From Julian's COTA journal
Here it is, October 26th, and it's been two weeks since our last update. Julian is doing fantastically well. He continues to get stronger, and is actually "running" now. We still do weekly labs and weekly visits with his Pediatrician, with a visit to Palo Alto once a month, but hopefully we will be able to pare that to twice a month with his Pediatrician and every 3 months with Palo Alto.
Julian remains the cheerful, bright, sunny boy he has always been. We were able to take our annual "Fall Pictures" this year, only this time the trees were SO beautiful on our WAY up to Gold Hill that we skipped Gold Hill all together and took all of our pictures instead on Mapleton Street in Boulder (click "photo album" at the top of the page to see more). We have been able to see a few friends, much fewer than I'd like to have seen, but we are trying to make the rounds.
We will head to Gilbert to spend time with Family at Thanksgiving, and we plan to spend the coldest months of the winter there. My sister Kim is due with their fourth child in February, so it will be nice to be able to add some support for her, and Julian loves babies.
As far as his treatment regimen goes we leave on Wednesday the 30th for Palo Alto for a clinic visit with his Nephrologist, as well as a follow-up with his Ear/Nose/Throat doc regarding his tonsellectomy.
He will also receive his last IV infusion of a drug called Xenapax. This is a hard-hitting immune-suppressant that works at the cellular level, inhibiting the cellular receptors to one of the illness-fighting white blood cell types. Thankfully, after this last infusion, his immune-suppression should be able to be toned down a little and we will be able to "rejoin activities" we have previously been told not to do, like take Julian to the store, to restaurants, etc.
The prayers we would ask for at present would be for us to be able to fly roundtrip to San Jose from Denver without Julian catching anything, and of course in safety. Dave and I have gotten our flu shots, but Julian is unable to receive any form of vaccination for a full year after transplant.
I am always in awe of the power of prayer. Thanks again.
Stacy