Sunday, May 1, 2011

May 1st - it has been 16 months since Roy's transplant and he is doing great. Yesterday he was down as he had blood work done Thursday and they were lower than what he had had done three weeks prior. He was sure he was out of remission and on and on, so I said email your doctor and tell him. He got the results of the blood work and didn't call Roy so he wasn't concerned. One time a nurse told him not to worry and they would tell him when it was time to worry. So Roy emailed his doctor, after I told him 3 or 4 times to do it, at 6:37 p.m. and he had an answer back at 6:44 p.m. Now, that is what I call service and Dr. C has always been this prompt. He said there was nothing to worry about, that would do a couple other blood tests and he would see him at his regular appt time, May 24. I wish I could get Roy to sell, move to a warmer climate and do a little traveling while we both are able, but I don't think that will ever happen. Roy told the doctor he had really been tired the last couple of months but so have I but I just attributed that to getting older, plus Roy has put in a garden which is hard work. I don't know, I suppose we will just sit and rot. At least I have my quilting business and it is booming. I would think with the way the economy is that the quilting business would be one of the first to get hit as to me it is a luxury but I am glad others don't think so.

Also, the end of March, my niece called and said my brother was in ICU in Tulsa and not expected to live. She was in Florida visiting her folks and Mike, my nephew was out of the country on business. They wanted me to go be with Gary until they could get home so I took off and got there shortly before midnight. Gary was very, very sick but he has gradually improved. He was in ICU for 5 weeks but has now been moved to a rehab hospital; they took the breathing tube out before he left ICU but put in a trach to help his lungs and heart not have to work so hard. So that has been stressful for me as well.

The middle of April, a friend and I went to another friend's place for a week of sewing. While there I bought a puppy, emailed the girls and told them but not Roy. He was not too happy with me and still isn't, but at least he talks to him now. It is a toy poodle and just a doll. His name is Ben and is chocolate and white. His body hair is not curly but his head and rear end are and a lot of folks thinks he has some shu zitz u (sp? not correct) and he could have. Never really barks unjless we are playing with him and loves to sit on my lap in the evenings and sleep.

So life goes on. I will write when we get back from Houston to let everyone know how he is.

You know, if it would warm up and the sun would shine I think we both would feel better. I'm beginning to think I have the light deficiency problem (can't remember what it is called) as I function much better in the sunlight. Roy talked to a friend yesterday that he hadn't seen for a long time, and the friend told Roy he and his wife had a 40' motor home and just got back from Arizona and California. I said that would be wonderful; wish we could do that. No comment. Whenever we talk to the granddaughters in Florida via skype, they always ask when we are coming to Florida and grandpa never answers. I'm ready to go anytime. I know we don't have a lot of money but boy I would sure rather spend it while I'm able and not wait until I can't enjoy it.

Enough rambling. Thanks for listening all.

Friday, February 25, 2011

It has been several months since I last posted so want to get all up to date and "vent" a little bit. Roy's appointment was January 19 but he went to Texas around the 5th of January to stay with his brother in China Spring, Texas to help him move into their new house. He then went on to Houston to M.D. Anderson. He went by himself this time as I had gone to Florida to see our daughter and family. I stayed an extra week because of the snow that Kansas had. All of Roy's tests came back great and he goes back in May. He had some booster shots and will get more, or others, in May. Since he has been home we have been having snow and more snow and daughter in Florida would like us to move there, or at least come down there, but I can't get him to move. Right now he has had a cough with a lot of phlegmn the last couple of weeks and you would think he is the only one that has had that bad of a cough and lasted that long. They have listened to his lungs - they are clear; he has had a sinus and chest x-ray and they are both good so he is on an antibiotic but he thinks he ought to feel better immediately. Oh men, they are terrible babies when they are sick.

Enough of that, so will discuss the snow. Roy said we are forecast to get more this weekend and that doesn't help his disposition. Life does go on.

Roy is almost 14 months post transplant and everything is still going great. Couldn't ask for anything better. The Lord has answered all prayers; if only he would/could enjoy the life he has been given.

Enough griping, need to get back to quilting.

Friday, October 22, 2010

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.

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.

Thursday, May 27, 2010

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

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

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

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

Thursday, May 6, 2010

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

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

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

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.