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.

Monday, November 30, 2009

Monday, Nov. 30 has been spent all day at the hospital. Roy had blood work at 7:45 this morning, saw the nurse who said his counts were steady but needed to have platlets and blood both. The appointment for these were at 1p.m. so after talking to the nurse we went and had lunch. The transfusion unit was running late as they were really busy but we got in at 2p.m. So they gave him the benadryl and tylenol and started the platlets about 2:30. It takes about 45 minutes for platlets to run and then he had to have to bags of blood. It takes two hours for each bag to run.

Roy had an appointment Wednesday and got a bag of platlets but no blood. He didn't have another appointment until Saturday morning and the nurse said his counts weren't low enough to have a tranfusion of any kind which kind of surprised us. The nurse Wednesday told us that the orders for Saturday would be "if his counts were a certain level" he would have to or not have transfusions. The nurse today told us if she had written the orders he would have had transfusions. Roy started feeling better after the first bag of blood so he should be good to go for a couple of days. We don't have to come back until Wednesday and the nurse said that today's transfusions should get him through to the end of the cycle. He sees the doctor on the 9th so we will find out how things are going now.

We asked the nurse if there was a preliminary result on the bone marrow he had last Wednesday and she said it was early but that his blasts were still high. But she said this was really early so Roy will probably have another bone marrow and then we will see what way they go but I would imagine he will have more chemo. The doctor told us at the beginning if the blasts were what they wanted that they would give him move and even when the blasts got to what they wanted they would probably give him a short round of chemo just to keep him in remission until they would do the transplant.

Monday, November 23, 2009

Monday, 11-23. We had a good weekend. Rained all day Saturday so we didn't do much. Yesterday I went to the grocery store and washed the sheets and hung them out. The weather was perfect yesterday.

Today Roy had blood work and saw a nurse to see how he was doing. We fully expected him to have to have some transfusions but his counts are holding steady so they didn't have to do anything so we didn't have to stay at the hospital as long as we thought we might have to. We go back Wednesday for blood work and then a bone marrow test. The nurse said he might have to have platlets prior to the bone marrow but we will see. This test will just be a preliminary test to see if his blasts are doing anything at all. This will determine the next plan of action.

Life is good and we are enjoying the warm weather.

Thursday, November 19, 2009

Finally made it in to the blog - wouldn't take my sign-in name and password. Roy finished his platlets at 11:00 p.m. last evening and was getting cranky with the nurse. The nurse told us that security had a bus that would take us to the Metro bus stop. When we got downstairs the bus was there and it delivered several hospital workers to parking lots and then took us to the Metro bus stop. When we got there the bus we needed was there so we didn't have to wait on that and we got back to the RV park about 11:30p.m. The bus stop is just a few feet north of the RV park so we didn't have to walk far.

Roy checked the MDA website for his appointments and they have them listed through Dec. 6. He has to go in for blood work at 6:45 tomorrow morning so that means we will have to catch the 6:06 bus. Then we see the nurse about 8:15 to go over the counts. By being that early if he needs any transfusions we won't have to wait until late, late evening to get them. I will probably take a nap this afternoon.

Roy has a bone marrow biopsy on the 25th so we will see how things are going at that time.

I need to get some more handwork ready as I got one block finished and another almost done yesterday. I have to have something to do while waiting. Sure wish Roy enjoyed reading or something to help him pass the time.

Wednesday, November 18, 2009

Wednesday, Nov. 18. Roy had an appointment for blood work at 12:30 and saw the doctor at 3:40. His platlets were low so the doctor wrote an order for him to get a bag of platlets. We figured they were low because when he took the bandage off his arm from the blood test, it was loaded with blood so we knew it wasn't clotting correctly. They weren't able to get him in until 8:00 for the transfusion but it was after that and by the time they got his port accessed, gave him the Tylenol and Benedryl, they didn't get the platlets started until 10:00p.m. We are now going to have to ride the Metro bus back to the RV park or take a cab.

We will be back Friday for more blood work and if the chemo has started to work Roy will probably need blood. They have him scheduled for a bond marrow on the 25th and at that time perhaps we can tell if the chemo has started to work or not. Depending what the test shows will determine the next course of action.

So far, things are good. We have met a lot of people here that are going through the same thing. In fact we were talking with a lady and gentleman from Arizona and he also has AML which started out as MDS (myelodysplatic syndrome). The man is schedled for a SCT after the first of the year.

