Trials and tribulations of a patient in search of a bone marrow transplant

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Wednesday, June 18, 2008

Great News

Got the results back from my latest bone marrow biopsy and it reported 100% donor cells and NO sign of cancer cells. Needless to say that was some very welcome news. The doctor's are still amazed that I went from nearly dead to good enough to go home in a weeks time. I still have something going on with my mouth and throat which doesn't seem to be clearing up and is starting to affect my eating. Otherwise I've put a little weight on eating real food again but I'm only 170 pounds so far with terrible muscle atrophy.

Sorry I haven't been keeping up with the blog. The last chemo made my vision fuzzy and it's hard to read. This happened before and it cleared up in a few weeks along with hand tremors. I hope it clears up soon.

The Best News Yet

Steven had a very good report on his bone marrow biopsy. It showed 100% donor DNA, which means the new system has implanted. And there are no visible malignant cells for the moment. The doctor seems pleasantly surprised and the family is very happy.

The donor's system is churning out white blood cells, which are in a normal range now for the first time in at least seven months, and probably long before he was diagnosed. The red cells and platelets are slower to come in, but they should start soon.

Steve needed to tank up with two units of fresh blood on Tuesday. He is having rather bad throat and mouth sores still, in fact they have gotten worse. It makes eating, swallowing and talking difficult. But he is stopping the $500 a spit mouth rinse which didn't seem to be helping and starting an experimental mixture with L-Lysine, basically grinding up a tablet and mixing it with liquid, then swish and swallow (supposed to taste really bad). Plus some non pasteurized yoghurt. We'll see how that works. His other main problem is fatigue, which is to be expected, but it is not nearly as bad as some we've heard about.

They are still having a hard time stabilizing the Prograf levels. One day too high and the next too low. But doctor Agura wants to keep it on the low side to allow the donor cells to work their magic so he cut the dose back to a minimal amount. The team is monitoring Steve closely.

Life is good!


Tuesday, June 10, 2008

Home Sweet Home...Finally

Steve is finally out of the hospital! He was released on Friday June 6. He couldn't wait to get out and was packed and ready to go when I arrived early afternoon. We said thanks all around and took lots of edible goodies for the staff on 4 Collins.

I encountered Dr. Agura in the parking lot on my way into the hospital. He said Steve was doing well, very well. Then he looked straight at me and said, "It's a miracle." Knowing what bad shape Steve had been in only a few days before, no one could believe how well he was doing. And that he was going home, home, home.

Steve had a good week-end at home with Lisa and the children. Then because of a "black mold problem" that was opened up just before he walked in the door, he had to come to Fort Worth for a few days until that is cleaned up. The doctor said not to go back for at least a week and to set up an air cleaner.

Yesterday was the first visit back to the clinic. No visible blast cells. Steven needed blood and magnesium. He still has his PIC lines to facilitate blood draws and transfusions. His Prograf levels were too high, more than double the target level, but that is the problem with regulating dosage with oral meds. Dr. Agura was so pleased when he talked to Steve; he said with reasonable caution, he wasn't placing any restrictions on Steve as far as public places. Just unbelievable. And optimistic. They couldn't do the bone marrow drill yesterday, but that is set up for Thursday with results back about a week after that. Then we will know more surely what is happening. We stopped at the pharmacy downstairs to pick up a six day supply of a prescription for a special mouthwash since Steve still has problems with the back of his throat. They told us it was expensive, but nothing prepared us for the $5600 price tag for 6 days of two spoonfuls a day. Steve said that is almost $500 per spit down the drain. Unbelievable. It better work.

On the way home, we went by Northpark to The Sharper Image to get a room sanitizer to deal with the above mentioned mold problem. Sharper Image is closing, all of them, everywhere. Everything is on sale and it should last about a month, but already it's a bit picked over. So if there is something you were dreaming of, now is your last chance.

Steve is sharp as ever, eating reasonably well, no nausea or such problems, although the throat is stil bothering him. He is sleeping well and has more energy than one would have expected. He has to eat a lot to put back on some of the weight he has lost. He hasn't weighed this little since Junior High. He's working on it. The doctor is suggesting butter, sour cream and milk shakes with peanut butter and jelly sandwiches on the side.

