We left the hospital about 4:30 this afternoon. Shortly before Roy finished his second bag of fluids the nurse drew blood to test for potassium and it came back 5.5 which is 1. lower than this morning when it was 6.6. So we got to come home; it has been a long day and I'm going to bed. Roy has to be at the Med Center at 8a.m. Sunday and they will do a blood draw and check for potassium and creatinine levels and most likely will have another bag of fluids. We then will go back Friday and see the SCT doctor.

The doctor told us that Roy is doing great - this is day 109 - and that 60% of those that have had transplants will develop some type of GvHD, most likely a rash on the hands or feet or mouth sores but by catching it early it is very treatable.

We saw a lot of nurses that we had seen when he was here before in the hospital and treatment area at the clinic. Roy felt very comfortable there and said it would be much closer and easier than MDA and going down every month and calling if something goes wrong, so I guess that is what we will do. We will need to talk to the doctor more on Friday when Roy goes for his appointment.

Good night folks, and blessings to all.

Friday, April 23. Roy had a 9:00 a.m. appointment today at the KU Med Center. We are seeing a Dr. McGurkin and he is on top of things - much different than 3 years ago and the doctor we saw then. He is sorry KU lost us to MD Anderson but thrilled that things have gone so good for Roy. He also said if we continued to go to MD Anderson that we should stick with our PCP doctor in Topeka but if we wanted him to follow us, we wouldn't have to keep going to MD Anderson - that there shouldn't be 2 SCT doctors. But, Dr. McGuirken has dictated letters to Dr. Sachs, the doctor in Topeka, and Dr. Ciurea about blood work and course of action today. Roy's potassium level was very high today so he got medicine to drink that is supposed to give him diaherra to get rid of a lot of the potassium. They even brought in a commode for him but when he has had it before it never works that fast. They were also giving him a liter of fluids but before that one was quite finished, they added another bag with something else in it; not sure what.

They were going to start tapering his tacrolymus (one of his GvHD rejection meds) to two in the morning and one at night but the doctor just came back in and said his level was 19 and it shouldn't be over 15 so they want us to hold tonight and both times tomorrow. Roy will be coming back Sunday for lab work and fluids and they will let us know then what should be done about the tacrolymus at that time.

Roy likes the doctor. Dr. McGuirken told us he was head at Yale and Sloan/Kettering (a big cancer hospital in New York) and came to St. Lukes a few years ago. About the time we left, St. Lukes closed their cancer (maybe just leukemia) department and he came here to MD Anderson. The doctor we saw in '07 is no longer here and this Dr. McGuirken has really made this transplant department grow. The number they are now doing is about 4 times what it was in '07 and about 1/2 what MDA does. He did not know Dr. Ciurea, the one we have been seeing in MDA, but is friends with the doctor that is the head of the department.

Right now, they are working to get stabilized and he said the decision to go back to Houston or stay here will be ours and it won't matter to him. One thing about it, it will be less expensive to stay here - 65 mile trip versus a 750 mile trip each way. The decision will be Roy's to make but if we go back and forth to Houston it will be tiring on him, I know that.

So glad I brought my sewing as we will be here at least another 3 hours. You know, these are rooms are full of SCT patients just like the ones at MDA - so, so sad, so much cancer and we just see the blood cancer patients.

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.

Oh my, I lost another one so here goes again. Roy saw his SCT doctor and he told Roy that he shouldn't be depressed with the way things are going; that he has done better than anyone thought and with no problems. Roy told him he was concerned about his creatine levels not being in the normal range, 1.3 is on the high part of normal, but Roy's was 1.6 today; last Thursday it was 2.0 He also told Roy that if Roy needed to worry, he would tell him. Dr. Ciurea said there was no reason why we shouldn't go home; that if we ever had questions or concerns, just email him and he would get back with us. We know that is true as he has always answered our emails in a short time. We have a great doctor.

Our rent is up the 8th so I would like to head out at that time as I have a doctor's appt. on Tuesday and need some blood work done so I can get some prescriptions refilled. Roy has an appointment with the pain doctor for a shot in his neck but this was really our (my) choice as Roy is on a muscle relaxant and pain medicine which is really helping. When we come back in a month to see Dr. Ciurea we could always do it then if needed. Roy will need to make an appointment with a SCT doctor at the KU Med Center to see him and have blood work once a week. Dr. Ciurea said Roy could go to the hospital in Topeka for fluid IVs if needed. We are taking a packet of instructions back to the doctor so they know exactly what is needed to be sent back to MDA. It is funny to read part of it - they need so many vials of blood and they need to be in certain colored tops, how to pack and how to send. Very, very specific.

Our camping club is having a get together the 17th and it would be nice to be able to join them. But we'll see.

So, a great big thanks to all family and friends for your prayers, thoughts and concerns.

