- Catherine, Daniel’s Mother
To kick off the new year, Runway to Hope would like to feature a little boy who has not yet walked our Runway, but will be hitting the stage May 19th, 2018 for his grand debut! Daniel was your typical active nine-year-old, who loved playing basketball, riding his scooter, nerf gun wars, playing video games, wrestling, and STEM activities after school. Daniel's only complaint was leg cramps that started in December 2016. His mother Catherine summed it up as growing pain, however it continued off and on until mid-January. Daniel began to complain that his right leg would hurt climbing stairs and Catherine told him they would make an appointment. Like any mother Catherine thought this was a way for Daniel to miss school. When Daniel told his mom to make a doctors appointment, his mother knew it was serious. On January 27th, his pediatrician said it was possible he pulled muscle or had growing pains. The location of the pain was above his right knee, so the diagnosis was rest/ice for ten days, use bengay cream when needed, and if pain continued, then make another appointment. For a few weeks his leg would not hurt as bad in the morning and Daniel would only begin to complain after a full day of activity. By February, he complained of the same pain and Catherine noticed there was a knot above his knee. They immediately returned to the pediatrician whom sent them to the specialist and an MRI and X-ray were ordered on the same day. Shortly after the initial tests, a bone scan was also ordered. When the test results came back, Catherine heard the words that no parent ever wants to hear. "Your child has cancer." Her stomach bottomed, the room began to spin, her head swirled and she told the surgeon, “Save my son’s life!” Daniel was diagnosed with Osteosarcoma in his right leg. They started treatment immediately. When Daniel’s parents told him he had cancer, his first words were, “Am I going to Die?” Catherine responded and said, “Absolutely not, that is why we are here.” Daniel was then treated at University of Florida Health Shands Hospital for the duration of his treatment.
Like most families, cancer comes as a shock, but Catherine knew Daniel was a fighter. He showed his true strength from the moment he went in for his first x-ray and MRI. He always asked his own questions and understood what was going on during his journey. Daniel had his biopsy on the same day he was diagnosed. The very next day, Daniel had surgery to have his port installed to start his treatment as well as MAP protocol chemotherapy. He received ten weeks of chemotherapy and then had a very unique surgery on May 18, 2017. Daniel was given three options to remove the tumor in his leg and he choose a special procedure called Rotationplasty surgery. His tumor was above his knee on his right femur, which meant taking the tumor out was paramount to his success for life. This surgery was removing the cancerous tumor portion of his leg to under his knee. Then, the bottom half of his leg from the knee down was rotated 180 degrees making his ankle his new knee. Daniel’s ankle is now acting as his knee. The bottom of his leg is a prosthetic and after this special surgery, chemotherapy continued for another 20 weeks. On October 3rd, 2017, Daniel received his results from a bone scan and it showed No Evidence of Disease! Daniel had his port removed in November, which meant no more inpatient or outpatient chemotherapy. He had officially started the end of this battle!
Osteosarcoma is the most common type of bone cancer, and accounts for about 3% of cancers that happen in children. Osteosarcoma usually develops from osteoblasts, the cells that make growing bone, it most commonly affects teens who are having a growth spurt. Scientists have not discovered the cause of most cases of osteosarcoma. Osteosarcoma can also develop as a result of radiation to an area of the body. It can be associated with specific genetic changes and diseases. When treated appropriately, patients with high grade osteosarcoma in one location have a survival rate of about 70%. The survival rate is higher for patients with low grade tumors, and it is lower for those whose disease has spread throughout the body and for those whose tumors have a poor response to chemotherapy.
Catherine reflected on their journey and states the Daniel held his head high. He was stellar, even with horrific side effects, he fought hard, smiled, laughed, cried, made jokes, and through this he was a child that faced fear and made adult decisions. Daniel went through something that most adults cannot fathom. His mother says, “Of course he had bad days from the treatment making him deathly sick, along with mood swing and other side effects like memory loss, but we would talk everything out and he did not let the negative consume him. He would always take a deep breath and I’d ask, are we ready to continue this fight? He would respond by putting his forehead to mind and say, Yes, I’m fighting and I will win.” With Daniel’s great sense of humor, he actually nicknamed his new leg “KFankle” which stands for; K, his new knee, F, his new placement for his foot, and ankle which took place of his knee.
This amazing fighter’s goals are to walk and run again. He is determined to return to school this month without any assistance. This includes his walker and crutches. Daniel now is able to wear his prosthetic from the time he was wakes up until bedtime, roughly 10 to 11 hours a day now. Daniel hopes to become a YouTube star or a pediatric oncologist to save children just like him.
Runway to Hope was honored to assist this family with their car payment and rent in 2017. Catherine says, “Having to receive assistance has been eye opening. It's not something any parent wants to admit when they need financial assistance, however when you aren't able to work for weeks at a time you do have to receive assistance. Between family, friends, and Runway to Hope we have been able to receive an outpouring of assistance and love.”
Runway to Hope is looking forward to Daniel walking the stage in May and cannot wait to see him shine for everyone to see!
Runway to Hope / 189 South Orange Avenue, Suite 1800 / Orlando, FL 32801 / 407.802.1544