One-of-a-Kind

Andrew is in the middle of a course of steroids that seems to be helping with his oxygenation levels, though they are still fairly unstable and drop rapidly if he turns away from the blow-by. The difference is that he drops down to 90 instead of 70 or 80 as he was doing last week. The steroids are meant to give him a boost until his immune system hunkers down to solve the problem on its own, which could be any day now.

We are apparently in uncharted territory with this complication, giving Andrew the dubious honor of now being "publishable," so he's got that going for him, which is something.

We are also watching his bilirubin levels, which indicate liver function, as they are quite high again.

There is no indication yet of imminent hospital release, but neither is there imminent danger, so there we are.

White cells gobbling red cells

Andrew continues to befuddle the doctors as they have run just about every test to figure out what is going on with his system, but don't seem to be coming up with many good answers. They do know that he is not maintaining oxygenation without help from the "blow by" machine (which does exactly what it's name says it does - blowing oxygen out a tube near Andrew's head) and they are pretty sure that it is because his white cells are attacking his red cells, or the red cells being transfused into him. Either way, it is not a good thing, and needs to stop. He has already received one treatment with the hopes of getting rid of the antibodies against the red cells - if that doesn't work, they will try steroids.
His hydration is fairly stable now, but until we can find the cause of this condition and fix it, he will have to stay in the hospital.
The time line for radiation is set for a couple of weeks from now, with a trial run next Wednesday and radiation starting the following week. We should have time to clear this issue before it conflicts with that schedule. Here's hoping!

Back at COH

Andrew was admitted back into the Pediatric Ward at City of Hope yesterday to run tests in search of the cause of his latest slump. His energy has been very low through the end of last week and his breathing was labored. A night of dry-heaving sealed the deal and Paul took him in to the ER on Sunday morning. His oxygenation was down in the 70's (it's supposed to be 100) and his liver and kidney function numbers are high, and so he was admitted to be hydrated and put through a series of tests in order to figure out what is going on.
Later today, he will have an EKG and and Echocardiogram, and I'll post any significant results to keep everyone in the loop.

Untrained Soldiers

Andrew returned home Friday after surgery to replace his central line tubes with an internal port, which means that he can now take a bath and play without the danger of one of the dangling lines getting snagged on something. They will use the port for his transfusions and the nutrition and medications that he continues to get at night.

As the doctors explained, his white count is normal and holding, which means that he has his soldiers back, but they are untrained, like those of a newborn baby. They will slowly have to learn to recognize and fight all kinds of bugs and eventually Andrew will be re-immunized with vaccination boosters, as well. Until then, he must be protected like a newborn with limited visitors and outings.

Over the course of his bone marrow transplant, Andrew received over 25 transfusions, with most, if not all, of his blood coming from directed donors. We can not begin to express our gratitude to all of you who came to give both blood and platelets throughout the procedure. You truly impacted the course of his recovery. Over the next 100 days, Andrew will continue to rely on frequent transfusions to boost his system while he continues to stabilize. Thank you for your continuing donations and prayers.

Radiation is up next. He might even get his first tattoo for that one - between the tough scar for surgery and a tattoo at age 3, Andrew is going to be able to play the bad boy card early!