Tori has been through a lot in her 23 years. When she was just two, she fell at a family friend’s house and was obviously in a great deal of pain. At first, her parents assumed the pain was because of her fall. But an astute eye doctor noticed something else. Tori had a large tumor behind her eye and, her fall put pressure on it, which was the cause of her pain. She was diagnosed with stage 3 orbital rhabdomyosarcoma and began treatment immediately.
She had chemotherapy, radiation, and an 8-hour surgery to remove her eye and everything inside her eye socket.
“All-in-all, my treatment went pretty smoothly,” Tori recalled. “I wasn’t sick very often from the chemo and recovered from the surgery without pain medication. After it was over, I started to adjust to having a prosthetic eye.”
Tori naively believed that surviving would mean that she would be able to leave cancer behind. But that was not to be. Because of the harsh treatments necessary to achieve a cure, many children experience a wide variety of side effects, which can be realized immediately after treatment or years later. For Tori, the damage done by her treatment began to manifest itself right away.
Tori had to wear braces on her teeth for ten years. She had multiple jaw reconstruction surgeries, wore upper dentures, and finally got dental implants. Because the scar tissue from her surgeries made it impossible for her prosthetic eye to stay in place, she also had several surgeries to build up her eye socket. Tori estimates that throughout her life, she has had around 100 reconstructive surgeries to rebuild her face. That can be very hard on a girl at any age, much less as she is coming of age.
“The situation caused a lot of self-esteem and anxiety issues for me in school,” Tori said. “I wore my hair over my eye during high school so people couldn’t see. In college, I sucked up my anxiety and wore an eye patch. Most people were nice about it, but of course, some people stared or had a question or comment.”
Things have gotten a lot better for her over the last few years. She finally got a working prosthetic eye and dental implants that have boosted her confidence. While she has missed some school because of her surgeries, she is currently studying nursing with a minor in psychology at Kennesaw State University. She hopes to become a pediatric oncology nurse practitioner at Children’s Healthcare of Atlanta, where she spent most of her youth in treatment.
“I really want to use my experience to help kids,” she said. “Growing up is already hard enough as it is, and I want to be able to put them at ease when they’re in the hospital and to show them that they’re not alone. Having someone who’s been through what they’re going through helps both the child and the parents.”
For all she’s been through, Tori has an amazingly positive outlook.
“It took a lot of faith and the support of my family and real friends to get here,” Tori said. “It’s taken a long time, but things are getting better now because I can finally see the end.”
Just after her third birthday, Madeline had terrible leg pain and refused to walk, so Bethany took her back to the hospital. Madeline’s blood work showed that inflammation markers were very high, so doctors ordered a total body scan. They found a football-sized mass in her abdomen that had smashed her bladder and pushed into her intestines, kidney, and liver. A biopsy of the mass confirmed a diagnosis of neuroblastoma.
Another part of the APMP is the genetic predisposition program, which provides care for children who are at risk for developing cancer due to a cancer predisposition syndrome or a family history of cancer. Madeline’s younger sister, Sedona, has a known genetic disorder called hemihypertrophy. So she was referred to the genetic predisposition clinic to see if her genetic mutation was the same as Madeline’s. If a genetic link between the two was revealed, it might indicate that Sedona had a high risk of developing cancer in the future.
The funds raised by Lendmark support CURE’s Precision Medicine Initiative, which involves precise gene-based treatment. CURE is leading the way in advancing this innovative therapy. Our work would not be possible without Lendmark’s support.
No one would have blamed Anna if she became sad and angry as a result of her limitations and very serious challenges caused by the brain cancer and treatment. But that just wasn’t Anna. From the time she was diagnosed and received an outpouring of love and support, including gifts and cards from family and friends, Anna became very aware of the other children at the hospital who were not getting the same kind of support. It touched Anna deeply and was very hard for her to accept. In spite of the fact that Anna was almost completely deaf, had severe scoliosis from radiation treatments, significant balance issues, loss of feeling on one side of her face, and many other permanent disabilities, she became obsessed with finding a way to help the other children with cancer. The idea of Anna’s Angel Fund was born.
Effingham County resident, Catie Wilkins was diagnosed with an aggressive brain tumor on her first birthday. Catie fearlessly fought her cancer, but the chemotherapy compromised her immune system so severely that she succumbed to a common virus before she reached her fifth birthday. In response to this tragedy, a special community has formed that is making a meaningful impact in the fight against pediatric cancer.
Watson had acute lymphoblastic leukemia, which is the most common childhood cancer and the most treatable. Since it was a Friday when he was diagnosed, Watson was scheduled for port placement surgery the following Monday morning. That day would also start a chemotherapy regimen that would last more than three years. For young parents, it was a daunting prospect.
