Tuesday, October 22, 2013

Adjusting - BMT +56

Being at home is certainly an adjustment for all of us.

Sam is still pretty tired and taking care of his IV and oral medications makes me feel a little bit like I have a newborn baby again! But as I said over and over to the hospital folk -- I'd much rather do these things at home than be stuck in the hospital! So I've brushed up on my nursing skills. The only casualty of our move home from RonMac (as in, the only thing we misplaced) was our thermometer, and while I'd really just rather not take his temperature at all, I did order a new one....I might take his temperature each night before I go to bed....

There's been a lot of family togetherness time:

David is reading the first Percy Jackson book to Sam
Today was the first "normal" home day; it wasn't a weekend, and it wasn't a clinic day. It's going to take a little getting-used-to -- homeschooling, finding activities that are okay for his immune-compromised system, and just hanging out at home without the siblings...

Sam hung out with Speedy for a bit (and lucky me, I cleaned his habitat)

We baked bread, and Sam made a huge mess.

Luckily, no one minded.
I decided that the honor and privilege of being able to make a mess in your own home was worth the cleanup.

And the bread was yummy too!

It's all an adjustment, and we're working on it.

So what's next?
On Thursday, Sam is going to receive an infusion of specially-trained Fighting T-Cells (don't you think that sounds like a band or roller derby team?) in a really cool clinical trial in which he is taking part. He will be the first kid at Children's Hospital of Wisconsin to receive these specially trained cells, cells that were given in an extra blood draw from SuperMensch. Just one more reason to appreciate his gift! Our doctors have been working hard with these cells for weeks, training them....I envision a large bootcamp with a drill sergeant teaching them how to seek and destroy viruses....

It will take quite a while on Thursday, but it will hopefully not cause any problems for Sam, it will be similar to a blood transfusion. Of course, I will keep you posted.

I have said before that transitions are hard. We are all making adjustments and course corrections and trying to figure it all out together....

Wow, we sold a LOT of t-shirts. I know that together we raised over $4000 for the MACC Fund through the sale of t-shirts and hoodies. We will definitely do something like this again, but not for a little while. Thank you all for your generous support. I know that when you wear those t-shirts all over the country you will help raise awareness for childhood cancer, and awareness = funding = cure. For my Sam and for Sabrina and John's Sam and for all the kids....thank you.


  1. Enjoy normal life, if that's normal. Soon G-d willing it really will be just normal, boring life.