As Beaudin’s body continues to recover from the chemo and the CAR T infusion, he feels better and better. At our last clinic visit his ANC was up to 1100 which allowed Joshua and I to exchange “woot!” and then “How weird is it we are excited by that?” texts. Hoorray, our son has 1/4 the immune system of a normal kid (normal range is 4,000-8,000), Whoopie! It’s weird. But here we are, exchanging texts half way across the country at 7am while out kid is in a clinical trial for relapsed leukemia so I guess weird is normal.
As his ANC increases, so does his bone marrow production and so goes his energy. He has been feeling better, and though he never felt super poorly aside from the 48 hours around day 5, he has been tired. But moreso every day, his energy seems to be coming back. It will be interesting to see where his energy goes as his body will no longer be held down by chemo. Prior to CAR T, Beaudin was taking maintenance chemo that kept his bone marrow suppressed to an ANC of around 1000-1500. Now he is able to rise as high as he like, and it will be interesting to see what that means for his baseline energy. He is also expected to have a significant growth spurt for the same reason. He hasn’t grown much in two years since in bone marrow has been under constant suppression, now it’s free to thrive (and thrive we hope it does!) and so we can expect to see some inches and pounds added to his stature.
Yesterday Beau had a unique opportunity to practice baseball with a local little league team in Philly. Our family friends out there have a son on a local team and they invited Beau to practice with them. Beau was in his element and loved his time around humans who were not his mom, dad, or doctors. Beau has often been a more timid kid, and so to hear from Joshua that he participated in the practice without any hesitation made my heart flutter.
Beau has also been able to log-in remotely for some school work with his elementary school back home. This has been a surprise benefit of having such a connected classroom thanks to COVID. It is hard to make the schedules all work out, but when they do, Beau feels very connected and eager to be with his classmates. We are so thankful for this.
From now until Day 28, Beaudin will have clinic visits once per week to check labs. They will ensure everything looks healthy and that he continues to have b-cell aplasia, aka that his b-cells have not returned. This is expected as upwards of 90% of kids maintain b-cell aplasia for the first month. After the first month is whole other story for another post that frankly I am dragging my feet on writing. But it’ll come.
On Day 28 Beaudin will have a bone marrow biopsy and lumbar puncture to check for cancer, and we will very much except there to be NONE! However, since they have to send the samples to Seattle lab is more precise, we have to stick around for another 7 days after that to get results.
Did you know that if you subscribe to my blog, each post gets dropped into your inbox just like an email. Not opening a new window in your browser, or remembering the check the website, just straight into your email. Did you know? Did you? Because you know who didn’t? My brother. Who until this morning, 2 years later, was not subscribed to my blog. Hi, Rog, love you. I will forgive him of such a crime because you will recall that he helped keep me alive by texting me hourly reminders to eat which I detailed in this blog post, but I am just here to reiterate that if you read my blog more than once, now is the time to subscribe. Don’t be like Roger and wait two years only to have his wife constantly knowing more about me than he did because she was caught up on the emails. I wonder if she lives the #inboxzero lifestyle. I am going to guess no, but she reads my emails and that’s all I really care about. And now Rog does too.
Speaking of Roger, he and I had a lovely, long conversation this morning as he was grocery shopping, in-person like a monster (don’t blame him, he lives in a town too small for InstantCart, poor guy), and I was driving around town pondering how to spend my babysitter time, which I guess I spent driving around wondering how to spend it. And since we are both in the trenches of three-nager parenting, we have plenty to discuss. He is a good brother, you should all get yourself one.
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The Heavy Wait 