Watching and Waiting

 Today is Day +8! Hospital time is so disorienting. It's kind of like those early days when you first bring home a newborn. It feels like we've been here forever but also like time is flying by. There can be a Groundhog's Day-like quality to each hour, but then you blink and suddenly, it's bedtime again. But I think maybe those are good things? Really, it means that we're moving steadily along without any huge disruptions so far. We are VERY grateful for that!

Aaron's counts have been steadily declining this past week, as they should. It's led to some painful side effects most of which he's tolerating really well. The team of doctors and nurses have been really great at both preparing him for what's coming and also making sure he knows he doesn't have to suffer. Concentrating can be hard right now. Most days, he has enough energy to watch YouTube or listen to audio books, but this past Tuesday, he also had enough energy to finish a Lego set! We're hoping for more Lego days in the future.

Being Aaron, he has figured out that if he consistently expects to feel worse the next day, either he is prepared when it happens or pleasantly surprised when he feels better than expected. So far that's working out for him! But for the most part, I'd say he has been feeling better than expected. In fact, his doctors have said he's "exceeding expectations" so far, which you know is music to our ears. 

He totally filled his BMT sticker chart this week! 💪

While his numbers aren't bottomed out yet, there is a likelihood that he'll need a transfusion of platelets over the weekend to make sure he stays safe while we wait for his cells to grow. He had a few of those transfusions done while we were at Nemours when he had pneumonia, so he's familiar with that. Otherwise, we're just riding it out and waiting for the numbers to start climbing again.

The hope is for engraftment to happen somewhere between Day 10 and Day 14, although that's just an average so it's hard to know when it will happen for Aaron. Rising ANC counts will be the first sign that they will look for and we're not quite there yet. But hopefully soon!

We are really in the thick of it now - watching and waiting and hoping. Here are a few ways you can specifically pray in the coming days:

• Engraftment! We are so ready to see some signs that Jacob's cells are growing and thriving in Aaron. We are praying for his numbers would begin to climb back up soon so his body can begin to heal. If it's needed, that he would have a safe and successful platelet transfusion.
• Continued mild side effects from his counts dropping. We're so grateful that most have been mild for him so far and we're praying that continues through the next few days as his numbers dip further. 
• No complications like rejection or illness! There's just so much happening in his body right now and so many different ways these transplants play out. 

Thank you for checking in with us here at the hospital and also with the family at home. Libby had her last day of preschool today, which is a little heartbreaking. She's our last preschooler as she heads to Kindergarten in the fall. Sam has had a busy week with a field trip and two band concerts, including a solo in Jazz Band. Sam and Jacob have about two more weeks of school before they are done for summer, whew! So many people have rallied around to get the kids everywhere they need to be. It's been so helpful - we couldn't do this without you!