Technicals

I have had inquiries from family and friends about matching donors. We have been reading a lot about it. There is not really that much available since Aplastic Anemia is so rare. Blood type does not have to be the same. What They look for is a protein match. There are six proteins that rest on the outside of the bone marrow.

As the stem cells in the marrow mature and become white red or platelete, these proteins recognize when they are mature enough to go out into the blood. The key is to get some one elses bone marrow that is a close enough match so the proteins are tricked and allow the new cells to pass the barrier. Immune system suppressants are used to help this transition.
Trevor, because he has the same parents, potentially can be an exact match. The success rate of an exact match is 70% to 90%.

If we go out into the general population, I mentioned before only 1 in every hundred thousand people is a match and that depends on ethnicity also. Caucasion people are more common in the donor pool world wide, so it improves our chances of finding someone. But it probably would not be an exact match, so statisticly success falls depending on how many proteins they can match. 4 proteins is a 50/50 bet.

There is also a cocktail of steroids and other drugs that have had a small success in some people rebooting the system without the marrow transplant, but usually that is before the blood reaches critical acute which is how we found Riley's.

The other concern is if we find someone in the world wide donor pool, they have to be contacted and agree to drop everything to come to Oregon. The donor takes a blood booster for a few weeks to boost stem cell production. There are two ways to harvest stem cells. One is taking the marrow through biopsy like they did with Riley. The Other way is somewhat less invasive. They do it like dialysis. They use a vein and pump the blood into a machine that harvests off the stem cells in the blood and then puts the blood back in the donor less stem cells.

The stem cells are injected into the patient where they find there way to the marrow and start reproducing and making new marrow and cells. The side effects to the donor from the blood boosters is tingling and perhaps nausia and then after the donations fatigue and weakness temprorarily , until the body recovers. Either way of harvesting, this course of action takes 4 to six weeks including travel time. Add in the fact the donor may be across the world and not American. The most successful transplant is the more invasive biopsy method, of course.

Riley's insurance will pay for some donor tests, but to just go in to be tested and added to the world wide donor list costs $175. Tom and I will be tested just because if we can give back to the world what we hope will be donated to us, it is worth every inconveniance. As parents each of us is probably only a 50% match at best to Riley. Not good enough a match for success.

All those frozen stem cells people are saving from their children's births, we asked the doctor "what if?" Her response was that Riley's own umbilical cord stem cells would have helped temporarily. But since he is sick now, we know his are probably flawed and would probably get sick again. He needs someone else's healthy and matching stem cells for a fresh start.


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