Courage for Kennedy – Journal


June 24, 2005

Category: Treatment – Melenie – 11:09 pm

First I would like to thank Bill, Lynn and Terry for hosting a wonderful and successful fundraiser for Kennedy. What a surprise it was! Their 1st Annual Kennedy Trust Texas Hold-Em Tournament raised $2400 for Kennedy’s trust fund. Thank you for taking the time to do this for our baby. It really means alot to all of us that we are part of your family. I would also like to thank all of the companies who donated such fabulous prizes and to all of those who didn’t even know us but came out to support our family during this very difficult time. Somehow “thank you” just isn’t enough. 🙂

Kennedy attended the fundraiser but wasn’t feeling well so she had a difficult time being social. I’m so thankful that many of the people there had seen her before and know what a social butterfly she can be. After 4 days of chemo and running a fever she was probably as pleasant as she could possibly be. She hasn’t been eating much (the equivalent to less than a pb & j sandwich a day for almost 2 weeks) and has not been drinking much. I’m concerned that she is losing weight and I am watching her for signs of dehydration. Sadly, I have to force her to take meds and do not want to force feed her. Either nothing sounds good or it doesn’t taste good once she takes a few bites. I bought some Pediasure today but she didn’t like it. I was hoping she would because I know she needs the vitamins and calories. We know all the high-calorie, high-protein food she should be eating but she won’t eat even ice cream. If anyone has any advice, please feel free to e-mail me directly. I’m getting desperate. I know that when she is hungry she will eat but she has now lost the weight she gained back and is around 37 lbs. Before she got sick, this was a child who would eat two sandwiches for lunch or an entire small pizza by herself (not an individual one). She was a hearty eater and loved drinking water. She just seems so tiny to me now. My fear is we could return to the hospital for nutritional supplements and fluids. Of course, she is trying to control anything and everything she can and even when I explain to her the importance of eating and drinking she will do what she wants. We could definitely use prayer in this battle.

Many people have asked whether or not they can make direct blood donations to Kennedy. Here is the answer: she can take direct donations from donors who are 0+ only. They will bank the blood specifically for her personal use. Because blood expires, if the expiration date is approaching and Kennedy is not using blood, they will release it for the general public. Right now she is averaging a red blood transfusion every other week. There is no cost to those who have donated blood to the Red Cross previously. They recommended that first time donors, rather than pay the $300 fee, should donate a first time to the general public and then donate to Kennedy. For those people who feel moved to donate platelets (it is a 2 hour process but harmless) you can also donate those in her name if you are 0+. When giving blood or platelets, the donor can just specify that the blood go directly to Kennedy Brooke Duval (birthdate 10/12/2000), treated at Legacy Emanuel Children’s Hospital Cancer Program. Healthy red blood cells and platelets are vital to her recovery because the chemo drugs do not differentiate between good cells and leukemia cells. Red blood cells move oxygen throughout her body-these are also the hardest for her bone marrow to make. Without them she becomes anemic, lethargic and suffers from weakness and exhaustion. Platelets are needed to clot her blood in case of an injury. They are vital to her safety and without them she has had severe bruising, petechiae (blood leaking from the veins and leaving a purple rash) and internal bleeding (in her kidneys and stomach). For those of you who feel led, this is a wonderful gift that you can give Kennedy that makes a huge difference in her recovery. With blood and blood products banked for her, there will be little for us to worry about should The Red Cross have a shortage.

These last 6 weeks have been such a whirlwind for us. We could not have made it without the wonderful love, prayers and support of our friends and family. It is heartbreaking to watch our precious girl fight for her life and I am so proud of her courage and trust in those helping her. I pray for days when she is healthy and giving her medicine will not result in a crying battle where she pleads that she just can’t do it anymore. Please continue praying for Kennedy, not just for a cure but for getting through each day; this Tuesday will be her sixth lumbar puncture and seventh week of chemotherapy. I thank God everyday for all the outpouring of prayer and love for us and I want you all to know how very much we appreciate everything big and small.

Mel

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