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.