In the Thick of It Now

 When I posted on Friday, we were really cruising. Aaron was feeling mostly good, higher energy than expected and handling all his symptoms like a champ. By late Thursday afternoon, we noticed that his hair was falling out from the chemo, so Isaac came in on Friday to shave his head. 

He was pretty unfazed by it.

I was probably more upset than he was...he has such beautiful thick hair 😥

Lookin' good!

However after his counts continued to drop steadily over the weekend, we had our first big complication late last night/early this morning.

As I mentioned in our last post, we knew based on the trend of Aaron's counts that we could expect a platelet transfusion sometime over the weekend. By Sunday morning, he was past the threshold and ready for the transfusion. He got the platelets mid-day on Sunday and was feeling pretty good afterwards. Surprisingly, his hemoglobin has stayed fairly high throughout all the other numbers dropping, so he still had some energy and even attempted eating some dinner last night for the first time in almost a week.

While we were getting ready for bed, Aaron mentioned that he thought his nose was running. I looked over to see the start of a nosebleed. Not optimal with low platelets, but not altogether unexpected either. Aaron has had some experience with low platelets during his original hospital stay, so we were familiar with the process. While we got the initial nosebleed to stop, we unfortunately spent the rest of the night with on/off bleeding and discomfort.

By the time the nurse took his early morning labs around 4am, his platelets were REALLY low - about 7. For reference, 20 is the threshold for a transfusion and 150-400 is a normal count. Quick science lesson: platelets are the blood cells that help your blood to clot. When they are low you can get all sorts of uncontrolled bleeding like nose bleeds, but also internally as well. So they quickly gave him another transfusion of platelets to help build that back up. 

However, shortly after the second round of platelets, Aaron started coughing up a pretty significant amount of blood. Unavoidably, he also ended up coughing up his feeding tube which had to then be removed. Thankfully, our nurse was standing right next to him when the coughing/bleeding started and he was able to call in for back up right away. We had several nurses and a doctor at the bedside quickly. They decided to give him another transfusion of platelets immediately along with some quick acting meds to help stop the bleeding in his nose and throat. 

Needless to say, after a somewhat tumultuous night, this was a very exhausting morning. But once Aaron was cleaned up, he actually felt a bit better. Thankfully, the bleeding has not restarted since that incident around 8am and he's been able to relax a bit, get some pain meds, and take a nap. They will recheck his labs again in a little bit to see if he needs any more transfusions today to help him through the night into tomorrow.

While it's not ideal to have the feeding tube removed already, Aaron is choosing to see it as a blessing in disguise 😀 It has provided him some relief from the discomfort while his nose, mouth and throat are recovering. They won't try to replace the tube for several days while he has a low platelet count so we'll just have to count on IV nutrition and whatever Aaron is able to take by mouth in the meantime. He is planning to work hard on taking oral nutrition so he can avoid having it replaced. We'll see about that...

We're being heavily assured that all of this is really normal in the course of a bone marrow transplant. Many kids receive multiple platelet transfusions per day and lots have fairly intense nose bleeds during low platelet counts. There's just so much happening inside his body right now, it can be hard to pin down why something specifically is happening, so we're just trusting that we are still on the pathway towards healing. We knew this would be a hard road and we're really in the thick of it now.

While this is not the update I hoped to be posting, I'm grateful to be able to share and ask you to keep us in your thoughts and prayers as we head into the next few days. This morning was scary and has left us all feeling a little more apprehensive about what's still to come.

Ways to Pray:

• For Aaron's body to accept the platelet transfusions and keep his platelet count at a safe level to prevent further bleeding.
• For there to be no more continued bleeding issues, externally or internally, that would cause him to continue to lose platelets quickly.
• For pain relief/management. They are expecting his pain to increase pretty significantly over the next week as his body is trying to heal. He'll start on a morphine pain pump today and we're hoping that can take enough of the edge off to keep him comfortable.
• For no more nausea. It would be great if he could avoid vomiting again (mostly so he doesn't disrupt his clots, but also because he hates it a lot). 
• For a calm and quiet next few days as we wait for the cells to begin to grow. No more excitement would be just fine by us.
• For ENGRAFTMENT! The way forward is when his cell counts to begin to rise again. The sooner the better!
• For a good night's sleep and the strength to endure even if we don't get it. Everything feels harder when you're tired. Aaron is exhausted and hoping to sleep through the next few hard days. I also need sleep to support Aaron as best I can.
• For everyone at home. I was supposed to go home today to see the kids and watch Sam's end of season AllStars baseball game. Unfortunately, I missed all of that and probably won't be home again until Thursday. The kids have been doing great, but it just can wear on all of us to be separated for so long.