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.