Day +85

At day +85, Cole remains in relative isolation.  By day, we stay in the apartment trying to entertain him and at night, he's able to walk the halls wearing a mask and hat.  He's even been riding his bike occasionally through the halls.  He's feeling well and has enough energy to want to wrestle constantly.  Being off steroids, his appetite has diminished and the dark "steroid hair" has started to thin from his head and face.  He's becoming less self conscious of his appearance and more open to speaking to people on Facetime.

His engraftment numbers continue to drop, which is not great news.  It means that Ryan's marrow is now being overtaken by Cole's.  The doctor doesn't seem too concerned, since they see this occasionally with match siblings.  But we have to keep an eye out for graft failure, which would mean we'd likely have to start over.  I've come back home to take Ryan to Cincinnati to do another infusion in an attempt to get Cole's engraftment to stabilize and hopefully get higher.  It shouldn't be a painful process for either of them, so we're happy and hopeful.    

After several months in Cincinnati, the process is taking its toll on everyone, a fact that is not lost on Cole.  Occasionally, he gets sad and starts to think it's his fault.  We often forget that Cole hears everything we say.  And, more importantly, he understands everything we say.  On rare occasions, Cole has been frustrated that he isn't able to enjoy the Summer like everyone else and that he can't see his friends and family.  We are also beginning to understand the impact on our older kids, although they insist they're fine.  We look forward to being home together as a family soon.

We remain incredibly thankful and count our blessings that it could be so much worse.  A fact that becomes real as we see others go through this process.  Aside from fleeing moments of sadness, Cole remains overwhelmingly positive and motivated.  He remains an inspiration to us.  

Cole has grown considerably in this process.  Certainly physically, but more importantly, he has matured emotionally and doesn't want to be treated special or like a baby.  He's learning to read, tell time, do math and swear like a sailor from watching so many movies.  We have a lot of bad habits to break when we get home...  He'll likely spend this school year at home, then head to first grade next fall.   HLH and the bone marrow process has taken many things from us, but it has also given us perspective and brought us closer.

It remains largely a waiting game over the next few weeks.  From there, we hope to start discussing getting everyone back under one roof.  We're not certain if or when that will happen, but we remain optimistic for what lies ahead.  Thank you all for your continued love and support.