Tuesday, December 29, 2009

Tuesday evening, Dec. 29. Roy had his blood work done and then we went to see the doctor. The nurse kept bringing out papers for him to read about the treatment he will be having. So, when the doctor came in, he asked Roy if he was ready to go through with the transplant and Roy said yes, that he didn't feel he had much of a choice and the doctor said no, he really didn't. I asked the doctor that if Roy did nothing but continue to have chemo would that be enough and the doctor said no, that as aggressive as Roy's disease was, chemo would not help that his disease would become resistant to the treatment and that he wouldn't be here next year at this time. He left the room to take a page and when he came back, he continued by saying the medium time he would have left would be nine months or less. So, he said he was confident and that Roy would come through this fine, but that they would not be giving him the hardest chemo as it would kill him, so they will be giving him a slightly easier chemo but it would be fine. So he starts chemo tomorrow, has it 12/30; 12/31; 1/1;2; then on 1/3 he will have nothing and on 1/4 he will have the stem cell infusion. So he will be in the hospital 28-30 days and this is if everything goes as planned.

Tommy had the harvest done today and he said the nurse told him that it looked good. He has to go back at 7:30 tomorrow to see if they have enough. If so, his job is done and he can go home and rest. This has been hard on him also because the shots have messed with his normal blood counts and then having the harvest done today that took 4 hours left him rather weak. If they do not have enough cells, they will give him another neupogen shot and do another harvest.

Tommy picked me up at the hospital and we called Colleen and the girls, who were still at the mall, and they met us for dinner. We ate at Joe's Crab Shack and it was a really, really good.

I think Colleen and I will do a little shopping in the morning as Tommy will go see Roy and then Colleen and I will go up in the afternoon.
Tuesday, Dec. 29. Tommy is at the hospital this morning getting his stem cells harvested. He has had shots for three days, plus today, to generate more cells. The harvest will take about 4 hours. He will go back to the hospital tomorrow to see if there were enough stem cells; if not, they will give him another neupogen shot and do some more harvesting. Roy has a 1:30 appt. for blood work, then another appts. and will meet with the doctor at 3:30. After the meeting he will be admitted to the hospital. Yesterday Roy had another CT scan, but not another chest xray as we thought he was going to have. I am sure the doctor will tell us all the pros and cons of the transplant but unless he definitely will not do it, Roy is going ahead with it. Otherwise, there is not much they can do, but I will ask that also. He seems really tired this morning, but I think he is very anxious also. I am not sure how long it will take him to get admitted as it will depend on room availability and then tomorrow they will start the hard chemo to try and kill all the AML. He will have 4-5 days of chemo, I can't remember which, as for older folks they won't give the really, really hard stuff but an extra day or two of a lesser amount. He will then rest a day or two and then have the stem cells. He will be in the hospital about 30 days, and that is if everything goes as scheduled. It is going to be hard on Roy but I will get tired also but will try and rest as much as possible. There is a Murphy bed in his room if I need to stay or want to stay, but a class we went to said I needed to get my rest because when he gets home I will be really tired taking care of him and that I need to be well rested when he gets home. So I hope I will only have to stay during the day but come home in the evenings and rest.

Colleen and the girls will be going to the Galleria Mall this afternoon while we are at the hospital since Madison isn't old enough to get in the hospital and they will be going ice skating. The hospital won't let any child 12 and under in because of the H1N1 flu. Madison will be 13 the middle of February, so I think I will ask Roy's floor nurse if Madison can come up tomorrow before they leave but if not, I understand. They will be eating dinner at the Mall since I don't know how long I will be at the hospital. Then tomorrow the girls and I will go out and eat. They will be leaving early Thursday morning heading back to Kansas but will be back down over spring break in March. Hopefully at that time it will be warmer for them when they go to Galveston. They went yesterday since it was sunshiny and even waded in the water. The girls had a good time and enjoyed themselves.

