An End and a Beginning

I have two noteworthy items to share this week:

The first is that Aaron had his central line removed on Friday! This is a big milestone. It means that he is no longer dependent on transfusions, IV medications, or anything else that needs to go through a line.

We remember the days when he was getting 2-3 platelet transfusions every week. We remember when he required two "brains" with four pumps each on his IV pole while he was in the hospital, just to handle all of the medication he needed. We remember the six weeks at home when he was getting foscarnate, magnesium, and micafungin through his central line--totaling 8-10 hours of infusions every day. We remember flushing it every morning and night since it was placed in March. 

Saying goodbye to this line is a giant step in the right direction. One by one, Aaron is cutting the strings that have kept him tethered for so long. At this point, he takes several oral medications twice a day, goes into the clinic once a week, stays away from large groups of people, and that's pretty much it. 

While he was unconscious getting his line removed, they also performed a bone marrow biopsy to check on his chimerism and cellularity. We'll have those results in the next week or so. I know there's nothing I can do to influence them one way or the other, but I still spend my time worrying. I can't help it. 

In the meantime, school is helping to distract all of us, although it comes with its own set of worries.

On Monday, Mike and I met with the school counselor and assistant principal to discuss Aaron's situation.

As much as we wanted Aaron to be able to go to school, we had decided that it would not be a good idea for at least the first quarter. However, our school district only offered one virtual option. If you chose not to attend in-person, you would be put in an online school with all of the other online students from various schools across the district. 

I did not feel good about this option. For one, it seemed like it would make for a difficult transition when the time came for Aaron to return to school (which we hope is sooner rather than later). For another, Aaron is currently enrolled in all GT classes at his school, but the online school did not offer any accelerated options. 

When I asked the counselor and assistant principal if we could keep Aaron enrolled and just have him access, complete, and turn in all of his assignments online, they said that such an arrangement would not be possible. The district was really trying to motivate people to attend school since students are more successful when they're in the classroom with their peers (don't I know it!). If schools were given too much flexibility, then there would be too many students opting out of in-person learning.

While I understood the reasoning behind this decision, I felt like Aaron was a unique case (. . . "but my child is special!!!"), not only because he had a serious medical condition that had nothing to do with Covid, but also because we were hoping his absence would be temporary. The tears were threatening to spill as I pled for a creative solution.

They were sympathetic to our situation (and so nice!), but they felt like their hands were tied. But then they decided to call in one of the other counselors to discuss the possibility of home hospital. This counselor was a miracle worker. She was seasoned and experienced and determined to find a good solution for Aaron. She changed the tone in the room, invigorated the other two, and opened our minds to other possibilities. We started brainstorming and making a list of options. By the end of the meeting, we had delegated assignments to each person. The counselor promised to touch base soon. I left feeling hopeful, even though we hadn't come to any specific resolutions.

A couple of days later, she called and told me that our original plan was going to work: keep Aaron enrolled in school with a medical absence for the quarter; work with each of his teachers individually to get his assignments each week; complete his work online. She had reached out to each of Aaron's teachers, and they were all onboard with the idea. I was overwhelmed with gratitude for a school that genuinely cares about not only the collective classroom but the individual student. 

We still have no idea how well our plan will work, but we're about to find out. School starts tomorrow!