I became aware of the Children's Brain Tumor Foundation when I was an adult brain tumor patient undergoing chemotherapy treatment. At the time, I had two very young children. I couldn't imagine what it would be like for a child to manage this horrific disease, much less what it would be like for the rest of a family. It was then that I decided that, should I survive, it would be my obligation to do what I could to both find a cure as well as assist those families dealing with this terrible disease. Working with CBTF in its mission has been extremely rewarding for me as it offers a purpose and a way to give back to a society that to which I now have a deep connection. The organization is laser-focused on both finding a cure as well as helping families cope with diagnosis and/or loss of a child. Nobody should suffer with a brain tumor, and least of all chidren. As pediatric brain tumors are the toughest children's cancer, the world should support the mission of the Children's Brain Tumor.
CBTF is an essential organization for anyone who knows and cares about a child with a brain tumor or a survivor of a brain tumor. If you want to make sure that a child or teen patient or survivor and their family receive accurate information, resources and support then CBTF provides all of that and more. The information is accurate, the staff is highly skilled, and professional. Their resource guide gives critical information to parents and professionals. Parkers Brain Storm helps young children understand what brain tumors are about in a way that is not scary and will reduce anxiety. There is a parent 2 parent program to help families connect with others facing the same challenges. There are also many brain tumor survivor support programs to help teens and young adults with the challenges they face long after treatment ends.
CBTF didn't exist when my 12 year old daughter Reina was diagnosed in 1988. We lived through her surgery, radiation and chemotherapy and heard about a group of parents that wanted to support research for pediatric brain tumors. This sounded right to me. At my child's diagnosis, the doctor said that all he had on Reins's diagnosis -- anaplastic ependymoma- was a stack of 100 journal articles. He would treat her as best he could, and since ependymoma was something like medulloblastoma, he would treat her like she had medullo. Twenty years later I can say that we got through Reina's treatment, but this does not tell anything about what we went through. I found solace in the group of parents who had dedicated themselves to funding research, and within a year, joined them. We supported each other, cheered the victories and mourned the losses. And there were many losses. But within three years, we had raised enough money to fund a research project in Interluekin II. I couldn't believe that we were actually going to pay a scientist to study a promising new treatment! In the years since, we have funded about $7 million in research for pediatric brain tumors and support for families of these kids. In fact, if my daughter were diagnosed today, she would have surgery and radiation, but no chemo -- the result of research that showed that chemo did not add to survival rates. I spent many years talking to parents of kids with brain tumors, helping them negotiate the medical system and get the best treatment for their children. When CBTF hired a social worker (we now have 2) I continued on a limited basis, and became part of CBTF's Parent 2 Parent network. CBTF has positively impacted on many families, and I am always gratified to know that CBTF was able to help a family through the most difficult of life experiences. And I am please to write that Reina survived her tumor and treatment, went on to finish school and college, got married and has a family. I often say that she recovered very well, but I am still working on my own recovery! Part of my recovery is working to make sure that children diagnosed with a brain tumor today have better options than my child had, and CBTF is my avenue for doing so.
Danny came into this world on a rainy day in October. He was born 15 minutes after we arrived at the hospital and instantly brought joy to our entire family. At 6 weeks old, Danny was diagnosed with Pyloric Stenosis. Then at 2 months old, he was diagnosed with a bi-lateral hernia. Danny was no stranger to the hospital by this time in his short life. Things settled down after a while and we thought the worst was over for him--just bumps and bruises from here on out. At 26 months old, we thought Danny had a routine sinus infection. We went to see his doctor; who examined him and sent us for a Cat Scan. Then we went to the emergency room at Schneider's Children's Hospital.. We were told that he had a brain tumor. Medulloblastoma. After 2 tumor resections, chemo, and radiation - Danny surrounded by his family left us as quickly as he arrived. Danny loved home made chocolate chip cookies, Winnie the Pooh, Robin from Batman, Buzz & Woody, Rocco's Pizza, and the movie Back Draft. He wanted to be a fireman and a golfer just like his Poppy. Danny taught us many things while he was with us and still teaches us things today. He went through so much and never complained. He always had a smile and a hug for everyone. We miss him terribly still after 11 years, but still feel his presence in our hearts everyday. In his honor, we hold a golf outing every year to memorialize him and raise funds and awareness for the CBTF. We never could have gotten through this with out the love and support from our family and friends. Because as Danny would always remind us: "You go - We go!" We have been luck enough to be able to live that motto with help of the CBTF. This organization helps families like us everyday. Families that have to journey down the path that we have traveled and those who have the path of surviorship. That is the goal. We have people from all different backgrounds that are all working together for the same common goal. We want to stop this cancer so no other child and their familes have to join us on this journey. If you have read this far, please join us in our efforts. This is a great cause that will let you know EXACTLY where the funds are going -- to research, information, and help directly to those who need it. It has been an honor to be apart of the CBTF. Timothy and Patricia Jegle