Learning About a Childhood Cancer Diagnosis

Madilyn has big, beautiful blue eyes that light up a room. But shortly before her first birthday, her eyes had a bigger story to tell. Madilyn’s parents noticed that she had some swelling in her left eye, and upon closer examination, they noticed that her pupils were two different sizes.

The next morning, Madilyn went to see her pediatrician who agreed with her parents concern about the differences in Madilyn’s pupil size. That Friday afternoon Madilyn was being seen by a pediatric ophthalmologist. What they were seeing was symptomatic of Horner’s Syndrome, a condition that affects the face and eye on one side of the body caused by the disruption of a nerve pathway from the brain to the head and neck. While Horner’s Syndrome is not always an indication of cancer, it was a possibility. After hearing that, Madilyn’s mom, Jessica, wanted to shut down and started going through a period of denial. “Maybe she just bumped her eye,” is what she kept telling herself. That night, the pediatrician called them indicating that Madilyn did indeed have Horner’s Syndrome, and that they already called Penn State Health Children’s Hospital and pediatric oncology was going to see them on Monday morning. Madilyn’s parents were so grateful for the fast-moving process initiated by her pediatrician that enabled her to be seen and get to Hershey as quickly as she did.

In October, Madilyn’s diagnosis of neuroblastoma was confirmed by Dr. Greg at the children’s hospital. The week consisted of additional tests and meetings with doctors and psychosocial staff. They also met with neurosurgery where they were told that children with Horner’s Syndrome usually don’t show symptoms so quickly. Madilyn’s beautiful eyes helped her parents discover her cancer early. The doctors also told them that time was on their side.

You. Are. Family.

When Madilyn’s parents met with the team to go over the chemotherapy plan, it was an extremely tough day. “When you hear all the things that can happen, and all the things that can go wrong,” says Jessica, “it’s all very scary.” But this was the moment when Jessica stated to herself that she was Madilyn’s advocate, and she would be making the best possible decisions for her. “It’s a lot to put on yourself since Madilyn can’t talk yet to advocate for herself.” This was also the moment that Jessica’s optimism kicked in.

The staff at Penn State Health Children’s Hospital were a huge help to Madilyn’s family and their optimism that Madilyn could beat her cancer. “The front office staff, the nurses, child life, they all make you feel so comfortable when you are there,” says Jessica. “They remember your name, your child, and that rapport is amazing. You are family.” The relationship that developed between the family and one of the nurses, Jen, was one that Jessica could not even put into words. Jen sat in an exam room with Jessica for hours, letting her talk, and cry. “That speaks volumes,” says Jessica. “Madilyn’s medical team has also been nothing short of wonderful, and Dr. Greg is caring not only for Madilyn, but the whole family. A real whole family approach.” On one occasion, Dr. Greg could tell that Jessica was struggling and needed to talk with someone, so he called Dr. Blackall, the Four Diamonds psychologist, to check in on her. He created a safe space for her where she could start to heal as well.

Jessica works in finance at her local hospital, so she is no stranger to what hospital bills look like. When she and her husband, Cody, met with their social worker, Sara, there was an initial worry of bills, deductibles, travel, gas costs, etc. Sara then told them, “you won’t receive a bill for Madilyn’s care because of Four Diamonds.” To find out that Four Diamonds alleviates the worry of having to pay for your child’s cancer treatment was truly a relief for the family. But it was more than that for Madilyn’s parents, it was the beauty behind the generosity. “We have received so much because of the generosity and thoughtfulness of people we have never even met,” says Jessica.

A New Year's Celebration!

New Year’s is about pushing out last year and welcoming in a new one, and for Madilyn, her new year is off to a good start. Her parents received a call indicating that her recent MRI showed that her tumor had shrunk by 50%. Her tumor was also hugging an artery fairly tightly, and it had decreased it’s hold as well. This news made the whole family ecstatic.

Madilyn has been doing well with her treatment and has remained a fairly happy 16-month-old child. The toughest days for Madilyn include clinginess and fatigue, but overall, those days don’t even seem terrible for her. Madilyn inspires her whole family as she battles this terrible disease. It has been a long couple of months for her family, and they are hoping the next scan will show even more positive news on Madilyn’s road to recovery.

To learn more about the support that Four Diamonds provides to families, please follow the link to learn more: How We Help