Monday, November 16, 2009

Roy got out of the hospital after lunch today - Monday. He is feeling good so hope that continues. His counts have remained pretty constant since he has been here so we will see how they are in about a week or so. He has blood work and doctor's appointment on Wednesday and then will have a bone marrow about a week from today. Then we will find out how things are going.

The weather has turned cooler down here so will probably have to turn on the furnace for this evening. I am sure it won't last that long though but that does mean I can wear a sweater tomorrow.

Saturday, November 14, 2009

This is Saturday, Nov. 14 and Roy has had three days of chemo and is doing great. For lunch he is eating sweet potato fries and a bar-b-que sandwich. Here at the hospital, when the patient orders, the food arrives in 30-45 minutes and it is hot. They don't bring all the trays up at once, but individually. I would imagine one reason is that with cancer patients they aren't all hungry at the same time. Also, they have a guest menu which is good.

I rode the Metro bus this morning at the shuttle from the RV park does not run on Saturdays or Sundays. the bus stopped about 5 or 6 blocks away and I made it to the hospital okay. Now it will be a challenge to get back to the bus and I want to make sure I do it before dark.

Roy talked to a fiend of his in Topeka last evening and he told him that he possible could be here in April when his friend and his wife come back for her six month check-up. At least he is realizing we won't be going home real soon.

Colleen and the girls are driving down the week between Christmas and New Years. They will be bringing my car so I will feel more like driving around. I am going to get out tomorrow and go to the grocery store and things so we'll see how I get along.

So far it is going good. Hope things still continue to be good when his counts drop. They will do a bone marrow two weeks after he started his chemo to see if his blasts have dropped. That way they can tell if what they gave him is working. At 21 days they will do another bone marrow test. If he is below 5% blasts they will give him another 3 days of chemo and then will give him time to recover before getting the chemo for the stem cell. If the blasts aren't low enough, I think they said they will give him another five days of chemo. Of course, this will all said before Roy started treatment and possibly things could change.

Thursday, November 12, 2009

Roy began his chemo last evening. He is taking Cytarabine (Ara-C), a chemo, and Clofarobine, perhaps. He is in a study so maybe he is getting this or perhaps a placebo but we or the doctors don't know. It is approved for children but no for adults but the study is to see if it helps the Ara-C or has no help. He will be here until the 16th or 17th depending on it all goes. Then at 14 days he will have a bone marrow to see if the chemo has helped because at that time there should be some signs if it is working or not. They will do another one at 21 days and the target is to be in complete remission at that time. If after 21 days and he is in remission I don't know how long it will be before they start chemo again for the stem cell. If he is not in remission, they said they could do another round and possible use a different type of chemo. The doctor has told us that leukemia is a bad disease and treatment can be lethal. Right now Roy is feeling good and everything is going great. The folks we met from western Texas left the park this morning but will be back the end of the month for his surgery.

Friday, November 6, 2009

Roy had blood work this morning, counts were lower but not low enough for a transfusion. We also saw the doctor and he talked to us about a clinical research study for folks over 55 with AML that has returned after treatment. The research nurse also talked to us and gave us a 15 page article to read this weekend. The study is giving patients cytarabine, a chemo, and Roy has tolerated this well and it has worked for him, and then combine this with clofarabine which is only FDA approved for children. So in this study he will receive cytarabine and either clofarabine or a placebo. The hospital won't know which he gets.

On Monday we go back for blood work and possible transfusion. Then Wednesday we go back to see the doctor and to be admitted for treatment. The treatment is for 5 days and then after 14-21 days they will do a bone marrow biopsy to see how he has reacted. If his counts have not gone down they will stop the study and start him on some other type of chemo. If his counts have gone down to a certain level, but not all the way, he will have a consolidation round of the same cytarabine and the additive, but this will only be for 4 days. So right now, it looks as if we might have added another month on to our stay. I am going to be wishing for a washer/dryer in the RV so I don't have to collect quarters. Oh well, I get my exercise going to the laundry room.

Wednesday, November 4, 2009

Well, we had the appointments today. They had trouble stopping the bleeding from the stem cell so we knew his counts were low but hoping he was still in remission. While he was seeing the doctor this afternoon, they called and said the blasts were 31%, 5% is remission, so out of remission. We go back Friday for blood work and to see the leukemia doctor again and he will tell us his plan of action. He is thinking trying a combination of different chemos that aren't too strong and get in back into remission. As soon as he is in remission he will see the SCT doctor and decide when he is going to be able to start that part. Looks like we will be in Houston for some time but that is okay if we can get him well.

