Your son Gabriel was diagnosed with leukemia at a young age. Can you tell us a little bit about his illness? How is he doing now?
Gabe was 2 years old when he was diagnosed with acute lymphocytic leukemia (childhood leukemia) in July of 1996. He was very ill with what seemed to be a bad respiratory virus. The next thing we knew he was transferred to Primary Children's Hospital and we were told he needed a bone marrow biopsy. My husband, Anthony Titus is a physician and I have a Ph.D. in Immunology so we were immediately aware that something was very wrong. Nothing, however, can prepare you for the moment the doctor walks in the hospital room and tells you at 10:00 pm on a Sunday night that 'I am 95% sure Gabriel has leukemia'. He was sitting beside me eating Cheerios, I just grabbed him and held him tight while our life crashed around us nothing would ever be the same. It is pain so deep to know your beautiful blonde, innocent baby could die and it seemed impossible that we, his parents couldn't protect him.
Gabe endured 38 MONTHS of chemotherapy, spinal taps, bone marrow biopsies, blood transfusions, two bouts of pneumonia, viral meningitis, chicken pox, shingles, enterocolitis, excruciating pain from the chemo, and so much more.
Gabe's a tough little fighter! He is 41 months off treatment, will be 9 years old in May and finish the 3rd grade. He loves soccer, the beach, our dog Max, riding his bike and his scooter and of course loves his big brothers, Nick (16) and Graham (12). Gabe has some challenges as a result of the prolonged chemo, especially the spinal taps where chemo agents were put directly into his spinal fluid, which circulates around the brain, but it's nothing he can't overcome.
It's still a very hard story to tell.
At what point did you realize that you wanted to give back in some way or to help others who battle childhood cancer?
About a year into Gabe's treatment. We realized there was no emotional/peer support for families and that they were not being given educational resources to understand their child's illness. I felt very obligated with my education and first hand experience to try to improve the system for the hundreds of parents who would have their child diagnosed at Primary Children's Hospital. We started by reviving the local Candlelighters for Childhood Cancer Chapter, held the first 'Light of Our Lives' event and raised $50,000. We were able to put childhood cancer educational books, parking passes, meal vouchers, long distance phone cards, toys and more into family's hands. We hired a Parent Support Coordinator, a parent who had been there, to help families in the initial stages of the crisis cope and get plugged into all possible avenues of support.
I met an amazing woman, Gigi Thorsen during Gabe's initial hospitalization, her daughter Kelsey, 7 years old had just been diagnosed with leukemia. Gigi and I became friends and to all our horror Kelsey died 26 days into her treatment from septic shock. Gigi founded the Gold Ribbon Childhood Cancer Awareness Ribbon in Kelsey's memory. We passed out thousands of cloth ribbon, then moved on to the gold metallic ribbons. Over 350,000 ribbons have been distributed world wide and the gold ribbon is now recognized as the awareness symbol of childhood cancer. Gigi oversees an online message board for families who have lost a child to cancer, called DayByDay.
I work every avenue to advocate for kids with cancer. I am a member of the 'Parents Advisory Board' at Duke University's McGovern Children's Hospital. I continue to remind the administration what matters to families on a daily basis, what makes the devastating ordeal of childhood cancer a little easier. Also, I am a Charter member of the National Cancer Institutes (NCI) CARRA (Consumer Advocates in Research and Related Activities) program. This is a program of professional cancer advocates who provide insight to the Director of the NCI on research initiatives, community educational resources, legislative advocacy, lobby for increased funding for childhood cancer and as always increased awareness.
When you look at the awareness of breast cancer created by nonprofits like the Breast Cancer Coalition and the very well known Susan G. Komen Foundation as well as the work done on pediatric HIV/AIDS behalf by AmFar and Elizabeth Glaser Pediatric Aids Foundation you realize it's really just a matter of getting the word out. People care, they want to help.
The organization was founded in December of 2000. How did the idea for RAC come about?
My term as President of the Rocky Mountain Chapter of Candlelighters for Childhood Cancer was ending, we had moved from Utah to Virginia and I wanted to continue helping families. I was invited to sit on the National Candlelighters Board of Directors, but found I liked directly helping kids with cancer and their families. So, Corby Short, RAC Co-Founder and Director of Program Services and I brainstormed a way to show the kids how much people care about their struggle using something all kids love - music. Music played a big part in our families coping, enduring and healing. I researched the use of Music Therapy with pediatric oncology patients and visited several hospitals actively using Music Therapy in this setting and it all came together. Create awareness, so people understand that cancer is the #1 disease killer of our children, and teach them that music can be an important part of their 'cure'. Too many times we saw kids survive but with a broken spirit, music was the common denominator to empower the kids to fight and survive not just physically but emotionally with their spirits intact.
