Monday - July 20th

We went to our first visit in an outpatient status today. They drew blood from us (something that has to do with seeing what parts of the blood Mac got from me and what he got from Mo.) They took blood from Mac to check his levels as well as do further testing. As I said earlier we are waiting and watching. We are waiting on several lab results (in most cases AA is a situation where the patient’s immune system is reacting against itself but there can also be a couple of other triggers that need to be ruled out); we are waiting on Peter and Annie’s kits to be received to check their HLA type, and we are watching to see how his body responds. (This is where all those small miracles can happen… his bone marrow may spontaneously start responding again! Doubtful but not impossible. Another small miracle to pray for: there is only a 25% chance that Peter or Annie will match and be the donor – I didn’t realize that until today.) His bone marrow is still producing white blood cells, but barely. That is not something that can be transfused so if it goes lower they may have to start him on a medicine that helps spur on the development of WBC. On Wednesday they are checking him again, and they are anticipating him needing another transfusion of platelets.

That’s the biology class for now. As for us, we are doing fine. St. Jude’s has a philosophy of trying to treat as many people as possible in an outpatient status (with regular appointments in the clinic) so these kids can have somewhat of a normal life. Not normal as I defined it a week ago, but a new normal! (Wasn’t that the post Katrina New Orleans catch phrase?!) We are still at the Grizzly hotel and we will be moved sometime this week. Unfortunately, Aplastic Anemia is very rare (only about 3 of every 1million people in the US get it each year), so there is no package-deal treatment protocol on hand; one will be written specifically for Mac. The reason I mention this is that housing is provided as protocol dictates (short term – Grizzly Hotel; medium stays – Ronald McDonald House; longer term – Target Apartments.) We are a family without a protocol for two weeks and they don’t want to move us twice so they’re just going to send us somewhere this week and that is where we’ll most likely stay. The options seem fine and we are thankful for the whole program, so it’s all good with us!

Bonnie Hatrel is looking into setting up a Blood Drive in Mac’s honor. As I have learned, this will not directly benefit Mac unless you drive your little self up to St. Judes to donate. But giving blood is a great thing to do and if the coffers here get a little low, they are looking to cities like New Orleans and Houston to help them out. If the country starts to experience a shortage, that’s a bad thing. As for Bone Marrow matching, you can tell them when they are drawing blood that you’d like to consider being a Bone Marrow Donor and they will send a little part of your donation out for testing and typing. There is also a mouth swab test, but you’ll have to ask the blood people about that option. Maybe someone in the Ridge matches Mac and can save him!! We’ll make you casseroles and mow your lawn forever in that case!!!

We shouldn’t have much to report till Wednesday and I have a feeling it will be more of the Biology & Housing talk. Mac is doing fine and tolerating all this one on one time with his parents – he’s the one who used to fly under the radar and do his own thing. This is the calm before the storm so we are just trying to save our energy!! Keep praying for small miracles! We are very grateful to you all for caring!