Courage for Kennedy – Journal


June 17, 2005

Category: Treatment – Melenie – 1:24 am

So goes the roller coaster we call Kennedy’s Leukemia. Remember my last posting that things were just great and wonderful-well, things are still good, we just have a few set backs.

Kennedy started consolidation yesterday which meant a very long day for us. We had to be at the Day Treatment Center (DTC) at 8:30 for blood draws. She had a lumbar puncture at 11:30 then more fluid, chemo drugs, more fluid and a dose of a drug that makes her kidneys function very effectively. We were finally able to leave at 5:30. After arriving home, she developed a fever which meant a phone call to the doctor and a return to the clinic first thing in the morning. A low-grade (100 degree) fever is expected with Ara-C but hers was hovering around 102.5 degrees. There are two possible explanations: a possible viral or bacterial infection she picked up before her chemo or Ara-C can sometimes cause bacterial blood infections. Either way she gets several days of high dose, broad spectrum antibiotics and a hospital stay. They are doing a blood culture and are watching her carefully. One of the antibiotics gave her “red man syndrome” which caused her body to look very sunburnt. They are now dosing it over a greater amount of time and giving her benadryl so hopefully that will help. They are planning for her to go home either Saturday or Sunday but we will see. Next week she has the same treatment so we could be here then too. Of course she is getting spoiled again and doesn’t necessarily mind being here.

We did find out Wednesday that although Kennedy has less than 1% MRD, she is classified as a Slow Early Responder (SER) because she has between 0.1 and 1% MRD. This means 4 more months of intensive therapy and radiation to her brain. Unlike with a tumor, the radiation will be directed at her brain as a whole. We have been reassured that it is a very low dose but that does little to ease my fears about the side effects. This group with MRD is still seeing a more frequent relapse than those with less than 0.1 and the study is looking at the idea that an increase in intensive chemo and radiation will give the SER kids the same cure rates as Rapid Early Responders (RER). This was very upsetting to me and it was almost like hearing the news anew. I have had the urge to scream and beat my fists against something all day but have resisted. I’m afraid I will look like some crazy woman. I do realize that it can’t be healthy to keep it inside but for those of you who know me well, losing control is not really an option. I just long to run back in time to a place where Kennedy was healthy and happy.

Please, hold your children extra tight tonight and thank God that they are here with you.

Melenie

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