Life on the Struggle Bus

The good news is, we’re back home! We returned home Tues, the 11th, and have been settling back in since then. Physically, Bodie has recovered well, and his bloodwork last week showed a CMV viral count of “not detected!” Music to our ears, since, although his viral load had been going down, that was our first not detected. He has to get one or two more “not detected” before he can stop the weekly blood draws and come off the antiviral medication, so we’re praying that tomorrow’s blood draw also shows “not detected.”

His neutrophils (what help him fight off infections) have come up a bit. They’re still very depressed, but have at least finally come back above the critical 500 mark (to put it into perspective, “normal” is 1,800 – 8,000 cells/uL, Bodie’s team likes him to be around 1,000, he’s currently at 527, and anything below 500 is extremely risky). So we’re moving in the right direction, definitely – just have a ways to go still. And his liver labs are looking better, too! His white blood cell counts are still low, but the team is hoping that will start to trend better after he gets off the antiviral. It’s still a lot of chicken and the egg in terms of whether it’s the virus or the treatment that is/was driving his WBC and neutrophils down.

He is unfortunately struggling with canker sores, a common side effect of the new immunosuppressant he is on. It’s a side effect we were warned about and were prepared for. But despite the ointment and steroid rinse his team prescribed, the combination of canker sores and braces aren’t doing Bodie any favors. We’d really appreciate prayers that we can get the sores under control and healed quickly, because he’s in a lot of pain.

He was able to go back to school last week, which we (Dusk and I) are so grateful for. Bodie is less enthused. While he is excited to see his friends and get some normalcy back, the whole school thing is hard. I mean, really hard.

It’s hard to express how much the transplant and the ensuing months have fundamentally affected Bodie’s academic progress. Over the summer, when his peers were going to camps, swimming, relaxing and getting a much needed mental break, he was in the hospital and recovering from major surgery. In the Fall, he missed the first month of school because we were still up North. Despite my best efforts to help him stay on top of academics, he was behind when he started the school year and spent the entire semester playing catch up.

We were so excited to start this semester fresh, without having to constantly play catch up. And the first 2 weeks of school went great!

And then Bodie caught RSV. And missed 2 weeks of school.

And then went back to school for 3 weeks.

And then he caught CMV. And spent a week in the hospital.

And missed another 3 weeks of school.

So, this semester, he has already missed 5 of 11 weeks of school.

And it’s not getting better any time soon. Tomorrow, in addition to his blood draw in the morning, he has a 2 hour doctor’s appointment in the afternoon. Next week, he’ll have to leave school early on Tuesday for an appointment with the LPCH Infectious Diseases team and will have to come in late on Friday after an appointment with Rady’s Hepatology team. We schedule appointments outside of school hours when we can, but when it comes to specialists, it’s a lot of “thank you sir, may I have another” to whatever time they deign to fit you into their schedule.

His teachers are really nice. They are quick to provide accommodations when they can. They all care so much about Bodie.

But, at the end of the day, it’s very overwhelming.

If you ask Bodie, he’ll tell you most of his days are spent like this.

But if you ask Dusk and I, we’ll tell you it’s more like this.

Yes, it is absolutely as melodramatic as it looks.

Bodie is easily overwhelmed. And there’s a lot to be overwhelmed by. And his school is a classically inspired charter school, and very academically rigorous. Freshman year is hard enough. And it’s extra hard for him because of all of this.

Combine that with Amy struggling to get caught up on work she missed when we were up north.

And it just adds up to a lot of time spent on the struggle bus.

We’re all pretty tired of the same conversation ad naseum in our household:

Amy or Dusk: BODIE! Focus!!! Sit down and do your homework! You are so behind, and are just going to get more behind!

Bodie: But why??? It is SO HARD to get caught up! And then what happens? Stanford will call me again and tell me they want me back in the hospital, and then I start all over again!!! Why do I bother doing this?

The thing is, he’s not wrong. All of you parents of teenagers who argue about homework and feel like it’s just so hard. You get it. Now try adding in the stressors we’ve had health wise, and the added guilt of everything your kid has been through just to be alive. And some days you just want to throw up your hands and say “you’re right. You missed out on your summer. This year has been so hard. Math doesn’t matter. Biology really doesn’t matter. And I’m tired and just really need a vacation. Not like a trip where I get the flu so it really isn’t a vacation. And definitely not a hospital stay. Like, a real vacation. Because I am just so freaking tired right now.”

But then we realize that if we take that approach, the kid will never do an ounce of schoolwork again and end up repeating 9th grade.

It’ll totally end up like Groundhog Day.

And so the vicious cycle begins again.

So, like I said, we’re on the struggle bus over here.

Which I suppose is a good place to be. Because, in some weird way of looking at things, it means Bodie is doing well. Physically, he’s doing so well that we can focus on the other stuff. Like doing the dishes, and cleaning up after himself, and math and biology.

But, sometimes (ok, a lot of the time), when you’re on the struggle bus and it’s careening all over the place, it’s hard to be grateful for it. But we’re working on it.

So, this is all to say – THANK YOU for your continued prayers for Bodie! Your prayers got him back home again! Now please pray we can keep him home and life can settle into a more normal routine for us! And for those darn canker sores to heal!