Courage for Kennedy – Journal

May 14, 2005

Category: Treatment – Melenie – 12:49 am

After sending out an e-mail, I thought it might be easier for everyone to stay updated if we had a central location so this seemed like a wonderful place to start.

Kennedy is extremely tired today-she was only awake about 5-6 hours total. This was no surprise after 2 days of raging tempertantrums that seemed to come to a head yesterday afternoon. This was expected with her receiving steroids but I was surprised by the extent of her anger. Everything and everyone was irritating to her and she was convinced that if I would let her in her wagon she would get out of here herself! By evening she was better and enjoyed visiting. We are warning those who want to spend time with her that it is not personal. We have begun to set clear boundaries again about what is acceptable and what is not. This has actually helped.

She is responding well to chemo and her white blood count has dropped from 119K yesterday morning to 25K today. Because originally her count was 200K this is all wonderful news. To give you an idea of what that means, a normal person has a WBC of 10K-12K. 200K was extremely high and very dangerous so this is all good news. Her platelets are continuing to drop. These aid her in blood clotting so she bruises easily and new purple spots have begun to appear. Upon admission her’s were at 13-normal is over 100. Even with a platelet transfusion she has never been above 96 and this morning they were at 17-the hope is that as the Leukemia cells are taken out, the bone marrow will on its own begin to create platelets. This hasn’t happened yet and because they continue to decrease by half daily, tomorrow she will need another transfusion. Today we were given her discharge meds and I only hope I can remember to give what at what time. We also went over all of things to watch for-this was overwhelming because after we got through it they said if I just didn’t feel something was right I should call her Oncologist. Boy, that could be frequent! For those of you who know how paranoid I am you are laughing! 🙂

We are expected to go home Sunday and she is doing remarkably well but is still very high risk. Her official diagnosis is: Acute Lymphoblastic Leukemia Pre-B High-Risk. While it is very aggressive as high risk, she is responding equally fast.

Please keep us in your prayers-a note of good news…she qualified for OHP and will be receiving insurance at least through the most expensive portion.

I hope to have more time tomorrow to give some details as to how this was discovered and what our treatment looks like because these are the most common questions. Also, more information will be coming regarding fundraising-it is well underway and there will be opportunities for those of you who want to help.

Good morning and God bless,

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