As you can imagine, we are cautiously optimistic (emphasis on optimistic). We know the road will probably not be smooth, but we can see the road now. Although he is not strong, Steve is not acting like a sick man. He is ready to get on with life.

And once again, we think of his wonderful donor and send thanks his way. Steve's nose is dripping a bit, not normal for him, and we can't help but wonder if his donor had allergies.

I hope Steve will pick up his computer soon and take over this blog so I can sign off shortly and turn it over to him! Thanks to everyone for all the good wishes sent his way.

Wednesday, June 4, 2008

Day 25...Good News!

Very good news here. After two weeks in ICU, they moved Steven last night to the main floor (445). Then today, they said he could go home on Friday. He was very, very scary sick there for two weeks, then the heart doctor came on and changed his meds around and the improvement was dramatic. They say he has congestive heart failure, but we will worry about that later.

Steven has to go in for a bone marrow aspiration on Monday. They will do DNA testing to see if the donor's system is taking over. And check to see if there are any signs of leukemia left. It should take about 7 days to get the test results back.

They will then monitor him closely to check on Graft Versus Host Disease (GVHD). He is still needing insulin so I don't know how we will need to manage that.

As you can imagine, Steven is very excited. He is sharp and good spirited and it is wonderful to see. They have started him walking the last two days, actually taking him down in the elevator and letting him walk outside for a few minutes. His legs are skinny little sticks, but he is pretty steady now. Hope we can get some weight back on him soon.

This is a good time to call or visit for the next couple of days for everyone who asked.

For all of you who have asked how they can help, driving would be of huge assistance. Lisa cannot drive to Dallas and these clinic visits will go on for months and months and months. They really don't want Steven behind the wheel for a while.

Thank you to everyone for your support and concern. Steven is hanging in there!

Monday, June 2, 2008

Day 23

We are anxiously awaiting the news that Steve's donor's system is taking over. The only way I know to check for now is to see what blood type they are using for his transfusions, since he is still needing both platelets and blood, although his white counts are good. They transfused him yesterday with ONeg, but said with his crossmatch he could have taken A, B, or AB negative. The donor was APos, Steven BNeg. It means the new system hasn't taken over yet, but the nurse doesn't think it is terribly unusual. We won't know for sure until they do the bone marrow biopsy, which should be coming up shortly. Steve is day 23 today. This whole changeover of bloodtype is fascinating.

After a couple of really rough and scary weeks in the ICU, Steve is much improved, though still very dizzy. The heart doctor has been in several times and says he has congestive heart failure (CHF). I read in the booklet he brought that even multiple transfusions can cause CHF, never mind all the drugs and chemos. That doctor changed several medications and the fluid dropped right off. Skinny ankles again, Hallelujah! They are having trouble getting the Prograf level correct with oral medications. It is way too low today but was double too high yesterday. They have to stabilize everything with the oral medications before he can come home.

Steve is very fatigued, but clear and understandable. He still has trouble eating due to the mouth sores, but they have taken him off intravenous feeding. Still has elevated sugar levels so they are giving him insulin regularly. It's all a balancing act.

A PT guy came in this morning and walked Steve out of the room and down in the elevator and outside, in his hospital gown. Since Steve hasn't walked in weeks, except once briefly with me, I am delighted that they are starting to work with him on that. Steven kept telling me what a beautiful morning it was.

Steve is starting to complain about the hospital bed, the toilet, the room temperature, the Kleenex, the fit of the 50 pairs of underwear David and I bought him. David says when a patient starts to complain, they are getting better! He can complain all he wants and we'll just cheer him on! I asked Steve an hour ago if he wanted his computer back in his room and he said not yet.

Steve is good right now for phone calls or visits. He is still in the ICU, but they are talking about moving him to the normal rooms when they can. And as soon as he is stabilized, he can come home, with very frequent visits back to the clinic. The fatigue is a known problem and will probably be one of the most difficult things to deal with at first. He is already talking about going back to work as soon as possible. We all know that will take some time, but it shows his good attitude.

Our friend and fellow transplant recipient Lauren, who went home for a couple of weeks post transplant, is back in the hospital for tests. We know that can happen and are mentally prepared, though we are surely hoping it won't be necessary.