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

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Saturday, August 30, 2008

The Ordeal Begins...Again

Yesterday, they finally got Steven's platelets high enough to install the PIC Lines and began the chemo round. Five days of two drugs (one is blue and will make him pee green) and then the wait for them to do their job and the slow countdown until his counts start coming back in. One upside of getting the lines in is no more 4AM gouging to find his veins.

For some reason, Steven's neck glands were swollen yesterday morning. They think the prednisone they give with the chemo will help that. And he had a really massive headache for which they finally had to give him some good drugs. No fevers, although his blood pressure shot way up. They were monitoring that closely.

Many of the nurses on the floor remember Steven from January when he did his second round of chemo there. Wonderful quiet, caring Linda was there again last evening. It was good to see her and know she would look after him through the night.

Other than that, Steven was in pretty good shape. Alert, laughing and joking. Managed to eat the hospital dinner, although breakfast was totally impossible. They finally managed to scrounge some Cheerios for him. His uncle brought him a hamburger for lunch. His brother came in the evening bearing Haagen Daz, dark chocolate Reeses cups and Mug Root Beer. I picked up Lisa and Andrew and we brought Fiji Water and Gatorade drinks to fill the fridge now that he has one in his room, along with white bread and peanut butter. The chemo changes the flavors of everything and these were the tried and true items he seems to manage best. We also brought his chess board so that he could play with friends over the long week-end.

One couldn't ask for a better attitude and more quiet determination than Steven is showing. His doctors are impressed.

Thursday, August 28, 2008

A Day Wasted

Thank goodness Steven was finally moved to the cancer floor about 10 tonight. He is in room 631 in the Roberts Bldg. The new phone number is: 214.818.7681

The floor he was on was terrible. It took them an hour to respond to a call. They left in his platelet bags long after they were empty and his blood washed back up into the bag. The IV team never got the lines in so that they could start the chemo. It was a completely wasted day of great anxiety. Steven is ready to get on with it and at the rate the leukemia is coming back in, it can only have gotten worse. Totally frustrating. In an entire day, the only treatment he got was two bags of platelets.

Here's hoping that his platelets will still be high enough to install the lines in the morning and they will get this show on the road.

Steven said he absolutely can't bear to eat hospital food anymore. At least in the new room he has a DVD player and a fridge. Several friends and family came to visit which made the day pass a little easier. Steven actually sounds quite hearty. He said he can't believe he is so sick because he doesn't feel that bad.

Wednesday, August 27, 2008

Wherein He Decides to Fight

Steven has decided to continue the fight. We are behind him with all our strength. The leukemic blast level in his blood yesterday was 14%, today it was 29%. 24 hours and it more than doubled. It boggles the mind.

A long, long day lying in a bed at the clinic. Steven needed two units of blood and a new PICC line and fluids and a heart test and a bone marrow test. When I picked him up going to the clinic this morning, I told him he should pack a bag. Dr. Agura saw me in the hall and said, "I've decided to admit Steven to the hospital." I laughed and said I knew that already and he had his bag with him.

Dr. Agura came up with a plan. Two new chemotherapies that have not yet been used. Hoping to buy time while they do a frantic search for a donor. Time is truly of the essence this round. It can't be four months like the last time. Steven's body could not take the repeated chemos necessary. The idea is to find a different donor whose system would fight the leukemia cells harder.

Steve knows how difficult these chemos will be and he knows the odds for success are reduced, but he has been fighting for so long that he doesn't want to throw in the towel now.

It's amazing what two pints of blood did for Steve. Like watering a thirsty plant. He turned a nice color and energy returned to his voice. He cracked a joke or two and spoke positively about the upcoming treatments. Dr. Agura said that except for the leukemia, he was a healthy man. His numbers are still relatively good, although the doctor said that by next week that would change. There is not a minute to waste.

We waited all day for a room. The hospitals are full. They finally found a room on the 12th floor in Roberts but will hopefully be able to move him soon to at least 6th floor of Roberts, the cancer floor, if not into the Bone Marrow Transplant Unit, which of course we would heartily wish for. Steven said it took them almost an hour to answer a call tonight. The IV team never arrived to install his lines, so we hope they get there early tomorrow. They can't start the chemo until the lines are in place.

For those of you who would like to visit, the next few days would be a good time before Steven starts to get really sick again. Also for phone calls. I am sure he would appreciate any support you can give.

And for the many who are praying for Steven, please ask that the perfect donor be guided to act quickly and to give Steven the strength to get through this ordeal.

Thank you to everyone for your continuing support. It is a great comfort to us.


