Thursday, June 9, 2016
Saturday, May 14, 2016
Mac has been fine with this so far, he's joking about once he loses his hair, he may choose to keep shaving it and stay bald but grow a long beard! I guess it's good he's a boy and doesn't care much about hair! He's excited about graduation, and we are very proud of him for all he has accomplished. He's got some great friends who know what he's facing and who will help keep his spirits up during the yucky times.
I'm going to be switching to a caringbridge site for the transplant, so I'll put the link on facebook and this blog when I get that up. Thanks for reading, and keeping us in your prayers! I keep thinking about the young donor, and pray he passes his medical tests, and is at peace with what he's doing. It's kind of cool that if he ends up being the donor, he was not old enough to be on the registry 7 years ago, and now he is and is a perfect match for Mac. Maybe there was a reason we rode this roller coaster so long before committing to transplant...
Thursday, January 7, 2016
Unless something else develops, I won't update again until closer to May, when we have a better idea of the time table. Until then, keep Mac, and his new donor in your prayers! Mac is handling this new plan in his usual manner. I know he is extremely disappointed about taking a year off, because he is a scholar at heart and really loves school. His elation at being accepted to Rice was short lived because 1 week later we had our meeting at St. Jude. But he doesn't show it; and he said he won't dwell on it. He has a lot of fun and celebrating to do for these last 5 months of high school! He has an inner strength and character I can only dream of having and I certainly wasn't that mature at 17.
Thanks as always for checking in and keeping us on your prayer list! I know 6 1/2 years is long time, and now I'm asking for more. But I am sure that it is all those prayers that are getting us through this extreme roller coaster ride!
Monday, November 16, 2015
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!
Wednesday, September 9, 2015
Friday, July 10, 2015
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
Wednesday, January 22, 2014
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!