“I have witnessed her little legs go to skin and bones after weeks of throwing up, just to learn to walk all over again.”- Lacey, Saylor’s Mother
If we all could see the world through the eyes of a child, we would see the magic in everything. This quote reminds the Runway to Hope team of a beautiful little girl named Saylor. Saylor was diagnosed with High Risk Acute Lymphoblastic Leukemia on October 23rd, 2017 at just 23 months old. Her family noticed Saylor had unexplained bruising, was also very lethargic, and refusing to walk. Saylor’s mother, Lacey, thought she was just low on iron or was becoming anemic. Little did they know when they took Saylor to the emergency room, they would be faced with a cancer diagnosis and a long journey ahead. Saylor’s cancer journey had a rough start. Lacey felt like it was a guessing game every day. Some days her stomach and bowels made her feel horrible due to her medications. Due to Saylor’s age, she was unable to explain what was wrong or what was making her feel sick. Her parents just had to hold her close to try to comfort her. Currently, Saylor is in her third cycle of maintenance, meaning monthly medications and one to two chemotherapy visits at the hospital, but the journey to this point was a rough one. Saylor spent many days in quarantine at the hospital during her treatments to reduce the risk of exposure to germs. Saylor also endured three surgeries in her year of treatment. She had a port surgically placed, but Saylor’s body was producing e.coli at unhealthy levels twice during the first few months of treatment. The doctors decided to remove her port, allow time for the bacteria to be treated, and then surgically place the port again.
Another difficult part of the family’s journey, was that Saylor has five siblings and their home was in Daytona Beach, which meant being over an hour away from the children’s hospital. Lacey explained she was a stay at home mom before Saylor’s diagnosis. After her diagnosis, Lacey would stay with her at the hospital, which meant dad was thrown into working full time, taking care of the five children at home, and making sure other responsibilities were taken care of. Their daily life was flipped upside down. Through all of this Saylor’s parents have been so proud of the little girl Saylor has become. Lacey states, “Saylor has grabbed the reigns of cancer and shown that she will not lie down and let it beat her. I have seen her cry many tears because the medicine makes her stomach hurt so badly and cause bowel issues, but get up and walk through it. I have witnessed her little legs go to skin and bones after weeks of throwing up, just to learn to walk all over again. I am incredibly proud of my fighter.” Saylor, who is now three years old, enjoys going to Disney, playing with her siblings, and loves pretending to be a princess. Saylor is a daddy’s girl at heart. She knows if Mommy says no, daddy will say yes! Even though her cancer treatment is not over, Saylor does not let anything stop her from being a kid!
When a child is diagnosed with cancer and has started treatment, their immune systems are very low. They are at a higher risk for infections and bacteria to take over their bodies. Not only do families have to struggle through treatments and the side effects that come with that, but they also have to battle things like the common cold, which could be fatal if not treated properly. When other children just rest at home, these children are admitted for weeks for testing and medicines every day to make sure they are healthy enough to start their next chemotherapy treatment. If a child without cancer catches a fever, they can take medicine and wait out the virus, but a child with cancer has to be rushed to the emergency room. Most likely admitted for days. Lacey wants everyone to know, “As overwhelming as it all seems, when first diagnosed breathe and take it all in. I never knew all the medical terms I could comprehend until it was thrown on our doorstep. If you haven’t been affected by cancer yet, hug your baby and be thankful for them every day.” During this process, this family has learned how precious life is, how to slow down and enjoy their family time together.
Acute Lymphoblastic Leukemia, or ALL, is the most common type of cancer diagnosed in children and it represents approximately 25% of cancer diagnoses among children younger than 15 years of age. There are approximately 2,900 children diagnosed with ALL each year in the United States. Guidelines for cancer centers and their role in the treatment of pediatric patients with ALL entails a complicated risk assignment, intense therapies, a crucial need for rigorous supportive care, countless transfusions, cautious management of infectious complications, and emotional, financial, and developmental aid. Dramatic improvements in survival have been achieved in children and adolescents with pediatric cancer. For ALL, the 5-year survival rate has increased over time from 60% to approximately 90% for children younger than 15 years of age. Childhood and adolescent cancer survivors require close follow-up, considering cancer therapy side effects may persist or develop months or years after treatment. The treatment for girls diagnosed with ALL will take 1-2 years from the initial diagnosis. Treatment for boys takes 2-3 years of treatment from initial diagnosis.
Our team at Runway to Hope loved seeing this little girl light up at the Bloomingdale’s Bash last year in 2018 after seeing all of the princesses and having her nails painted! We are very thankful that Saylor is able to join us again this year to walk the stage in the spotlight! We hope you will join us on May 18th, 2019 to witness little Saylor shine along with the other children currently battling cancer in Central Florida! Lacey wanted to thank our sponsors and donors, “Without your help, stress would overwhelm us, as our child’s health is always and foremost first on our plate during our cancer battle, but bills and their collectors don’t care when tragedy strikes.” To learn more about Runway to Hope’s Bloomingdale’s Bash Weekend and the Spring Fashion Soiree, visit: www.runwaytohope.org.
Runway to Hope / 189 South Orange Avenue, Suite 1800 / Orlando, FL 32801 / 407.802.1544