I had hoped to never write another message on this app, but we all know that old saying…
About a month ago, I happened to look at Jack’s legs and notice they were COVERED in bruises. Obviously, this was concerning to me. So, we called our team at AFCH and they had me draw some labs. His platelet count (think clotting) had tanked since his last appointment. We re-drew the labs later that week and thankfully they had rebounded some. We drew again a week later and they were even better. Phew.
During this time, Jack’ surgery to remove his port had been scheduled…cancelled…rescheduled…cancelled again because of the low platelets….and rescheduled once again. Just when I thought everything was leveling out, we got a call from our Nurse Emily. She said that Dr Desantes wanted to cancel the surgery again and wanted to see Jack in clinic the following week. She said he didn’t want to take out the port, “if something was going on.” Super.
That brings us to today. I picked Jack up from school at 1:00, drew his labs, dropped them off at the hospital, then we headed to Madison to see Dr Desantes. (Sadly, our Dr Matty has taken a job at St Jude’s in Memphis and is no longer at AFCH, so he roots for us from the sidelines.)
On the way to Madison, my inbox chirped and I could see I had gotten the results of Jack’s labs. My heart sank. Not only were his platelets low again, but other lab values had inexplicably dropped as well. I knew it wasn’t great, but often I feel like I know only enough to be dangerous when it comes to this world.
Dr Desantes saw us in clinic with his usual kind and thoughtful demeanor. I could tell when he walked in the door, his eye went straight to the bruises covering Jack’s legs and he was concerned. I don’t think he wins many poker games.
After much discussion and examination, he decided it would be best to schedule Jack for a bone marrow biopsy, soon. He explained that there could be several things that could be going on, but the biopsy would give us a definitive answer.
So…here we go, down this all too familiar road again. The uncertainty, the fears, the sickness. I can feel it mounting in the pit of my stomach.
Friday, Jack will be put to sleep and have his bone marrow biopsy completed. We will likely not have results until next week to know what, if anything, we’re dealing with. Trying to stay positive is something that’s much easier said than done.
For now, I’ll hope and pray in my one hand…maybe we’ll get lucky and that hand will get filled first.