Peter Bear Update – June 22nd, 2012

Peter wrapped up another week of summer school and seems to be really enjoying it! Summer is his season!! He loves being outside and has taken to the swimming pool like a fish to water. He tries to swim and is starting to coordinate moving arms and legs at the same time. I think we have a future great swimmer in the family. We had hoped for swim lessons this winter but with all else that happened they are on hold. At least now we know that when we start them up he is no longer afraid of the big pool. He will actually stand on the edge of the pool, carefully put his toes over the edge and lunge right in. Fortunately he waits until he knows you’re ready to catch him – and not just jumping on faith. G was not too excited about the big pool at first but is following his lead and really enjoying it now. They both play in the baby pool – they will sit down with their head barely above water, move their arms like crazy and squeal in excitement as they shout out that they are “swimming”!

Peter working on blowing a whistle.

Overall Peter is doing well. He’s been waking up at night again, but with a drink will often go back to sleep in his own bed. John has been very good about working on keeping the kids in their own beds at least until early morning – in which case I feel treated by having them snuggle up to go back to sleep for a little longer and then wake up smiling and hugging me! Peter is still on 50% of chemo but his lab counts were really high this week. Historically that has correlated to him coming down with something so we need to keep an eye on it – it may also be his body telling us it is ready to go up a bit on the chemo. Will wait to hear back from the doctor. Peter is supposed to go back in the week after next for a lumbar puncture – the chemo that goes into his spine usually wipes him out but he should be recovered before we head out to Montana.

We did have a long conversation with one of Peter’s doctors this week. I felt very discouraged after the last visit where John was told we had to follow protocol no questions asked. It was a very good conversation and both John and I felt re-assured that our concerns were listened to, our opinions were valued, and our interpretation of treatment and risks were accurate. We came to some agreements on ways to manage Peter – but will have continued discussions around better tracking Peter’s progress, improving our trending, and responding appropriately with the treatment. John and I felt encouraged that we were able to continue the dialogue and allowed to continue to advocate for Peter. Clearly more discussion is needed but at least the door is still open.

I so wish all of you still reading these updates could just see Peter for a few minutes and soak in the joy he has enjoying this summer. After such a long and hard winter – it is so inspiring to see him running around the yard, laughing hysterically with G, chasing after balls with Alexandra, and getting into trouble by pulling too many books off the shelf (again!). His confidence continues to increase and he walks around with a great sense of purpose and determination. He gets lost in a book, snuggles up to the boys to play games, or just enjoys hanging out. When things feel the most stressful I force myself to slow down, and just gaze at the joy Peter has at still being in this world with us! His smile inspires me every time!! It breaks my heart when he cries because of the chemo and steroids – but his resilience teaches us all how to bounce back with a smile and keep on enjoying life. I wish I could bottle his essence!

We hope you are enjoying your summers too!



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