Oct. 22, 2010. Just got home from Texas; Roy had his 3 month check up yesterday and it was great. The doctor was very pleased. In fact he too him off three of his meds and is tapering off on another one and is to quit another one when he has finished the current round. They also gave him 5 of his childhood immunization shots and will give him more in January when he goes back. In January they will do a bone marrow biopsy but there is no reason it won't be good. The doctor didn't say, but I would imagine after his appointment in January Roy will be going back once a year, but we'll see.

Roy's bother, the stem cell donor, is building a house in Axtel, east of where he lives now, and they had a break in with copper wire being stolen. Tommy, the brother, told Roy he would pour a concrete slab if Roy would come down and stay out by the house until they move in. I don't know if Roy will or not. i have things to do so I might send him down by himself. The Baker family is having a get together Thanksgiving day and I want to be here for that, since I'm the elder of my generation and helping with it.

Since Roy is good, Trudi, our daughter in Florida, wants us to come down for Christmas. I have told Roy I want to go but got no reaction so perhaps I will have to go by myself.

It has been several months since posting but things have been going along very smoothly. Roy's last appointment at MD Anderson was July 20 and everything was good - all his blood counts were within the normal range and his bone marrow biopsy showed 1% blast and no leukemia cells. Dr. Ciurea told him he didn't need to see the doctor here in Topeka for blood work only once a month and he would see us back in Texas in October, but they wouldn't be doing a bone marrow biopsy at that time.

Since the weather has gotten cooler, Roy has been going out and doing yard work - mowing, cutting weeds, etc. Well this past week he was cutting brush and got into poison ivy and thinks it should be cleared up in 2 or 3 days, which is not the case. He is getting worried and upset because he thinks he might have done harm to his body since his immune system is nil so he wrote Dr. Ciurea about it and the doctor emaile him back and said there was nothing much he could do about it, just apply a cortisone type liquid. I think that made Roy feel better as he was sure he was going to be on the downslope and be back in the hospital. I tried to tell him that getting over poison ivy is not an overnight thing, but takes several days.

Also, in Sept. Roy had cataracts removed from his eyes. The doctor in July told him his health was good enough for him to have it done. He was anxious when he had the first one done but doing the second one was much easier for him. He goes back the 15th for a checkup so we will see what the doctor says about glasses and stuff. Right now he doesn't need glasses for driving but I am sure he will need something for reading and whether it will have to be prescription or not will remain to be seen. Cheapy glasses from WalMart.

So we go back to Houston the 20th of this month; probably leave home on the 18th and not try and make it in one day as that is a long trip for old folks. The 4th of October will be Roy's 7th month post-transplant and is still doing good. The RV is in the shop getting repairs so we haven't been able to go anywhere for a couple of months but when we get it back, I hope to be able to convince him we need to get out of Kansas for the winter. We'll see.

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. 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.

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.

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.

Tues. 1-18-10; day +15 post transplant. I think I miscounted yesterday. Roy had an 8:30 appt for blood work and then we went to another appoint at the ATC, ambulatory treatment center, where he got a bag of magnesium. This took 3 hours. He will be getting this every day for the next two weeks at least, then they will start him on magnesium tablets commencing with one pill and could get to as many as 10 per day, but this will all depend on the blood work that they do. The GVHD, graft vs. host disease, medicine he is on makes the magnesium lower in his body and magnesium is needed for a lot of reasons. The pharmacist told us what but there were so many important things that I will have to ask her again tomorrow. From what I remember her saying, since Roy is on Medicare, Medicare does not allow him to have IV at home or a home health nurse so he will have to continue to go to the hospital. I have seen a few in the park with a bag and IV tube so I would imagine they are receiving something like this at home but they are also younger.

Roy didn't want to wait an hour at the hospital for the shuttle so we walked about 4 blocks and caught the Metro but I don't know if this was a good idea or not as Roy was really hot when we got home and very tired. He took a nap in the recliner but did feel like eating some supper which is good.

