Hodgkin Lymphoma: Nicholas’ Story
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On March 27, 2018, Nicholas, then 13, and his family had their lives turned upside down. They learned Nicholas had a type of blood cancer called Hodgkin lymphoma. Nicholas, however, had other priorities: “I asked, ‘Are we still going on vacation tomorrow?’”
Nicholas’ approach to managing his diagnosis and treatment was to put his family’s happiness first. He did not let the fact that he had cancer defeat his spirit — or derail his family’s plans to go to Disney World.
“Nicholas took this better than we did as adults,” says his mother, Melissa. “And the doctors told us they’d move mountains so we could go to Disney World.”
Four months before the diagnosis, Melissa noticed Nicholas had lost a considerable amount of weight. She took him for a well checkup and learned he had lost about 20 pounds since his last visit. By March 2018, he was back at the doctor’s office because he had lost another eight pounds.
“Our pediatrician thought it was a stomach problem,” says Melissa, and they were sent to see Ronen Stein, MD, a pediatric gastroenterologist at Children’s Hospital of Philadelphia (CHOP). “He wanted Nicholas to have a colonoscopy, endoscopy and MRE.” The imaging showed a mass in his the chest cavity. Dr. Stein told the family that CHOP’s oncology team was waiting for them and would help with the next steps.
The family met Sarah Tasian, MD, a leukemia/lymphoma specialist in CHOP’s Division of Oncology who also became Nicholas’s primary attending physician. The next day, Nicholas had a biopsy, which confirmed his diagnosis of Hodgkin lymphoma. “Our entire lives completely changed,” says Melissa.
But their vacation plans didn’t. Nicholas and his parents and sister enjoyed themselves as a family at Disney World, mostly able to put the news out of their minds.
Once back, Nicholas’s treatment began right away. The family, while full of anxiety, was comforted by the degree of honesty and coordination shown by his care team, including his primary hematology/oncology fellow, Sisi Zheng, MD. “The team communication was incredible,” says Attila, Nicholas’s father. “It was fascinating to watch how competent everyone was, regardless of their role. They also got to know us as people, as a family, and it made a big difference.”
Nurse Navigator Danielle Clerico, BSN, RN, explained to the family the differences between receiving chemotherapy through an IV or a port implanted to access a major vein. “Nurse Clerico covered all the bases,” says Attila. “She helped us start the actual chemo process. She informed us about scheduling the daily treatments so we could also work and take care of our daughter at the same time.”
Throughout this difficult and intensive process, Nicholas developed some new friends who became as close as family. “The nurses were incredible,” says Nicholas. “They didn’t keep anything from me and were always positive. They checked on us all the time, and the child life specialists would bring games to play. They became like a family to me.”
“Even now, we still go to the nurses area and say hi because they had such an impact on my family,” says Attila.
For Melissa, the oncology team was a great source of emotional support: “They were there for us from the start. On his first day of chemo, a nurse told us about Camp No Worries, which is a summer camp for children with cancer. I registered him for camp that day. I would have never thought to send my son to a summer camp at that point. But her suggestion gave Nicholas the ability to feel more normal by being around kids who were going through the same thing.”
Throughout Nicholas’s diagnosis and treatment, CHOP helped the family keep their spirits up. From informing everyone involved of daily details to making a visual road map of the comprehensive treatment process, the family was reassured that Nicholas was under the care of a team that was managing his treatment, while also prioritizing their peace of mind and caring for their family’s well being.
Now 14 years old, Nicholas is in remission and no longer needs medication. He completed his treatment in July 2018. Soon afterwards, life got back to normal for the teenager. “I went to school and went to swim practice, although I’m not as fast as I was in the pool,” he says. “I stayed positive and worked hard to finish up the year.”
Every few months, Nicholas pays a visit to his CHOP family for checkups to make sure the cancer hasn’t returned. These visits will continue for the next few years until he is cleared. He is currently doing very well with no signs of lymphoma returning.
“The CHOP team did not let this defeat his spirit,” says Melissa. “Their positivity really allowed him to keep his spirit up. And, in fact, he checked in on us and helped us stay positive in return. We were very grateful that, while everything was turned upside down, we got to live normally.”