The Numbers Continue their Decline

33 May 22, 2006 at 09:03 PM EDT
Seems like a long time since I posted an update and thats because the weeks have been pretty uneventful. We only get vntrs every other week now and we were hoping and really feeling positive about this one. Unfortuantely that feeling proved incorrect for us today. The counts are down again by 2%. Doesn't sound like much but when they are consistently going down 2% with every vntr we are inching closer to facing having to go through this again. Its so discouraging and upsetting. Overall there is only 18% of marrianas cells working in Simon. It really stinks. We are trying not to think of what this might mean for Simon and Marriana. Its really going to be hard to see them both do it again. From the little we have been explained I understand it will be a "boost" and I think a little less involved but still the same there will be chemo and there will be a harvesting for Marriana. It is really alot to undergo for a 4 year old and a 9 month old. We are not there yet and hope it to not come to that but we are really on the low end of things.

Simon has not been eating the last 4 days and has been gagging and throwing up. This leads us to doing speach/nutrition therapy which he will be evaluated and set up on Friday and Simon has to see a surgeon to possibly get a G or J tube put right into his tummy because the ng nose feeds have been ongoing for 4 months and its too long and could be causing irritation in his throat and nasal canal. So that will probably happen soon. I think we are ready for it since he needs to get nutrition and we feel the ng does bother him.

I ask for prayers all the time, I feel disappointed when I feel the prayers are said and not answered. We do feel that Simon will prevail, maybe it will take a little longer but we are trying are best to stay focused, and still enjoy every second we are all home together. You never know what tomorrow will bring and I am seeing that happen all around me so if nothing else tonight, realize what you have in front of you, next to you, around you, and relish in the fact that there is no place else you'd rather be. God Bless. Tracy and David