More Boring, Please

Oct 16, 2019

Today marks one month since Aaron's bone marrow transplant. A lot has changed since then. Instead of being zonked on drugs in the hospital, he spent the afternoon in the golden sunshine breaking open geodes with his brothers.

At his appointment yesterday, Dr. Harris asked, "Any fevers?" No. "Rashes?" No. "Constipation or diarrhea?" No. "Eating and drinking?" Yes. "Staying active?" Yes. "Well, okay then, you're boring. And we love boring."

We do, too. People keep asking us what our plans are for fall break, and our contented answer is, "Not a thing." We can't travel anywhere, obviously, and any other adventures are also out of the question (at least if Aaron is involved). Mike maybe hinted at a Star Wars marathon, which might be just the thing if the rainy weather forecast pans out. We're happy to hunker down for the rest of the week.

Aaron's blood counts are looking good. When he went to his appointment on Friday, his neutrophils had dropped to 600. Dr. Boyer had guessed they would be somewhere between 500 and 800, so the drop wasn't surprising but still kind of disappointing. Aaron got another shot of neupogen, and then yesterday, his neutrophils were at 1000. This probably means they had been higher over the weekend and were falling back down, but hopefully we will be able to see some stabilization this Friday.

So yes, if you couldn't already tell, we are back at the hospital twice a week on Tuesdays and Fridays. The reason for these frequent appointments is two-fold: check Aaron's blood counts and monitor his Tacrolimus level.

Tacrolimus is the anti-rejection/immunosuppressive drug Aaron is taking. It is a bit temperamental, so it has to be evaluated frequently and his dosage adjusted accordingly. Aaron has to take it at the same time every morning and night, and then we always have an early appointment, so they can check the level when it is at its lowest point.

The doctors and nurses take this drug very seriously. The first night Aaron took it, the pharmacy was slow getting it up to Aaron's room, and it is pretty much the only time we saw any of our nurses ever get angry.

While Aaron was in the hospital, he had signs posted all over his room, reminding the nurses to administer tacro "in the purple lumen only." That's because they can't draw the level from the same lumen they put the drug into or else it will automatically show an elevated number (apparently, it is a very sticky drug). Unfortunately, in spite of very competent nurses and careful diligence on Mike's and my part with double checking that the tacro was going into the correct lumen every morning and night, Aaron's line somehow got contaminated. It's not a huge deal; it just means that he has to get a peripheral draw from his arm when they take his tacro level instead of just accessing his central line.

And it was tacro and that contaminated line that got Dr. Boyer all riled up one day, too. The day before, when they suspected contamination, the BMT team ordered a peripheral draw to see how it compared to the one taken from his central line. In the meantime, while we were waiting for phlebotomy to come up, the nurse decided to get Aaron's tacro running (like I said, he's supposed to get it at the same time every day). As it was going, the phlebotomist came in, drew Aaron's blood, and left. And it was then that Mike and I realized that doing the blood draw at the same time as the drug was probably a bad idea. I immediately mentioned it to the nurse, but she didn't seem concerned in the least. However, it was a different story the next morning when we told the same thing to Dr. Boyer. He was extremely annoyed and when he left Aaron's room, Mike and I both worried for the nurse who was sure to be reprimanded.

This is probably more than anyone wanted or needed to know about tacro, but now if I write about this drug in the future, you'll understand a little bit more about it. Before Aaron was discharged from the hospital, they switched him over to an oral version of it. So now we get the stress of it, and Mike and I both have alarms set so that we don't accidentally forget about it.

Back to Aaron's blood counts: even though Aaron's neutrophils are a bit unpredictable at the moment, his platelets are continuing to climb. One week ago, they were 55. On Friday, they were 71. And yesterday, they were 109! The doctors told us that platelets are usually the last type of cell to engraft, so Aaron is doing it a little bit backwards. It was Aaron's lack of platelets that caused us the most fear and anxiety after he was diagnosed, so we are all so thrilled that he is making them again on his own. Plus, I find it very comforting that even though his neutrophils are taking their sweet time, there is still a lot of very obvious cell activity.

The other thing they did on Tuesday was take blood for a chimerism test. This analyzes what percentage of Aaron's bone marrow is Maxwell's. We'll probably have those results on Friday.

But for now, here's hoping that we continue to have a blissfully boring week.


  1. Amy you could be a nurse/doctor with all of the knowledge you have now about this illness.

  2. Oh how wonderful boring is!!! Kay is on tacro also, they can be druggie friends!
    He remains in our prayers!

  3. Congratulations on being boring, and here's to a fall and winter of uninterrupted dullness!

    You are getting to be a real expert! My nephew had to go into the urgent care for something the other day, so I drove him in and met his mom at the clinic, and the doctor came out to discuss what is what with my sister, and after a few minutes paused to ask "Are you a medical professional?" Nope, just a mom whose kid had some big medical stuff going on. That'll be you guys for the rest of your parenting!


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