Thursday, June 9, 2016

We're in Memphis and I started a Caringbridge page, so you can go there to keep up with our story!

Saturday, May 14, 2016

As of last week, have a tentative date for Mac's transplant! Let me stress tentative, because it's dependent on so many factors falling into place. Mac has 2 matched unrelated donors who have agreed to donate their bone marrow, and some of this is dependent on them passing everything on their end and agreeing to the timeline. We know the first choice is a 23 year old male who lives in the US. All he knows about us is Mac is an 18 year old male with aplastic anemia. So Mac and I will go to Memphis May 31 and do about 2 weeks of preliminary tests - they will test every inch of his body and get baselines. (I remember these from 2009 when we thought we were going to transplant... eyes, ears, lungs, bones, heart, etc. Nothing is left out!) Then on June 14 he will get admitted to the transplant floor for 8 days of chemo and radiation. Day 0 (the day he gets his new bone marrow) will be June 23. After that, there will be more immune suppressing medicines (this time suppressing the new bone marrow from attacking his organs) and we wait for it to engraft. If all goes well, he will be discharged sometime about a month later. We will go to the Target House in Memphis for several more months, and day 100 will be the ticket for us to come back home to New Orleans. Certain parameters will have to be met by then, and if they are, he will not need to be checked as frequently. I haven't gotten this schedule in the mail, which means it's all tentative (and even if I get the firm schedule, things can change!) But after years of knowing this was on the horizon, it's good to have a plan.

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

There is good news and not so good news... so the good news first. Mac got into Rice, Tulane, Texas A&M and Ga Tech & LSU and he has told Rice he will attend. We are so excited for him, it's been his first choice since we visited 2 years ago. Now the not so good news. We confirmed that he will need a Bone Marrow Transplant in the near future, and this summer is the best time. It is a natural break in his life, and though he is ready to move on to bigger and better things, the time is right to fix a problem that obviously is not going away. We could continue to tweak the medicines and his bone marrow could hobble along for a little longer, but that just adds toxicity and more complications in the long run. So transplant it is... Big risk, Big reward. Mac has several matched unrelated donors, so that is great. We don't have any firm dates, just that it will be this summer with his graduation in May being our top priority. Since the transplant team has time, they are going to start with the donor's availability and work backward. As a general guideline, transplant will mean about 30 days in the hospital, 4 months in Memphis, and 1 year out of school. If all goes well, he will be slowly feeling better after the first 4 months, and we will be able to be home as he gets stronger. They compared him to a newborn, and we will keep him out of the world as much as possible for about a year. Then... he moves on, with a working bone marrow and completely new immune system. This is huge, it's what I've been dreading for 6 1/2 years, but it's the only way to go. And the fact that Mac will be going in strong and is still young and fit are all marks in his favor.

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

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!

Wednesday, September 9, 2015

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!

Friday, July 10, 2015

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

Wednesday, January 22, 2014

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!