From Julian's COTA journal.
Stacy wrote the following earlier this week to a family we met through the COTA website. They'll be arriving in Palo Alto shortly, and wanted to know about our experience so they could have some idea what to expect.
So far everything is going wonderfully well with Julian. No signs of that transplant cancer that sometimes sets in very early on...when I talked to Dr. Weintraub before the surgery, she told me that Stanford had not had one single case of that since starting their steroid free protocol. Neither had they seen any PTL as of yet, which is that neuroencephalepathy that seems to be associated with cellcept use.
I talked to Dr. Grimm after reading the recent FDA report on their preliminary findings regarding a review of Cellcept (it is an FDA approved drug), and Dr. Grimm said the risks of NOT having a transplant are far greater, ie the risks of long-term dialysis and the long-term prognosis of dialysis patients. I had to agree, and decided, once again, to place everything in the Lord's hands and go from there. It's a daily thing.
But taken in daily chunks, it is manageable. For example, 6 weeks after transplant we are down to once a week labs and once a week clinic. So, since today is not a lab/clinic day, all I have to worry about today is:
8:00 am -Change his formula bag to a special solution water bag
9 am-Give him 5 medications through his NG tube-prograf, cellcept, pepcid, valcyte, and aspirin
Prepare his 10 am-8pm formula, put it in a new bag
10 am Change his water bag back to formula.
Repeat at 8 pm, 9pm, 10pm
The rest of the day we can:
Drive to Half Moon Bay and walk on the beach.
Watch the surfers.
Get Julian a Chicken McNugget Happy Meal (they are free with the RMH key chain)
Walk across the street to the Stanford Shopping Center, where we can window shop and have Starbucks, and still get a Happy Meal because there's a McDonald's there, too! We can browse the following shops:
Pottery Barn Kids (Julian's Favorite)
Gap, Gap Kids, Baby Gap
Tiffany and Co.
Williams and Sonoma
the Day Spa (oh how I'd love a massage!)
and much much more!
I only tell you this because before the transplant it was hard for me to imagine what it would look like AFTER the transplant. It was stressful during the transplant and for about a month after, with him in the hospital for 2 weeks, then daily labs after that, turning to 2X week labs, turning to once a week labs.
My responsibilities during the day as regards Julian's transplant are to make sure his feeds and water are administered at the proper times, make sure his meds are administered, follow the Dr's orders as far as when they want labs, and check his blood pressure and temperature once a day. Now, if he gets a fever the docs want to know about it. He was warm one day last week (turned out to be a bit of heat exposure/exhaustion) so they wanted to do a bunch of bloodwork in the ER. That wasn't fun, but that has been our only "scare" since he was discharged a month ago. The docs watch all his levels, ALL his levels, and track them diligently. For example, Julian's white cell count decreased a little the first part of last week, and so they took note and tracked it. It didn't go down any further, so they left the Valcyte at the current dose and would like to keep that in place for another 6 weeks. Valcyte is a Chemo drug, and I'm not sure the purpose of it except possibly to keep any cancer-causing opportunistic cells at bay while his immunosuppression is particularly high.
The good news of all this is that there are oodles of doctors, the best in the world, and all their eyes and expertise are on my son. You can't ask for any better than that. You will be in good hands.