Wednesday, December 23, 2009

Wednesday, Dec. 23. I don't know how much I can write before I break down in tears but here goes. We saw the SCT doctor this afternoon and he is concerned about Roy's lung function. Roy is scheduled for another CT scan Monday morning and then a chest x-ray. After the x-ray, the doctor will talk with us again - the plans are right now for Roy to enter the hospital on Tuesday to begin chemo. If Roy does nothing, he probably won't live too long, but of course we don't know how long; but if he has the transplant he will be really, really sick and that will also be very dangerous. It kind of hit Roy hard, the reality, but I think he thinks he really doesn't have a choice, that he needs to go ahead with the transplant. So prayers are especially needed tonight and this weekend for strength and for wisdom for us and the doctors.

Tommy will be back Saturday as he has to be back at MDA to start getting shots ready for the transplant. I guess I was mistaken earlier about bone marrow as they will be doing the stem cell transplant so Tommy has to get shots Saturday, Sunday, Monday and Tuesday to build up his red blood cells and they will harvest Wednesday. If they don't get enough he will have some more shots and then harvest again. We had supper with Tommy this evening and he is leaving in the morning to go home but will be back on Saturday.

Colleen and her girls will be coming in late Saturday evening so I sure hope the weather is good. Tommy and I decided that instead of buying a motel for the girls that Roy would stay with Tommy and the girls will stay here. Colleen is driving my car down but they will be flying home the 31st. Then Trudi is coming the 8th - the 10th. It will be good to have her here then also.

So, we will muddle through the weekend and start over for another week of appointments at 6:30 a.m. on Monday. I will keep you all updated as to what else is going on here.

Love to all my friends and family. Have a wonderful Christmas.

Tuesday, December 22, 2009

Tuesday, Dec. 22. Today wasn't as busy as some have been - we got through at the hospital about 1:30. Tommy didn't have any appointments today so he came picked us up and we went out to eat lunch. Then we did some driving around in the afternoon, I picked up a gift card, then we went to Olive Garden for supper and then I went to the grocery store. I will probably go to bed early as we have to be at the hospital at 7a.m. - that means getting on the 6:06 bus. Roy's shoulder hurt him quite a bit last night, so about midnight he got up and sat in the recliner and slept the rest of the night. I made him take some pain pills and covered him up so he could sleep. He did pretty good. He got up at 5 and took some more pills. He hasn't taken any today until just now but he says it is sore - and it is bound to be as he had an incision and some stitches.

The first thing today he had a pulmonary breathing test and then we went to see an internal medicine doctor that specializes in pulmonary diseases. He said that Roy's chest x-ray showed he had some spots on the left lung but that they looked old and looked calcified. He wants Roy to contact KU Med and have them send the reports on the chest xrays they had previously taken just to make sure the spots were old. He also thought Roy had been a smoker because of the chest xray and because of the medicines he takes for breathing. But after talking and the doctor doint a little more checking, he said Roy's lung problems were strictly asthma and bronchitis related. His lungs work fine but it is the air ways between the lungs that constricts. So the doctor sent us back over to the pulmonary doctors for a 6 minute hall walk where they monitor his oxygen and heart. So the nurse took Roy in a wheelchair out in the hall, took his heart rate, had him hooked up to a monitor and had him walk up and down the hall for 6 minutes. Then she sat him back down and checked his oxygen and heart again. After the walk his oxygen level was 95% and his blood pressure was really good. The nurse said that everyone would like to have these numbers.

So tomorrow, he has blood work done at two different places, and then we have other appointments and a meeting with the SCT doctor. Our last appointment is at 3:30 so it will be 5 or so before we get home.

So right now, it sounds as if everything is going as it should.

Monday, December 21, 2009

Monday, Dec. 21. What a busy, long day again. I guess we should be used to that by now. Roy's first appointment was at 6:50 for a CT scan of his neck and head - they were checking out his sinuses. Then at 11:00 he had an appointment to have the port removed that he has had for 3 years and another line put in; this one has 3 extensions to it. It took a little longer than planned as they had to give him a bag of platlets before they could start. His counts were not low enough if it had been just a regular appointment but the Invusion Therapy folks have different guide line levels. He didn't get in to get started until noon and it was about 3:30 when they were done. After that, I had to take him down to x-ray to have them check it out and see if it was in properly; then back up to infusion therapy. We left there around 4:30. Tommy had been there all day doing his appointments so he brought us home so we didn't have to ride the shuttle.

