Good News!

Today is Day +21 and we are happy to share progress! On my last post on Monday, Aaron's ANC was 250. On Tuesday, it jumped to 420, Wednesday to 570, and today it is 710 👏 we're so excited to see it! His WBC is climbing steadily alongside the ANC, which is great. His hemoglobin (RBC) and platelets have been more unstable, which is to be expected at this point while we wait for those cells to kick in as well.

He ended up needing some platelets on Monday evening after another nose bleed started up. Thankfully that's kept him up above the threshold for a few days, but he needed another transfusion again today after dropping. He will likely need another red blood cell transfusion sometime in the next few days as well. That will hopefully give him another boost of energy.

Lego Building on Tues, 6/6

The accompanying nausea seems to be the biggest hurdle for Aaron right now. He spends a lot of the day feeling nauseous or sleeping because the anti-nausea meds are knocking him out. So we're hoping some of that will start to subside in the next few days. 

He just had his feeding tube replaced this afternoon - what a champ! It's not the most pleasant, but it's the fastest path towards getting enough nutrition to be able to go home. We're really hoping that is helpful and doesn't cause more nosebleeds or discomfort again.

The team is still saying that he could be discharged as early as the end of next week. Whether we'll be discharged to home or discharged to a short term stay closer to the hospital is still to be determined. There is some criteria that he would have to meet in order to go all the way home, given the distance from our house to the city. We may end up spending a few weeks at the CHOP Ronald McDonald House to be closer to the hospital while he still needs transfusions and more regular care. We're still learning about all the care that will come post-hospital...it's a lot to take in.

Meanwhile, everyone wrapped up school today! Despite everything that we have had going on this year, and especially the past month, the kids all had a fantastic school year. I'm so proud of them for thriving amidst hard circumstances.

Last Day of School! 

Lots of end of year awards around here! Aaron won the Scholarship Award at USP during an online Zoom awards ceremony. Sam won the Learn Award at Marsh Creek. Jacob won Student of the Month at East Ward. They've all gone above and beyond to do their best work. Good job, guys!

Libby has spent the past two weeks on play dates, running errands with Didi, getting her nails done, at the park in the splash pad, picking strawberries with friends, and generally living her best life. So we all know who the real winner is here...

Thank you again for everyone who has been helping us stay afloat! Picking kids up, play dates, meals, rides to baseball, thoughtful messages, timely prayers and encouragement. There's no way we could be managing all of this without you! 

Here are the things we're praying for this week:

• Nutrition and Feeding: we are hopeful that Aaron will be able to tolerate the feeding tube and keep it in for as long as it's necessary. He needs to be able to maintain his nutrition and hydration without the IV in order to go home, so we're working on that! Hopefully, as his nausea subsides, he will be interested in food again. Right now, his taste buds are pretty much gone (another chemo casualty) so it's really hard to eat. Nachos tasted good for the first time last night, but it's definitely been slooooow to reintroduce food. We are praying that his nausea would decrease and his appetite would increase!
• Engraftment: we are SO grateful for the current rising counts and we are hopeful that they will continue that way. Next step is for his platelets and hemoglobin to stabilize, again another step towards being able to go home. 
• Along with that, they are planning to test his DHR function on Monday, which will give us a little window into whether Jacob's cells are taking over. We're praying for encouraging results from that test!
• No Complications: so far, Aaron has not had any complications apart from the expected things like nausea, low energy, etc. We do not take that for granted! This is the window where we would begin to see any rejection symptoms, but unfortunately, that risk can last for months or even years. So we'll keep praying that his body accepts the cells as his own without any complication.
• We are also praying that he would continue to be protected from infections like bacteria, viruses or fungi. Here now in the hospital and once we get home. The risk obviously increases significantly once we're home, but I'm trying not to feel anxious about that before we get there.
• Patience and Encouragement: we're all feeling a little weary. We're tired of being separated. Aaron is tired of feeling poorly. And while we're thrilled about the progress he's made, it's daunting to think that we still have a very long road ahead. We have good days and bad days, good moments and hard ones. Please continue to pray - for all of us - that we would have the strength to face what each day holds and that we would be patient to take it one day at a time.