Sunday, April 4. Saturday, Tommy and Cindy came down to see us but it turned out to be quite an evental Saturday. I've know, or suspected, for about a week that Roy was having some depression but he would not admit it. A week ago this past Thursday we had a SCT survivorship class and some of the things they talked about really sent him for a loop. Ever since then he had not been eating well, nor functioning well. Thursday when we saw the SCT doctor I told him about Roy's reaction but Roy said that he was okay now. Saturday morning he was really dragging and Tommy took him to the motel to check in and while there, Roy said he needed to go to the ER that he couldn't do it anymore. He thought he could do it but it was too much. So Tommy brought him back here to the RV and Roy was just in tears, so Tommy took my car and took Roy to the hospital. Tommy said the nurse asked Roy a few questions and said he was in full blown depression but was not suicidal yet. They kept him about 3 hours, gave him a prescription for a couple of meds and a liter of fluids.

So today they came by and wanted to drive down to Galveston to check on some RV parks. Roy was laying down but I asked him if he wanted to go so he reluctantly got up and went with us. The doctor told us Thursday when we saw him that Roy was free to leave and go home. We said he had an appointment Monday with another doctor so Dr. Ciurea said he would see us Tuesday. That he wants Roy to make an appt. with the KU Med as soon as we get back home and he is to to twice a week for fluids and blood work. Roy has been having trouble drinking enough water and his creatin level is getting higher. Then besides going to KU Med twice a week, Dr. Ciurea said we would be coming down here once a month for six months. I told Roy it is silly to go home, drive 65 miles each way twice a week and then have to drive back down here for appt. May 7, that we should just stay here for that six months but he kept saying, I don't know, we'll see - could not make a decision. So yesterday he told us at lunch that he thought we needed to stay. The nurse told him at the hospital that not being able to drink was part of the depression problem. This morning he had his morning meds laying on the table in front of him for over an hour before he could take them. He has always had problems taking pills but nothing like this and that is part of the depression also.

So, we will see how the meds work and what the doctors have to say. They didn't have an appt for him when he left so we will check the computer to see when they have one scheduled. But it has gotten so that he hardle takes a shower or changes clothes unless he has a doctor's appt - which has been once a week and that is not like Roy.

So, life goes one. This is just another bump in the road but we will get through it. When I thought we were going home I had made an appointment with my doctor to have a test run that I had cancelled when we came down here and needs to be done so I am going to call her tomorrow and see if I can have my papers sent down here and I'll see about getting a doctor down here. Things could be worse and they will get better.

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.

Thurs - 2-25-10. Life has been rather boring but that is fine and that is the reason I haven't written for a couple of weeks. Roy's blood work has been good enough so that he only has to have blood drawn 3xs a week for the last couple of weeks. His hemoglobin was low enough last week that he had a unit of blood but that is all he has had to have for a long time. He count was not as low as what they usually transfuse at but since he had that episode of shortness of breath about a month ago, they set his level higher to transfuse because they didn't want this happening again.

Also, the last couple of weeks I have been sending him by himself instead of me going with him and sitting for 3 hours while he gets a bag of fluid. I know, this probably isn't right but I was just getting worn down - after all I am older than he is. This morning he has an appointment with a pain doctor about his neck. He has had neck problems for about 18 months now - it is a herinated (sp) disc (is it 'c' or 'k'? - don't remember) and when he was in Topeka before we came down here, he had had a couple of injections of steriods (we think it was ) and that seemed to help but that is wearing off. They gave him a prescription for Darvon but that doesn't seem to help too much so the SCT doctor is sending him to a pain doctor. I told Roy this morning to be very frank and honest with them and whatever they want to do or give him, let them. He has kept saying up until this point that he just wanted to fight the leukemia and deal with his neck later but the doctor and everyone says they can do both at one time and it will make him feel better and be more enjoyable to be around.

Otherwise, nothing is new. A gal in an rv parked next to us is from Mineral Springs, Tx and is a quilter so we have hit a couple of quilt shops. Her husband is getting proton shots for prostate cancer and they will only be here through next week but it has been fun talking with her and going shopping.

The sun is shining this morning and the trees are starting to bud out. The weather man says it is about 10-15 degrees below normal here but it does seem nice. We ran out of propane in one tank during the night so went outside about 4a.m. and switched tanks so when Roy gets home today I will send him down to get the empty one filled. See that is our excitment. One day I did defrost the refrigerator and freezer part and cleaned the oven so I do do a little housework.

Roy is now at day 52 post transplant - that means 48 more to go so he is over halfway through. The doctor said last week that he is doing fantastic but he had a long way to go and I realize that but we are thankful for each day with no signs of rejection. His WBC and platlet count are both in the normal range - it is just his hemoglobin that is a bit low but it hasn't dropped really low.