Goldilocks (D0)

"A well-spent day brings happy sleep." - Leonardo da Vinci

This was a really big day: Elise received her stem cell infusion today. We don't know a lot about the donor, but we understand the person is male and from Germany. We'll find out more later after Elise recovers.

The medical team said the cell dose that Elise received was not too much, too little, it was just right. So I called it the "Goldilocks" dose. Apparently there is actually a dose size they compute as optimal and the dose Elise received fit in the "optimal" band. 

We're very grateful the donor took the time to register for their bone marrow registry and then also agreed to go through with the donation process. Not everyone does register and this is vitally important especially for those with mixed ethnic origins as the likelihood of finding a match is directly proportional to the number of people in the database that share your ethnic makeup. Low numbers mean low chances.

I'm also glad there is a national registry that coordinates with other nations to produce matches. The National Marrow Donor Program is something our politicians have got right.

If you are under 45 and in good health I urge you to join the national registry at BeTheMatch.org. Joining is free and painless. The chances that you'll be a donor are slight, but if you are matched then you could literally save someone's life.

The transplant was, as they warned us, a bit anticlimactic. They hang a series of bags of strawberry topping looking stuff that is infused via IV. All painless and boring. The bags of cells were thawed one by one from a frozen state and infused. They use a preservative which smells like "creamed corn". They told us this and it was the absolute truth. The nursed brought in peppermint oil, sliced lemons and oranges, and some fruit flavored life savers to cut through the odor. It's not bad for, say, Thanksgiving dinner, but try 4+ hours of that smell. Elise didn't seem to mind although her olfactory senses seem to have gone slightly wacky with the conditioning regimen. But this too shall pass.

They've started a med called Sirolimus. It's an immunosupressive agent used to prevent the rejection of, primarily, organ transplants. She'll be taking this med for quite a while. The levels in her bloodstream have to be monitored and adjusted regularly; apparently the level is important and it can fluctuate a bit.

Of course every med has its side effects and sirolimus can cause hypertension, so Elise has also started taking norvasc which helps address any hypertension she may get.

So now it's mostly a waiting game: we wait until the cells engraft, then multiply, and flourish. There should be some indications that they've engrafted in about 2 weeks. The first test of this is scheduled on 3 July. Once they've multiplied to a certain point then Elise will be released from the hospital inpatient status. This should be around day 30-45. After that she'll be an outpatient but required to stay in the local area until rough day 100 after the transplant.

In the mean time, during the next week her blood counts should continue to drop significantly. Her hair should begin to fall out. And she'll become susceptible to infections since her body won't have a mature immune system to fight them off.

After that she may suffer "acute" graft vs host disease (GVHD) as her new immune system and what's remaining of her old one try to come to a compromise. Eventually, she may also suffer from "chronic" GVHD if this compromise isn't amicable. GVHD can range from minor to severe and is graded on a scale of 1-4 (4 being worst). 

One of the "features" of the particular protocol that Elise is going through is that it's meant to minimize the chance of GVHD. But the tradeoff is an increased risk of the transplant not engrafting properly. We've been told the risk of GVHD is normally pretty high (30%+) and the risk of not engrafting is low (5%), so this is the "tradespace" the Drs are working in.

Becky took the odeur de crème de maïs shift at the hospital tonight, so I get to drink a beer and watch Amazon Prime at the apartment. I'll sleep happy tonight.