Don’t it make my brown eye’s blue?

Yes, I am awake.  Thursday was an exciting day, for me.  We were up early for counts and our Data Review  Conference.

In a nutshell:

Gregory is in stellar health.  Heart, liver, lungs……  We are good to go.  There are two rather small things that need to be taken care of, as we go.  In the bacterial/virus testing that they did they discovered that he has dormant/latent HSV (Herpes Simplex Virus), which is the common cold sore.  Also, despite the fact that he has never had, nor been immunized against……  he tested positive for Chicken Pox.  Since he has never had the disease, we are treating him as if he has never been exposed.  (Keeping him as far away as possible from chicken pox.)  We are also treating him like he has had Chicken pox, in the respect that:  He will receive anti-viral medication for one year post transplant.  Acyclovir.  The Chicken Pox virus can awaken and manifest as Shingles.  We do not want THAT. 

Something exciting:  Since Gregory is so little and our donor is an adult, we should have enough Bone Marrow (Stem) Cells to split the quantitiy, save half (freeze) and have it on hand, in case we need to do another transplant.  Talk about cool.  Which means less time and less money for a second transplant.  Should we need it.

I also found out today that SCCA (The Hutch) has only done 10-15 BMT’s for JMML.  Period.  Not 10-15/year.  10-15 Ever.  Theu pioneered the BMT process.  This is a premier transplant center.  Kinda speaks to how infrequently this leukemia is diagnosed.  No wonder I haven’t been able to find a family with a child near the same age and stage of treatment!!!!!!!!!! 

I’ve been trying to make nice with Sock Yarn.  It’s just not working for me, right now.  I really want to make a few Sock Yarn hats for Gregory.  They can wait.  They actually would be better for this fall/winter, once we get home.  So I have gone back to the weight that I can knit up, easily.  Worsted.  This one is maily cotton, though.  Perfect for a summer spent in the hospital.
Make-His-Eye's-Pop Blues
We have counts, again, tomorrow.  Today’s were holding:  Hematocrit ~ 27 and Platelets ~ 28 (yeah, they went up six points.  Strange.)  This new chemo can make his counts plummet.  We are trying to see if a tranfusion will be needed before the weekend.  Sleep schedule is all messed up.  That’s what we get for taking a nap this afternoon.  We are just preparing for wonky hospital hours.  I can’t remember at what point this is, I think it’s during chemo, they will be flushing him with a ton of fluids and I can expect Gregory to need to use the potty every two hours.  Crazy.

Well, that’s about it for now.  ’til later, gotta jet.


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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