We found out today that Peter & Annie do not match, so a Bone Marrow transplant is not in the near future. Monday we will go to some consults and meet with different departments. Tuesday Mac will have his line put in so he can start the treatments on Wednesday. There are several types of medication that all have various side effects. We will be in the hospital 5 - 10 days initially and if everything goes well, he can be outpatient for 3 months. There are anticipated side effects that may require hospitalization, but hopefully those will be few. At 3 and 6 months, trends will be evaluated, and the course of action will be redefined as needed. The goal of the therapy is for his bone marrow to make adequate blood cells to protect him from infection and to be free from transfusions.

It looks like a long road ahead from where I'm standing right now. Please continue to keep us in your prayers.

Wednesday's appointment was the quickest yet. Mac did his time in the lab and his levels are ok, but they are scheduling more platelets for Friday. (Remember the other biology lesson about platelets - they don't last as long as RBC. And obviously his bone marrow is not producing many of them.) I don't think we'll have any real news - as far as matches, treatments, etc. - until Monday. But if we hear something Friday, we'll let you know.

It continues to rain - I think we are actually in Seattle. We managed to find an almost empty movie theatre and complete with mask and antibacterial wipes, we watched Harry Potter!

Thanks for the news from home and elsewhere! We love the mailroom visits!!

Just wanted to let you know that Monday went fine. Mac got his RBC transfusion as anticipated. He's handling everything very well. He said he's kind of like a vampire. Like I said before, this is our new normal... errands, relaxing, appointments, getting mail, more appointments, etc. We've found some good spots to hang out, like Mud Island, which is right on the Mississippi. We keep saying we could hop on a boat and land in River Ridge! It's been raining a lot here and I think it's much cooler than NO, not that that's hard to do.

This is kind of a boring entry. You know it's bad when you have to resort to the weather to take up space. As soon as we know anything new, we'll let you know!

Thanks for thinking of us!

Mac's appointment today was quick and simple. His blood levels are ok (and I mean that relatively) but they anticipate a RBC transfusion by Monday. He also met with a Child Life Specialist (that's what they call the people who communicate and play with the kids) who is helping him write a letter to Peter and Annie all about Aplastic Anemia and what is going on with him and what St. Jude's is like. They really have a great sibling support system here b/c they know that Mac's illness affects the whole family.

We're off until Monday. We'll find things to do around Memphis for the weekend. Mo is not good at sitting and waiting, so we'll be entertained I'm sure. There is a Dr. Seuss room here that has a quote on the wall that says "But it turns out allright you see, And I go back to being...me". During times of trouble, who better to quote than Dr. Seuss?!!

Thanks again for all the prayers and thoughts and notes and packages!

Not much new to report... Mac had his clinic visit and his platelet transfusion as predicited. (For your biology lesson of the day, platelets don't last as long as hemoglobin, that's why the platelets they gave him at Children's Hospital in NO are gone. The blood he got there is still maintaining. He got all this last Wednesday.) We also learned that Aplastic Anemia is in the category of "Bone Marrow Failure" diseases. I told them today that this was not PC. They are now labeling Mac as "Bone Marrow Challenged"!

Peter and Annie received their kits today and thanks to my sister Ana's efforts the blood was drawn and back to FedEx in about 2 hours. So now we wait some more. Mac's next check will be Friday morning.

We moved into a small apt. in the Ronald McDonald House. It's less than a mile from the hospital and has lots of amenities. We're keeping busy running errands, enjoying all the presents we've been receiving, and visiting with my friend Gail and her family. Thanks to all of you who have sent Mac packages. Today really was Christmas in July for him!

Keep up the praying and the positive vibes!! We are very thankful for the outpouring of support we've received!

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!

Sunday - July 19th

Thanks for all of the comments and prayers. Something a lot of you have been asking about is blood donation and Bone Marrow matching. Here is our simple, non medical understanding of what is needed: Mac is an O+ (that is also my type.) If I or anyone else donates, it will not necessarily make it to him. Of course donating blood is a wonderful thing to do and just by being in the hospital I see what a valuable asset blood is – something taken for granted in everyday life (St. Judes uses an average of 10,000 units a year). The same goes for Bone Marrow donors; apparently it’s a simple blood test and getting your name on a list somewhere that you may or may not be called up for. But it’s an incredible thing to do if it could save someone’s life. In Mac’s case, they are looking for as close to an exact match as possible (Peter or Annie), but if they don’t match and drug therapies are not doing their job, we may go to a close match (from a stranger) in about a year. That being said, there are other cases where exact matches may not be as important so becoming a possible donor is a nice thing to do. I hope I’m getting my point across… we can’t really tag anything specifically for Mac, but someone somewhere did their part a while ago and it has benefitted us at this time. So, if you’re in the mood to do something positive and are physically able, please dontate blood and we’ll look more into the Bone Marrow donor info and fill you in on what we find out.

A lot of you have asked about lawn mowing. Right now, the Latham’s have agreed to mow our lawn so if anyone wants to help, please speak with them. Peter and Annie are up in Alexandria with Barb’s Mom and have lots of family up there with them. We will let you know if anything changes.

Mac likes to get emails from his friends (especially jokes), his email is macattack.carr@gmail.com.

We’re taking it easy this weekend and want to thank everyone for their thoughts and prayers.

First Update

After a whirlwind 3 days, we find ourselves at St. Jude’s Research Hospital in Memphis. Mac (11) has been diagnosed with severe Aplastic Anemia. This is not leukemia, but it is a serious disease where his bone marrow is failing to produce all three types of blood cells he needs. We arrived at St. Judes Wednesday morning (at 2am). They did the bone marrow aspiration Thursday and we got the results today. We have the weekend off for some R & R. Monday, Mo & I have to go get some bloodwork done and Mac has to have his checked. He will have his checked @ every 4 days to keep track of his numbers. There are still some lab results that need to be received so we have a 10 - 14 day window of maintaining the status quo. Unlike Leukemia, this a slow wait & watch program. After all results have been processed, they'll come up with a plan. A) Bone Marrow Transplant (if Peter or Annie are exact matches) along with drug treatment or B) Drug treatment only for about a year and if not working, go to a BMT that is not an exact match. We're looking at 1 1/2 years of on & off treatments at various times. I'm praying one of the kids match b/c that seems like it provides the best outlook.

We are staying at the Grizzly Hotel for the next few days but will probably move to the longer term apartments next week.

Mac is in good spirits and he told me tonight, “is it kind of weird that I’ve been real healthy for 11 years and now I have this disease?” I said “yes, but…” and he finished my sentence with “that’s life, right?” That pretty much sums it up!