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

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Sunday, September 7, 2008

The Ordeal Continues - Day 9

More of the same. Yesterday's blast count was down to 8%, in two days from that very scary 93%. It shows that the leukemia is responding to the chemo, but they have to get every one of those nasty little cells. We don't yet know today's count. Fingers crossed.

Steven's mouth and throat get a bit worse each day, but so far he has managed the other common chemo side effects.

Steven was in such pain last night from his throat that he called me at 3:30AM and again at 4:30. A nurse (Tanila or Tekwila or somesuch) came in and changed his lines incorrectly, reconnecting them with old bags which is an infection risk. He said she messed around with them for ages. Then she took his prepared pain shot and pushed and pulled the syringe until there was almost nothing left before injecting it. So he was really in pain and couldn't get another shot, or another nurse, for hours. He was afraid to call or she might come back and do worse to him. I called the nursing station and asked for the charge nurse and told her there had been a problem and would she check with him. She did come in rather promptly and told Steven she would prepare another shot and that the first nurse would come back to administer it. Well, two and a half more hours passed before she finally showed up, which was the time he would have gotten the next shot anyway. Evidently she was a temp nurse they weren't happy with anyway. Hope he never sees her again. But Steven really felt he was at their mercy last night and was afraid to make trouble.

Some nurses don't like to give out pain medication, which mystifies me in a case like this. They were a bit difficult this morning and called the doctor about it after Steven spent a night unable to sleep. Pinheiro took care of the problem by doubling the dose, bless him. Studies have shown that when patients are allowed to control pain dosage with a pump, they tend to use less and not more because they are in control and know that it is there when they really need it. Guess we need to ask for a pump.

Our dear Brazilian friend Marta, recuperating from her second transplant and doing well, cooked several meals for Steven and brought them to the hospital. A wonderful Portugese Rice dish which was just perfect. Having been through this, she knows what is just right. She loves to cook and we are so happy that she is back in the kitchen after all she's been through. So are her teenagers.

Steven had eight people in the room a little while ago, visiting and watching the game. Can't even imagine how they all squeezed in. He sounded quite animated. He is surrounded by love and support.


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