Courage for Kennedy – Journal

June 5, 2005

Category: Treatment – Melenie – 7:13 pm

I have been trying to update this all week but ran into some problems after they made changes to the caringbridge program. Everything seems to be fine now though 🙂

Kennedy is doing remarkably well this week. On Wednesday her ANC (immune fighting cells) were at 162. 1000 is what we are shooting for but we would be happy to have any over 500. This was not great but it shows that her body is trying to recover itself now that the leukemia cells are gone-unfortunately, her chemo does not distinguish between good and bad and kills all the cells. Her platelets were at 49 (keep in mind that 100 is normal). Dr. Norwood had something he was going to check into-it could mean nothing-but her chromosome 9 has attached itself to chromosome 19. He said that often times with leukemia ch 1 will attach to ch 19. He doesn’t remember this combination as being good or bad exactly but he wanted to do some more reading. As of Day 15 in her treatment, when looking at 1/10,000 cells she is leukemia free and in remission. On Day 29, June 8 although it is going to be done now on June 9 or Day 30, they will send her labs to the research institute where they will exam them at 1/1,000,000 and they will look for any MRD (minimal residual disease) or any possible leukemia cells; if they find less than 1% then she moves to the consolidation phase, if they find more than 1% then she will have 2 more weeks of induction phase which includes 2 more weeks of Dexamethasone steroids. We will know either Friday or Monday following her bone marrow aspiration on June 9.

Kennedy will be having surgery on Thursday, June 9th to have a Port catheter inserted into her chest, her Pick line removed from her arm, bone marrow aspiration and a lumbar puncture with Methotrexate in her spinal fluid. She has a lab work up at the Oncologists’ office on Wednesday morning because they expect her to need at least a platelet transfusion and possibly a red blood transfusion. Because her platelets are expected to drop, and because she is having a catheter inserted into a main vein near her heart, they want to be absolutely certain she will have the ability to clot her blood. On Thursday morning, we will have our pre-op consultation and she has surgery at 1:00 pm. Depending on who you talk to depends on whether or not she will be staying the night-we’ll see. Everything is moving very quickly with her surgery because this is our best opportunity for the next couple of months. I have no idea what her treatment looks like after next week as it will depend on the genetic labs that have not come back (whether this was a DNA mutation or a blood cell mutation) and her MRD both could change the course of the treatment.

Her hair has become pretty thin and when we went to the National Cancer Survivors Day Celebration at Emanuel, she refused to have her picture taken. She is handling it well though and is looking forward to the UPS man bringing her “new hair” this week. I took some fun pictures of her in day treatment playing while getting her chemo so I will post those soon.

Austin finished baseball and had a wonderful time with Kim, Darren and Skyler Vess at the Arthur Academy carnival. He is doing better and looking forward to summer. Please continue to keep him in your prayers as this is very difficult for him too.

Thank you everyone for your thoughtful e-mails and posts. Thank you, Terrie, for the BabyBundler to carry Kennedy in. This certainly helps for her comfort and to keep strangers from feeling like they can just invade her personal space and touch her. I’m having a very hard time with this and by carrying her we have been able to almost eliminate this. I’m also trying to remember that touch is some people’s love language and while I am trying to protect Kennedy, they are trying to show their love and concern for her.


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