Being a mother has been the biggest blessing of my life. My husband, Clay, and I have four amazing and wonderful sons - Pierce who is 17, Garrett and Killian - the twins - were born 15 years ago, and Finnian who is 11 but he thinks he's 18!
But even the most blessed life is tempered by hard times. And in our case, we faced the unthinkable - losing Killian to cancer on July 27, 2003, when he was only nine years old.
The story begins in 1999. I was having a miserable year. I snapped my ACL playing tennis, and had to have surgery. Three weeks later, I was told that my mum, who was in England, had suddenly become very ill. I immediately traveled to England to be with her. After two agonizing weeks she passed away. I thought my world had fallen apart - but there was more to come. Six weeks after Mum died, Killian got sick with a fever and stomach ache that would not go away. The doctors finally ran a blood test, which came back with a devastating diagnosis: Killian had leukemia. He was just five years old and to all appearances was a normal happy and very healthy looking little boy with big green eyes and a head full of curly blond hair. How could he have cancer? That happened in movies and on TV, not to our little boy!
Playing sports while battling cancer
It was December 10, 1999 - Diagnosis Day. So we all embarked on a long journey of chemotherapy and its horrible side effects - the mouth sores, the hair loss, the nausea, the pain and weakness and the forced isolation in hospital rooms. But Killian never wanted to be treated like he was sick. His dream was to be a "normal healthy child." He insisted on playing sports throughout his treatment: baseball, basketball, swimming. In fact, he once participated in a swim meet after having a spinal tap - and got upset when he came in third! His spirit was unbreakable.
After nearly three years of chemotherapy - with the end of treatment in sight - our world crashed in on us again. Killian relapsed. The leukemia was back. Now he was really fighting for his life, with his chance of survival dropping from 75 percent to 20 percent. His best chance was a bone marrow transplant. We were all tested for compatibility, but it was Killian's twin, Garrett, who was a perfect match!
Bone marrow transplants are not the magic treatment shown on popular hospital TV series. They are simply brutal. After high-dose chemo, Killian had to undergo radiation to destroy his existing bone marrow - along with the leukemia cells in his body. The transplant itself is relatively simple - much like getting a blood transfusion. Then Killian's body had to go through the process of trying to accept the new marrow. He was placed in isolation again - this time for nine weeks while he struggled with nausea, diarrhea, vomiting and horrible pain. Killian's bravery and spirit hit me anew as I watched him fight to beat the disease. He exercised constantly - walking around and around the nurses' station, with medicine pole and monitors in tow. He was given the "Strong Legs Award' by his nurses for his efforts. It worked. We received the joyful news that Killian's bone marrow was now 100 percent grafted with Garrett's cells - this was as good as it gets.
But sometimes leukemia is tougher than even a nine-year-old boy. Ninety days post-transplant - just 10 days short of the point where the transplant is considered successful - a routine blood test showed the leukemia had returned. The following week, Killian's doctor told us we were out of options and that Killian had about two months to live. He said we should go make some memories while Killian was still well enough to enjoy himself. So we went to Disney World, telling Killian and his brothers that we were celebrating a successful bone marrow transplant. That was one of the hardest weeks of my life - pretending to be happy when my heart broke every time I looked at Killian. It felt as if my heart was tearing apart.
But we weren't ready to give up. The day we got back from Disney World, I read an article about a new drug which was first developed here in Atlanta for chemo-resistant childhood leukemia. The drug, BL22, is a targeted treatment which attaches itself only to the cancer cells and destroys them. It does not destroy healthy cells - only cancer cells. I called our doctors immediately and asked if Killian could try the drug. They said he couldn't because it was not open to clinical trials for children. That didn't stop me. Miraculously, I managed to contact the doctor at the National Cancer Institute and we got special permission from the FDA to use the new drug just for Killian. Within a week, we were at the NCI in Bethesda, Md., where Killian became the first child in the world to try this new drug. The drug worked well enough to stop the leukemia cells from multiplying for a short time but because the drug was experimental the doctors were not allowed to give Killian a big enough dose to cure him. If the doctors had had the money to fund the development of this drug earlier, it could very well have saved his life. But this miracle was not meant for Killian so we took him home.
Over the next few weeks Killian deteriorated rapidly, needing blood and platelet transfusions every other day. He developed a fungal infection in his lungs which the doctors said would kill him in about three days. Killian's spirit kept him alive for his little brother's 6th birthday three weeks later. The day after Finn's birthday Killian told us three times that he was ready to go now. When I told him that was okay but asked where he was going, he smiled and said, "I'm going home.' He was very peaceful and at 10pm on Sunday July 27, 2003, Killian left us.
Killian's death hit us all hard, but I struggled most with depression and anger. About a year later, I was talking to our sons about Killian and trying to comfort them. I assured them that Killian was perfectly happy and healthy now in heaven and so we should try to be happy as well. I suddenly thought that if I believed what I was saying, then it was very wrong of me to be so angry and depressed. I should be using my experiences to make a positive difference. I realized with absolute certainty that I had to do something to raise awareness and money for childhood cancer research.
Youth sports teams raise money to find a cure
We created a program called Coaches Curing Kids' Cancer. The idea came from a coach who heard Killian on the radio telling his story during the WSB Care-A-Thon benefiting Children's Healthcare of Atlanta. Inspired by Killian's bravery, that coach asked his basketball team to donate the money they had collected for his end-of-season gift to Children's Healthcare. Using that idea, we launched Coaches Curing Kids' Cancer on the WSB Care-A-Thon in August of 2004. We asked children's sports teams to donate the money they collect for their coach's end-of-season gift to Coaches Curing Kids' Cancer. In return we let them choose a t-shirt, baseball cap or whistle to present to their coach along with a personalized certificate. The proceeds are given to pediatric cancer research.
The program caught on like wildfire, with tremendous support coming from sports teams in Georgia. So far, we have donated over $600,000 to the Aflac Cancer Center and Blood Disorders Service at Children's Healthcare of Atlanta and $800,000 nationwide. As the program has expanded nationally, we've been able to fund innovative therapies in hospitals all over the country. We also launched a similar program for teachers called Teachers Curing Kids' Cancer. Now you can make a donation in honor of your teacher for an end-of-year, holiday, birthday or teacher appreciation gift. The program Killian inspired is funding the development of innovative drugs like the one he pioneered. These types of targeted therapies could change childhood cancer from a killer disease into a curable one in our lifetime!
During the five years since Killian lost his battle with leukemia my faith has allowed me to accept that good things can come from bad. We have been through so much together as a family and we have grown with our experiences. Our boys are better people because of their brother. Through the gift of Killian, we were shown what a difference one short life can make, especially when it is lived with joy and hope. The sad lack of funding for pediatric cancer is just plain wrong - I was brought up to believe that when something is wrong and you have the ability to put it right, you have the responsibility to put it right! Margaret Mead may have said it best: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has."
Grainne Owen is Executive Director of Curing Kids Cancer.
How you can help
Grainne writes: If you would like to help us change the world, make a donation or get more information about Curing Kids Cancer, click here. You can make a donation on behalf of your coaches or teachers, in memory or in honor of someone or just because you would like to help! We can always use volunteers to help us spread the word and get information to sports leagues and schools about our fundraising programs. If you would like to hold a fundraising event for us or have an idea for a fundraising event we would love to hear it. Please contact us at info@curingkidscancer.org or call us on 1-866-933-CURE (2873) or 678-277-9849.