Were there any challenges with the start up of the organization?
Only finding the time while raising three boys, money and wanting to make sure what we were doing would really have an impact and help kids. We are an all-volunteer, grassroots organization that is driven by parents of kids with cancer, and parents who have lost their child to cancer, we've been there. We know how important one small act of kindness can be during the long and devastating ordeal of childhood cancer. I remember a harpist playing in the waiting room one time during the long waits of Gabe's treatment, it brought the calm and healing for the soul that only music can.
What types of programs and services do you offer? How many events do you have each year?
We hold 'Stars Night Out' events all around the country. We have taken kids on treatment to meet Barenaked Ladies, Sister Hazel, Matchbox twenty, Dave Matthews Band, Edwin McCain, Nelly Furtado, No Doubt, Mary J. Blige and others. The joy the kids get from these events is priceless. They spend private time with the artists before the show; the special attention really gives the kids an emotional boost. We are continually amazed by the comments from the nurses, Child Life and Social workers who accompany us. For children that are too ill to leave the hospital we have a special program called 'Gifts from the Heart', the kids receive a gift bag filled with a CD player, batteries, CD's from various artists, T-shirts, knit RAC hats and any special request items.
'Healing Hearts with Music' is the Music therapy component of our program; we have grant applications out and hope to start our first hospital based program this year.
What has been your greatest accomplishment with the organization?
The smiles on the faces of the kids, watching them get to just be kids for an evening, knowing they had to rearrange their chemo schedule to attend. Many of the kids only have the stamina to make it through part of the evening, but they leave knowing these amazing artists valued them and recognized how hard it is to be a kid with cancer and made time to visit with each of them. Our theory that we could bring the healing power of music to children battling cancer proved correct and we are continually awed by the love and respect shown to these brave children.
Did you ever expect to be where you are today?
Well, yes and no. I never do anything half way. Childhood cancer happened to my family, my 2 year old. It changed us forever. I refuse to let it have a totally negative impact on our family. I strongly felt for the sake of all three of my boys that we needed to 'do something' that would positively impact the 1000 children/teens diagnosed each MONTH in the U.S. Gabe says RAC is his and he will run it when he gets done watching Pokemon!
We've been extremely blessed to be so warmly welcomed by the music industry. The artists walk away with their hearts full, realizing that taking those few minutes to meet these brave kids and treating them to their music provides respite from the horrors of cancer treatment if only for a short while. We've been engulfed with love and respect for what we do by Ken Block and all the Sister Hazel guys and are a beneficiary of their amazing event 'Lyrics for Life'. Edwin McCain did the very first 'Stars Night Out' event in his hometown of Greenville, SC. Our 'Stars Night Out' event with matchbox twenty took place a week after September 11th, we were all still reeling, but Rob, Kyle, Brian, Adam and Paul sat on the floor and talked to the kids, laughed with them and genuinely loved spending time with these brave teens, it was a night none of us will ever forget.
What are your current needs and what can others do to help?
Get the word out that childhood cancer strikes over 15,000 children a year, over 3,000 will die from it, making cancer the #1 disease killer of children. Visit us online, www.rockagainstcancer.org to see recent events, sign up for our newsletter, volunteer at a fundraiser, donate gently used CD's, make a donation to help send a kid on a 'Stars Night Out' event or send them a 'Gifts from the Heart' bag. We need what all nonprofits need, dedicated volunteers and Board members and of course money!
Where do you hope to see the organization go and what are your future goals?
We would like to serve every child diagnosed with cancer and make music part of their 'cure'. We would like to expand our 'Gifts from the Heart' program, get corporate sponsors involved donating CD players. We would like to establish a formal Music Therapy program in every pediatric oncology treatment center, only a few have programs now. This is so important, as it has been shown that Music Therapy helps children through painful procedures, and can actually boost their immune system. We will continue to find innovative ways to enrich the lives of children with cancer and to support their families.
Please add anything else you feel is important that we may not have touched upon above.
Cancer has exacted a tremendous toll in my family. My mom was diagnosed with Lymphoma six months after Gabe was diagnosed. Her only comment, 'If Gabe can do it I can do it!' The next summer at our family beach get together she and Gabe were both there, showing off there ¼" new hair. My mom continues to do well. My niece is a survivor of childhood cancer as well, she was diagnosed with Neuroblastoma at 9 months of age and is now 11, another survivor! We did lose my grandfather and aunt to cancer.
Thanks Lisa!
