An Overdue Update

 Sorry for this overdue update! Life has been moving at a crazy pace since we got home. All good things but it's been a whirlwind.

Aaron has been going back to CHOP to the outpatient clinic twice a week, which makes for some loooong days with the drive there and back. He's been getting regular labs drawn and until today he had always needed transfusions on each of those clinic days as well. His platelets had not been rebounding the way that we would have hoped. Last Tuesday, they ran some extra labs after he received a platelet transfusion and found that his levels hadn't risen at all after the transfusion which was concerning. But then when we returned last Friday, his levels had risen a bit on their own despite not bumping up at all from the transfusion! Then when we went today, they were even higher (up to a 29!) which they feel must be his body working hard to make those platelets now. It's very encouraging. So much so that we don't have to go back later this week - we can wait a full week until his next clinic visit!

He's also been having some unfortunate side effects from his medicines so the doctors decided to take him off of one of his anti-rejection meds to see if that helps alleviate the side effects and helps to boost his bone marrow production. It's a little nerve-wracking since he needs those anti-rejection meds to prevent GVHD but he still has one other med on board to that effect so they feel like it's a good trade to reduce some of his other symptoms.

In some good news, he was able to get his feeding tube removed over a week ago! He's doing a great job eating enough calories to sustain himself. Getting in enough hydration has proved a little tricker so he's working on that. It's not easy, but we'll keep trying. Last week he was pretty low energy all week, but he seems to have picked up his energy levels a bit since they took off the one med. We're hoping that his energy levels will continue to increase as he begins to build new blood and they work out the best meds for his body.

This Friday is Day 50! At the very outset of the transplant process, they told us that Day 100 is a big milestone. Generally, kids who are on track and healthy at Day 100 have an excellent long term outlook. His restrictions won't totally disappear, but he will have more flexibility and freedom at that point. We will take every milestone we can get and plan to celebrate being halfway there on Friday!

Thankfully everyone here at home has been feeling healthy. We don't see much of Aaron as we're trying to still keep him fairly isolated in these early days, but it's still such a joy to be all under one roof. We have a busy week this week - 4th of July plus more birthdays! Isaac and Libby's birthday is July 5th so we've got holiday celebrations, baseball games, fireworks, and a birthday party to get ready for. We're hoping that Aaron will be able to join us for some of the festivities. 

It's a weird season - kind of an in between place. Normal life is flowing all around us, but it's not really normal. It's easy to think that we're just biding time until things are steady again, but there's a lot happening behind the scenes as we try to work out what's best for Aaron and best for the kids at the same time. We're trying to find the happy medium of keeping Aaron safe and still letting the kids live their lives. Please continue to pray for us as we walk that out!

We're so grateful for all of you who have reached out since we've been home with encouragement and prayers. We've felt so supported through this whole season and we really couldn't have done it without all of you. We will do our best to continue to keep you updated!

Please continue to pray:

  • For Aaron's blood count and specifically platelets to continue to increase. We are hopeful that the signs they are seeing point towards improvement and once those counts steady out, we can begin to consider removing his central line.
  • For Aaron's transplanted cells to continue to thrive. They will likely do another engraftment study soon and we're anxious to see a continuation of predominantly Jacob's cells. We'd also love to see some TCells and BCells beginning to grow as those are the main virus-fighting cells. We're encouraged by no current signs of rejection or GVHD but we know that he's not out of the woods for those symptoms yet.
  • For his medications to continue to work and his side effects to alleviate. We would love to see Aaron's energy levels increase so he can begin to participate in more at home and be able to eat/drink more. 
  • For continued good health at home for everyone! We're trying to find the line between precaution and participation for the other kids so that they can still enjoy their summer. Keeping everyone healthy and virus-free is a HUGE factor for them. Everyone will be at outdoor day camps next week so we're hoping that they can stay germ free there as well. 

Comments

Post a Comment

Popular posts from this blog

One Year!!

 It's hard to believe that it's been a full year since the transplant!  We haven't had any updates since September, partially because it's just been 9 months of slow and steady progress. We're so thankful that Aaron didn't experience any major setbacks this past year. We visited the BMT Clinic at CHOP once a month, as slowly his counts rose and his meds decreased.  We've learned that slow and steady is the name of the game with bone marrow transplants. Aaron's platelets were slow to recover, only recently getting back into the totally normal range. At this point, his basic metabolic panel looks like nothing ever happened! How cool. On a deeper level, we recently had his engraftment studies completed, and it seems like his blood is still 99% comprised of Jacob's donor cells. That's a huge praise - more than we could have hoped for! It means, ultimately, the transplant was a success. We're still waiting for his TCell production to increase a bi...
Read more

Happy Birthday, Aaron!

Image
I shared this post over on Instagram too but I wanted to make sure we mark the milestone in this journey as well! It’s been a busy few days for this guy! Celebrating 100 days post transplant, starting his first year of high school, and turning 15 - all in one week. Whew! Especially now when each one of those milestones is a gift we do not take for granted.   And all that came after a super busy year! We crammed a lot into the first half - starting a new school last fall (yay USP!), lots of family trips (Disney World!), and his Make A Wish trip (meeting Dude Perfect!) All of that was packed in before we hunkered down for his bone marrow transplant this past spring. I cannot overstate how much better it is to be on this side of the past year. Suffice to say, fourteen has been a monumental year for Aaron. He has faced his challenges with a steady determination that has been remarkable to behold. From the moment we knew the transplant was the next step, he fixed his eyes on t...
Read more

How Did We Get Here? (A Deep Dive)

Image
I ask myself that question a lot actually...it's been a whirlwind, about 21 months since the whole journey began, and yet it feels hard to remember life before all of this. So a (not-so) quick recap... The Hospital Stay In early August 2021, we took Aaron to the local ER after several days of unexplained fever. All the kids had a summer cold, but Aaron couldn't seem to shake it. The ER took a few images and diagnosed him with walking pneumonia. We got a prescription for an antibiotic and headed home. His very first IV  After several days of the antibiotic and no improvement, we took Aaron back to the ER. They admitted him and began IV antibiotics. During the admission process, our nurse hung a sign in Aaron's room that said something like most pneumonia-related admissions generally last for 72 hours. I stared at the sign and thought "3 days?? My baby is going to be in here for 3 days?" It seemed unimaginable at the time.  Day 3...of 100 Little did we know that A...
Read more