Thursday, May 27, 2010

Thursday, May 27. We left for MDA on Tuesday, the 25th and stopped in Tulsa to see my brother and his family. What a wonderful place my brother has and a wonderful son and daughter-in-law for what they have fixed up for him.

Roy had blood work this morning and it is great. The hemoglobin is a little on the low side still but is going up each time. It isn't very low nor as low as it has been in the past. Then he saw the doctor and the doctor said he is doing so good that Roy doesn't have to come back until July which will be the six month check-up post transplant. At that time they will also do a bone marrow to get a good read on what is going on. The doctor also said he didn't need to go get blood work every week at the hospital in Topeka as he had been doing but every other week would be fine. Right now he is back at the hospital getting his CVC (central venous catheter) line taken out so that means I don't have to change bandages, flush and cap any more, but does mean he has to be stuck each time for blood work but if it is only every two weeks he can stand that.

His creatinine level has really gone down, which is a good thing, but Roy has been drinking more water also, but he must continue drinking. The doctor saw his 64oz mug and said he was going to have to get all his patients one like that.

I must say that when we came to Houston the first of November, neither one of us had any idea of what to expect in the way of doctors, tests, nor treatment but we both feel we have had two of the best doctors, that they do every test needed and sometimes repeat the tests, and the treatment was tailored to fit Roy's age and condition which is one reason for the fantastic outcome. But also, for all the prayers that went our way, leading the doctors in decisions that needed to be made and for the healing of Roy's body. We see so many down here that are much weaker and worse off that Roy ever was that we feel truly blessed to have gone through this like we did. To all of you that kept us in your prayers - a big thanks and a hug to each one - you are special.

Thursday, May 6, 2010

Thursday, May 6. Roy decided to come back to MDA so see his SCT doctor and that is where we have been all day. His blood work is great and the doctor's appointment went good also. I really do like Dr. Ciurea. He just sat and talked and asked questions - never in a hurry. We told him of our experience with the doctor at KU Med and Roy's concerns. So the plan of action is this --- when we get home Roy is to contact a hematologist at Stormont Vail who will listen to Roy and will work with Dr. Ciurea. If the first one will not, get another one. When we get one, that doctor is to contact Dr. Ciurea and Dr. Ciurea will tell him what type of blood draw he wants and how much and when to give Roy fluids. He is to have that done once a week. Then every other week we will be coming down here to see Dr. Ciurea and he will do more extensive blood work to regulate his meds. He asked Roy if that would be a financial hardship and Roy said no, so I guess that is what we will do.

Roy really itched last night and today and had a slight rash so they were checking him for GvHD but if he has any it is light. But that is also another reason Dr. C. wants to keep a close watch on Roy. The doctor's assistant was checking him before Dr. C. came in and said some of the spots looked like shingles and I said, Oh I hope not. They hurt and itch. I've had them before. She said he could get them because his immune system is so compromised but since they didn't hurt she was sure it wasn't but would be watching.

Instead of pulling the rv back and forth each time I told Roy we ought to see about a motel for a couple of nights if they could get the appointments all on one day but he said he was going to talk to his brother in China Spring to see if we could leave it there and that way we would only be driving the rv about 4 hours and just drive the truck back and forth. So we will see. I know we checked into motels for this week but there were no vacancies and when we got here we found out there was a big convention at Reliant Center. But Roy hasn't talked to his brother yet. I know it is a hassle but I sure do like having my own bed and things around. The only bad thing about leaving the rv in Texas is that we won't be able to go to our camping club campouts. When they camp close to home we can go over in the evenings to eat with them but will miss the monthly campouts.