Bubble girl

So it's been a while. Life has settled into somewhat of a routine, albeit different than most other families. I'm 2.5 weeks into a new job, with more travel, lots of new things to learn, new relationships to build, etc. Jeannie is settling into this new world of setting up Soph's TPN every day, checking/monitoring her blood counts, and worrying/deciding what to do each day to keep her engaged, and somewhat "normal."

That's one of our bigger struggles these days. Cognitively/intellectually, Soph seems to have progressed normally; she has learned how to phonetically read, her memory is just as sharp as ever, and she demonstrates a curiousness and ability to process info as one might expect an almost-5 yr-old to do. So in that way, I am thankful.

Physically though, we are thru 2 cycles of chemo, of 9 total, and the first 2 cycles have brought constant worrying about her counts, whether to send her to school when her counts are low, or to keep her in a bubble. Our doctors have sort of left it up to us to use our judgment on maintaining a normal schedule, but we are afraid of her catching a bug that will be much harder for her to recover from than normal kids, b/c of her low counts. It's been such a relief when we get that call from the nurse saying that her counts are on the upward swing, but often it's 2 weeks of low counts where we have to lay low, avoid public places, avoid other children, etc. Otherwise if she catches something, it's at least a day or two back at the hospital to make sure it's not bacterial in nature. We have to go to the hospital anyway for multiple days each month for the chemo, we don't want to have to go more than we need to.

But is it realistic to keep her in this bubble until next Jan, her last chemo cycle? I don't know. As I mentioned, her cognitive skills are at par, and she's at that age where she needs social interaction with other children in order to continue to progress. I think she's bored at home, can only take so much of the TV, iPad, and other toys/games. I still believe in the adage, "everything you need to know in the life, you learn in kindergarten." But with her treatments, is it realistic for her to miss 2 weeks every month b/c her counts are low? Do we take chances and send her? Do we "redshirt" her for the year, and repeat kindergarten next year? All difficult questions we think about.

Oh, by the way, Soph was recently featured on the Pediatric Brain Tumor program at Lurie Childrens' facebook page. "Like" their page and keep up with the stories, people and place where Soph spends a lot of her time.