Last week, we got clearance from the doctor to return home to Connecticut. We had mixed emotions about leaving the proximity and safety of the hospital. There's comfort that the doctors who know Cole and his disease are only 30 seconds away. It's surprising that there are no experts close to the NYC area - so we had to find a doctor willing to follow the protocol of our doctor's in Cincinnati. There's also a lot of concern given that Cole's engraftment numbers continue to fall. That means that Cole's bad marrow continues to take over Ryan's good marrow. If the doctor's can't reverse that course, we will have to start over. The doctor's are hoping to change medication and infuse Cole with more of Ryan's blood to stabilize engraftment and reverse it's course. We remain optimistic and hopeful.
After an overnight drive from Cincinnati, we were able to get Cole home early Saturday morning. Janet will stay with Cole in the pool house while I try to spread myself between work, the house, the older two kids and helping Janet and Cole. Thank God for family and friends who make this easier. And mostly, thanks for Janet who is an iron willed advocate, nurse and protector of her youngest cub. I couldn't imagine anyone trying to do this alone. We're all trying to define our new "Normal" and find our way.
For now, Cole can get outside occasionally with his mask, wave to the older kids and even hang out from a distance. It's been a great spirit lifter for him and all of us. Unfortunately, we have to take he and Ryan back Sunday for the next infusion in hopes of reversing the engraftment declines. It's the first of many return trips to Cincinnati, but it beats the alternative of not being home at all.
