Penny was diagnosed with neuroblastoma, a solid-tumor cancer with a survival rate of about 50%, three months after her baby brother, William, was born with a life-threatening heart condition. Today, William is thriving at home and Penny is in remission.
Penny’s final immunotherapy treatment was on Sept. 2 after a year of treatments that included surgery, chemotherapy, a bone marrow transplant, radiation, and immunotherapy which stimulates the immune system to fight diseases.
Samantha, Penny’s mom, was overwhelmed with emotions when she squirted the final immunotherapy drug dose into her daughter’s mouth. “It felt like I was finally allowed to feel the weight of everything we’ve been through.”
While Penny’s cancer treatment has concluded, she will still come to Seattle Children’s to address the effects of her cancer and its treatment, including damage to her feet.
Penny’s cancer was first discovered when her parents, Samantha and Kyle, noticed she was walking oddly. They later learned she had a tumor at the base of her spinal cord that was causing nerve damage in her feet. The tumor swelled after her initial biopsy, causing a condition called cavus foot — in which the foot arch is much higher than normal.
Penny will have surgery in October to lengthen her tendons and flatten her feet so she can be fitted for orthotics, allowing her to walk on her own.
September is also a major milestone for William, who was born with hypoplastic left heart syndrome, a severe congenital heart defect in which the left side of the heart is underdeveloped. After spending his first four months of life at Children’s, William finally went home one year ago this month.
Today, William is keeping up with his twin brother, Theodore, hitting all the same developmental milestones. Samantha and Kyle still closely monitor William’s blood pressure and know he will need a third heart surgery around age 3.
“We’re trying to stay present and not think too far into the future,” Samantha said. “We know Penny will have side effects from her treatment and William may need a heart transplant at some point, but for now we’re just enjoying having all of our children home together.”
Looking ahead, when asked what Samantha wants Penny and William to know about this tremendously challenging time in their lives, she said, “How much they were loved, not just by their family but by hospital staff and total strangers who heard our story. So many people have been inspired by our children’s strength. Through their struggles, Penny and William made the world a better place. What once felt like a nightmare I couldn’t wake up from is now the legend of my miraculous hero kiddos.”