We did labs at Children's at the end of March and the Hgb was 10 and ANC was stable. The platelets dropped more. So we'll do labs here again in about a week and then we'll go to Memphis after school is out. Martha mentioned doing a bone marrow aspiration during this visit. The last time Mac had one was Dec. 2009 when he was still transfusion dependent. The hope is that the cellularity % is higher than it was then and they don't find any chromosome abnormalities. They are also looking to see if there are more megakaryocytes (platelet makers). So that's the latest prayer request! I always know I can ask and you all get to work!!

Otherwise things are going well. The last nine weeks are flying by, I can't believe school is almost out for the summer. Thanks for checking in and praying, and I'll update again after our Memphis appointment.

We survived Mardi Gras and made a quick trip up to Memphis at the end of the week. Mac's counts were stable, Hgb still at 10.5 and platelets hovering at 85K. Dr. Wang and Martha noted that Mac had quite a growth spurt the last few months, so therefore we are not decreasing the Tacrolimus at this time. His milligram-to-kilogram ratio is actually decreasing due to his growth. To keep the medicine constant, we'd have to increase it. I just told them that he's outgrowing his medicines, just like all his pants!

Mac turns 14 tomorrow, and in the St. Jude birthday spirit, the wonderful staff of the H Clinic sang to him and gave him balloons, a card, and the ever popular "A Star Was Born Today" tshirt. I know I have said it before, but H clinic is Mac's Cheers bar: everybody knows his name!! We will always be thankful for the incredible people who work there.

That's the report for now. We'll check labs here in about a month and then we'll see if we need to go up around Easter or if another check can wait until May. Thanks for checking in with us and for keeping us in your prayers!

It's been a while since my last post, I realized I didn't write after our holiday checkup. We went back to Memphis at the end of December and things were fine. The hemoglobin was 10.6, which I'm pretty sure is the highest I've ever seen it! The platelets and ANC dropped a bit, but since Dr. Reiss was out of town, Martha thought it best to leave things alone for now. We did labs at Children's last week, but I haven't heard the results. I'm sure they are low, and that is why Martha didn't call me & tell me to lower the tacrolimus by a little more.

Honestly, I'm good with this long, slow taper. I keep the thought of a bone marrow transplant in the back of my brain, and I don't let it out much. So the longer the taper, the longer a BMT is away! Of course the best case scenario is that he tapers from the medicines and his counts stay stable, and that is still the current plan. But the "what if" is always looming.... So for now, a long slow taper, say 80 years, would be fine with me!!

Our next trip to Memphis is over the Mardi Gras break, unless they think we need to do it sooner. Mac is doing fine in school and growing like a weed - tall & skinny!!

Thanks for checking in and praying. Just when I think no one is reading the blog anymore, I hear someone ask about Mac's progress. I thank you all for your concern and prayers. I am sure that is what is giving us (and Mac) the strength to deal with this illness. It's not easy being a teen with an illness. I had another St. Jude family mention this to me recently. So please pray for Mac's continued patience and strength - and of course his bone marrow!!

Happy Mardi Gras!

Wow! Y'all are good! Ask and you shall receive... We went to Memphis for the St. Jude Marathon weekend, and had a quick lab check and visit with Martha and Dr. Reiss before we started the festivities. Guess what? Mac's telomeres were longer (improved) and his counts were stable. We will wait a few more weeks, check the counts again, and if they are still stable, we'll decrease the tacrolimus a little more.

The news of the telomere length is encouraging because it moves us further away from thinking the cause of Mac's bone marrow failure is genetic, thus making a transplant a necessity. It's all really new stuff, and the report comes from a doctor in Canada, and I don't really get it all. But I do know that the last time his telomeres were tested was right after his visit to the ICU, so his body was under quite a bit of stress. They are assuming this is the reason for the improvement now. Whatever, we'll take it! Now we keep waiting and watching and praying his system is not dependent on the medicine to work.

Team MacAttack had another wonderful weekend. We got lots of great comments on our "Cure Dat" shirts. We raised over $30K! All the kids did the 5K, including Mac. He ran it in 30 minutes, pretty good for a guy with a hemoglobin of 10!

Just being a part of the weekend is so rewarding. You know you are a part of the greater good by fundraising for St. Jude. They are doing so much research and so much curing. But they still have a long way to go. As they said at the dinner Friday night "Danny's dream was not to have 90% cure rates. His dream was that no child shall die in the dawn of life." So their goal is to keep on working until cancer and other catastrophic illnesses are curable! Talk about Running for a Reason!!! Maybe some of you out there would consider joining our team next year. You can run for their lives also! If not, of course we love your donations! Thanks to everyone who donated to this amazing hospital in Mac's honor! You are saving lives with your donation!

Our next appointment will be after Christmas. So until then, take care and Merry Christmas! Enjoy the holidays. Thanks for checking in and praying for us! We love you all!

We went to Memphis earlier this week for another check up. Mac's counts were good - hemoglobin back to 10, platelets 92K, and so now we start with plan B: decrease the 2nd medicine while keeping the first one (the GMCSF shot) at a low level. Where will this take us? Hopefully stable or up! I am hoping that we do not find he is dependent on the medicine to keep his counts up, because that would lead us straight to transplant. (And there is never a good time in a kid's life to take a year off and have a BMT!) They also sent some labs off to test his telomere length - that is a word you haven't heard in a while. Suffice it to say that hopefully his telomeres are longer than they were 2 years ago. We also had our final appointment with Neurology as he has been off the anti-seizure medicine for a month. He passed all the tests and we got to say adios to that department.

So, in this month of Thanksgiving, I am once again thankful Mac is alive, in school and having a good time. I am thankful he has been transfusion independent since Feb. 2010. I am thankful he is smart and schoolwork comes easy to him as his health has been such a challenge. I am thankful God has given us the strength to get to where we are. I am thankful for St. Jude and the good work they do for sick kids. And I am thankful to you - for always checking in and keeping Mac in your prayers.

Remember someone once told me we could be very specific when talking to God? We're 2 years out and I was hoping to see the light at the end of the tunnel by now. Instead, the prayers we need now are for stable/upward moving counts as we decrease the Tacrolimus and improved telomere length. That's it! One day at a time!

Happy Thanksgiving!!

We made a quick trip to Memphis on Sept. 23. Mac's counts were back up to where they were in August, with Hgb up to 9.7. So that's better news. We are keeping the shot where it is right now, at .1 and checking again in NO in a few weeks. Stable is better than down!!

Once again, Team MacAttack is fundraising for the St. Jude marathon in December. If you feel like you can make a contribution to our team to support all the amazing work St. Jude does, please click on the link below and click on a runner's name, so they get credit for your donation. We are a little less organized this year, but with all of our experience, we can pull it together quickly! On this last trip to St. Jude, I saw a little girl wearing a tshirt that said, "Cancer: had it, fought it, beat it." That is exactly what your donation will go to!

https://waystohelp.stjude.org/sjVPortal/public/displayTeamPage.do?eventId=166948&programId=401&teamId=11132

As always, thank you for checking in with us and thinking and praying for Mac!

We've done labs twice in 2 weeks (here at Children's) because Mac's levels dropped a bit more. The second time they were consistenly low with the first, so we're waiting to see where we go with this trend. We'll be back in Memphis in a couple of weeks, so we'll see how the counts are, and if the shot needs to be increased again.

Hope everyone is getting the beautiful weather we're getting. Tropical Storm Lee brought in 3 days of rain, and then sunny, low humidity and 80 degrees followed! Mac is doing well in school, keeping up with work and soccer despite his low counts. Kids are amazing! Thanks for checking in and keeping Mac in your prayers!