Well, we gave it 16 weeks, and Mac had absolutely no response to the Eltrombopag, so he just stopped it this weekend. His platelets stayed at 19K pretty much the last 2 months. It's almost comical... and statistically weird! Everyone's counts go up and down throughout the days, weeks, months. Tiny increments of change, but literally every 2 weeks when we get Mac's labs, his platelets are at 19K. He's consistent I guess!

So, where are we now? Mac is still fine, doing great in school and enjoying himself. He has applied to 4 colleges, and has a few more to apply to. He's tired of writing essays, but otherwise good! We'll keep checking labs here until we go to Memphis over the Christmas break to discuss options. I don't think we have many options, except do whatever it takes to get him through May, and then do a Bone Marrow Transplant and defer college a year. Yuck! A preliminary search has shown that he has potential donors, so that is good news! I don't know the details of the donors (or how close a match they are) yet, but we'll discuss it all in December.

The roller coaster continues... Thanks for checking in and keeping us in your prayers!

Mac has been on the Eltrombopag for almost 2 months and we've had absolutely no response. Ugh!! So far, his counts have actually gone down. Needless to say I'm very disappointed! We increase the dose and check his counts every 2 weeks, and he is almost at the highest dose. He has had no side effects so far, so that is good. I will update again next month, and hopefully have some good news to report. In the meantime, Mac is feeling fine, getting off to a good start to the school year, and keeping busy. Thanks for checking in and keeping Mac in your prayers!

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