Day +40

We lived vicariously through others this Memorial Day weekend.  We loved seeing pictures and reading about friends and family enjoying the outdoors.  Cole, Janet and I were able to enjoy our own indoor BBQ (trying not to set off the fire alarm) and make the most of the long weekend inside our temporary apartment playing games and watching movies.  The entire weekend, all I could do was give thanks that we were not in the hospital and that Cole has remained healthy.  My mind and heart remain with those families who are not as fortunate.  Now day +40 post transplant, I'm amazed how fast it's going and that we're almost half way to the magical day +100.

We also remain very aware how quickly it could all change.  We can't get too far ahead of ourselves and must remain diligent in our cleaning and daily medication routines.  It's easy to get distracted and want to take shortcuts, but a long road still lies ahead. 

90% of all children released from the hospital are re-admitted.  Cole remains focused on not being one of them.  He takes the stairs when going to the hospital, washes his hands constantly, reminds us to do the same, and takes his medicine as directed. 

The doctors are talking about reducing his steroids as well as some of his other medications.  Already, we have been able to take him off some of his mouth care medications.  Cole did a happy dance as we threw away these meds since they made him gag (even with grape flavored syrup) three times every day.

Last weekend, I was able to go home to spend some time with the two older kids.  I opened the pool, watched them play soccer and took them to the Yankee's game.  Thanks to a good friend, we ran into Mark Sanchez in the Legends Suite before the game.  Mark was gracious enough to pose for a picture and the kids couldn't have been happier.  It was also bat day, which rounded out a weekend that I will never forget.

My in-laws were able to get a slight rest and go home to Boston for the night.  It's a whirlwind being home jumping back in to schedules and getting the housework done, but it was great to see the kids.  Janet's sister came up to Cincinnati for a few days while I was home.  She was fresh meat for Cole to punch and play with.

On a side note, Cole's doctor is fascinated by his hair.  She says that she believes shimmery hair is one of the indicators of HLH.  Anyone who has met Cole, knows that his hair is the definition of shimmery.  Apparently Cole's hair has a unique make up - with alternating shimmery follicles and normal ones.  Even his remaining wispy hairs are shimmery.

The medicine continues to change Cole's body - from behind, he looks like a 90 year old man - pudgy and bald.  From the front - he looks like a caveman.  The steroids have created a dark uni brow, puffy cheeks and a fuzzy beard.  But his smile remains large, his attitude is great and he remains focused.

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.