypical and then, out of nowhere, become incapacitated. Not long ago this child was attending school and playing with his friends and now he is in a wheelchair and steadily losing autonomy. Our story is a mere shadow of that, but still there are similarities. I’m reminded of the similarities – the scary parts of every case of cancer – whenever Jack wakes up and crawls to the living room because he’s feeling “floppy” from the chemo built up in his body.
We also heard from families who had similar prognoses to Jack’s and ‘smooth’ experiences who then went through relapse (one with ALL and one with another type of cancer). As strange as it might sound, that was both scary and comforting. I guess it’s nice to know we aren’t crazy for worrying about that possibility or for almost expecting it to happen. And these parents weren’t all that different from us and we could see them coping, so there was a sense of “if they got through it, we can get through it.” These people didn’t possess some special pool of bravery or coping skills that they were able to access when a new challenge came along. They just kept on doing the best they could and that was enough.
It was also nice to hear others – no matter the ‘severity’ of their situation – admit that they felt guilty for complaining about their difficulties. We ALL worried about those who had it worse than us.
It was funny to me that so many of us with different types of cancer situations were told similar things by doctors at the time of diagnosis – for instance, “this is the BEST cancer to have.” I don’t think it’s that the oncologists are intentionally distorting the facts to anyone – I think it has to do more with the strange nature of cancer – its complexity and the difficulty in determining statistics, plus the disconnect between science, medicine, and real life.
I think the only safe thing to say is that the ‘best’ cancer to have is NO CANCER AT ALL.
We plan to go back to Camp Okizu and I sincerely hope we will see some of the same faces we saw during this visit. I’ve heard it said before that the cancer club is not one anyone wants to be a part of, but you end up meeting some really amazing people in it. It’s very refreshing to see so much good all in one place.