Tommy checked into his motel and took us by the RV to drop off some things and then we went out to eat. We found a great Mexican restaurant - not the one we were starting out for, but it was sure good and I am sure stuffed.

The site that they did Roy's line in, is really sore this evening. Probably all the meds they gave him when they did it has worn off. He took some pain pills and I told him to take some more before he goes to bed. I think we are turning in early as we caught the 6:06a.m. bus this morning and will catch the 7:06 bus tomorrow. Tomorrow shouldn't be as long - we only have appointments scheduled in the morning but I won't bet we'll only be there in the morning.

I attended a class this afternoon while Roy was getting his line that teaches caregivers how to take care of the line and change the dressings. I have to take it at least one more time and Roy wants to do it too, so I think tomorrow afternoon we'll do that. They do them at 10:30 and at 1:30 each day. Since Roy has three lines, I need to get real good at it. I'm not worried about the dressing changes until he has had his stem cell and will be coming home. I really could wait and go again on how to flush the lines and such until he gets ready to come home but Roy wants to go and I don't want him to do that when he gets out of isolation from having the stem cell so we will probably do it tomorrow.

Tommy doesn't have any appointments tomorrow but does have some Wednesday and we have a full day Wednesday also.

Sunday, December 20, 2009

Friday, Dec. 18 was a busy day beginning at 8:30 a.m. for blood draws and ending after 4p.m. Roy said they drew 10 vials of blood and he was hoping he had some left. After the blood draws, we saw the leukemia doctor who went over the results of his bone marrow biopsy a few days before. His blasts (amount of immature red cells) was at 1%, which is good, but the biopsy also showed there were still signs of the disease, but the doctor was very pleased and agreed with the SCT doctor that we needed to go ahead with the transplant. Roy then had a chest x-ray, saw the infusion team about his port, went to a meeting that told us what to expect with the transplant, and I think we had a couple of others but can't remember right now. Monday, the 21st, Roy has to be at the hospital at 6:50 to begin another long day, not as many appointments, but each will take longer. He begins with a CT scan of the head/neck area, then he will go have the port he has now removed and they will insert a cath. It needs to be larger than the one he has now as the bone marrow is larger than the blood and platletes he gets. The doctor said the bone marrow is sticky and would clog up the line so it has to be larger to let everything flow like it should. Then we visit with a social worker in the SCT department. At some place and time this week, we have to go to a class for me to learn how to flush and keep the line flowing clear when he gets to come home.

The class we had Friday afternoon said that Roy will have at least 3 days of really, really strong chemo and it could be a day or two more - it will just depend I suppose on how he reacts and his counts. But the first day of chemo is a -7 day and they count down to "0" and that is the transplant day and then they start counting +1 on up. He has to stay in the hospital until his WBC is between 1.5 and 2 and this will probably be about 28 days. After that he gets to come back home (RV) but will go in for blood work about every day and we have to stay in Houston at least another 100 days, it could be more, it will all depend on how he is doing.

The SCT doctor said they will be doing a bone marrow transplant and not a stem cell, which is from the blood. The doctor said there is not as much rejection with the bone marrow as with the stem cell. This will be harder on Tommy but hope he doesn't mind.

Dr. Siurea, the SCT doctor, told us the other day that Roy would have a bone marrow biopsy done on the 24th, but it is not on the schedule so I am sure they will be adding it on. Roy checks his schedule 3-4 times a day as they can add things all the time. It sure makes it nice that we don't have to wait around at the hospital for them to make all the appointments but can come on back to the RV and check the computer.

Thursday, December 17, 2009

Thursday, the 17th. Roy had an appointment with his SCT doctor this morning. It was a busy and whirlwind meeting. We knew that Roy had 1% blast but the biopsy still showed disease. The doctor said we needed to do the transplant ASAP (his words). So, he wants Tommy back down here for testing on Monday and then appointment with him on the 22nd. Roy will have another bone marrow on the 24th; enter the hospital on the 27th; Tommy will be back on the 28th and will enter the hospital to have his bone marrow harvested. This will be done under a general anesthetic but he will be able to go home that evening. Roy will then have the transplant on Jan. 5.