The pharmacist said his WBC was lower, 4. something, but told us not to worry as they were watching his counts and we were not to worry until they did. She said the WBC would fluctuate for quite a while; the reason his count had gone up early was because of the neuprogen shots and that if the WBC went too low, they would give him another shot. His platlets were really, really good and his hemoglobin was improving. The pharmacist and ARN, advanced registered nurse, will be in every day to see him and the doctor will be in on Wednesdays to see him, so tomorrow his SCT doctor will be in.

Then at 2p.m. I have to go to IV Therapy and test to see if I know how to flush his lines. Since he will be going in every day, I won't need to do it very soon, I don't think but this is part of hospital policy so I will do it. That means another late day tomorrow. I'm about ready to buy a small crock pot so I can put dinner on to cook before we leave in the mornings but I don't know if I could get anything on before we would have to leave before 7a.m.

So far things are going good but they keep telling us not to be surprised if he has go back in the hospital. There is a fellow in the park, who is doing fine now, but he was even in ICU for several days so even if Roy has to go back in for a set back, that is all it is, a set back.

He will have a bone marrow biopsy Feb. 2 and they said at that time Roy should have have a lot of Tommy's blood showing up.

Monday, 1-15-10. I will be going to the hospital soon and Roy will be coming home this afternoon. But first the IV Therapy team will be there to have me show them I know how to flush Roy's two lines. I took the class twice but that was a month ago, so last evening I got my instruction sheet out and did some studying. Now we'll see if it works for me. First you unscrew the cap on the new plug, then you wipe with alcohol wipes, then you do this and then that and then you tip the Heprin at 45 degree angle and attach and, and, and, . I am sure the first several times I will have my sheet in front of me while doing this but it will become easier the more I do it. The nurse said yesterday that I would have to hook up some IVs while he is at home also. And then I will need to test out on changing his bandage but I won't have to do that as he just had a new one put on yesterday when they changed out the 3 lumen to a 2 lumen and the bandage change is only once a week.

Yesterday his WBC was 7.1 and neither Roy nor I can remember it being this high since he got sick. On Friday, when they told him he would probably go home, his WBC was 0.6 and they said it would be 1.5 or more on Monday. Well, did he surprise them. On Saturday, it was 3.5 and Sunday it was 7.1. I haven't asked him this morning what it is, but this means the transplant has taken. They told us he would probably continue to need blood, platlets or some type of medicine for several months yet; that there is always the probability of infection and that he will end up back in the hospital and not to be surprised. He has to take his temperature two times a day and if it is 100.5 or more, to the ER he goes; and there are several other things we have to watch for that might put him back in the hospital.

While he has been in the hospital this time, we have met a lot of nice nurses and LPNs. The LPN he has had the last two days name is Irene, my mom's name and Riley's middle name, and she is a runner. She usually runs in the Houston mearathon (sp?), which was Sunday, but she didn't get to this year, but she hopes to one day run the Boston mearathon but she said a person has to qualify to run in that one. And then one of his male nurses is Phillipino and very interesting to talk to. Trudi got to meet him.

I am sure Roy will be coming home with a lot of new meds so I am taking his ID and credit card. It is going to be interesting to see what kind and how many. I have my "hospital sewing bag" all replenished and ready to go as he will be going in to the hospital every day for the next two weeks for blood work, fluids and anything else they determines he needs. The nurse said yesterday that if he is doing great, it might not be the entire two weeks but could be only one week. Then it will be every other day for a long time. We are at +15 days since transplant and have to stay in Houston until day 100 and this is if everything goes as they think it will.

I am so glad we came down here and that the doctors were more than willing to do the transplant. I really feel the doctors at the KU Med Center should have said we don't do transplants after age 65 but go to Houston as they do. Oh well, can't change anything now.

