Milestones

A lot has happened recently, so it's time for an update.  Thanks again to all of you for your support during this process.  Your thoughts, gestures, notes, gifts and calls have been overwhelming and has done wonders to keep our spirits high. 

Cole continues to progress very nicely.  So well, in fact, that he was discharged to outpatient care on Thursday at day +22 post transplant.  It was an emotional departure.  The nurses and staff gathered to sing a song and give him a parting gift. Janet and I welled up as we watched him walk down the hall with his hands held over his head in victory.  I could almost see his smile through his mask.  He's nearly bald, a little puffy and weak from lack of walking, but he's stopped getting sick every morning and he couldn't be happier to be getting out of his room. 

Cole is now in an apartment with us across from the hospital where he will likely stay for the next several months until we (hopefully) can go back to Connecticut.  Until then, as long as he stays healthy, we will give him his medications here, keep him in isolation and visit the hospital several times each week for check ups and infusions.  Currently, his engraftment is at 100%, which means Ryan's bone marrow has fully taken over and is doing its job.

I know he's my son, but I am truly amazed at his strength and singular focus on getting well.  Never complaining, always focused on doing what it takes to get to the next step in his recovery.  It's a lesson that I won't soon forget. 

It's difficult to celebrate, as we know (and have seen), things turn quickly.  But we celebrate milestones such as this. Lurking in the back of our mind is what will happen the next time Cole gets sick. Will his body pass that test as well?  Will we ever have a level of comfort that he will be fully recovered from HLH?  Will we ever stop washing everything with bleach? 

Tomorrow is Mother's Day, so I flew the two older kids out to Cincinnati to celebrate with Janet.  It's a great gift for all of us for a holiday with special meaning this year.