Henry
A Pediatric Cancer Patient’s Story
Place of Residence: Fairfax County, VA
Henry is a dynamic and adventurous 9-year-old with a big imagination and a love of Lego projects, animals, and movies—especially the Star Wars and Godzilla franchises. His favorite subject in school is math, and he dreams of becoming a doctor and/or a filmmaker someday. In 2023, Henry was diagnosed with a rare form of pediatric cancer, which he valiantly fought, reaching remission a year later. He lives with his wonderful parents, younger sister, and Benny the poodle.
He has recently become something of a roller-coaster aficionado, which was reinforced with a recent trip to Disney World and Universal Studios through Make-a-Wish. He has been rebuilding his strength and endurance since finishing chemotherapy so that he was able to walk the 20,000 steps a day required to experience these parks!
The medical journey that Henry and his family have traveled has given them a deep and delicate appreciation for the importance of making thoughtful medical decisions. Hear from Henry’s parents below as they reflect on his journey and share why they believe it is so vital to protect oneself and others through vaccination.
How did your family’s journey begin?
In January of 2023, when Henry was 7, he began to experience headaches and night terrors. We were going through a bunch of changes at the time – a new house, new school, etc., so we thought anxiety was the issue. But his symptoms didn’t improve and headaches that had been occurring a few times a week were happening multiple times a day with no clear trigger.
When his vision became blurry, we took him to the ophthalmologist and then the emergency room, where a CT scan revealed a 6-centimeter mass within his sinus cavity pressing against the lining of his brain and optical nerves. He was referred to Children’s National in Washington, D.C., where a biopsy confirmed our worst fears: cancer.
More specifically, he was diagnosed with rhabdomyosarcoma—a rare soft tissue cancer that primarily affects children—which our family soon came to call the “damn lump.” We aren’t big on profanity, but at one point Henry said, “This lump is damn,” and we agreed wholeheartedly.
What treatment did Henry require after his cancer diagnosis?
What treatment did Henry Two weeks after his diagnosis, Henry began a treatment regimen known as VAC, consisting of 13 rounds of chemotherapy. Every three weeks he was admitted to Inova Fairfax Hospital for a dose of the strongest of the medications. The other two weeks of each cycle he received outpatient chemo.
His chemo was delivered through a port inserted into a chest vein, but to stave off infection, he received a dose of a drug to boost his immune system. This one was delivered via a shot we gave him at home. The shots were not fun, but he got better at them over time.
About halfway through his chemo, he received radiation treatment – 32 doses delivered each weekday. Henry describes this time as “extremely hard.” The radiation was targeted, but it caused burns and open wounds on his face.
The strength of Henry’s immune system fluctuated throughout his treatment. He lost nearly all protection from his previous childhood vaccinations – a deeply unsettling reality that added another layer of worry for our family. During times when his immune system was especially weak from treatment, we kept a low profile. Friends and loved ones were thoughtful about letting us know if they were feeling unwell or had been around illness, but it was still a challenging and isolating time. We knew that if he became ill, he was at greater risk than others for complications, and sickness could also delay or extend his chemotherapy.
“I feel like I have so much power, cause during my treatment I felt like I had zero power. Everyone was the boss of me, and I just had to do whatever they said. And whatever they said was always so painful and not ok with me that it just always made me upset, tense, and everything that is just not good for me.” Henry, 9-year-old cancer survivor/future film creator
How has his treatment affected your life?
Henry’s health was stable, except for immune system dips that would occur every three weeks. He could continue attending school during treatment, which was a tremendous help to him socially. Understandably, we did have our concerns and worked with the school to add increased safety precautions, including installing an air purification filter in Henry’s classroom.
Community immunity was also vital, as we understood the importance of those around him being vaccinated. Overall, we did feel lucky that we could keep things as normal as possible for Henry throughout his treatment, a privilege many other children in the pediatric ward didn’t have. For families of children battling leukemia, fear of infection is an ever-present concern.
Henry’s chemotherapy ended in November 2023, marking the end of a tumultuous year for our family. His follow-up scans have been good. Every four months Henry does another round of MRI scans, and as we get further removed from treatment, those will be spaced out more. He has chronic health problems from cancer and treatments, but we are managing them.
Six months after ending chemotherapy, once Henry’s immune system had strengthened, our pediatrician recommended that he start receiving the recommended childhood vaccines to allow his body to build up the immunity and protection it lost during his cancer treatment. We were able to get Henry fully vaccinated and caught up after several months.
“Vaccines give you immunity and it’s like a superpower to have protection. A shot would be painful at first but then it would be done and then you’d have a free ticket to being immune.” – Henry, 9-year-old cancer survivor/superhero
What do you want others to know about vaccines?
What do you want others to know about vaccines?There are so many things about your kid’s life that you can’t control. Cancer was one of those things. There was nothing we could do about it; no way we could have prevented it. Choosing to vaccinate is one thing that you can control to keep your children safe. It’s a gift to be able to protect your children, and from the place of a parent not having much control, we can’t imagine not taking the opportunity to give them that gift.
Spending significant time in the pediatric ward of a hospital with him at the beginning of his treatment, at points when his levels were low, and for emergency visits, gave us as parents a different perspective of the risks that people assume, the things we choose to do or not, the policies that affect health access, etc., all led to a new perspective of the serious consequences that can arise from decisions that at the time may not seem like a big deal.
“I want to be a doctor because I want to make a difference in other people’s lives in the same way that they made a difference in my life. I feel really good sharing my story with the world. I like being known and it also helps other people know how hard things can be dealt with.” – Henry, 9-year-old cancer survivor/future doctor
BECOME A VACCINE ADVOCATE
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Have you or a loved one been impacted by a vaccine-preventable disease?
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