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.
Friday, October 22, 2010
Saturday, October 2, 2010
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.
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, 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.
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.
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.
Friday, April 23, 2010
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.
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.
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, 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.
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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