We're Home!

 We're home! 

Well, we've been here since Saturday. It's been wonderful and overwhelming and normal and exhausting...all at the same time 😊

Check Out Aaron's Homecoming Video

Despite a few last minute hiccups, Aaron was able to be discharged on Saturday and we came straight home to our house. We are SO glad to all be back together again. In some ways, it's like we never left and in other ways, it's like relearning our new normal. 

There's nothing like your own bed!

Aaron has already had his first return visit to CHOP's outpatient clinic. As I mentioned, he'll be going there twice a week until his platelets start to stabilize. At his appointment yesterday we were encouraged by continued upward growth in his counts across the board! He still needed a platelet transfusion while we were there to carry us through to his next appointment on Friday, but overall, it was all really good news.

Specifically, they got his first engraftment study back and it showed that the cells he is growing are 99% from Jacob! They said that's really fantastic at this point. It's only one line of new cells (the basic blood cells that we're tracking) and we still are waiting for his B-Cells and T-cells to start to populate. Those are slower growing - they are the bulk of our immune system really - and we'll continue to get these engraftment studies done once a month to follow along with those guys as well. But for now, it's really encouraging to know that the transplant has taken hold. We're so grateful!

They are also really pleased with his progress on eating at home. We've cut down on his regular feeds to try to encourage him to eat more by mouth. We're hopeful that means he's on track to get his feeding tube removed sooner rather than later. It can be hard work for him to push himself to eat when he's still not very hungry and fighting off regular nausea, but he's trying! 

We'll go back on Friday for more labs and possibly more platelets. It's a long day for Aaron when we go - waking up early in the morning is hard on him with so little energy, but we're grateful to be close enough to go back and forth. They told us that we're one of their only patients recently discharged who lives locally. Just another reminder of how grateful we are to live so close to amazing hospitals!

At home, the kids are in full-on summer mode so it's been a bit of an adjustment for all of us. Getting back into the swing with swim lessons, doctors appointments, dentist appointments, online classes, birthday parties, the works! I'm hoping after the next week that our schedule will slow down a bit so we can enjoy some lazy summer days. But I'm also glad if the summer speeds by uneventfully so we can get to the part where Aaron is feeling good again!

Thank you SO much to everyone who has reached out - over the past week and the past few months with encouragement. It has been such a source of joy and support to us to hear from you and we are so grateful to have so many people following along with us. We will keep updating here even now that we're home as we continue to walk the road towards a full recovery.

Please continue to pray:

  • For rising counts! We've love to see his hemoglobin and platelets start to multiply on their own to get him back up into a comfortable range. Both would give him more energy!
  • For continued good health. Now that we're home, we're doing our best to keep the germs out of the house and away from Aaron. Not an easy feat but we're taking as many precautions as we can, while still letting the other kids enjoy their summer. Please pray that we would all stay healthy and germ-free, but especially Aaron.
  • For progress on his appetite and eating. We'd love to get the feeding tube removed soon! It would be one less thing to manage and would make Aaron significantly more comfortable.
  • For his immune system to keep growing and getting stronger! We're so grateful that he hasn't had any signs of rejection yet and we're hoping it stays that way. We're also hoping to see some signs of the T-cells and B-cells growing during his engraftment study next month.
  • For an uneventful road to recovery this summer. Nice and boring and slow is just about the speed we'd prefer right now.

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