For all of you on this roller coaster ride with us, hold on.... yesterday our very wise Hematology team decided to put the HSCT on hold for a couple of months. Mac's platelets have decided to kick in, slowly, and the baby red blood cells (reticulocytes) are showing a tiny improvement. His ANC has remained in the low range of normal lately. There are some genetic tests they want to run and the results take a month to get back. There is some ambiguity in what those results might show, but it may or may not make a transplant a necessity. (Even if the results are negative, a transplant may become necessary anyway if his counts trend downward again. Did I confuse you?) It's all relatively new stuff, but FYI, telomere length is the buzzword of 2010. (You can say you heard it here and work it into your casual conversations if you want to be in the know. Telomeres are the ends of chromosomes, kind of like aglets are the ends of shoe laces.) Anyway, we're back to waiting and hoping we see an upward trend in the next 6 to 8 weeks. Although I've been accused of being a pessimist, or as I prefer to call myself a realist, I told them to keep our room on the transplant floor reserved for April. We'll see if we get there. Hopefully not. They really want to give this treatment plan a little longer, and rule out genetic issues.

So there you have it. The double loop for the day. Let's pray that Mac's bone marrow rebounds in the next few weeks and the genetic/chromosome tests come back negative! As always, thanks for checking in, praying for us, and thinking of us. Who Dat!!

We heard today that donor #2 passed the physical! So it only changed everything by one day. As of now, the transplant date is March 5 and everything works backward from there. He will go in next Thursday evening and start the Campath on Friday the 12th. Then out again if he's doing ok, then in a week later for the chemo work up. We are hoping his old, failing bone marrow will roll out the red carpet for the new marrow, and that the new marrow will feel comfortable in its new bones and not attack any organs (graft versus host)!! That's the nonmedical terms for the goal of the transplant! (While I've become a part time hematologist, I haven't quite specialized in HSCT yet... so laymen's terms will suffice for now.)

I am very thankful for Donor #2 and their unselfish giving of healthy bone marrow to Mac! (Who dat say they wanna donate marrow?) It's also time to start praying for the transplant doctors! As we learned before (remember September?) it gets tricky keeping everything happy and trying to accomplish the main goal. There will be days when Mac is feeling really bad, but all we can do is count the days.... everyday on the other side is a positive day! Thanks for checking in! And Mac said Go Saints, Finish Strong!

We had a blizzard in Memphis on Friday, and were snowed in on Saturday. Sunday, Mac and some other kids went "sledding" on the slope in between Target House 1 and Target House 2. I'm not sure if that's what it's called when you use rubber maid tops and cardboard boxes, but there was sliding involved!

Otherwise not much new to report, just pray Donor #2 is in perfect health!! More later!

We heard today that our 10 out of 10 match did not pass the physical. Mac has a 9 out of 10 match as a back up that is now being put through the process. If they pass the test, we'll be a couple weeks later in the process. If not, it's back to the drawing board. As they explained to me, he is "open" in the search part, so if a great match comes in, they will get a message. Back to the waiting game for us.

Here's a big cheer from Memphis.... GO SAINTS!! We're gonna be watching when the Superdome levitates, stops for a poboy and flies on to Miami!!!

BMT update: It is actually called a Hematopoietic Stem Cell Transplant or HSCT. But we still refer to it as a Bone Marrow Transplant. Mac will go into the hospital on Feb. 10 for about 5 days to get his immunosuppressant. (They will not be using ATG this time!) Then he'll go back in on Feb. 23 for chemo and on March 4 he will get the donor's bone marrow. His match is a 10 out of 10 so that's an advantage going in. We don't know anything about the donor and they don't know anything about Mac except that he's an 11 year old male. (After 1 year we are free to contact each other.) At some point at the end of January he has to have his single lumen changed to a double lumen. He also has a schedule full of appointments, scans, evals, and of course school and PT. He's feeling pretty good and we are just trying to make the most of our 'freedom' until we go back in. He's mastered the Rubik's cube in his spare time! You can see his cheeks are almost back to normal.


Thanks for checking in and praying. Hope you are enjoying the day off if you got one!!

I haven't forgotten to update, there's just not much to report. I meet with our BMT attending on Friday so I'll know more then. Mac is feeling good, going to school and PT and clinic. We're getting him in shape because the stronger he is going in, the better. (That was Mo's idea, and the doctors agree with him!) Today he had school and we went to see a movie. He's been craving hibachi, so we've been to Shogun twice. (Whatever it takes to beef him up!!) In the meantime it's the calm before the storm (are you having deja vu from my July posting?!) And since the weather has reached the double digits (no kidding - it was 9 degrees one day last week!) it's more bearable to be outside and go places!