11/29/18 BMT Day +212 Steroids to 0.5

For many months I had an early morning routine. Open my eyes, look at Reese’s labs. These were drawn daily around 12:30am April, May, June, July, August, September, October, November. A couple weeks ago they switched her to 3x weekly draws. You may remember, she was getting a lot of blood transfusions. A wise doctor of ours said: “So, we take Reese’s blood out every day, and then give her someone else’s blood.” Hmm. Now that she is doing so well, and changes aren’t being made from these labs, they eliminated a lot… moving it to M, Th, S. (I would like to add that she is getting way less transfusions, more on this later.)
So even though we cut her albumin dose in half early this week, today was the first time we were seeing THE number. It was 2.3. Yes, over 2! I celebrated this goal because I knew that if her albumin held over 2.0, we would continue this trial of watch and wait. This is a big deal! But what does it mean exactly? The doctors will continue with the half dose until Saturday’s blood draw, and see where this is trending. Then possibly make the move to eliminate albumin supplementation altogether (with more careful watching.) But more importantly, Reese LOOKS good! She has handled the taper really well, we are watching for additional swelling and not seeing any. Thank god.

I have a second piece of incredible news. REESE’S STEROIDS DROPPED TO 0.5 TODAY! Yes, it’s true, it happened. Reaching this (safer) dose of steroids is an incredible feat for a little girl who beat severe gvhd. These drops mean that her immune system is having the opportunity to grow into one that functions and protects her. Her t-cells are actually growing now! I’ve been watching the number climb the past month. They are at “127”. Once they reach 200 the doctors test them for “function” and if they are functioning, that is when she will go off isolation. Reese’s immune system is so far behind… this new marrow has been incredibly suppressed. To give an example, another little girl down the hall from Reese had her transplant around the same time. Her t-cells grew and she was cleared to go back to school in late September. I know that Reese NEEDED her complications to beat JMML, her cancer was so aggressive, I am so thankful for her course, because it is what saved her. But for comparison sake, this is how suppressed the doctors have kept Reese’s new immune system, to beat the gvhd, which beat the JMML.

Reese’s neutrophils and other basic CBC white blood cell stuff have been solid since mid-May. But her platelets and hemoglobin (red line) have been a problem for many reasons (med side effects and TMA being the main causes.) She has had red blood and platelet transfusions throughout this ordeal. Without going into this too much (maybe another time) I am happy to say that her platelets are STICKING over 100 and her hemoglobin is holding above 10! I am praying this is a trend that is here to stay!

In other news, Reese has been on three major anti-nausea meds since conditioning in April. The causes of the nausea have changed, but it is now that we are finally able to taper some of these as well!! This is such a big deal, nausea has haunted Reese for so long. Zofran is the basic nausea med… this will be last to go and will stay on board for now… to get her through the wean of the rest. Next is Ativan. She is on a big dose, and there can be withdrawl since she has been on it for seven months, so it is very slowly being weaned by .1 each week (She will be done in about two months.) Benadryl was the third agent and the easiest to remove. Yes, Benadryl can be used for anti-nausea (I didn’t know that.) This one is also being tapered right now, we went from every 6 hours, to every 8, now to q.12. We plan to remove it completely next week- incredible! The last taper I will mention- methadone. Reese was on opioids for many months to survive the pain of severe gvhd. The things that Reese experienced were out of this world (literally, they don’t happen in “nature”, outside the life saving BMT world.) To get her off opioids, they brought in methadone in early fall. They have been weaning it the past two months and she goes off completely on MONDAY!! Praise God and our brilliant hospital!

We talk a lot about Christmas these days. Our elves, Susie, Kokie, and Dottie are here with us at the hospital, causing all kinds of trouble around the BMT unit. The joy of Christmas is alive and well within my family. My kids have written lists for Santa, twice! But Reese told me, “I tell God that I want to go home for Christmas. I tell God because he is the only guy who can do that.”
Santa can handle the baby doll “that walks and talks”. But yes, sweet girl, God will have to take care of your true Christmas wish. And we have faith that He is watching over Reese and protecting her. We are so thankful and blessed.

Pictured: Reese with her night shift nurse, hunting for her elves in the BMT unit. It’s the first thing she has to do everyday.

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