So Dad always said that kids don't eat enough dirt. He was deeply disturbed by the efforts to totally remove germs and dirt from children's world. He was a true believer in building the immune system by one muddy rock in the mouth at a time.
Small exposures, little bits. Sort of like a vaccine. Give the body something to work against and strut it's stuff by working on building immunity. He was horrified by purell and anti-bacterial products except when necessary. Like hospitals and in cases like Mary-Elizabeth's. He would have had the subtle smirk on his face yesterday during the conference.
So here we are, 11 months post transplant. Lots of tests, not all of the results but enough that there is some certainty. Mary-Elizabeth's immune system is not longer her own. She has 100% Pearl Ann's cells. She has some loss of lung function, bone density, liver is okay, not great, too much iron still but not enough to bleed, kidneys are on the fence but seem to be holding her own. Over all she is in good shape.
GVH is still a problem. She should have started to taper from the immunosupresents about 5 months ago and there is no taper in sight. So they are changing the medication.
She is going to be taking a medicine made from dirt. Special dirt. Dirt from Easter Island. Did I mention it was dirt? It really is dirt. It does come in a capsule.
I had been told a long time ago the people that work at places like the Hutch bring back dirt and water from far off lands. People look at the stuff and then see how it can solve problems.
So the plan is for her to transition from Tacro to Dirt and see if it will help Pearl Anne be happier and then try to come off the prednisone. What does that mean, well we aren't done with this yet. There are going to be more time at the clinics but hopefully it will work, if not there are other drugs made from other weird stuff out there.
The really big news is that barring some sort of other disaster she is out of the deepest part of the woods. She can fly to clean places (not China). She can take a train and move away from sick people. She can even take a bus, if she does it during the quiet time of the day. Better to wait until summer on that. There is a certain amount of care that must be taken while on the immune suppressants but all in all it is great news.
What a Happy Muddy Christmas for us!!!!