Life is never dull in our household with our two beautiful warriors! Our youngest, Kaylee, is 13 years old and has Down Syndrome, celiac disease, hypothyroidism, hearing loss, a history of choking, GERD, and several other medical conditions. Kaylee spent the first five weeks of her life in the NICU, and she had duodenal atresia surgery when she was four days old and g tube placement surgery when she was four weeks old (g tube was removed at five months).
At two months of age, Kaylee had open heart surgery where her tiny heart was reconstructed due to an ASD and VSD repair. Through her first three years of life, Kaylee was in and out of the hospital for various medical surgeries and procedures such as ear tubes, endoscopies, bronchoscopies, as well as therapies and numerous specialists follow up appointments. At the age of three, Kaylee also underwent spinal fusion at C1/C2 for an occipital cervical issue that sometimes occurs in children with Down Syndrome. Then at the age of four, Kaylee had tonsillectomy to try to assist with sleep apnea. Since that time, she continues to have regular endoscopies to monitor her celiac disease and acid reflux, bloodwork to check on the fluctuating thyroid levels, audiology tests to monitor her hearing loss, and regular visits with endocrinology, cardiology, gastroenterology, and otolaryngology. Kaylee also receives weekly speech therapy.
Kaylee is a current seventh grader at High Bridge Middle School and is an active young lady participating in cheer for both the Hunterdon Huskies’ Inspiration Team and her school’s basketball teams, performing in her school’s chorus recitals and plays, and attending social skills girls group classes at Hope for All Learners in Lebanon. Kaylee is extremely resilient and a child who is almost always smiling no matter what she is going through in life. Her pain tolerance is remarkable, and she is a very bright young lady who is determined to make her mark in life. We aren’t quite sure what the future holds for Kaylee, but we know her attitude will take her far in life!
Our second warrior, Penny, is our oldest daughter. Throughout her childhood, Penny was a healthy girl who rarely needed medical attention.
However, that all changed for Penny when she was diagnosed with stage four osteosarcoma two days before her 14th birthday. Penny’s primary tumor was in her right femur with nodules in both lungs and her right hip. At the time of diagnosis, Penny was given a 30% cure rate which means there was a 30% chance that Penny would survive for five years.
Over the next nine months, Penny underwent surgery to place a port for chemo, limb salvage surgery to replace most of her femur and part of her tibia with a titanium rod, double thoracotomies to remove numerous nodules, hip surgery to remove several nodules, and numerous rounds of chemo. After Penny got through chemo and surgeries, she then underwent nine months of bi-weekly and then weekly immunology IVs to prevent recurrence. Penny beat all odds and remained NED (no evidence of disease) for two and a half years after her treatment ended in November 2021. However, in June 2024, one day before her high school graduation from Voorhees High School, a single mediastinal tumor was found on her routine chest CT.
Treatment for the single tumor included surgery in Morristown and then consultation with Memorial Sloan Kettering (MSK) and Cleveland Clinic where it was decided that radiation would be the best course of action to try to prevent recurrence. However, in September 2024, during her three-month routine scans, several pleural and subpleural tumors were found in her right lung. We consulted with MSK and Cleveland Clinic again and we were told her tumors were inoperable and the goal was no longer to cure Penny but to try to stop the progression. She is taking an oral chemo called Cabozantinib (Cabo). The hope is that this drug will keep her stable and prevent new tumors from growing. We are honored to have been selected by the Shannon Daley Memorial Fund. We are excited to be a part of this organization.
