Thursday, November 11 - Day +29

After I learned of Tuesday's loss, I couldn't bring myself to write an update that night that included discussion about our plans to go home. It's not right that a mother had to leave here knowing her son would never be home again. Whenever I hear of another child who loses the fight against this evil thing called cancer, it sends me into a tailspin. I feel this sense of sick dread. It's heartbreaking and depressing. It's my biggest fear. And yet, despite the fact that the world has come crashing down around someone, life keeps moving for the rest of us. It just isn't fair.

Over the last week Collin has been more playful and verbal than he was as he recovered from the VOD. His sense of humor has returned, as has his ability to throw big dramatic temper tantrums. But (most days...I'm only human) even the behaviors that may have gotten under my skin at one time now make me smile, because I'm just thankful that he is still here, and able to do more than just lay in a bed. 

Collin's labs have been exactly where they should be. His white blood cell count is increasing on it's own, which means the stem cells have engrafted and are doing their job. His blood clotting factors have returned to normal, as have his liver functions. He has been tolerating the tube feeds a little better the last few days. Instead of rushing to increase the tube feeds to a volume that would sustain him and allow us to stop the IV nutrition prior to discharge, it was decided he can go home on some IV nutrition and we can continue to increase the tube feeding a little slower so he won't throw up as much at home. Twelve hours of IV nutrition and tube feeding around the clock will make some things more challenging, but it's time to get Collin back home into his own environment so he can keep moving forward. Although he will be ready for discharge by tomorrow afternoon, logistically it will be easier for us to go home Saturday morning, so that's the plan. 

It's hard to believe this is our last scheduled admission; in April it seemed like this was an impossible dream, and that it would take forever to get to this point (if we would even reach it at all), but looking back, the last seven months have really gone by quickly. And in that time, I have met so many amazing people who have become like extended family-the doctors, nurses, therapists, aides, social workers, unit secretaries, and housekeepers who have been beside us in our darkest days, and have shared our joy at each improvement, no matter how small. I know they get payed to do the jobs they do, but no amount of money can make anyone genuinely care like they do. Thank you hardly seems like enough, but I don't know what else to say. We have been so blessed throughout this journey.