The weather is great and have met some nice folks and all are going through cancer problems. MDA is a wonderful hospital and everyone is very, very nice and helpful. It is a good thing we can read which elevator to take to get to the appointments. Most of leukemia is B elevator, 8th floor. I have that down pat.
We had our first day at MDA yesterday and will have another long day today, the 4th. We saw the transplant nurse first and he went over Roy's 8 page questionnaire/history; then we saw the SCT doctor and he explained things very well, took wonderful notes, asked questions and told us what he felt could be done. He felt Roy was a good candidate for SCT as he was in good health but first they would have to decide if he was still in remission as their threshhold for remission was not 6% as KU told him but 5% so we are seeing a leukemia doctor today. MDA already had a bone marrow biopsy scheduled for this morning and the SCT doctor said we should have preliminary result in 48 hours. Depending on if Roy is in remission or not depends on the first course of action. When they beging the SCT we will be in Houston a minimum of 4 months so I would imagine it will be closer to 5 months for us but that is okay as we have a good place to stay. The RV park is not geared to "Winter Texans" as such, i.e. no activities but since the park is about 75% MDA patients they don't need the activities as most do not feel like getting out and doing things and cannot be around other much of the time.

MDA is a huge complex and our appointments were on time. We were given a schedule of when and where to go, i.e. elevator B, 8th floor and then the name of the area, or elevator C, 3rd floor and the name of the area.

Roy has a list of people that are his SCT team and we have cards with phone numbers and emails on how to ready them so as long as he is here these are the ones we will be working with. If Roy is out of remission, we will had a leukemia team to these folks.

The financial gal talked to us and gave us a figure for the cost. For a sibling match, the cost is $263,000; if they had to go the national donor route to locate someone it is $500,000. I am sure thankful for insurance. She said she had to submit everything for approval and I asked what are the percentages of not being approved and she said it will be approved that this was just a formality and paperwork.

Tuesday, November 3, 2009

Well, Tuesday the 3rd has arrived and I am up early eating breakfast and wondering what the day will bring. There is a couple up the row from us and they have been here since August. They are from the Abilene, Texas area and he has lung cancer. His doctors caught it early and sent him to MDA. He has had chemo and the tumor has shrunk enough that they will be doing surgery. He said that we will really like everything at MDA and that Roy is the right place. Sure wish he had consented to come early but that can't be undone so I need to stop thinking that.

When we got here, Roy only paid up to next Sunday as we don't know what the doctors will say about his health. If they tell us they want to do the stem cell we will then pay for longer and have no idea how long we will be here then. This is a nice park, not fancy by any means, but quiet and very secure. Have a security fence all the way around with 3 rows of barbed wire on top of that and have to have a security code to get in.

The folks that we were talking to yesterday said that about 75%of those here are at MDA. I have seen tags from Colorado, Tennessee, Georgia, New Mexico, and Texas. I am sure there are more but the way RVs are parked I am not able to see the license plate and not always out when the car/truck is parked in front. I saw a lady pulling two children in a wagon yesterday and she had a shirt on that said something about cancer on it and I'm wondering if they might be going to the Children's Hospital. We drove over there yesterday just to get an idea where it was and the hospital complexes are huge. The buildings all have names, their own parking garages and entrance numbers. We are going to entrance two and the Craig building on MD Anderson Parkway and Holcombe. Sure hope the shuttle guy knows where it is - I am sure he does. I have the shuttle schedule posted on the frig door so I don't lose it.

I have my sewing bag packed, am taking along a tape recorder in case I need it, a note pad to write on and will be wearing my walking shoes.

Need to think about getting ready. It is 5:50 and the bus leaves at 7:05 and we have to be there at 7:30. The bus doesn't get there until 7:37 but didn't want to take the 6:05 bus. Roy's appointment is at 8:30 and the paperwork said to be there an hour early but we figured this would be close enough. He has his questionnaire all filled out so I guess he is ready. I read through it and some of his answers I don't think he is being quite honest with himself but I didn't say anything. i.e. pain in his neck, ability to work, depression or worry. But hopefully I'll be there to shake my head and put in my two cents worth.

Sunday, November 1, 2009

We left Tommy and Cindy's place around 8:30 this morning and got to the campground about 1:15. We checked in and found our parking place. Roy got us in and unhooked pretty easy even though the spots were smaller than he is used to parking in. And it was backing in at that.

