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

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Tuesday, September 16, 2008

At Loose Ends

I don't know quite what to say, but I know so many of you are waiting for news, I will try to bring things up to date.

Steven is still in the BMT Hospital. They are caring for him and the after effects of the last chemo. Very sore mouth and throat. Mucosis (thick ropes of mucus) which almost chokes him and must be coughed up with much effort. Steven used a suction device during the last round, but really damaged his mouth with it. So he is going without that at the moment. His oxygen saturation isn't great, so he is intermittently on oxygen. His legs are very swollen. These are mainly all results of chemo induced malnutrition. He is having fevers, whether due to infection or leukemia we don't know. Leukemic blasts were 90% of his peripheral (blood) counts. His immune system will never recover. At this point, the only thing keeping him alive are the blood and platelet transfusions.

They are giving him morphine to help deal with the mouth/throat so that he can eat more, which would help several of his problems. The morphine makes him goofy sometimes, about which we tease him. Then he has short periods of total clarity.

Lisa is concerned for the children with the idea of Steven coming home with hospice care and has decided not to do that. We are investigating bringing him to my house and trying to continue the blood and platelet transfusions with other support. It will take some negotiations. His brother is working on the practical issues. One of his stepsisters flew in Tuesday to be with him and the other one arrives Thursday. They do not want to leave him alone for a moment and would come to help take care of him.

The vague plan for now is to stay in the hospital a few more days to take care of the chemo issues. If his mouth gets better, he could lower the morphine doses. They give him a lot of support which would be impossible at home. Then we will see how much care Hospice will allow us to give.

So many people are wanting to visit. Steven becomes confused when there are many visitors, although he appreciates everyone's kindness. It is also an infection risk for him. Please check with a family member as to whether it is possible and if so, what time would be best. Steven knows time is short and he is trying to take care of all sorts of life's details in his clear moments, mainly worrying about how to best take care of Lisa and the children.

The weather is beautiful in our little bit of Texas. Crisp bright skies, plants green from the rains of the last hurricane. It doesn't seem right to me. It should be grey and gloomy.


Blogger ambermoggie said...

Maybe the weather is bright for Steve Angela? A little sunshine for him? Oh I don't know its just so unfair isn't it?
sending healing as always

September 17, 2008 at 4:31 AM


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