BMT: Isolation (Day +19)

Today was not as boring as some of our previous days. Clark woke up bright and early, ready to play. Things were moving along nicely, until about 8:30am when he started throwing up.

Yesterday, Clark stopped taking Zofran, an anti-nausea medication that he had been taking every 8 hours for the last 4 weeks. We decided to stop it because Clark has been doing so well, and we didn’t think he needed it anymore. Now we have the Zofran on open order as a need-to medication. Maybe he just needs to be weaned off of it?

With Clark’s nausea, and also the fact that Clark woke up too early, Clark was not in the best mood. We played by the window for about 30 minutes before Clark’s 1st temper tantrum. I didn’t want him flailing around and falling on the floor, so I had to take him back to the crib. He continued to scream at me until he wore himself out. Then we just cuddled until he was happy again.

What is missing in this picture?
What is missing in this picture?

One MAJOR benefit to Clark not taking Zofran, is that it was his last medication taken through IV. Because of this, Clark was unhooked from his lines! Freedom! (Said in a yelling sing-song way). He will be “Hep locked” every 24 hours. Meaning that they will administer 2 mL of heparin into his broviac lines to keep them from clotting. This is easy, and something we will be doing ourselves once home.

Now, onto the latest ANC news. Clark is at 2440 today!! Whaaaat!? This is in the “normal” range! My immediate reaction: “Umm, doc, are you sure you didn’t calculate that wrong? Like maybe off by a decimal point? Did he go down to 240?”

No! His ANC increased that much!

Let’s talk about some more numbers. Starting with platelet counts. Since we found out about Clark’s Aplastic Anemia a few months ago, he has been having regular CBC’s. These showed that on their own, Clark’s platelets would drop down to 0. He wasn’t producing enough (if any) to keep them at a safe level. In a normal, healthy person, platelets are between 150,000 to 400,000 mcL.

Since arriving at UCSF, Clark’s platelets continue to drop. Once they reach 30,000 or less, Clark usually has a platelet transfusion to bring them back up. Before chemo, he was receiving a transfusion about every 7 days, and since chemo, he has had a transfusion approximately every 3 days. Just last week, Clark’s platelets started to drop at a slightly slower rate.

Then, at day +17, Clark’s platelets dropped to 24,000. The plan was to give him a platelet transfusion the following day. But on day +18, they magically jumped up to 38,000! And now today, they are holding up at 38,000!  Does this mean his new marrow is producing platelets now? Most likely, but it is still early to tell.

Things are getting super exciting… Rumor has it, we may be discharged soon!  More to come…

7 Replies to “BMT: Isolation (Day +19)”

  1. Happiness! Off the charts!!!
    Maybe you guys can go home a little early, that would be so great. Little munchkin and you must be dying to sleep in your own bed, get out in the fresh air, etc…

  2. Sorry about emesis and temper but all the rest is great news. Those cells must be producing, yes,yes,yes! love, Aunt Sandy

  3. Amazing! We had a very similar experience with the zofran. We ended up figuring out that it was needed prior to cyclosporine (that was cause of bens post transplant emesis )and then we weaned gradually…. Hopefully those numbers continue to go up!!!! And also yeah for a day not hooked up!!!

  4. RIght on, that is fantastic news, I have to say that is the way to the start day!!!! Yep, yet bet I am happier than a camel on hump day for you all. Clark, it’s also great to see you in a bed with no bars and not plugged into anything big guy.

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