Thursday, March 25, 2010

Things have been going good for us and Roy is doing great. He saw his doctor Tuesday and Dr. Ciurea was pleased with the way he is doing; they will be scheduling a bone marrow about day 90 and Dr. C. said he would probably go home on day 95. He will then go to the KU Med once a week for blood work. Roy attended a SCT survivor meeting this morning, I was only able to attend the last 30 minutes, and the coordinator that lead the meeting said that we would probably be coming back here in a month. She also gave him a lot of dos and don'ts that sort of upset him. I think Roy has been doing so good he thought the worst was behind him and there is nothing to say that everything she said might or could happen will happen. She talked a lot about GVHD, graft v. host disease, and where it might attack and when it could attack. She said there is a possibility for the next two years of this happening and if he passes year 3 he probably won't relapse but people have relapsed the first year - there is no guarantee. We have to be careful about seeing the grandkids - if they have had vacinations we can't see them for six weeks following, they are to tell the pediatrician that someone is visiting that has had a SCT so the kids can be checked to see if they are well, no sun without sunscreen and a wide brimmed hat, no yard work for a year because of the mold and things (perhaps that means we can sell, hope, hope, hope). I also found out there is a Rit sun screen that I can get to add to the laundry and it is good for 20 loads.

Like I say, it just hit him hard since he has had no problems. But I am sure they tell us the worst of what can happen.

Roy participated in a couple sleep studies and the last one they wanted to put the c-pak (or whatever it is called), on him and he was not able to tolerate it since he is so claustorphic so they just gave him oxygen. The doctor has ordered him to have oxygen at night so they will be bringing that out to the rv and setting it up for us. If he can't stand the mask, they will use the nose plug things but at times past he hasn't thought they work well for him, but we will see.

So we have been given a packet of information to give to the doctor back home and will add the bone marrow results and last blood work he has to add to the packet before we head home.

Thanks to all the prayers and concerns you have shown us. We will continue to do well and I will enjoy each day and try and get Roy able to do that also. You know, life is uncertain for each of us, he just has a disease that brings this uncertainity a little closer. As I told him, we we got him, he really had no choice. So we plug along.