Sunday, August 26, 2012

My little roller coaster

Sawyer started counseling a few weeks ago. Basically the way that works for kids is they draw pictures of things. The day before he started kindergarten he had a session, she asked him to draw something along the lines of how he felt inside. He drew a roller coaster.

Lately I know exactly how he feels! It's amazing the things little minds can pin down.  I don't think I've said it that way, but man I sure know how he feels.  I know I haven't blogged at all about Jeremy's on going (or upcoming) treatment. This was made very obvious when my friends here in town asked what was going on. Usually they don't rely on my blog for updates, when even they knew nothing, I realized obviously I had been doing some serious avoiding. So here it is...

Currently Jeremy is receiving a treatment every 3 weeks, his last one was Friday. It is a new kind of drug, an antibody, that only attaches to Hodgkin's cells. It's given through an iv, but has much less side effects because it isn't attacking the healthy cells in his body. This treatment seems to be going well. We won't know how effective it is till next week when he receives his first scan since starting this drug. Now onto the really exciting part of the roller coaster, the bone marrow transplant. We met with Stanford last week, even now I am in shock. I'm struggling with how to say this with a positive spin. The good news is, they have every reason to believe that the transplant will be able to get him "to cure!" So, Yay! That news right there is the only positive thing in my mind right now. Cure! Ok, so what do we have to do to get him there? Basically he will spend another month in the hospital again (we can handle this, we've done this!) but when he is released he will still need to be closely monitored and probably spend most of his days for the next 3 months in an infusion room. His diet will be restricted and he will need a hepa-filter air mask when out in public. Oh wait I forgot to mention Stanford is 2  1/2 hrs from home. Once he is released from the hospital, those next (at least) 3 months he needs to be in Palo Alto. So we will be needing to rent an apartment, and figure out 24 hr care for him while he is recovering. UGH!

I know that we will figure this out. I know we have amazing family and friends who will do whatever we need to get us through this next bump in our ride. However I am tired of trying to figure out how to get over the bump. I'm ready for the rush of coming over the hill and enjoying the slide. Wish us luck.

The good life! Watching our kids play in the sand...without a care in the world!


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