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.

Thursday, Feb. 11. Life has been going along fairly uneventful and that is good for us. We saw the doctor yesterday and he is real pleased with the way is going; the only thing is they would like him to drink more water but he has a hard time doing that. They had decreased him to two hours of fluids but today they upped it to 3 hours. They have also changed that he only needs blood work Monday, Wednesday and Friday; so that cuts down part of what needs to be done each day. The doctor gave us a report on his bone marrow test "The post-transplant microsatellite polymorphism pattern is identical to the donor pattern MRN 816533 (Tommy and his medical number - this was not in the report but for you all) which is compatible with successful engraftment. No chimerism is observed." From what I understand chimerism to be, this means Roy's blood type has not changed yet to Tommy's blood type, but this will be happening soon. It also says "No morphological or immunophenotypical evidence of acute leukemia." So as far as they can say, he has no more leukemia. He is taking a lot of pills, but not as many as I thought he might have to take, so hopefully that will keep him from getting the graft v. host disease. I know one of the pills he takes they said he will be taking for six months but that is the only one they have given a time on. We just get what they prescribe and take them as they say. The nurse said that hopefully within the next week or two, as long as Roy is doing good, they might be able to give us a day off from coming in every day. But so far Roy has to go in every day. I don't go in with him on Saturday and Sunday and I think I might not go in some of the other days either.

Wed. Feb. 3. It has been a while since I have written but it has been rather quiet and uneventful here in Houston. As a quilting friend of mine told me (her husband also has AML and had a transplant about 8 years ago) those of us that are dealing with AML like boring. That means things are going along good.

Roy had a bone marrow yesterday and today when the doctor saw him he told Roy that his blast was 1% which is really, really good. In fact Roy is doing so good that the doctor said he won't have to have another bone marrow until day 90. Today is day 30 and they usually do them on day 30, 60 and 90 but we get to skip day 60. Roy has had some diaherra off and on but so far it is just caused by magnesium and not a graft/host problem as it can be controlled by Imodium - not the over the counter kind but a prescription kind. They have also taken him off one of his virus antibiotics as it was making his liver function go high. So they are giving him a different kind by IV for a few days. They are also going to be checking his blood to see if he has any signs of the donor blood type yet. They said it should start showing up.

We go every day for blood work and IV therapy. It is a bag of fluid with magnesium in it and then today he also had the antibiotic. Since Roy is on Medicare, Medicare won't let him bring a pump home as those not on Medicare can, so we go in every day. We can't figure out why Medicare won't let him bring home a pump instead of paying for a hospital call every day.

The doctor and nurse are real happy with Roy's progress. They said his body has been through a lot but is doing great. It still amazes me that KU Med Center in Kansas City couldn't, or wouldn't, fix up a regime for him to have a transplant but that they would here, without any qualms in doing it.

So hopefully, the next several weeks will be boring.

Tuesday, Jan. 26 - Life has been rather quiet for the most part. I took Roy to the hospital both Saturdy and Sunday for his appointments for his fluids. Then when he was finished, he called and I went to pick him up. Otherwise we would have had to ride the Metro and he really is too weak to walk as far as needed. That also gave me the days to get chores done around here. When he had his appt. Sunday, his hemoglobin was 8.1 but the nurse said it would be okay to wait until Monday's appt. for a transfusion.

But, about 3:20 a.m. Monday morning, Roy got up to go to the bathroom and was having a terrible time breathing so I took him to the ER. Of course they gave him fluids, did blood work, did a chest x-ray and hooked him up to a hear monitor. His hemoglobin was still 8.1 but the doctor said he needed blood and they gave him two units. Since each unit takes 2 - 21/2 hours to give I came on back to the RV, cleaned up, ate breakfast and took a nap.

He had his blood work and 3 hours of fluid today - this is our every day schedule. The doctor will be in tomorrow and he has a bone density test tomorrow afternoon, so I will go with him then but if he is feeling okay on Thursday, I think I will stay home and let him ride the shuttle by himself. I just go and sit so I might cancel out then. All in all, his counts are good. He is just weak and tired but they tell him to keep as busy as possible to keep his strength up.

Thursday, 1-21-10 - Day +17. Everything is going great. Roy does seem to be tired at times but overall I think he is doing great and so does the doctor and the RNP. Today he got his usual bag of magnesium plus he had to have a bag of potassium so he had 5 hours of drips. He slept off and on while I sat and did handwork. We had to catch the 6a.m. bus so when the alarm went off at 4:15 this morning I sure hated to get up. Tomorrow we'll catch the 7a.m. bus so we can sleep an extra hour. I told Roy I was going to ask the nurse if I needed to be there every day, all day and he said I didn't need to ask, that I didn't need to be. I said I really need to do laundry and go to the grocery store and when I get home after 4p.m. and get dinner it is too late to start any chores. So Saturday and Sunday I will take him to the hospital and drop him off and then when he is finished he will call me. My only concern was that they said the caregiver needed to be with the 24/7 but we decided when he was in the hospital for treatment, that they could take car of him and that was only when he was out.

Also, I asked the nurse if I understood her correctly Tuesday, that Roy would be coming in every day for his fluids and she said yes, that Medicare wouldn't pay for us to have a pump at home or to have a home health nurse. She also did say that beginning Monday they will start him on a magnesium pill and then the next week they would give him 2 and it could work up to as many as 5 or 10 per day. That way they will just give him fluids and not with the magnesium in the bag. She also said that before long he would have to start taking Imodium as the magnesium is the same as Milk of Magnesia and we know what that is supposed to do, but so far he hasn't needed the Imodium but we carry it with us just in case.

His platlet count was in the normal range today, and I can't remember when that has been. His hemoglobin and WBC were good also. She is still telling him he needs to drink more fluids as his creatan level was within range but on the high side and she would like it a little lower.

I mistyped and it should be 1-19-10 but it is still +15 day. Guess I'm tired. Haven't been able to get the other one to publish yet but will keep trying.