9/16/19 Growth

Today Reese had her routine check up at Lurie. I have all good news to share from this visit, things are trending exactly the way we want them!

Reese’s hemoglobin counts hung out in the 9s for many, many months. (Normal is 11.5-13.5, but she wouldn’t get a blood transfusion unless it dropped below 8.) The symptom Reese suffers from is fatigue. We know that the TA-TMA caused some of this, but she has been “recovered” from this for quite sometime. Some of her meds have also carried the blame, and many of these have been tapered off over the past few months. However, her hemoglobin was pretty consistent in the 9 range. I am happy to say that we see a new trend, over 10! Today her value was 10.7, we will take it! This is a win!

Over the past 21 months, Reese’s liver has had a BIG job to do. Not only does it need to break down and process the incredible amount of medications she has been on, for 6 months it also had to process TPN and Lipids. (This is complete IV nutrition, bypassing the usual process of eating and digestion, forcing the liver to do the gut’s job. And the liver does NOT like this.) Some of the medications that Reese has taken are especially hard on the liver, and most of these were removed earlier this year. However, one of these, posaconazole, was just removed a month ago. Posaconazole is the antifungal medicine that kept Reese safe from the teensiest microscopic fungus that you and I breathe in all the time (and our immune system quietly conquers this and we never know the difference.) Well, in an immunocompromised person like Reese, these particles are extremely dangerous, because they have free reign, and the consequences are devastating. We know that our team has faith in her slowly growing immune system, because they determined that it was time to move her to a less strong, but less toxic, antifungal medicine. And I am so happy to report that today, Reese’s liver is happy!! All values are within NORMAL. I love that word.

I would like to end with height. If you have been following Reese, you know that she hasn’t grown since she was 3. Her identical twin sister towers over her, and her little 3-year-old sister passed her up late last spring. Reese does not mind, her perspective is too forward to worry about something like height, look at how much she is GROWING, in other ways! But, I am her mom, and I know that at some point, we need to see her body have the resources available to develop like a kid. There are two reasons that she is not growing. The incredibly depleting journey of BMT and prolonged high dose steroid use. Two monsters working against her.

Today, at check in, the nurse measured Reese, like she always does. We haven’t been to Lurie in one month. I recorded the measurement on my phone, like I always do. But wait, 101 cm. She has never been above 99.something. When we got to her room I asked her nurse in the transfusion center to remeasure her. You see, back in February we had a fake out, a mismeasurement that had us all excited. It turned out the nurse did not know how to use the machine. So before I start celebrating real growth, I wanted to be SURE. It was RIGHT. My little girl grew for the first time, over 1/2 an inch!! I don’t really care how much, I care that her body has the resources available to GROW! Incredible.

My little girls started ice skating lessons this fall. And YES, they need the bike helmets. The team is excited about this, it should be great for Reese’s balance and core strength. Time will tell!

I am going to attach links to two different studies run by our fabulous JMML team at UCSF. This is for all of you who donated to our fundraiser, Lemonade 4 Leukemia. This is the kind of forward thinking and groundbreaking research that we are supporting!

JMML and Transplant (Reese is part of this ongoing trial, and yes, she is a “responder”!!) Link Here:

https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.27948?af=R

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3 thoughts on “9/16/19 Growth”

  1. Such AWESOME news, so excited for you and your family. Time for the fire and snores party!πŸ’—πŸ‘πŸ€²πŸ«πŸ”₯πŸ’—

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