Kylie Ann Rosset was a three year old girl whose bright and cheery smile made your heart melt. She was full of life and of love. She had a warm and bubbly personality that shined on everyone she met. The wisdom Kylie had was way beyond what you would ever expect from a such a young child. She was a wise, old soul in a little girl's body, with a gift of love to spread to those she touched.

Late in the summer of 1998, a job promotion moved our family from New Jersey to Minnesota. This was a very big, scary move for us. We were leaving our hometown, where our closest friends and family lived. We were sad to go, but we tried to look at this move as a new adventure. With this healthy and happy family...it could be fun...so we thought. We moved at the end of that summer...just in time for Haley, our oldest daughter of two, to start Kindergarten. We moved into the house we had built on October 30th.

On November 20th, 1998, Kylie was diagnosed with Juvenile Chronic Myeloid Leukemia (JCML, also called Juvenile Mylomonocytic Leukemia-JMML), an extremely rare childhood leukemia. The diagnosis was an absolute shock...Kylie seemed like a perfectly healthy, normal child. We were horrified to say the least. How could this happen? Why our child? This can't be real!!!!! These were all the thoughts running through our heads. But it was real and it was happening to our sweet little Kylie. The only children that had ever survived this type of leukemia had a bone marrow transplant...and the statistics for surviving this disease, even with the transplant, were not good...there were very few survivors. A bone marrow transplant is a very risky, life threatening procedure. It seemed a no win situation...but there was no other choice.

Kylie entered Fairview University Medical Center at the University of Minnesota for her transplant on January 22, 1999. This was supposed to be one of the top pediatric bone marrow transplant centers in the world. The protocol began with two days of Cytoxin chemotherapy, followed by four days of total body radiation, and on the seventh day...the transplant. She lay there in the radiation room by herself, strapped down on a table as we read to her from outside the door, all the while she was being subjected to full body radiation. She did not ever complain or whine. Most kids needed to be given anesthesia to be perfectly still for radiation. We asked her if she could lay still so that she would not need extra medicine. We did not want her to have any more medication than already necessary, and she was fine with it. Kylie was brave beyond belief. After the four days of radiation, Kylie actually received an umbilical cord transplant, which is rich in stem cells for the growth of new bone marrow. Her transplant was on Jan. 29th, 1999.

In the hospital, we would watch Kylie's favorite movie, "The Wizard of Oz" over and over again. We must have watched it a thousand times. She would sing "Somewhere Over the Rainbow" to the nurses and make them all smile. She was really doing great at first, then after about two weeks things began to change. Kylie was throwing up and having reactions to the toxins that had just entered her pure little body. Around February 6th, her beautiful blonde hair all came out. This was heartbreaking, we started to see the signs of what the treatment was doing to her. Our bright and cheerful little girl began to lose her sparkle. All we could do was wait it out and hold Kylie close with lots of praying and hugs.

On the 16th of February...Kylie began seizing and went into a code blue....what had happened...no one was quite sure...but the doctors put her on life support and she hung on with a machine helping her breathe. The doctors were surprised and couldn't figure out what had gone so wrong. They said that anything can happen in transplant patients and that they were doing all that they could. Kylie was taken off life support after two days and the hope came back. But her body began to deteriorate more and more from the drugs and toxins she had been injected with. Her body filled with fluid and her lungs filled with blood. She had chest tubes put in and was put back on life support to help her breathe. Her body was not accepting the new cord blood it was pumped with and the rejection was severely damaging. She had grade 4 Graph vs. Host disease (GVHD) which is the highest level of rejection and most deadly to the patient's already compromised immune system. She was treated with the highest doses of steroids to stop the internal bleeding, but this worked against her cell production, leaving little power to fight off infections and other problems.

She was taken off the respirator for the second time on March 6th (which the doctors couldn't believe that she had lived through) and once again there was hope. Upon being extubated, Kylie was completely unresponsive and it seemed in a state of coma. Although she had successfully come off the ventilator, test results from a brain MRI showed she was now severe brain damage. It turned out that the damage was from episodes of high blood pressure along with the massive amounts of drugs they gave her, and we believe it was also from the radiation.

Our precious child, who went into the hospital singing and dancing, slowly deteriorated and died there in that room that she was isolated in for all that time. Kylie was never able to speak or smile or do anything 'normal' again. She had been on ICU watch since the seizure and would continue to be. Her body continued to weaken and could never really come back to herself. Her lungs never got back to normal since the first time on life support. The bleeding subsided for a couple of weeks until around Easter Sunday, which was April 4th, 1999. The hemorrhaging came back with a vengeance. We thought it had finally been under control, but we were wrong. And then, that same week, we were told that she contracted a virus called Adnovirus. Her body was like a leaky vessel, and her immune system had no power to fight this virus. She needed 500 mgs/sq/day of steroids to control the bleeding, as well as lots of blood transfusions. However, the steroids worked against the virus giving her system little fighting power. Her whole system began to breakdown, she was now struck with liver failure and eventually kidney failure. Between the bleeding, the high doses of steroids, the virus, the brain damage and all other 'little' problems, all odds were against her.

On April 17th, Kylie's lungs had begun to fail her too. She had to be put back on a respirator for the third and final time. This was her very last chance and with a body so broken, it was a slim chance. One by one, her organs all shut down completely. The doctors tried absolutely everything and we continued to beg for a miracle. We held Kylie tightly and watched as our sweet little girl left this world at around 2:45 am, April 18th, 1999. Her body was too beat up and broken to fight any longer. On April 26, 1999, we buried Kylie near the beach in NJ that she knew and loved. We eventually moved back to NJ, as well, to be near family and to be near the resting place of our sweet little girl. 

The effects that the CURE for Kylie's leukemia had on her body slowly and brutally took her life away. It was and will forever be the most horrific experience we endure. We watched, helplessly as our precious Kylie was being subjected to treatments that traumatized her body. No parent should ever have to watch their child suffer like this. It is an unimaginable experience. Kylie now soars "somewhere over the rainbow" in a beautiful world where there is no suffering and no pain. We are eternally grateful for the 3 years, 5 months, 1 and 1/2 weeks that we had Kylie in our lives. She is forever our hero and we will always miss her deeply. There is a hole in our family for the rest of our lives. Somehow, our broken hearts are still beating. The devastation of losing a loving, courageous, kind, caring, and happy little girl, like Kylie, is excruciating. We thought to ourselves....how can we handle it...how can we possibly go on after losing our sunshine..?? But Kylie was so brave and so strong through all the horror that she endured...she showed us how to carry on in the face of pain....to be loving and kind in the face of pain....and to help others in the face of pain...and so in Kylie's honor....we keep going in the face of our pain. We have found a purposeful way to channel our energies into doing positive things in memory of our precious Angel, Kylie Ann Rosset.

Forever in our Hearts
11/7/95 ~ 4/18/99