Tuesday, August 26, 2008

Unwelcome News

Today we heard that Steven's leukemia is back aggressively. Last week his blast (leukemia) cells were 0, this week they are 14%. It was such an unbelievable change that the doctor went to check the slides himself.

The doctor said many patients at this point choose to do no more therapy. He would live about a month.

The alternative is to start chemo immediately (which means being very ill again) and start to look for another bone marrow donor. Evidently this donor was too good a match for Steven, even though there was a single mismatch, and never caused graft host disease which they want to some extent.

Steven has to decide tonight and we go back to the hospital in the morning. He is very anemic and needs blood and platelets, needs to install another central line and have a bone marrow biopsy.

Steven's first reaction was that he had already fought this long, why would he give up now? He certainly knows what is involved. He is a brave man and of course his family will support his decision 100% and go into this positively and with hope.

Please keep Steve in your hearts and prayers.

Tuesday, August 19, 2008

It All Depends on Who You Listen To

Hmmmm, in two or three appointments with the nurse practitioner Lowell, whom we like a lot, Steven was told that the flow cytometry tests showed a miniscule amount of leukemia coming back. Then at last Tuesday's appointment, Dr. Agura said he saw no leukemia in the hand done tests, that the donor's DNA was showing up 100%, and that he wasn't worried at this time. When we asked him about what we had been told about the leukemia returning, he said he didn't see it, but one could read the same report different ways. Frankly, we prefer Dr. Agura's version.

Agura did take Steve off his Prednisone and said he would shortly also take him off the very low Prograf dose he is still taking. Since Steve is only 3 and a half months out from transplant, that is incredible. Normally with an unrelated donor one would need to take anti rejection meds for a year to life, especially when it was not a perfect match. For some reason, Steve is so far showing none of the symptoms of graft/host disease. Everyone else we have been following with similar transplant times has had some degree of graft/host, and they were all perfect donor matches. Actually, they would like Steve to show some GVHD because it should also fight the leukemia more. far, so good. We shall see what happens when they remove the Prograf completely.

Last Friday, Steve saw the heart doctor who said everything looks good for now, but that he would probably have to take the heart medications for life. They will check it again in six months. When he started having the heart problems way back in January at Baylor Irving after he contracted MRSA, the heart wall had thinned and separated. It looks good now, but the doctor thinks it is the heart meds which are keeping it in shape and that if he removed them, Steve might go back to having problems in a couple of months. On the other hand, Dr. Agura thinks that Steve's heart has a good chance to repair itself and that he might be able to drop those meds somewhere down the line. Hmmmm, still again we shall see.

This last Monday, for some reason all Steve's counts that had been looking so good dropped. White cells, hematocrit and platelets. Steve's hematocrit was actually just 3/10 of a point above automatic transfusion level and normally they would have given him blood. But Dr. Agura wanted to try giving him a B12 injection and putting him on high B vitamins to help him with his counts. So once again...we shall see. The doctor also put him on a weekly appointment level which is nice. Next Tuesday will tell if the vitamin strategy does the job.

Changing all of his medications around has left Steve quite tired. Coming off Prednisone, he "hit the wall" but is starting to feel better. They lowered his Bactrim dose to preventive, not treatment, level and they also halved the dose of Coreg, the heart medication. It will take a few days to see what happens there. Every reduction in the handfuls of pills he has to take is welcome. Steve actually changed a tire on Lisa's car the other day, but ran out of energy with two lugs to go.

Steve asked Dr. Agura if he needed to find a new internist for routine health problems, but Dr. Agura said he will be his doctor for everything for the next five years. They will keep checking Steve's bone marrow regularly to keep an eye out for the leukemia.

So all in all, things are going pretty well all things considered and we have high hopes for more energy soon. Bless Steve's donor once again. Life is good!

Tuesday, August 5, 2008

A report on nearing three months post transplant

Steve still isn't able to post because of problems with his eyes, probably a chemo hangover. He has felt a bit better this last week since Dr. Agura downsized some of his medications. He got the throwing up under control and was steadier on his feet.

Last Friday, Steve had his almost 90 day bone marrow biopsy. Preliminary results today showed a very small percentage of blast cells again. Although they are not showing up in his blood and his marrow still reads 100% donor genetics. First round of treatment is to reduce still further his anti-rejection drugs. The transplanted stem cells work as an anti leukemia drug in this case. Steve will possibly see some graft host disease problems, usually rashes, digestive problems and nausea.

They took a second blood draw today to do a fractional chimera (chimera due to his double DNA) test to pinpoint which of the cells are showing the problems. We hope to have further more detailed results on Friday.