Slow and Steady

Engraftment is on the horizon. We’re not there yet, but Aaron inches a little bit closer to it every day.

Aaron gets a complete blood count (CBC) drawn every morning at 4:00am. The nurse brings in the report around 7:00am and writes Aaron’s numbers up on the board. 

For the past several weeks, the most interesting numbers have been his platelet count and his hemoglobin because that’s where we were seeing the most activity (unfortunately, always in the downward direction). When those numbers dropped too low, he had to get a transfusion. 

His white blood count and absolute neutrophil count (ANC) have been steadily sitting around 0.1 and 0, respectively. The neutrophils are one of the types of white blood cells. And when it comes to engraftment, they are the star players.

Engraftment occurs when the ANC rises above 500 for two days in a row. And this week, right on schedule, we finally began to see some action on the neutrophil front. 

As follows:

Monday, September 30th (Day +14): WBC went up to 0.2; ANC remained at 0. We were thrilled with this number because the day before, our nurse, Dave, had told us that when the WBC goes up to 0.2, good things are coming.

Tuesday, October 1st, (Day +15): WBC stayed at 0.2; ANC remained at 0. Because the WBC held at 0.2, the doctors said it could be trusted as a true gain.

Wednesday, October 2nd (Day +16): WBC stayed at 0.2; ANC remained at 0. The nurses all assured me this was totally and completely normal.

Thursday, October 3rd (Day +17): WBC bumped up to 0.3; and the ANC finally made an appearance at 100. It was a day of rejoicing.

Friday, October 4th (Day +18): WBC went up to 0.4; ANC held steady at 100.

Saturday, October 5th (Day +19): WBC went up another notch to 0.5; ANC doubled to 200.

Today, October 6th (Day +20): WBC made a “jump” to 0.7; ANC stayed comfortable at 200.

If a graph is more your thing, don’t worry, I found this handy dandy visual on the board this morning.

While this is all very good, and progress is progress, it’s not the dramatic skyrocketing of cells I was expecting. We’ve had the good fortune to get to know three other aplastic anemia families, and all of them engrafted at a much more rapid rate than Aaron. It’s difficult not to compare, especially when those are our only real life experiences to relate to.

But the doctors and nurses have seen dozens of bone marrow transplants, and none of them act at all concerned. In the words of Dr. Boyer: “He is building a strong graft.” I like the sound of that.

And, contrary to our limited sample size, Dr. Harris told us that aplastic anemia kids usually engraft slower than leukemia kids because their bone marrow was so damaged before the transplant, so it takes some time to set down a new foundation.

I think one of the misleading things has been that, prior to the transplant, we were told that engraftment typically happens between Day +14 and Day +21. No one told us that engrafting after that is also totally normal and fine and that we shouldn’t become alarmed if it didn’t happen by Day +21 (which, at this point, it’s looking like it won’t).

But then today I had a couple of really good conversations with our nurse (Dave, again), which helped relieve all of my anxiety and reassured me that everything is going exactly as it should.

When I got to the hospital this morning, he said, “Wow, Aaron is just doing awesome!”

And I replied, “Yes, but do you think his counts should be going up a little faster?”

Dave said, “Not at all! Don’t you remember I told you last week that with the allogenic kids [meaning they received their new stem cells from a donor, and not themselves], I like to see engraftment happen between Days +21 and +25?”

As soon as he said that, I remembered that he had indeed said that, but last week I had been too focused on early engraftment to pay any attention.

The reason why he likes to see that slower increase in cells is because it gives the body time to adjust and accept the new activity and lowers the chances of rejection.

And then, a little bit later, Dave came into our room, took the paper with Aaron’s most recent lab results, and said, “And let me show you something else.” He pointed to the neutrophil number on the sheet. “We tend to focus all of our attention on the neutrophils, but I like to look at the monocytes, too. They are the other disease-fighting white blood cell, and they are usually a precursor to engraftment.”

He took a pen and underlined the monocyte numbers. Sure enough, they were steadily rising: 34, 42, 38, 48. I could have hugged him! It was one more proof that Aaron is headed in the right direction, and he will get there in his own time.

There have been other clues that indicate that Those Who Know anticipate a discharge in the near future. For example, they dropped off a booklet (two, actually) about how to get ready to go home after a bone marrow transplant. Yesterday, they switched Aaron's anti-rejection drug from IV to oral, and he is taking almost all of his other meds by mouth also. (And speaking of his meds, they finished weaning him off of his last anti-nausea medication this weekend, so he is currently not taking anything for nausea, and he is feeling great.) And today, I practiced doing a dressing and clave change on Chester the mannequin, so hopefully I'll be ready to take care of Aaron's central line when we go home.

So that's the update. The news isn't dramatic, but it is there, and it is enough.

I'll leave you with one more happy development. On Thursday, I was scrolling back through some photos of the last month. I was amazed to see the physical transformation that has taken place in Aaron since he first arrived at the hospital. When he was admitted on September 10th, his gums were swollen and inflamed. His eyes looked droopy and tired. He was smiling, but he looked sick.

Today, his hair is gone, but there are other changes as well. His gums have receded to their normal size and color. His eyes are bright and happy. He is energetic and, by all appearances, quite healthy.

If these are the results we're getting, I'm willing to wait as long as needed for those counts to roll on in.