Saturday, September 20
Day +37
WBC 2.2

Same old, same old.  Again, that's a good thing.  Max continued his progress on the vent and has neared a point where extubation is possible.  We have been through this before, so it's like Yogi Berra says - deja vu all over again.  In fact, even when he was first born it 
was the second time they took him off the vent that he was really able to do well on his own.  Let's hope history repeats itself.  That said, Max may not come off today so we'll keep our fingers crossed.  In graft vs. host news, Dr. Billy Rubin says his liver is doing well, but otherwise we're not so sure.  Max's skin improved so much, but now we're thinking it looks red again.  And while he seems more comfortable overall, he is still making a lot of stools that are bloody red-brown and aren't too fun to look at.  

Otherwise, it's been nice having Granny for such a long time (and what a gift to her if  she's here to see Max get off the vent!) and yesterday Auntie Beth, Uncle Vince, and cousin Vinny drove north to be with us as well.  Grace really got a kick out of her cousin who is talking so much and had a blast motoring around the play rooms at Ronald  Mcdonald.  What are we going to do after Sunday?  It will be the last day we have family  help here for a while and we're going to miss it.  We know families out here are getting by without any help or spouses are getting by without each other, and we are so grateful for all of the sacrifices people are making to provide us with such great care.  Thank you. 

Thanks also to our friends overseas, Padraic & Tina, for finding a home for our updates until our webmistress Chris returns from the aftermath of Hurricane Isabel.  Don't forget to check on their little Sophie often.  She's Max's future European girlfriend I think.  Tell her
to eat lots of Wotsits!

Please continue to pray for Max and for all the kids here at the hospital and for all the kids fighting for their lives.  It really makes a huge difference. 

All the best,
--mike

Friday, September 19
Day 36
WBC 2.2

Hey Max Fans! Friday was mostly a day of small progress on the vent. Sometime during Thursday night Max's saturations began to improve and they were able to finally turn the knobs down a little more aggressively and the talk of extubation became a little more serious. So now it seems sooner rather than later again, but no real timetable yet.

Other issues: GVH of skin looks amazingly better, GVH of liver has improved again, but it's really hard to tell if the gastrointestinal GVH has been responding.He is still very uncomfortable when he stools and when he does, it is quite bloody. In addition he's had some blood in his OG tube (tube up from his stomach) and in his ET tube (breathing tube) so they are going to continue to watch all of this. There could be many reasons for this, but they are hoping for a more obvious explanation (continued effects of GVHD) rather than a rarer one (internal bleeding, ulcer, etc.) As Uncle Marko would say, expect the horse, not the zebra.

Elsewhere in the extended world of Max, the Generosity Express (choo! choo!) has apparently picked up steam. The good people of the school district of Gorham, NH – high school teachers, elementary school teachers, superintendent, and others - collected money together for Max and presented it to my parents today. First they were incredibly touched by the gesture, then they were truly blown away by the generosity. When I talked to them today, they were so moved and so happy to be able to stretch this aid across the country to us. Many of these people have become Max fans because of their relationship to my parents and many even still remember me as a student (be nice to your teachers!) but many of these people are not close to any of us but have been touched by Max's story.
To all of you: THANK YOU SO MUCH!

The night before, we found out that a women's group in Park Ridge (IL) has chosen Max for an annual fundraiser. Mary Beth Micucci submitted Max's name. I don't have all the details here at the hospital, but again, THANK YOU so much for doing this, we had no idea Max would be able to be a recipient for this kind of help. I'm sure Margaret can explain more in tomorrow's update.
We have received support in so many different ways, both big and small. But there are still many of you who feel like you are not doing enough. Believe us when we tell you that we appreciate even the smallest gestures. Lately we've seen improvement in Max and we know he couldn't have done it without your prayers and kind words.
As for us, we've received so many little care packages (especially so many sweet treats) that we really feel so much love and care around us. It's odd to say this under the circumstances, but even now we feel very lucky.

We are blessed,
--mike