I did two loads of laundry before getting dinner but now have the dishes and everything done so am setting and doing handwork. Since it got dark early Roy is shutting up the RV like he thinks it is bedtime. Not yet.

We will just goof off tomorrow and then Tuesday we will go to MDA. His appointment is 8:30 but has to be there an hour early. The RV park has a shuttle that runs Monday-Friday about every hour so if they put him in the hospital at any time I can take the shuttle back and forth. They also stop at a Target and a grocery store so if we are here for any length of time that will be great.

Roy only paid for a week and not a month. We didn't want to pay for a month since we don't know what the doctors will do and say.

The weather is wonderful and is supposed to be this way the rest of the week.

Saturday, October 31, 2009

Today was a beautiful day here in central Texas. Cindy and I went to Quitman, Tx. to Stitchin' Heaven quilt shop. I order BOMs from them so was nice to see the shop. I also bought a couple of patterns. Roy and Tommy met us at Hillsboro at Black Eyed Pea for dinner so I had a wonderful day.

Tomorrow Roy and I will be heading to Houston. Check-in time at the park is 1:00. It should only take us a couple of hours to get there so won't have to leave too early. His appointment is Tuesday, the 3rd, at 8:30 so we will start the procedure of what will be done for him, or if anything can be done other than just do blood work every month or so and watch and wait to see what happens.

Tuesday, October 27, 2009

Roy is still feeling good and I hope it continues until he gets to M.D. Anderson next week. I reread my last post and there was an error. His appointment is next Tuesday, Nov. 3 @ 8:30; we are leaving China Spring on the 1st. Roy hasn't been doing much since we've been here but we had some excitment Saturday evening. My SIL and I had been out for lunch and went to the grocery store and then just before supper (or dinner, depending on your locale) Tom came by and said he was taking Cindy to the ER as she was having arm pain and was nauseous. They ruled out a heart attack but her BP and blood sugar (she is a diabetic) were very high and her potassium was low. So they kept her overnight and yesterday, Monday, they did a heart cath and found 60-70% blockage in an artery so put in a stint. The nurse told Tom that the artery was called the "black widow" one. She should be coming home today. She and I had planned on taking a road trip to Quitman, Tx to a quilt shop but that will have to wait.

Yesterday, it rained, rained and rained some more. It started during the night, stopped for about an hour in the afternoon and then started again toward evening. This morning, the sun is shining and is beautiful. I haven't been out but I am sure it is cool but at least the sun is shining.

I plan on washing the sheets today as soon as Roy gets back out of bed. I did the other laundry in between showers yesterday.

Life is going good right now. Will keep everyone updated as life goes on. I'm doing some hand sewing, English Paper Piecing, for a quilt shop in Topeka and will send it to them when I am finished. Then I will have a shop sample to sew for a quilt store in Emporia; I'm just waiting on the fabric and pattern. See, I can keep busy no matter where I am.

Friday, October 23, 2009

We made it to China Spring yesterday afternoon and went by the RV park at Waco Lake. They were closing down the camp sites because of all the rain they had been having. The lower loop was already closed and they were closing down the rest of the camp because the lake was going to be rising 8' over the next 24 hours as they were having to let water out of other lakes so they wouldn't flood homes. They have had a lot of rain lately - the creeks were running full and the ponds were overflowing and water standing in the fields. So we came back to Tommy and Cindy's place and are parked in their driveway. We stayed in the RV instead of in their home - just nice to do what we want in the evening and get up and not bother others.

Tommy went to work this morning - early - and he disturbed the neighbor's dog. Roy's phone just rang and it was Tommy and Roy asked him if he was at work and Tommy said no, he was home. Roy said why didn't you just knock on the door instead of calling.

Roy found out he has an appointment at M.D. Anderson for Nov. 1 @ 8:30, so we are going there Sunday and that will give us a couple days to get situated. He has to be there at 7:30 so we need to find out how to get there. Even though it is only 2.5 miles from the park I still would feel better if we have an idea of how to get there. The nurse he talked to said they would be working with him for about 4-5 days - I would imagine this would be going over everything and having a physical and all. I guess we'll find out when we get there. Sounds encouraging that they will do the SCT.

