Ta-ta, Tacro!

Some of you have maybe been wondering how Aaron is doing in the midst of this global pandemic. I'm so sorry I haven't kept up with the updates, but it was because there really wasn't anything to update about. In Aaron's case, no news is good news, and there hasn't been any new news for a really long time.

I suspected this would be the case way back in September when we first made up a treatment plan for Aaron. You might remember that when I outlined the steps, there was a big gaping hole of nothing for about six months. I labeled this "the isolation phase," and in my post where I talked about it, I said it looked like it would be "the longest and most boring phase of the entire process."

I said this before we even started, not knowing that in just a few short months, a worldwide quarantine would take our definition of "boring" to a whole new level.

The thing about the whole world being bored right along with you is that you no longer feel like you're the odd one out. For the first few weeks of quarantine, Aaron was practically giddy as he watched everyone else isolate themselves and wear masks just like he'd been doing for the previous six months.

The sad thing about the timing of all of this is that the BMT team started weaning Aaron off of tacro (the immunosuppressive drug) the same weekend as the country went under lockdown. The three-month weaning process is generally seen as a time when you can slowly lift restrictions and ease back into normal life.

But the exact opposite happened for us. We tightened everything up even more than we already had. We didn't see family, the other kids stopped going to school, Mike began working from home, we wiped down every package that was delivered and quarantined the mail, we had most of our food delivered, we stopped getting takeout, and Mike went through a whole germ-avoiding process on the rare occasions when he ventured out to the grocery store.

We anticipated this summer to be one of rejuvenation and excitement as we resumed some of our favorite activities and went on new adventures. Although that is not shaping up to be the case, we are still seriously celebrating because Aaron is doing so well. We are watching his body make a full and complete recovery, and it is just miraculous.

Once we began weaning him off of the tacro, we finally began to see some changes, good changes, in his blood counts. For months, they had been fairly stationary (platelets in the 200's (normal), hemoglobin around 11 (just below normal) and white blood cells between 1000 and 2000 (low)). But as the immunosuppressive drug has slowly left his system, those counts have been moving up again. At his last appointment two weeks ago,  his hemoglobin was 12.5 (normal) and his white blood cells were at 3000 (still low but getting close to normal).

He has continued to show no signs of GVHD. His latest chimerism looked good (the percentage of Maxwell's T-cells had gone back up). He has an abundance of energy (he's been running with me in the mornings). And his hair came back in extremely thick and wavy. He was holding onto it rather possessively, but he finally let Mike give him more than just a trim a week ago.

Today was extra-special because Aaron took his very last dose of tacro. We have been looking forward to this day for nine months. And I'm proud to say that in those nine months, we missed a total of only one dose. That felt pretty good to me, especially since there were a few months where we were giving it to him three times a day.

We celebrated at the stroke of 9:00am (Tacro Time) with cherry pie and vanilla ice cream. We'd been talking up the Tacro Party since the evening before, and after everyone finished eating their pie, they excitedly asked, "Now what? What's next for the party??" We admitted that eating celebratory pie was pretty much the only thing on the agenda, and they grumbled to themselves as they walked away, "I expected there to be a little more to this party . . . " But come on, what did they expect? We can't go anywhere or have anyone over, so our options were rather limited.

So now that Aaron is done with tacro, you might be wondering what the plan is going forward. His doctors are now looking towards September, which will be his one-year transplant anniversary. At that point they will take him off of his last two medications (a prophylactic antibiotic and antiviral), do some of his baseline tests again (lungs, heart, etc.), and hand him over to a hematologist for future follow-ups.

As we were wrapping up Aaron's appointment a couple of weeks ago, Dr. Harris said, "Come September, Aaron, you can do whatever you want!"

I'm not exactly sure what that means in light of the global health crisis we're all facing, but it was a nice sentiment anyway, and I liked the sound of it.