Heroic Harry’s Sarcoma Story - Nemours Blog


Heroic Harry’s Sarcoma Story

Meet Harry – a sassy, fearless, and cool 5-year-old. What started as a routine dental cleaning turned into a series of challenges. A cavity led to persistent tooth pain and pounding headaches. Concerned, Harry’s parents Kaeleigh and David searched for answers and was shocked to hear that the tooth might need removal. But that wasn’t all – a mysterious bump appeared on his mouth, rapidly growing from the size of a grape to the size of a walnut within 48 hours.

The pain was excruciating, affecting his ability to swallow and breathe. Harry’s father, David, took proactive steps to ensure Harry received the best care, diligently arranging doctor appointments and seeking answers. Their primary care clinician suspected cancer and referred them to Nemours Children’s Hospital, Delaware. At just four years old, Harry was diagnosed with sarcoma, a rare cancer that takes root in bones and soft tissues. The family met with Dr. Andrew Walter, a pediatric cancer specialist, to map out a treatment plan. 

Shortly after a biopsy of the tumor, it ruptured and started briskly bleeding, leading to a dangerous amount of blood collecting in his throat. Urgent placement of a trach was recommended, and Harry’s parents agreed to move forward with the procedure.  A tracheostomy is a medical procedure that creates an opening in the neck to place a tube into a person’s trachea, or windpipe. In addition to the trach, Harry also has a G tube (Mickey Button) that goes from the inside of his stomach to the outside, which is used to deliver food and medications directly into his stomach. He also has a central line, a port, in his chest with a catheter that ends near his heart’s right atrium, enabling his nurses to conveniently take labs, draw blood, and administer chemotherapy and other medications.

In addition to chemotherapy treatment, Harry underwent three months of physical therapy to relearn walking, talking, and finger movements following a three-week coma in the PICU.

Kaeleigh says, “The team at Nemours Children’s remembers his name and his story. Nemours Children’s is more of a community than a healthcare mecca like some of the places we’ve been to. From the physicians to the child life team, they remember who Harry and my family are, and ask how he’s doing every time. They make us feel like family.

Feeling optimistic and getting closer to the end of his treatment, his family plans to do the holidays BIG! A massive Halloween party, a Disney adventure, and spending Christmas with the whole family are all in the books.

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