Tuesday, October 20, 2009

We will be leaving for Houston tomorrow morning. Roy talked to the hospital (MD Anderson) yesterday and again today. The lady he talked to today said the doctor was looking at his records but was wondering if he had seen a doctor since August. Roy told them he saw them in September and had a bone marrow biopsy the 5th of this month. MDA didn't have them so Roy called KU Med and got a voice mail and told the nurse that she needed to send this to MDA. Hopefully they did. I have been telling Roy there is no need to wait until they call with an appointment, especially if they would need him there in a day or two. So this morning he said we just as well go on down, if I wanted to. So I got busy and finished putting things in the RV. I called the RV place and told them we wouldn't be there until Friday instead of Wednesday like I first told them. I've got a list of things I need to put in the RV in the morning and need to check my clothes to see if I have everything. Don't know whether to take hot or cool clothing so I guess I'll take both. I'll have to make sure that Roy has what he needs. Whenever he's been in the hospital at the KU Med he always wears gym shorts and I asked him this morning if he had those out yet to take and he said he would have to look for them. I know he hasn't worn them for about 10 months and if you could see his room you would wonder if he can find them. I did buy him some new sweat pants and have those in the camper already; also bought him some new socks. I figure he can do the rest.

I'll let you all know how things are going for us in a day or two.

Sunday, October 18, 2009

I guess we aren't leaving for Houston today so I am doing laundry and quilting. At least I will have all the laundry done before we leave and not have to take too much with us. Roy seems to be feeling okay but just seems as if he can't get to making decisions real fast or easy. As I've said before, I hope Roy realizes how sick he is going to be if they do the tranplant. If he is not eligible for the transplant, I do hope they will give him some hope of what he can do to stay in remission. And I'm also going to ask them to give him something for depression. He doesn't think he needs anything but when you sit and do nothing or sleep I think he needs something.

Saturday, October 17, 2009

Roy aired up the tires of the RV this morning so I don't know if that means we are leaving tomorrow or not. But I have my clothes, most of my sewing supplies and a few groceries loaded so I am about ready. I'm going to try and do laundry but will take our dirty clothes in a garbage bag and do it later. I finished binding a quilt and got one quilted and delivered today. If we are going to be here for a few more days I will put another one in the machine and get it done.

I am thinking there might be something wrong with Roy's blood count as he has a red rash on his face. He says it doesn't itch or anything but looks like it could. He has had this before when his counts start going down. I think we ought to go on down and wait for the hospital to call with an appointment but he wants to wait, but by going down we could enjoy the nice weather. I don't see any reason to wait but I can't talk him into doing that. Guess I'll do what he wants since this is his call anyway.

Thursday, October 15, 2009

I called a couple of my clients this evening to ask if they needed the quilts I have here that I need to quilt before leaving for Texas. I have one - a small one - so will try and get it done tomorrow. I am working on the binding on a quilt and going to try and get it done before we leave. Hopefully I can talk Roy into leaving Sunday. I would like to go through Tulsa and see my brother and then on down to Houston.

I just hope that if M.D. Anderson does do the SCT, that Roy realizes he is going to be very sick. He was told this over a year ago at the KU Med Center, but sometimes I don't think he hears it all. If they won't do the SCT, hopefully they will give him a regemin(sp) to follow. Sure wish he had done this three years ago but he wouldn't. I asked him many times. I think it took the doctors at the Med Center leaving and the scare that he might be out of remission last month when his blood counts went so low. He hasn't had any blood checks for a week so hopefully they are going up.

When he was diagnosed, he just sort of went into a shell and I have had a terrible time getting him to do anything, even going to visit his grandkids. He always says, what if I get sick while I'm gone, I can't think that far ahead and more and more.

Hopefully we will hear from the Hospital tomorrow and will have something more concrete to plan with. I'm ready to go to Texas now and wait for the Hospital to call us there. I think we need to be there when they call with an appointment instead of driving like mad to get there when they call needing to see us in two days. I'll still work on him.
I am just new to "blogging" but I need an outlet. Three and a half years ago my husband was diagnosed with AML, Acute Myelogenous Leukemia, and our life changed, but I can't say whether it was for the better or worse. There have been so many ups and down in the past 3 1/2 years, chemo, in remission, monthly checkup, trip to Alaska, out of remission, back in remission and on and on. Right now he is in remission and we are going to be going to M.D. Anderson for him to consult with them on having a stem cell transplant (SCT). I have made reservations for us to stay at an RV park 2 1/2 miles from M.D. Anderson and we are to check-in Wednesday but I cannot get him to say when we are leaving. I guess I'll just get the RV packed and be ready to leave on a moments notice.

Right now he is feeling good - maybe not his mental attitude - but hopefully that will improve, but I doubt it. So I do a lot of making quilts and quilting on my longarm machine for others.