University of Minnesota Amplatz Children’s Hospital share why they are courageous.
This guest blog post by Greg Norman, professional golfer and host of the Franklin Templeton Shootout
This December, I will be gearing up for the 25th annual Franklin Templeton Shootout! Entering its 13th year at Tiburon Golf Club at The Ritz-Carlton Golf Resort, Naples, the Shootout will once again feature 24 of the world’s best golfers playing on two-man teams in a mixed format of modified alternate shot, better ball, and scramble. As we celebrate our 25th anniversary, we are excited to continue our long standing relationship and support of CureSearch for Children’s Cancer.
CureSearch is especially close to my heart because I believe that every child should be given the chance to live a long and happy life, and maybe even learn to play a little golf. Over the years, we have had some amazing childhood cancer survivors speak at our event and last year was no different as we heard the story of wilms tumor survivor, Mikayla Sweeney. First hand stories such as these, remind each and every one of us just how important these critical fund raising efforts are. These donations help fund innovative research, ensuring new treatments are developed for those affected by children’s cancer.
Thanks to the support of Franklin Templeton Investments, our supporting sponsors, my fellow PGA TOUR professionals, volunteers and the Southwest Florida community, we have been able to raise essential funds for charities who are working hard to ensure a better future. I hope that you will join us for the 2013 Franklin Templeton Shootout, December 11-15 at Tiburon Golf Club at The Ritz-Carlton Resort in Naples, Florida. To learn more visit www.franklintempletonshootout.com.
Ila Jean was a healthy 18-month-old when she developed a fever and black eye that caused her mother, Jennifer, to bring her to the family doctor. When the doctor noticed that Ila Jean’s belly was distended, he ordered an ultrasound and blood work as a precaution. During the ultrasound, Jennifer noticed that the ultrasound tech looked concerned and seemed to be taking extra pictures. By the time Jennifer returned home from the doctor with Ila Jean, she had a dozen messages urging her to bring Ila Jean to the hospital immediately. There, the family received the heart breaking news that Ila Jean had stage 4 neuroblastoma.
Neuroblastoma can originate in the adrenal gland, neck, chest, abdomen, or pelvis—Ila Jean had developed a tumor in her abdomen, which the doctor had noticed during Ila Jean’s visit. Ila Jean’s neuroblastoma had metastasized to her bone marrow. About half of all neuroblastoma cases have metastasized by the time they are diagnosed. During her first week in the hospital, Ila Jean had surgery and started chemotherapy. After her fifth round of chemotherapy, she had another surgery to remove part of her tumor. At Sloan Kettering, Ila Jean had antibody therapy to help get rid of any lingering neuroblastoma cells. In January of 2008, Ila Jean was officially cancer free.
After treatment, the family resumed life as best they could. However, the fear of relapse hovered in the background. In May of 2011, the Rathbone family received the news they had dreaded: Ila Jean had relapsed. Doctors found another tumor in her abdomen but they were hopeful that the surgery to remove the tumor and more chemotherapy would bring Ila Jean’s disease into remission. In December of that year, the family received more devastating news: Ila Jean’s doctors found that her tumors had spread. Ila Jean bravely endured 27 rounds of low dose chemotherapy and prepared for more surgery. Shortly before scheduling the surgery, doctors noticed that the cancer had continued to spread and recommended an NIH trial for Ila Jean. After several weeks on the trial without improvement, Ila Jean went home with her family to enjoy life as much she could outside of the hospital. After a courageous fight, Ila Jean lost her battle with cancer on April 2.
1. Childhood cancer is the leading cause of death by disease among children in the United States.
2. Every day, 36 children are diagnosed with cancer.
3. The average age of diagnosis is 6.
4. Cancer affects all ethnic, gender, and socio-economic groups.
5. More than 40,000 children undergo treatment for cancer each year.
6. One out of 5 children who are diagnosed with cancer do not survive.
7. 3 out of 5 children who survive, suffer devastating late effects such as secondary cancers, muscular difficulties and infertility.
8. In the last 40 years, the overall survival rate for children’s cancer has increased from 10% to more than 80%, but for many more rare childhood cancers, the survival rate is much less.
