Thursday, July 22, 2010
Two Years & Beads of Courage
Today is the second anniversary of the death of my daughter, Krystal. She was nine years old. She died exactly seven months after the diagnosis of Aplastic Anemia. Aplastic Anemia is a bone marrow failure disease. Due to the failure of her bone marrow her body no longer had any resistance to disease, bacteria and fungi and was no longer was making blood cells or platelets. She no longer had an immune system to protect her. She contracted a fungus. Just an everyday fungus that breaks down vegetation. Harmless to the rest of us who have an immune system-generally fatal to those without. She fought hard, but was no match for it.
The pain has eased and I find myself recovering from the loss. Both my little dog, Brutus and I are happier, more energetic and productive. I will always miss her and the "what could of been's".
I want to share an awesome program that I have just recently learned about that Krystal would of adored and loved. It is called "Beads of Courage". Critically ill children earn beads for everything they endure-blood draws, transfusions, chemo sessions, hair loss, procedures and more. Right now this program is in the running for a 25K grant from Pepsi. This grant will help launch the program in ten more hospitals, provide training for the program and of course-beads. Please vote for the Beads of Courage program and help to spread this wonderful program. Just click on any of the name of the program to go directly to the voting site or just use the widget I've installed in the upper right hand corner of my blog. Please take a moment, watch the videos and vote!
Using a rough estimate I figure my daughter was in treatment for 30 weeks. She had to have blood drawn and tested an average of three times a week. I estimate that she had an average of three transfusions a week. Under the Beads of Courage program that would of earned her a minimum of 90 beads for draws and another 90 for transfusions. She had a bone marrow test, PIC line inserted, two drains for a bout with Typhlitis, countless x-rays, three PICU visits, at least five emergency hospitalizations, imaging scans, major surgery to remove 2/3 thirds of a lung, a drug regime to try and "re-boot" her bone marrow, 90 days of daily injections and another month of them every day to as part of the regime to keep her healthy. Thirty days of having to drink a daily dose of a very nasty tasting medicine to flush excess iron out of her body from all the transfusions. Dialysis when her kidneys quit and a ventilator to help her infected lungs. I had to remove her from school since she had no immune system. This also pretty much left her house bound as she could only go out in public when absolutely necessary due to germs, etc; Can you imagine the string of beads she would of had? We didn't even make it to chemo and a bone marrow transplant.
I am not sharing this to get your sympathy or pity but to make you aware of what our children endure to live and survive critical illnesses. Beads of Courage gives these children and us a visible, tangible record of what they have been through. This also helps us to remember how important it is to finance research to find cures for these awful, life-altering, killing diseases. I ask, no I beg of you to please vote for the Beads of Courage.