Friday the 15th was a good day. Roy was sitting in the lounge chair when I got there, said he was feeling pretty good and was getting a back of platlets; had already had a bag of blood. He showed me his blood counts and his WBC was 0.6 - up .5 from yesterday. In a little while a nurse came in with dos and don'ts on discharge as she said the doctor said he would be going home on Monday. Since is WBC was 0.6 today it should be 1.0 Saturday and 1.5 on Sunday so he would go home on Monday. Now, this is saying that everything keeps going in the right direction. Before Roy went in the hospital for his transplant, the took out the port he had had put in at KU Med and they put in a triple lieumen (sp) lines and he has used at three at times - especially when getting a transfusion. On Sunday they will take out one of the lines, so he will come home with only two. He has a schedule for Tuesday morning for blood work and possible treatment and this will be the routine for 2 weeks. After that, we don't know yet. We will be here 100 days from Jan. 4. I also told Roy that even though he has done so well there is a great likelihood that he will be going back in the hospital a time or two with fevers and he said he understands. It is just one of the things to be expected. I talked to a lady whose husband was in the room next to Roy's and was on his 41st day post-transplant but was there with a fever and infection but he was discharged yesterday so even though he will probably be back in the hospital it will not mean things have gone wrong.

I got home from the hospital a couple of hours ago, went to get the propane tank filled and then went to Office Depot to get some patterns copied. Tonight I won't have to unhook the water hose and it is not supposed to freeze - about time. Roy was sitting in the lounge chair when I got there and from the looks of his bed he had been up all day. He was getting a bag of blood when I got there and after that was done he took a shower. Then about 4pm the nurse came in and gave him a neuprogen (sp) shot; he will have a shot each day for 7-10 days - depends on how fast his WBC comes up and by next week we should have an idea if the transplant has worked.

I plan on sleeping in in the morning - I had to get up and take the car in for an oil change and that took a couple of hours and then went to U-Haul twice to have the propane tank filled but there was no one there to pump so I went back this evening and got it filled. Those tanks are really heavy when they are full.

Trudi got here Friday afternoon and I took her to the airport this afternoon - Sunday. It was sure nice to have her here, even though it was a short visit. Friday and Saturday Roy was in bed when we got to the hospital and didn't feel well at all, but today he was sitting in a chair, looked better and said he felt better but just very weak. His blood count this morning said his WBC was 0.0 so he has no immune system right now. Roy said the doctor told him about day 14 is when we will know if the transplant is working, but the doctor also told him yesterday that he was just sailing right along and doing great. Roy said he didn't feel great but I told him I thought he was and he was right on schedule for what is supposed to be happening.

One of my propane tanks ran out the other morning and I went to get it filled but there was noone pumping propane at the U-Haul store and the other one charges too much so I will get it filled after getting the oil changed in my car in the morning and then go to the hospital. I really need to do some laundry this afternoon, but that can wait.

The sun is shining today, even though it is still chilly. One of these nights I won't have to unhook the water hose so it won't freeze.

Wednesday, Jan. 6. Roy was having a rough day today but it was not unexpected by the nurse nor the doctors. They had been asking Roy for the last couple of days if he was having diaherra and he said no. Well, this afternoon, it hit. He started having diaherra; the first time they had to measure it since this is part of his output and the second time the nurse took a sample to check for C-dif. She didn't think it was but just wanted to make sure. That way she will know what kind of meds to give him. She said that she has standing orders from the doctor that if certain things happen she can give him certain things. His rectum was really sore also and burned and she was going to give him something for that also. Roy was really tired and just felt lousy. He had been told several time that this would happen but he has felt so good I guess he thought it would happen to him, but the nurse said she could almost say what day they will get what. She also said she had three patients today and one other and Roy had diaherra, the other one just got her transplant yesterday so she would have it in a couple of days. They are watching for a rash but will not be surprised if and when it happens and they have something they can give him for it. Personally, I think he is doing great but I think he feels he ought to go through this with no problems - which will not happen and he has been told that.

Trudi will be flying in Friday afternoon until Sunday afternoon. It will be nice to have her here for a few hours. It was nice that Colleen and her girls were here last week and sorry she went home to really, really cold weather and more snow.

