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!

What a great summer it was! I loved watching Mac do everything he couldn't do the last 1 1/2 years! It was a mixture of camps, trips, movies, games, and down time. School starts next week and for the first time ever, I'm actually a little bummed. As the kids get older, the schedules get more intense, and I'm not necessarily looking forward to being the taxi driver again. (Or waking up so early either!)

Mac's labs from Children's in July were low, and then the labs at St. Jude on Friday were consistent. So that's not such good news. Remember we had taken the shot down to the .05 level, which is tiny, and were assuming we would discontinue the shot after this visit. But with a hemoglobin of 9.3 and platelets at 79K, we have to continue the shot and actually increase it back to the .1 level. All things considered, that is still a tiny amount, but Mac was really looking forward to having no daily shot. But we have to get the counts back up because school & soccer are about to start. He needs his platelets up and his energy up. When I got a little panicked at the drop, Martha said we're still watching and waiting. She assured me that other patients have taken a long time to taper from the medicines and still went on to full recovery. (She said there really is no "normal" for aplastic anemia patients, there is a best case scenario, and obviously we're way past that point!) Also keep in mind that Mac is not on the same medicine most people are on... this treatment is ATG (rabbit) and Tacrolimus. I call these the "cousins" of the real medicines used, but those are the ones that resulted in the downward spiral 2 years ago. So, our recovery time may be slower for a reason. All we can do is keep our fingers crossed and keep thinking positive!

Since Mac's appointment Friday wasn't until noon, we got in a visit to Graceland, home of Elvis. I figured it was time to see it since we've driven past Exit 5 just south of Memphis so many times. It was very groovy, very entertaining, and we enjoyed it. Not a must see attraction, but definitely fun to see if you're in the area!

We'll get labs checked here in 3 weeks, and back to St. Jude in 6 weeks. Next week, Mac will start 8th grade at Jesuit HS. That's big stuff! Thanks for checking in with us and keeping Mac in your prayers. Obviously we're going nowhere fast...

Mac has been very busy since the last post! He graduated from 7th grade and then we took a graduation trip to Disney/Universal with 2 other families. He is still a roller coaster maniac, and can ride the scariest of rides over and over! It was great to see him having such a fun time! We also went to both waterparks in Disney since it was so hot, and he & his friends covered all the rides - including Plummit Summit at Blizzard Beach!

We were only home 2 days when it was time to go to Memphis again. Mac's hemoglobin was 10.5 again! This makes 3 labs in a row with a hemoglobin in the 10's. Could 10 be the new 9?! I hope so! Platelets still hover around 100K. Enough to live a normal life, but not enough for contact sports or heading a soccer ball. We will decrease the shot to the tiniest amount and check labs here in 1 month and then back to Memphis in 2 months. Our lab checks are getting more spread out... another great sign of his stability and recovery!

As always, our visits to Memphis are a bit of a reality check. While Mac is hovering on the brink of "normal" he is leading a fairly normal life. But seeing the kids there remind us of how lucky we are. We ran into a family whose son is on his 4th Bone Marrow Transplant. Four! Makes Mac's journey seem like a walk in the park. (And this last transplant seems to have done the trick as they will be heading home within the month cancer free!) St. Jude continues to work tirelessly to cure everyone they can! I am so thankful we ended up there and so thankful we made it this far!

We have a half busy, half lazy summer ahead - a couple of camps for all the kids, a trip to the beach, and some down time to relax. Mac may attend some soccer evals this week to see if there may be a place for him on a team in the fall. We'll see how he does! (And definitely no heading the ball for the time being!)

Thanks for checking in and keeping us in your prayers! Have a great summer!

Happy Easter! We had a great trip to Alexandria - had fun seeing everyone and visiting. The Easter bunny found us there too! From there we went to Memphis and Mac had a checkup. His counts were pretty good and the big news is.... the line is out! No more dressing changes, and Mac can resume normal activities for the most part! Goodbye line, hello swimming pool!!




We call this "line in a bag".

What a great milestone! He will still have labs checked every 2-3 weeks, he'll just have to get poked. His bone marrow needs to work a little harder, but it's trying. Hope you all had a great Easter. Thank you for checking in and keeping us in your prayers!

Happy Spring! We had a great time over the Mardi Gras break - we went to Washington, DC. Here's a picture of Mac holding the Washington Monument. Who is stronger: Annie holding the sun or Mac holding the monument?!! (I think he has a future in trick photography!) We walked miles and miles and Mac held up like a champ! It was freezing for us, but we packed our days with activities anyway.

After a quick recovery from our big trip, Mac, Annie and I made a quick trip to Memphis. Mac's labs were ok, not awesome, but good enough to further decrease the shot to the lowest level....again. (Remember we did this already last summer?) Let's see where this takes us. Annie's favorite part is always the visit to the gift shop!

Otherwise things are fine here. Mac and Mo helped at a blood drive for a little boy from St. Matthew. It was good for Mac to be on the helping end of the blood drive, and see what was done for him 18 months ago. And of course he loved eating all the cookies and juice. Mac's illness also qualifies him for a "Make-a-wish" wish, so he is thinking of some good stuff to wish for. I'll keep you posted on that!

Thanks for checking in and keeping us in your prayers. Come on bone marrow.... now would be a really good time to work full force! If only parents got a "make-a-wish"!!

Happy Birthday Mac!! Yikes, there's a teenager in the house! I told Mac that I have the authority to not promote him on to the next year if I don't think it's time yet! (He doesn't think that is very funny.) I love the tshirt he got last year at St. Jude - the one that says "A star was born today"... if I can dig it out, I may make him wear it!

His labs this week at Children's were ok. His platelets have dipped again, below 100K, so I have to watch him a little closer. Hemoglobin still in the 9's. We're still hovering. Everyone tried to tell us this was a long, slow process, but really?!! This is trying my patience. I wish there was cure for bone marrow failure. A magic pill that makes it work full force again!

We have Mardi Gras fun coming up and we'll do labs again mid-March in Memphis. Thanks for checking in with us and keeping up those prayers. We are very thankful for you!

January was very busy for us and passed so quickly! Mac did labs at NO Children's Hospital in the middle of the month, and everything was down a bit. Then we went to Memphis at the end of the month, and counts were up a bit. The roller coaster ride continues! I get worried that everytime they're down we're going to hear the Bone Marrow Transplant enter the picture again, but so far, that hasn't happened. We have heard more than once "the bone marrow takes a long time to recover." So it's the status quo for now, as far as medicines are concerned. This is definitely a test of our patience!!

Hope you are all doing well and surviving the cold weather if you are affected. Down here, it's Carnival time! King cakes, parade plans... It's a fun time to be in New Orleans!

That's about it for now. Thanks for checking in and praying for Mac and his sluggish bone marrow!