The first time we knew there was anything wrong, we were at a Scout meeting. His nose started bleeding during the Pinewood Derby races. It seemed to go on forever and nothing we did made it stop. His den leader and I were both watching the clock. At forty minutes we started to organize a drive to the emergency room. Bug was so disappointed, he had to miss his race. It was the first, albeit minor, disappointment he would face over the next year.
We didn’t have to go to the ER that night. His nosebleed stopped before we made it to the car. It spurred a trip to his pediatrician that left us questioning so many pieces of his childhood. The appointment seemed like it had gone so well, they couldn’t find anything wrong with him but they drew blood for labs. We didn’t expect to receive a phone call a few hours later to have more blood drawn and labs run again.
Thirty-eight thousand. It didn’t seems like such a small number when they gave it to us. His platelets, the part of blood that allows clotting to occur were not at the levels they should be. They gave us a tentative diagnosis of Idiopathic Thombocytopenia Purpurea, scheduled us to go to Motts Children’s Hospital in Ann Arbor, and gave us a schedule of blood draws. Those first few weeks Bug was having blood drawn every other day.
As parents, this was terrifying. I spent hours online looking up information, trying to understand. It only brought more questions.
- How long had this been going on?
- How had we missed something with the potential of being so serious?
I felt like the worst mother in history. I felt like I should have known something was wrong.
The doctors at Mott made us {me} feel a little bit better. They assured us that ITP is common among children and is usually related to the immune response to a viral infection. We were lucky. We caught it before anything serious happened. They asked what seemed like a million questions that only fueled my own questions. I couldn’t help but question all of the little bruises he always seemed to have.
Bug got his first big disappointment that first day at Mott. Until his platelet levels reached a safe level {above 100,000}, no contact sports. No wrestling, no football, and no hockey; all of the sports he wanted to play. The good news was that we were told that this typically doesn’t last more than six months.
We’re now a year into our adventure. We’ve watched his platelet levels rise and fall. We’ve been lucky, we’ve never had a truly serious emergency come from it. I still worry and wonder if we did something wrong to lead us to this point. Bug has shown a great resilliance despite the regular blood draws. We’ve learned to be more careful. It’s an adventure.
