The mission of The Super Jake Foundation is to fund research to find a cure for neuroblastoma more...
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Neuroblastoma is a childhood cancer, which usually strikes children
before the age of five and originates from neural crest cells more...
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Jake was just three years old when he was diagnosed with stage 4, fully metastasized neuroblastoma more...
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Institutions Awarded Research Grants: 2005-2011
- Northwestern University, Feinberg School of Medicine
- Children's Memorial Hospital Chicago
- Children's Hospital of Philadelphia
- Texas A&M University
- Wisconsin Children's Hospital
- University of Chicago Comer's Children's Hospital
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Super Jake Super Hero Grant Program
Helping families of children with Neuroblastoma
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For more information send an email to info@superjakefoundation.orgOr write to: The Super Jake FoundationP.O. Box 477 Gurnee, IL 60031 Phone: (847) 625-0436 Fax: (847) 625-0224
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Become a Volunteer
To volunteer, send an email with your contact information (including name, address, home phone, fax, cell phone and email address), along with your volunteer interests, to: volunteer@superjakefoundation.org
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Anna O’Connor was a vibrant teenager who was full of life and dreams for the future. She participated in advanced classes in high school and was active in music, sports, and drama. She had many friends and was poised to have a wonderful senior year in high school. That was before she was diagnosed with stage IV neuroblastoma at age 17, just prior to her senior year at Wheaton North High School in 2002.
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“The average age of someone diagnosed with neuroblastoma is around two years old; there are only a handful of people my age with this disease. I’m one in a gazillion,” states Anna. “I had just gotten back from a missions trip to the Dominican Republic when I noticed an odd bulge just below my rib cage. One day I asked my grandfather, who is a doctor, what he thought. He discovered a large mass in my abdomen and quickly sent me for scans and surgery. Four days later, on July 4th, I found out that I had cancer. For most kids, by the time they are diagnosed with neuroblastoma, it has already spread throughout their bodies. In my case, in addition to a tumor the size of a cantaloupe, they found cancer in my lymph nodes and bones,” recounts Anna about her diagnosis.
Anna immediately began treatment at Children’s Memorial Hospital. For the next six months, she endured seven rounds of chemotherapy and spent a significant portion of time in the hospital to receive chemotherapy treatments or to recover from infections and complications resulting from chemotherapy. She had surgery to remove the main tumor soon after Christmas during her senior year of high school. Despite all of the chemotherapy treatments she had endured, the tumor had not decreased in size. After more than 12 hours of surgery, only 85% of the tumor was able to be removed. Anna endured 42 rounds of radiation after the surgery, but her body was still ravaged by cancer.
“Even when I was not in the hospital, I felt pretty awful all the time. The chemo and radiation made me very sick; I lost about 40 pounds and all my hair. It was very difficult to look in the mirror and see someone so completely different than who I had been. Not only was my hair gone, but my body had taken such a beating that I hardly recognized it. The tube sticking out of my chest was a constant reminder that I had this really awful disease,” Anna says.
The standard treatment Anna received after her partial tumor removal did not rid her body of cancer, so she has been forced to turn to experimental treatments. The first clinical trial was a high-dose MIBG radiation treatment at Children’s Hospital of Philadelphia, during which radiation was injected directly into Anna’s body. “This made me so radioactive [that] I couldn’t have visitors for a week; even the nurses wouldn’t come into my room. The walls, floors, and everything else in the room were completely covered in plastic to protect them from the radiation emitted from my body,” Anna sadly recounts.
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Anna has since endured multiple rounds of chemotherapy, many rounds of radiation and has participated in numerous additional clinical trials including monoclonal anti-bodies (3f8), a next generation targeted chemo (ABT-751), a newly engineered biological compound (CEP-701), Fenretinide XLS, rapamycin, and sunitinib. Anna is still plagued by disease, and it has recently spread from several bones to her lungs and abdomen. She has been unable to rid her body of neuroblastoma. She is currently undergoing her 7th round of Irinotecan/Temodar/Celebrex combo, which involves two weeks of chemotherapy with a third week off. Unfortunately, in spite of a recent drop, her catecholamines (a tumor marker) have been on a steady rise; the consensus is that this treatment has not stopped the disease’s progression. Nonetheless, Anna tries to remain optimistic about her treatment. She is currently enrolled in a clinical trial at Children's Hospital of Philadelphia that is funded by The Super Jake Foundation.
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Despite her constant, daily fight against neuroblastoma, Anna has persevered. She is now 26 years old and she graduated from Wheaton College in May 2007, majoring in psychology and minoring in mathematics. This spring anna finished off her masters degree in Clinical Psychology from The Wheaton College Graduate School. Although what the future will bring is uncertain, Anna continues to live life to the fullest day-by-day. She has made it her mission to give voice to those who battle the insidious disease that has robbed countless children and young adults of life. As Anna so eloquently reminded the participants at the recent Mix/Super Jake Foundation charity golf outing, "the road to hope runs straight through the 18th fairway." She also thanked the Super Jake Foundation and its supporters for helping her to "live to fight another day."
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