If the biopsy on the 24th shows that Roy is not in remission, he will have another round of chemo to get him back in remission and then do the transplant. The doctor said they would freeze Tommy's marrow until ready to give to Roy but we are thinking positive that Roy is still in remission and will be ready to go. The chemo they give him prior to the stem cell will be really strong - as best I can remember it will be for three days so that way he will have almost a week to rest before the transplant. So if everything goes as planned, he will most likely be in the hospital all of January.

We will be going to the hospital about every day between now and then for testing. The doctor said that all the tests he had done at his first meeting will be done again and possibly others done as well.

Friday, December 11, 2009

We had a good doctor's appointment today. Roy's counts are going up and his blasts were 1%. The leukemia doctor said he didn't consider him in complete remission until his counts were higher but he was very happy that the chemo worked and that his blasts were almost nil. So for now he will be going to the doctor every Monday, Wednesday and Friday and he would see us in a couple of weeks. We will be talking with the SCT coordinator to tell her that he his clean right now and what about the SCT. Tommy was here this weekend and got his blood work done for the HLA typing. The doctor said that even though the KU Med had done it, MDA needs their own but we don't need to worry because once a match, he would always be a match. The nurse said we would know in about two weeks.

Also, Roy will probably have a consolidation round of chemo to keep him in remission. If they can't do the SCT for several weeks, Roy could have a couple rounds of consolidation chemo but we won't know that for a while.

But for now, things are going good.

Wednesday, December 9, 2009

This is Wednesday, Dec. 9 - rent day. When the doctor saw Roy yesterday, he told Roy that he was going to send him home after the bone marrow as he could wait for the results at home just as well as in the hospital, so in the middle of the afternoon he came home. His next appointment is Friday morning for blood work and then see the leukemia doctor at 2:40 with the results and the next plan of action. If he is not in remission I am sure they will put him back in the hospital for more chemo and even if he is in remission they might put him back in to do a consolidation round of chemo, 3 days, just for good measure. Then we will wait and see how long it will be before he can do the stem cell.

So, today I plan on running the sweeper and doing some sewing. The sun is shining so I probably should wash the sheets so I can hang them out, but I will have to wait until Roy gets up. The park has clothes lines for us to use. Saves quarters that way.

Monday, December 7, 2009

Roy was supposed to have a bone marrow today but the nurse said it didn't get moved from out patient to in patient. The doctor was not very happy about it. So the doctor said they would do it first thing in the morning and would have a preliminary result by afternoon. If it comes back that he is not in remission, they will keep him and start chemo again. If he is in remission - well, he didn't say. Roy's WBC has started to go back up but he is still on antibiotics; his hemoglobin was low enough this morning that he is now receiving a bag of blood but doesn't need any platlets today.

I am afraid this is going to be a long haul for us but at least we have a nice place to stay.

Tommy and Cindy will be here the end of the week and Tommy will have blood work to get him typed for the stem cell. That will be a good break for Roy. Then in a couple more weeks Colleen and the girls will be down for several day. I told Colleen I would take them to the Galleria Mall for them to buy their Christmas presents. I want to check and see if the Metro train runs to the Mall as I would like to take that once while I am here. If the weather is good, the girls want to go to the beach and Bailey wants to get a suntan but I think that will have to wait until spring break for her to do that.

I have been getting quite a bit of applique done and need to get another couple blocks ready for my sewing bag.

I went to the grocery store this morning - it is sort of an international store - really neat. I enjoyed just walking around looking at things. Some of the vegetables I had never heard of.

Sunday, December 6, 2009

Good morning everyone. It is misty and cloudy here in Houston today. I didn't get to the hospital until after 1p.m. so probably won't be staying too long as I like to get home before dark. I also need to get groceries when I get home. I did laundry this morning and ran the sweeper before I caught the bus to the hospital.

