Friday, April 16, 2010

Friday, Apr. 16 - raining in Oklahoma right now. We left Houston yesterday mid morning and got north of Dallas for the night -- 319 miles but that was way too many for Roy as he was really tired when we stopped. So today we only drove about 180 miles and stopped just south of Guthrie, Ok. When we drove through Oklahoma City, there was quite a rain storm and it is raining here now - just a gentle soothing rain.

Roy had 3 hours of fluid on Wednesday before we left to try and keep his creatine level down. He had email KU Med about an appointment with a SCT doctor but they never got back to him as their stuff on the internet said they would, so he ended up calling them. He finally heard back from them yesterday and even though he had asked for Dr. Omar - that is his first name and he had seen him when he was in the hospital the first time at KU Med - but they wanted him to see Dr. Kamenpati (sp?) who had seen a couple of times before he went out of remission and we went to MDA. Roy said, no, that his SCT doctor wanted him to see a SCT doctor not just a regular hematologist. Finally, this afternoon, they said they had him scheduled to see Dr. Omar on Friday, the 23rd. Roy was really hoping to see him sooner but they said that is soon as they could get him in. We have a packet of things for the doctor that Dr. Ciurea sent with us re: blood work, what they need, now much, and how to send it to MDA.

From the side of the conversation I heard the reason they didn't think he needed to see Dr. Omar is that he didn't do the SCT but KU Med wouldn't do it. And in a way I am glad that they didn't. No telling how things would have turned out since MDA did a regime of chemo and drugs just for him - not what everyone else would get - no matter the age.

Need to figure out what to fix for supper tonight as Roy has been losing weight and I need to get him some energy. When it quits raining I will run to Guthrie and see if I can find a store.

Roy has an appointment May 6 back at MDA but we will be taking my car and I will be doing the driving. It is just too hard on him to pull the trailer. We will be going back every month for the first three months, then a bone marrow, and I think the doctor said we would go back every month for another three months. Whatever needs to be done, we will do it.

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