It's been a while (a year and 1/2 to be exact) since I wrote last. To sum things up, Mac tapered completely off the Tacrolimus, after which the hemoglobin went up, but the platelets went down. He's continued getting a shot of GMCSF daily, which keeps the ANC in a normal range. That's a good thing, because that is his ability to fight infection. Last fall, we started talking about a new medicine which was approved for ITP already and was just getting approvals for Aplastic Anemia patients. It is called Eltrombopag, (aka Promacta). It is a pill, and is generally well tolerated. After watching Mac's platelet count fall dramatically all spring, and his hemoglobin a little, we made a trip up to Memphis to start this new treatment plan, written especially for Mac by the doctors at St. Jude!

On Tuesday, Mac had his bone marrow aspiration (he gets one every summer anyway) to have a baseline for the start of treatment. He will start it next week. He will be the first St. Jude patient to use it for Severe Aplastic Anemia. It has been used by patients who have ITP (platelet issues) and has recently had successful results in SAA patients who have a moderate response to immune suppressing therapy (like Mac did!) I’m fairly confident this medicine will increase his platelets (which is the main problem we’re having) but the hope is that it will improve WBC and RBC as well. And then the true test will come when it’s time to taper from this medicine. Hopefully the counts will stay up. Some “robust responders” in the research were completely off the medicine and their counts were staying up. So that’s what we need and are hoping for! There are many parameters for increasing & decreasing the dose as we go through treatment. We’ll get labs here in NO every 2 weeks and he’ll see our pediatrician here every month for a quick physical. Then we’ll go back to Memphis during the Christmas break and get another bone marrow aspiration and eye exam. As you can see, they are keeping a very close eye on Mac; I think everyone remembers all too well the way he responded to his first treatment 6 years ago!

The team at St. Jude is so good and thorough, I know we’re in the best hands. I joked that we rode the rabbit roller coaster as long as we could and now we’re jumping on the next ride… all trying to delay, or permanently postpone a bone marrow transplant. But, 6 years ago this medicine wasn’t on the radar, so I figure as long as we keep riding along, living a “normal” life, new and better drugs are developing! At the very least, we hope to get Mac through senior year and apply to colleges, and then defer a year if he needs time off. At the very best, Eltrombopag will do the trick and get his counts up and he can proceed as planned! Regardless, he's paving the way for other "moderate responders" and taking it all in stride as his custom. We're looking at colleges and preparing for his Senior year as we fit this "catastrophic illness" into our daily routine. Go Mac!

Thanks for checking in and keeping us in your prayers! I will update again when we've gotten some results from the new medicine. Barbara

Happy New Year! In my last entry, I said I'd write again in October, but suddenly it's January and I'm just updating! Since Memphis and doctor's visits no longer consume our lives, I forget about the updates. That's a good thing, I have to think!! So in a nutshell, here's what happened over the fall: We went to Memphis at the end of August because Jesuit had a day off. Mac's counts were a bit funny, and he had a back to school cold, so we attributed the weird counts to that. We continued with the plan to stop the immunosuppressing medicine, Tacrolimus, and check again at NO Children's Hospital in Sept, Oct, and Nov and then return to Memphis during the Christmas vacation. His hemoglobin and ANC went back to normal after his cold in August. But for some reason, the platelets dropped during the fall, once as low as 49K. That of course sent me into a panic, but they were up a little when we went back to Memphis in Dec. So, more waiting and watching. Hahaha - you'd think I would be used to that by now. We are decreasing the shot he gets by 25%, and we'll see what happens to his counts over the Spring. We go back to Memphis at the end of March. Our hope of course is that his counts remain stable and we don't find out that he is dependent on the shot to keep things up.

On another note, Team MacAttack participated in the St. Jude marathon weekend events in early December for the 5th time! We raised $30K! Thanks to everyone who contributed to our team and this great cause! Unfortunately, due to the winter storm passing through Memphis, a state of emergency was declared for the area, and the race had to be canceled. But... all the other (indoor) events went on as planned and we managed to keep ourselves busy for the weekend. As usual, a wonderful Saturday night dinner was hosted by Gail & Eric, and that is always fun!

Hope 2014 is treating you well so far! Thank you for checking in and keeping us in your prayers!

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!