Saturday, May 1, 2010

Meds Roll Coaster

Well, with as much as we want a "normal" life, there are still things that are not quite normal.

Sean's white blood cell count has continued to drop over the last few months. I'm sort of kicking myself that I wasn't more on it in requiring the doctor to do mid-month labs so it didn't fall to 0.7. (Our hospital shows normal as 3.8-11.0) Last month it was low at 1.9 and they made some changes but did not check mid-month and here we are at 0.7.

So another med change, but a big one. AND another trip to Vandi for a shot to encourage blood cell production. The shot itself was easy, but when Sean asked if there was anything that he needed to know, they said no. This is not quite the reality. It caused him great bone and muscle pain. This pain looked to be worse than the pain he had with those huge kidneys.

The plan now is to keep him off of Celcept until we go in May. For now he is on Prednozone which we are not at all thrilled about. He will go to our clinic or doctor for labs mid month to see how the shot and Prednozone are working. I am taking off in May to go with him.

I hate to complain considering how easy it went for us. However, I think you have an expectation of stress and drama with the transplant, but figure life to be normal/calm. The reality of it is this: with any foreign body part, normal is not exactly what you remember it to be. With that said, still very greatful, but need to adjust our thinking about the after care. We need to be as persistant as before and knowledgable. I believe that I was lacking in this post transplant, but will get back to my job!

I have heard people want me to update this, but much of the time, we run our butts like everyone else now. His scars are a reminder of the good deed our friend did and the hope of a normal life.

Our kids are doing well. Our daughter got accepted to Governor's School and leaves at the end of May. She was awarded some other honors at school last week. We are very proud of her. She has maintained a 4.0 through all of this and hopes to finish the year the same way. She is finishing her softball season. She has been catching some of the games and "loves it!"

Our son finished his bowling league. However, he and Sean will begin a youth/adult league on Monday. It will be difficult with him this summer. His best friend of 5 years and his sister both leave at the end of May. His friend is moving 3 hours away. I worry how he will handle all of this, but like a child, he should bounce back.

I have stopped leading Weight Watcher meetings and prefer to just reception. I feel like I have more interaction with them at the counter than in the meetings. I am enjoying my change. I will continue to work in 1st grade as I really love this age.

Sean would like to take up golf again and I will try to encourage that. So if anyone stinks at it and would like to go hit some balls, call him. He used to do this before I came along, so it has been quite a while. I think he needs a hobby.


  1. Neil golfs, tell him to give him a call, plus he needs a break from me & Alyssa. We are causing him lots of gray hair. :)

  2. Awesome-now to find a course that isn't under water. NUTS!!!