1/21/19 Day +265, Lots of good news

I don’t usually post two days in a row, but I have some good news to share.

First, Reese’s CBC today is the best it has been since transplant! That’s right, her new marrow is really showing us what it can do. A CBC is her basic immune system information… her white blood cells, neutrophils, hemoglobin, platelets… Well, Reese has been engrafted and had neutrophils over 500 since mid May. But her red line (hemoglobin and platelets) have struggled over the past nine months. There have been many reasons for this, starting with VOD and ending with TMA. This is why she received red blood and platelets so many times. Today, both are in normal range, on their own! Her hemoglobin has been hanging out in the 9s the past couple months (which is low, but does not require transfusions.) Now, if you or I suddenly had hemoglobin in the 9s we would feel exhausted. But Reese has been living there so long, she is used to it. Today it was 11.6 (normal is 11.2-13.5.) Happy dance! Reese’s platelets were 148 (normal is 140-450.) They have actually been a little higher than that lately, but this is also a great number! Both fluctuate a lot, in everyone… so we need to look for trends. I’m hoping this is a trend upward that is here to stay! I am curious to see what my doctors think about these numbers, since we left on Friday thinking she may be having a small TMA flare.

Second, her albumin is 2.3!!!!
Ok, let me back up. This may seem normal to you. After we left the hospital a month ago, Reese’s albumin kept trending downward. You may recall that we wanted it to stay above 2.0. Well, it didn’t. Her albumin has been hanging out from 1.5-1.6. Because she isn’t symptomatic, it has been allowed, but watched. Well, her albumin started trending upward the day she came down with the stomach flu. Now, it is holding steady in the 2s, with an all-time (natural) high today of 2.3. (Normal is 3.1-4.8, but this is a BIG win and trending the right direction!!) Again, I’m not sure why this happened during a bout with the stomach flu, coincidence? Probably. I’ll be asking tomorrow, too.

Third, her function test of her t-cells came back. You may recall I said that they test t-cells for function once the CD4s hit 200. First, to put this in perspective, another little 4-year-old boy rang the bell the same day as Reese. He had a different leukemia, and his transplant was just a couple months ago. He has function, and he was cleared to go back to school last week. Reese’s course has been excruciatingly slow, even in the excruciatingly slow transplant world. Back to my story, I didn’t know this, but Reese’s function test WAS run at 190 a couple weeks ago. How happily surprised was I to see these result in my app! I will not pretend that I can explain this, I will just tell you that we are CLOSE. She is about 40% of control and the doctors want to see 50%. Go cells, go! To quote Reese, “I love my new cells.”

That’s my good news for the night.

Reese spent the day at the beach, admiring the Golden Gate Bridge from afar. We have strict instructions “not to cross any bridges” with her. We have to stay on this side of the bay. (There is too much traffic on bridges in the case of an emergency.) So for now, this is as close as we get to the Golden Gate Bridge. But someday, soon, she will cross. She did on April 17 with Quinn, right before she went inpatient for her transplant.

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