Monday, Jan. 4 - Transplant Day. I got to the hospital shortly before noon and Roy was receiving his transplant. It was two small bags, each taking 30 minutes and he was on the second bag when I got there. The nurse took his vitals every 15 minutes to make sure he was handling everything okay and he was. The only thing was that his blood pressure went up a little bit but the nurse said that was okay and if it got too high they could give him some medicine to bring it down but they didn't have to do that as it didn't get that high. They had given him quite a bit of Benadryl before they started and after the transplant he took about an hour nap; woke up for a little bit and about an hour later he took another hour nap. The nurse told him he needed to be up a little bit to work the Benadryl out of his system so we walked the halls and down to the 1st floor to the gift shop to get some hard candy. He ended up getting some Life Savers as the bag of hard candy was too expensive so I'll go to the store in the morning and get some for him before I go to the hospital. He hadn't eaten anything since breakfast so before I left I told him he needed to order some soup or something and when I left he was dialing the food service. The nice thing at MDA is that you can order up until 10p.m. and at any time and the folks that bring it up are dressed like fancy food restaurant folk - white shirts and black vest and pants.

The nurse said 7-10 days after chemo started his counts would go to nothing and that is what they want. She said his white count will .0 or .01 but she didn't say what his hemoglobin or platlet could would be but he will have to have transfusions and when the white count goes that way, that is when he could get really sick and have problems, so anytime from Wednesday- Saturday he could start having low counts. She said they like for the WBC to go down slowly and that makes mouth sores less severe but there isn't anything they can do to control that - it is all according to the individual - some have counts that drop fast and others slowly.

Saturday, Jan 2. Roy had his 4th and final day of chemo this morning. This was a different kind and even though the chemo drip only took 30 minutes, he had to eat ice chips for an hour. I asked the nurse why and she said it was to constrict his blood vessels in his mouth and throat as the chemo could, and probably would, make mouth sores but the ice would make them less severe. Also, as soon as he got the chemo, he got in bed and took a nap- he said it really zapped him but after lunch he was feeling much better. He also wasn't peeing as much as the doctor wanted him to - probably not drinking that much - so they gave him some lasek (sp) through the IV and boy he didn't dare go to far from the room. Within an hour he had gone about 3-4 times, I lost count. By the time I left about 2 hours later he was better and wallked me down to the front door.

About 4p.m. the nurse came in and hooked him up to his anti-rejection medicine along with a small bag of saline. They have to run them together as they need a certain level of the medicine and they will check his level every day and make corrections as needed. I don't understand it for sure but from what I gather the total amount is 21, so they start out with the anti-rejection medicine at 10 and the saline at 11 and whatever corrections have to be made, the total has to be 21.

Then on the 4th he will get the transplant. The nurse said it will be just like receiving some blood. Probably he will need blood tomorrow as the counts are starting to drop but not too fast or too far yet.

The nurse said the bag of chemo he got today should be the last chemo he will need; and if she is correct that means the transplant worked and Roy is doing good. We asked how long it would take his blood to change from O negative, what Roy has, to A positive, which is what Tommy has. She said it would take about 3 months.

Roy had his third day of chemo today so tomorrow his is last day of chemo and then on the 4th he will have the transplant. Beginning tomorrow they will begin giving him anti-rejection medicine through the IV but when he goes home it will be in pill form. He will only have to take that about 6 months. The nurse said that about the 10th day out from the beginning of chemo Roy will be the sickest. His counts will be really low at that time, he will feel tired, no appetite and in general feeling really bad but that this should only last about 3-4 days and then he will start getting better. He is up in a chair or walking most of the time which makes the nurses happy because staying in bed all the time is just welcoming pneumonia - especially with his lung problem. The doctor is really pleased with his lung function so far as that was his big concern.

Whenever he takes a shower, the nurse unhooks his line but commencing tomorrow they will not be unhooking him until he goes home so his IV pole will go with him to the shower. The nurse wrote on his calendar that his projected release date is 1/25/10 but this is barring any complications. So far, so good.