Roy is feeling about the same. The charge nurse came in and talked to him about the "fall" precaution that is posted on his door. She apologized for what the night gal told him and explained why they do the precaution and the different levels. She also asked me to put on a gown when I come in or if Roy goes out he has to put on a gown. That is the standard for this floor and that is okay. They just came in and asked Roy how much he had had to drink today and it really isn't much so I don't know what they will do. He is on a bag of antibiotic right now. Tomorrow he is going to have a bone marrow so don't know if he will get to come home after that is over is not. Guess we will just play it by ear.

Saturday, December 5, 2009

I didn't come to the hospital yestereday, Friday, as the weather was yucky. Rain, snow, wind and just miserable. I thought I left this weather in Kansas, but today is beautiful. Still cool, but sunshine and no wind. And of all days to run out of propane it was last evening about 8:15 so the RV was rather cool (cold is a better word) this morning when I crawled out of bed. The first thing I did was undo the two propane tanks and take them to U-Haul to get filled up. I got them hooked up, turned on the furnace, hooked up the water hose that I had undone so it wouldn't freeze last evening, turned on the hot water tank and then ate breakfast.

Roy is doing okay but they are going to keep him until the first of the week. At first he thought he was going to come home tomorrow, that is what the first person told him, but when the doctor got here he said not tomorrow but the first part of the week. The doctor said they would do the bone marrow here in Roy's room so depending on what time they do that he might not come home until Tuesday.

Roy's brother and his wife are coming down the end of the week. Tommy will be having the blood work done to get him ready for the stem cell transplant. The hospital has sent two kits to Tommy but he has not received either one so since he is going to be here the transplant coordinator said he can have it done here.

I need to do laundry when I get home from the hospital and go to the grocery store but I will probable do that tomorrow. Should run the sweeper in the RV also but I might not do it tonight.

Thursday, December 3, 2009

Today, Wednesday, I am at the hospital - again. The doctor said Roy's liver enzymes were a little high so they were going to change or add a different antiobitic. I forget which he said. So a little later, a gal came in and started an antiobitic that he has been on and will do a different one later. Then a gal from the lab came in and drew several vials of blood. She had to poke him since he had antibiotics running through the port and they couldn't stop that.

When Roy got up on the floor Tuesday evening there were only two patients on the floor. When I was here yesterday there were five; today there are about 15 I think. They have been very busy here. A worker told Roy that this floor was here; that they just remodeled it but they are going to be adding 12 more floors to the top of this building. There is so much building going on in this complex it is just amazing. And the grounds/landscape workers are busy all the time. There are roses blooming outside and lots of other flowers blooming. Someone told me that if the flowers start to fade, the workers replace them with blooming flowers. I don't know what will happen this evening as it is supposed to get to 29*, with possible ice and snow tomorrow. If that is true, I told Roy I would not be here.

Roy is supposed to have a bone marrow next Monday so if he is still here I am sure they will do it here. We know he will be here at least through tomorrow and if the weather is bad I'd just as soon they keep him another day. They probably will as long as they have him on antibiotics and with his liver enzymes being high and still running a slight fever.

Wednesday, December 2, 2009

Today, Dec. 2. Roy started running a fever yesterday morning and we had instructions from the very start from the leukemia nurses and doctor to go to the emergency room immediately and we did that. They started giving him IV antibiotics to get the temp down, did a chest x-ray which came back fine, took some blood from his arm to get some cultures - which have not come back yet - and took blood from his port for regular blood work. His platlets and RBC were't too bad since he had had transfusions the evening before but his WBC was .3 - really low and that was the reason for the fever.

I left the hospital about 6:30 and drove him in a driving rain which wasn't much fun since it was dark, wasn't too sure the way to go at first and driving that big truck, but I made it without any trouble so I can do it. I caught the RV shuttle this morning and that is much easier as it is very expensive to park here. I was here about 7 hours yesterday and it was $11. Can't afford too much of that very often.

They finally got Roy to his room about 11:30 and he is on the 12th floor which just opened yesterday. He was the second patient to get on this floor. The rooms are big, nice and very clean. He almost has as much room here as in the RV.

The doctors said he would probably be here a couple more days at least but that will all depend on if his temperature stays down. This was fully expected but it still upsets when he he has to come but after he is here and starts feeling better he is okay with it. Everyone here is very, very caring and nice.