Ups and Down

 It's been a rollercoaster week. Thankfully, nothing has been quite as dramatic as this past Monday morning, but it's still been full of ups and downs. Both in how Aaron is feeling and how his counts are trending. 

A quick explanation on the counts...obviously, there's a lot more science to all of this, but the main numbers we're watching are:

  • White Blood Cells (WBC)
  • Hemoglobin (red blood cells)
  • Platelets
  • Neutrophils (Absolute Neutrophil Count - ANC)
The doctors expect to see WBC and ANC return more quickly than the other two as they get made by the bone marrow faster. Technically, engraftment is defined by 3 consecutive days of an ANC above 500 so that's our goal but we just want to see all those numbers return to normal as soon as possible. The chemotherapy was designed to knock all of those counts down almost to 0, with the hope that the influx of Jacob's cells at day 0 would be what regrows in its place. Aaron had started in the normal range for all of those numbers when we arrived (which isn't always true for some transplants, especially if they'd needed chemo treatments prior to the transplant or already have a blood disease) and it seemed to take a little longer than anticipated for his counts to fully drop, which could have accounted for why he felt so good for so long into the process.

But here we are...all his counts (predictably) as low as can be. Monday was a doozy. He ended up getting three separate platelet transfusions by the end of the day. On Tuesday morning (day +12), some counts had started to rise (yay!) but his hemoglobin had fallen pretty significantly - probably due to the loss of blood volume on Monday. He got a transfusion of red blood cells, but we were encouraged that he was holding onto the platelets from the day before and his WBC and ANC had both popped up above 0 for the first time in several days. Wednesday, his hemoglobin was back up (yay for blood donation!) and his platelets climbed a bit too. But both his ANC and WBC dropped back to 0. We were told this is normal, his body is revving up to make these cells, but they are getting used up just as fast as he can produce them. 

Then Thursday (day +14) we woke up to a platelet count of 3. Thankfully, they gave him a transfusion of platelets as soon as the results came in, and we were grateful that he didn't experience any bleeding like he did earlier in the week. But we were still a little discouraged. Where did all those platelets go from the day before? From what we can tell, that's somewhat of a mystery. It could be that his body is using them or it could be that they are getting trapped somewhere. It's another watch and wait kind of situation. But his hemoglobin held steady and his WBC inched back up again. Still no neutrophils.

Today, so far, things look good. We just got his counts in - his platelets are 13, so we're encouraged he held onto some from yesterday. He did get another transfusion early this morning to try to get that number over 20. But his hemoglobin held steady. And his WBC is up a smidge and his ANC is 40 👏 

The team said that they were hoping to see action towards engraftment around day 14, so I'm hopeful that's what is happening. He has a few other symptoms that would indicate it's possible so we're praying hard that we're seeing it in action. He has had more significant pain this week than before, but his meds seem to be helping him to tolerate it for the most part.

So we're riding the rollercoaster - trying to celebrate the ups and not be too discouraged by the downs. It's still a lot of waiting and watching and hoping. I know many of you are following along and waiting with us, so I hope this update is helpful!

  • For all his counts to continue to steadily rise! I honestly don't know what time frame we're supposed to expect these things to happen, but we're just happy to see incremental increases each day. 
  • For Aaron to regain some of his energy. He's been really too weak to get out of bed most days this week, which is discouraging. It would be great to see him up and moving, building Lego, and eating again. 
  • For continued protection against rejection, Graft vs Host disease, and other types of infection. Staying infection free with no WBC is key.
  • For his pain medication to continue to work. He's really uncomfortable without it, which could increase over the next few days as the cells are trying to heal all the damage done throughout his body. We're just hoping it can stay manageable.
  • For a decrease in his nausea. He feels nauseous off and on which is normal. But it discourages him from eating and sometimes the meds he gets for it knock him out. So we're praying that begins to decrease as his cells start to grow and heal his body.
  • For the kids at home. Last week of school is here! They are excited but it's also really busy. The separation is starting to wear on all of us. 

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