Can't believe it's mid-July - the summer is going by way too quickly!! Mac had his counts checked here in April and May, and his hemoglobin kept getting better. (And counts at Children's tend to be lower than at St. Jude, so I was getting excited.) Then in Memphis at the end of June, his hemoglobin was 13.2! Wow - that's normal! Hopefully it's staying up, we'll go to Children's next week to check again. His platelets remain low, at 85K, which is a bummer, but still not affecting his everyday life. They did a Bone Marrow aspiration again, and the results were normal. (They will continue to check him yearly as long as he is on the immunosuppressant or the shot.) So, the plan is to stay on 1 tiny mg of Tacrolimus for July and August, and then maybe stop it all together if things are stable. We'll go back to Memphis in October. When you look at the graph of his different counts over the last 4 years, the trend is basically up. Slow and steady, but up, and that is what the doctors (and I) are so excited about!

Mac is still his calm self, and a good sport about this whole illness thing. He got a driving permit so look out for him if you're on the roads - I'm the one in the passenger seat screaming "brake lights ahead!" which is what I remember my driver's ed coach saying constantly! He's grown a little more, which in itself is a way to decrease the medicines. (I know I've mentioned this before, but in a mg to kg ratio, he's growing and gaining weight so by keeping the meds stable, we have been decreasing them.) He's been cleared to go to the orthodontist(anyone who goes to a transplant has to have braces taken off) but he's not looking forward to that. The only consolation is that most kids his age have braces!

Thanks for checking in and keeping us in your prayers! Hope you are enjoying the summer and getting some R&R. I know I'm storing my energy for the start of the school year, and all the activities it brings with it! Thankfully Mac and Peter will be at Jesuit together, so that's one less school I will have to drive to!

More in October....

Wow - I did not mean to take so long to update the blog after our end of December appointment! But now it's almost Easter! So in a nutshell, here's the scoop: December labs were good and we decreased the Tacrolimus again. The January labs here at Children's Hospital were a little low, and the labs at the end of February (also here) were up again. We go back to Memphis during the Easter break, so we'll see what is happening now! Mac is feeling fine and staying busy. I will update again in April. Thanks for checking in and Happy Easter!

I know everyone is so busy getting ready for the holidays, myself included (I'm a last minute kind of girl anyway...) But I wanted to give a quick update on the race and Mac. He is in the middle of midterm exams now, hopefully doing well! We did his labs on Dec. 1 after the race and the counts were stable. So we go back during the Christmas break and see how things are then.

Team MacAttack had a great time during the weekend, and raised over $24K for St. Jude! All of the kids on our team did extrememly well and are inspiring the adults (me!)to actually run more! Thanks to all who contributed to our cause! This was the first year the 5K ran through the campus of St. Jude. I'd always heard that was the best part of the longer races, but I didn't know why. Now I know! You enter the grounds and immediately see nurses, families, even patients with their masks and IV poles, standing on the sides cheering us on. Here are a few of the signs I remember:

"Smile, Jake always did"

"You think running is hard? Try Chemo!" (held by a patient in a mask)

"Thank you Heroes from our family" (held by the father of a patient)

"You are running for our angel"

"All heroes are on Santa's nice list" (held by Santa)

Needless to say, I am so glad they readjusted the route of the 5K to go through there!

Yesterday, I attended the funeral of a baby girl, not yet 3 years old, who had spent the last 15 months in Memphis battling AML, a very aggressive form of Leukemia. St. Jude did 2 bone marrow transplants, but in the end, the cancer kept coming back. I mention this sad story because this is why we will continue to run and fundraise for St. Jude. I hope one day soon the survival rate for AML will match that of ALL (94%). With our continued support, the doctors and scientists at St. Jude will make great strides in cures. Fittingly, our tshirts this year said "No child should die in the dawn of life. BELIEVE DAT!" With our fleur de lis in the center, everyone recognized us as the New Orleans crew.

Thanks for checking in and keeping us in your prayers. I hope you all have a Merry Christmas! I'll update again after our appointment.

We ended up going to Memphis at the end of October because Hurricane Isaac had messed up the school calendar and basically pushed everything a week later. Mac's counts were good. His hemoglobin was 11.5. We have never seen 11!! His platelets were 87K, and Martha and Dr. Reiss think this may be Mac's new normal for platelets. While significantly low, he can live forever with platelets in the 80's. (Normal is above 150K.) His hemoglobin is low also, but livable. They told me many bone marrow failure patients do not reach normal levels, but live their lives with livable levels, never playing in the NFL or sky diving. I felt a little disappointed with this news because I was just assuming Mac's counts would someday go on to complete recovery, but we'll take "liveable" for sure!

So.... the plan is to be a little more aggressive with the tapering. We are going down on the Tacrolimus (the oral medicine) by 25% and will check labs in a month here. We are keeping the shot dose where it is and concentrating on the other medicine first. It was exactly 3 years mid October that Mac had the second treatment, the one that has been slow but steady, and has gotten us to today!

We are also in the middle of fundrasing for St. Jude. Team MacAttack is participating in the St. Jude marathon, 1/2 marathon and 5K for the 4th year! If you feel like you could make a contribution to our team, I'm including the link. You can pick whatever runner you want to put the contrbution under, it all goes to the same place! I stole this line from a tshirt I saw at the race last year: "We are running for their lives!" How's that for a reason to contribute?!!

http://heroes.stjude.org/TeamMacAttack

As always, thank you for checking in and keeping Mac's bone marrow in your prayers. We are forever grateful to you!

Sorry it's been so long since my last post! No news usually means good news. The summer was fun, we ended up going back to Memphis in July because Mac had a weird symptom while we were in Galveston. So we made a really quick trip on July 2 and he had a thorough check up, sonograms, more bloodwork and all was fine. We just had to make sure!! His counts were good that day, so we left with orders to check here in New Orleans in August and September, and we'll go back to Memphis in October. (Oh, we got the results from the chromosome tests too and things were normal.)

In the meantime, school started and Mac is working hard. His academic load is heavy, but he is no longer playing soccer - which does not bother me, since his platelets haven't been above 100K in a while. He is starting to dabble in some tennis clinics, which he really likes. He still referees soccer games though, so he's keeping up with the game, and earning some money too!

I hope you are all doing well and I'll update again after the October check up! Thanks for keep us in your prayers!

I realized I had never updated the blog after our last trip to Memphis. It was a quick trip, but very long as we crammed in more appointments than usual! Mac had his labs checked and his counts were stable. His hgb is still in the 10's and platelets went up a bit to 81K. Come on 100K, we need them to stay above that number!! Normal would be above 150K. Friday he had his bone marrow aspiration, done by Martha. Yes, our Martha does it all!! It took a week to get results, and the report was long. Martha put a post it note on it that says "all looks great, see you in August." I'm glad she put that on there, because I understood none of it! I guess my Wikipedia degree in Hematology only goes as far as reading CBC's! Anyway, we're decreasing the Tacrolimus a tiny bit more, keeping the GMCSF shot at it's .1 level, and checking labs here in July and back in Memphis before school starts. The chromosome tests they are running take a while to get back, and I haven't heard anything yet on those. But I'm going on the assumption that things "look great" as per the post it note until I hear otherwise!

Thanks for checking in and praying, I always know you get to work when I ask! God has a plan, though it's not always our plan!

When I go in August, I'll have many questions about the aspiration results, and I'll get back to you then. Now it's time for some summer fun for Mac! Take care and enjoy your summer too!

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.