11/9/18 BMT Day +191 Horrific Nausea

A lot has happened this week, it has been very busy and I’ve been unable to write until tonight. I will start with the most important news. Reese’s chimerism came back 100% donor, again. This is what it’s all about and worth celebrating each time we are reassured that my little girl slayed the beast that is JMML!!

Now, backing up. On Tuesday night, Reese was up throwing up a lot, my sweet girl was very sick. Then I saw her resting heart rate hit 200 around 3am and I was very nervous, this is new. Later in the morning she spiked a fever, 104.1, which explained the high heart rates. This is her third fever in the past week or so, all of which have gone unexplained. Reese got Tylenol, cultures of different sorts, and her fever broke about six hours later, just like the other times. She also had an incredible drop in hemoglobin, so the team was worried about bleeds, infections, or something they couldn’t see. So a CT scan was ordered for Reese, and she went in just after 5pm. The doctors really avoid CT scans on the kids who are recovering from cancer, for obvious reasons. But this time, the doctors determined that the information they could gather was worth the radiation. Reese’s CT scan was clear, thank God. Her fever went away. Her hemoglobin (pretty much) stabilized. All of the cultures and tests came back negative. She had a great night on Wednesday and a great day on Thursday, like it never happened. Today she woke up feeling very nauseous, again, and lost her NG tube, again. She recovered really well and was back to eating, joking, and being well, REESE, by the afternoon. What a roller coaster my little four-year-old is on. I often think about when I had the flu. It has happened maybe three times in my life, but I find the experience so horrific I can easily recall every minute. I have something I say to myself when I feel so sick, so nauseous. I repeat in my head, this will pass, over and over. I think, “In just a few hours you will be looking back at this and you will feel well.” This is the rhetoric that runs through my head, it always has when I feel sicker than I can stand. This is what I find so heart wrenching about Reese’s nausea and vomiting. It doesn’t end. For months and months she has dealt with nausea. She used to ask me, over and over, “Mommy, when will I stop throwing up?” then “Mommy, how do I stop throwing up?” and more recently, “Mommy, I will never stop throwing up.” I can’t imagine and I sit with her everyday and see it with my own eyes. I am, as always, more thankful than I can say that Reese beat leukemia. I know that gvhd played a huge role in this incredible triumph. But today I also pray for relief from this evil side effect and for wisdom for all of the medical professionals who try to help Reese get past this lasting complication.

I would like to switch over to more good news for a bit. Reese has a checklist of things to do before she can leave the hospital. I am happy to say that this list is covered in more little red check marks today! The biggest and most monumental- Reese switched over to ORAL STEROIDS! That’s right, this tiny peanut who had severe gut gvhd is now absorbing well enough for her lifesaving steroids to be trusted to her gut!!!!!!! Cue big, happy dance moves!! This is HUGE!! It seemed so impossible not so long ago. But with God, UCSF, and Reese on my team, I have learned that YES, anything is possible! She sits at 0.6… her move to oral was lateral, they did not taper so as not to muddy the water should there be a problem. That means next week she moves to the magic number of 0.5. Incredible.

So how are we ending the week? Confused. It is not clear why Reese has fevers. It is not clear why Reese’s hemoglobin tanked. It is not clear why she had visible blood in her urine. It is not clear why her small intestine looks “inflamed”. We know that her heart is still large and still surrounded by fluid, but it has not changed since September. We also know her heart is working well, she is eating anything she wants (but dairy), and she seems to be loosing a little bit of fluid everyday. There are many wins, some persistent problems, and some questions.

I have been thinking a lot about Thanksgiving and all that I am thankful for. I am going to end with a quiet piece of thanks. Something that could go without recognition, or taken for granted. Today I am thankful for the role of siblings. At UCSF, Reese is allowed to spend each day with her sisters, through flu season. Her sisters have been monumental in her recovery, I can’t even think of how this would look without Quinn. We are blessed that UCSF considers the whole child in recovery, and I am thankful again that we are in the right place for Reese.

What can you see? My girls.
What can you see if you look deeper? Empathy, collaboration, teamwork, love, support, “play” at it’s best and finest.
Reese, Quinn and Claire: The greatest gift I ever gave you was each other.

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