Day +89

The endoscopy last week showed a beautiful GI tract--no visible signs of gut GVHD. Although the procedure wasn't a major one, it took about 5 hours from our front door and back again.

Last week was long and pushed the limits for us in terms of endurance. Clinic visit Monday at SCCA, ophthalmology appointment Tuesday at Children's (never simple), endoscopy Thursday at Children's, clinic visit Friday at SCCA, blood draw Saturday at SCCA. Not to mention fitting in work as well--and all those other things like pushing meds four times a day, IV hydration, keeping her feed pump going, and attempting not to go crazy.

So, I'm complaining. Yeah. So?

I've come to terms with the fact that I will never be featured as one of those people that bear up under pressure angelically or with envious grace. Those people can kiss my ass.

Anyway.

Although Zoe's gut looked visibly clear, the biopsies they took during her endoscopy showed some *mild* stomach GVHD that they termed as "sub-clinical". Accordingly they started her on a topical steroid that will treat it. The idea is that if the inflammation is kept in check then the graft and her body will eventually learn to live in harmony. It's a fine-tuned balance between keeping the GVHD at bay and not compromising her health too much (steroids=not so great).

Also, I can't remeber if I mentioned this, but during her shunt placement surgery they also took a skin biopsy to check for skin GVHD. The biopsy came back positive, but it wasn't clear if it was from the hyper-acute GVHD she had during the transplant, or if it reflected a current flare. As she is still on a prednisone taper schedule that suppresses GVHD (and her immune system), it's not possible to know how much GVHD is currently an issue.

Tommorrow is another SCCA clinic appointment (extra-long due to an oral care visit), Thursday we meet with a vision educator from the Boyer Clinic (early intervention program) and have a hearing test and neurosurgery appointment, and Friday is another SCCA clinic day.

Wednesday we are supposed to go to a "long term care" class, but we told them flat-out that we aren't going and to "not bother rescheduling us". The majority of their classes are aimed at adults going through cancer care regimens. We just don't have the time or patience to sit through something like that and cobble together information that might work for us.

So anyway, this week is a "light" week.

Next week is our extra long "exit" consultation with the SCCA people. Then, at Day +100, we will be set loose. For out-of-town patients Day +100 is when they are cleared to go back to where they came from and have their own doctor take over long term care.

We have a line on a pediatrician that works with the SCCA folks and operates out of Seattle Children's. I think we are going to be persuing that option.

A lot of Jeff's family was in from out-of-town this last weekend as Jeff's brother Martin had an opening for a major installation at the Museum of Glass in Tacoma. One of Jeff's cousins who came, Robin, is a professional organizer who spent three hours at our house today helping me make a plan for carving some space and clarity out of the chaos that is in our house.

It's definitely a virgo thing to be so nurtured by such an event. We virgos seem to externalize our inner need for order and serenity and often find ourselves organizing under the sink when our minds need to de-clutter.

I've got bags of stuff by the front door that I'm booting out of here. My definition of junk has widened while identification of "important things" has narrowed.

Thank you, Robin.

And Zoe.