9. There are approximately 350,000 adult survivors of children’s cancer in the United States.
10. Every year, 13,500 parents hear the words “your child has cancer.”
For more children’s cancer information, visit CureSearch.org.
Teri Freeman is a Birmingham CureSearch Walk committee member. Her daughter, Bekah, was diagnosed with osteosarcoma when she was 12 years old. Since then, Teri has become an advocate for children with cancer, telling anyone who will listen about the importance of increased funding and awareness.
Q: What lead you to CureSearch?
A: My daughter was diagnosed with osteosarcoma when she was 12. When she was diagnosed we wanted to gather every bit of information that we could. After seeing what children with cancer go through, the lack of funding, and the outdated treatments, I knew that I had to find a way to give back. I heard about CureSearch while at the hospital one day, and knew that it was perfect for me.
Q: What lead you to becoming a CureSearch Walk Committee Member?
A: I followed CureSearch through the years and when I received an email about the first Birmingham Walk, I jumped on board. The first year, I signed up for the Walk, but couldn’t attend, my daughter attended the Walk on my behalf, and now is involved with CureSearch as well. Last year, I signed up to be a committee member, fundraise and spread the word as much as possible. This year I am on the committee again!
I will tell anyone about the importance of helping children with cancer. A lot of people are weary of donating, but I like to remind them that the money is going to help children like my daughter. Even if they can’t come to the Walk, they can donate or be a virtual walker. Even something small can make a big difference. The Walk gives me a way to tell others about something that I am passionate about.
Q: What is the hardest part of being a Walk committee member?
A: Knowing how much more funding is needed to advance treatments can be discouraging, but I always tell myself that every little bit counts. It is also hard to get people to talk about children’s cancer. It’s a hard topic for people to discuss, but once I present them with the facts, they are much more eager to get involved. I like to remind people that I wasn’t a cancer mom until the day that my daughter was diagnosed.
Q: What is your favorite part of the CureSearch Walk?
A: Seeing the children thriving is the best part. Knowing that the money that I helped raise is going to make better treatment for them is an amazing feeling. The day is all about celebrating the progress we have made, but also recognizing how much more we have to do.
Lisa Diller, MD, chief medical officer at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, was asked to answer these important questions.
What signs might lead a child’s pediatrician to suspect cancer?
Cancer is very diverse, and diagnosis is further complicated because many signs and symptoms—like fever, bruising and headaches—are normal in healthy children.
Pediatricians are extremely skilled at distinguishing the usual bumps and pains from the concerning ones. They sense which symptoms truly need evaluation and astutely order tests based on the character, duration and severity of symptoms—and oftentimes their own instinct—to properly diagnose children.
What advice do you have for parents whose child has been diagnosed with cancer?
For most pediatric cancers, parents should remain positive. Cure rates have been steadily improving.
For instance, nearly 90 percent of children with standard acute lymphoblastic leukemia (ALL), the most common form of pediatric cancer, are cured with current therapy, and the long-term cure rate for Hodgkin lymphoma is 97 percent. The five-year survival rate for all childhood cancers combined is 83 percent, up from 58 percent in the mid-1970s. Many families have experience with cancer in elderly adult relatives, and it’s important to keep in mind the good prognosis in children.
CureSearch for Children’s Cancer this week announced the recipients of its Acceleration Initiative grants, awarding $5 million to children’s cancer researchers studying areas critical to achieving breakthroughs in treatments and with the potential to reach patients in early clinical trials within three years. New treatments are important because 40,000 children undergo cancer treatment each year, and cancer remains the leading cause of death by disease in children.
“Working with our Scientific Advisory Council, we identified three grand challenges that represent research barriers that need to be overcome in order to truly advance the field and create a lasting impact for kids with cancer,” says Laura Thrall, president and CEO of CureSearch. “We are thrilled to be funding research with patient-centric outcomes that not only addresses unmet needs but also uses innovative and novel approaches to do so.”
The first ‘grand challenge’ invited investigators to develop novel approaches to treating metastatic disease (when cancer spreads to new locations in the body), with the potential for broad applicability to multiple cancers and/or patient populations, that have a high probability of clinical application within 3 years.