MODEL OF THE MONTH

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OF THE MONTH

MODEL OF THE MONTH

When 17 year-old Caleb started having flu-like symptoms, his mom, Cindy, thought he might have the same cold his sister was dealing with. Caleb started complaining of a whooshing noise in his ear and losing his balance. There was also a cloudiness in one of his eyes, so his mom knew something more was going on. Cindy made an appointment with the eye doctor, who noted that his optic nerve looked swollen and told them to watch the eye to make sure it did not start to look worse. A few days later, Cindy noticed that his eye started to look glassy and cloudy. Her gut told her that something was wrong. She took Caleb to his pediatrician, who cleaned his ears out and told her to go back to the eye doctor. She made an appointment for the eye doctor and, this time, after checking his eyes again, told Cindy to go home and pack a bag and head to the hospital. The eye doctor knew something was very wrong. Once at the hospital and after several diagnostic tests, at about 5pm in June of this year, Caleb was diagnosed with Medulloblastoma. Medulloblastoma is the most common type of cancerous brain tumor in children. The very next day Caleb underwent emergency brain surgery to remove the tumor, which ended up being the size of a golf ball that was resting on his brain stem. Once most of the tumor was resected, Caleb’s medical team put a drain in to see if the ventricles of his brain would shrink back to their normal size and start to function on their own again. These structures are responsible for the production, transport, and removal of cerebrospinal fluid, which bathes the central nervous system. Unfortunately, Caleb’s ventricles were not doing their job and he needed to have another surgery. Caleb underwent another surgery to install a shunt from his brain into his stomach to drain the excess cerebrospinal fluid that would build up during his brain. During this surgery, his doctors also placed his port for chemotherapy treatments.

Caleb’s medulloblastoma is being treated with six weeks of radiation, which he has already completed, and nine rounds of chemo. His chemotherapy regimen is currently once a month and administered while Caleb is inpatient for several days at a time. He has just recently finished his second round of his chemotherapy. Medulloblastoma is a cancerous, malignant, brain tumor that starts in the lower back part of the brain, called the cerebellum. The cerebellum is involved in muscle coordination, balance, and movement. Though medulloblastoma is rare, it's the most common cancerous brain tumor in children. Caleb is also in physical therapy, gaining his strength to walk again. He has moved from a wheelchair and a walker to a cane and can now even take steps without his cane. He was recently able to move back upstairs to his bedroom that he is now dubbed “Club Caleb”. This was a huge milestone for him and his family.

Caleb’s mom, Cindy, describes him as a very funny and sarcastic young man. He absolutely loves music of all kinds. He loves to memorize the music and words from commercials on television and sing them to his family. His mom shares that he is so rational and down to earth, very kind, and easy to talk to. His positive attitude has been extremely helpful during this difficult time in his life. Caleb recently gave advice and support to another teen, who was undergoing the same type of treatment for a different kind of brain tumor. Before Caleb’s diagnosis, in his junior year, he was Drum Major in his high school band. He was supposed to participate with DCI, a travelling Drum and Bugle Corps troupe. Ironically, due to the COVID pandemic, the travels of DCI were cancelled. Caleb is currently in Orange County Virtual School for his senior year, so he will be able to graduate with his class. Originally, he wanted to become a detective, but since his diagnosis, his hope is to become a pediatric nurse to be able to help others, just like his heroes at Arnold Palmer Hospital for Children. The Brain Tumor Program department at APH has been vital in Caleb’s pediatric cancer journey. Caleb’s family is grateful to have such an amazing program for brain tumors right in their hometown.

Runway to Hope’s initial $1 million contribution supported Central Florida’s first ever comprehensive Pediatric Neuro-Oncology Program at Arnold Palmer Hospital for Children, composed of a team that provides the full range of medical and emotional support specific to pediatric brain tumor patients during and after their treatment. Runway to Hope completed their initial $1 million pledge and in 2019, Runway to Hope pledged $381,824.00 to establish a neuro-oncology laboratory at Arnold Palmer Hospital for Children. This is the next phase of growth as a core of clinical excellence has been built. Runway to Hope is honored to make an investment into their newly established pediatric neuro-oncology translational research program. These dollars will cover start-up costs as well as two years of annual operations ensuring the sustainability and long-term success of this new initiative.

Even during the pandemic, kids and teens are still being diagnosed with cancer every day. A simple fever is cause for Caleb to go to the hospital. Caleb’s mom reminds us that washing your hands, sanitizing spaces, and wearing a mask are all helpful to keep us all healthy and to keep teens like Caleb from not catching simple things like a cold or a stomach bug that might cause him to end up in the hospital. Caleb’s mom is so proud of him. She has said that he does not need to be reminded of when his appointments are scheduled or when to take his medicine. He is an extremely responsible young man. He has been fearless throughout his cancer journey and has remained steadfast in his faith. His mom said that the entire family is closer now and more patient with each other. They have learned to rely on each other and appreciate the help that they have gotten from friends and family. She mentioned that it has always been difficult for her to ask for help, but now she has gotten better at accepting the help that is offered to her. Runway to Hope provided Caleb’s family with a Thanksgiving meal in partnership with Lake Highland Preparatory School, in addition to emergency financial assistance with their car payment. It is for these reasons that Runway to Hope is so special to Caleb and his family.

Without the funding of our biggest fundraising source this year, our Spring Soiree, we rely completely on donors to allow us to continue to grant emergency financial assistance to the children and families we serve. By becoming a monthly donor with Runway to Hope, you are helping us to guarantee assistance for families like Caleb’s, each month.. Becoming a monthly donor is easy! Simply click the “Donate” Button at the top of the page and select the amount that you can commit to every month. Even $5.00 allows us to buy gas to help a family get their child to the hospital for treatment. Thank you on behalf of families like Caleb’s and the staff of Runway to Hope for your continued support.

Runway to Hope / 189 South Orange Avenue, Suite 1800 / Orlando, FL 32801 / 407.802.1544