It's easy to start thinking about day 100 when you're half way there. For each bone marrow recipient, day 100 is an enigma. Some patients are still in the hospital with no path for getting home. Others will never make it to day 100. That was the harsh reality last week when we learned that one of the children being treated for HLH here in Cincinnati lost their battle with the disease. My heart aches for their family. I can't imagine their pain or what lies ahead for them as they begin to heal.
For some, day 100 is a pivotal landmark. It's when the doctors begin testing the quality of the marrow production to determine the next steps.
While Day 100 is only 48 days away, we have to stay focused on the present because a momentary lapse in judgment could have serious consequences. It's a testament to my wife Janet that Cole remains out of the hospital. She keeps us focused. She's a vigilant cleaner, a cheerleader, a rock, a spirit lifter, a punching bag, a friend, a nurse, a jester, a teacher, a chef and a pillow. She has taught Cole (and me) what has to be done to keep him healthy. She keeps the doctors on their toes and is an advocate for Cole's wellness. Some day, Cole will begin to appreciate Janet's contributions to his wellness, but I'm not sure he'll ever fully understand it.
For today, Cole remains on a good path. While he is increasingly self conscious about his appearance and is incredibly home sick, his spirits are high. He remains virus and infection free. He remains focused on doing the right things to get home. His white blood cell count and engraftment numbers have been trending down a little, which is cause for concern if it continues. But today, day +52, we remain focused and optimistic.
