Courage for Kennedy – Journal

May 31, 2005

Category: Treatment – Melenie – 12:51 am

We received some very good news today-Kennedy is in remission! At her last aspiration on Day 15 of treatment, there were no more active leukemia cells! They are not calling her an early or slow responder because she went into remission in the middle of her induction period. Now it becomes a wait and see as far as making adjustments to her treatment. I’m not sure if they will decide to continue with standard treatment or boost certain phases into higher doses between now and maintenance. I will know more tomorrow after her clinic visit. She is very happy though not to have any back pokes (spinal taps or bone marrow aspirations) tomorrow. She will still have a blood draw and chemotherapy but she will have no muscle soreness. When I was on the phone with the nurse, I mentioned that Kennedy is complaining of having the sensation that needles are poking out of her skin and if she itches them, she can push them back in. The nurse told us to mention it to Dr. Norwood tomorrow but she believe that it could be the Vincristine (a chemo drug) causing neurological side effects. Hmmm…not encouraging.

We applied for Social Security disability benefits for Kennedy today-or we actually had our interview. We’ll see what happens with that. It probably wouldn’t be a large amount of money, but it could help us to get through the next few years.

Everyone is doing well. As you could see by the pictures, most of the family has shaved their head while Kennedy goes through this difficult phase of losing her hair. She seems to accept that fact that it is happening but I think she thought it would all fall out at once so it seems to be taking a long time. Everything is covered in Kennedy’s hair: the couch, our clothes, her bed, her clothes, chairs and anyone who holds her. She had a lot of hair to begin with, it was just very fine, so while we can tell that she has lost a lot of hair, because it is not “patchy” it is hard for others to tell.

This weekend my father-in-law and his family were in town and my sister, her husband and kids came over for a BBQ. Kennedy loved playing with her cousin Emily and realized how very much she missed her. It was hard for her to pick up because she knew that meant that they were leaving. I will be happy when her ANC numbers come up and she can spend time with the people she loves.


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