Charlie Bull is a very talented student.
He is a budding musician who can hop on his keyboard and play popular tunes, like the themes to “Super Mario,” “Harry Potter” and “Topgun.”
He is also a science whiz who loves “knowing how things work.” He is attracted to the subject because of its experiments and paradoxes, and is known to read textbooks and dictionaries before he goes to bed en lieu of novels.
He’s got some style, too; he is currently rocking a little lightning bolt shaved into the right side of his hair cut (just because).
Charlie is also just an all-around nice guy, and if one were to meet him, they would be floored to learn the battle that he has been fighting – and winning – since he was a 2-year-old.
September is Childhood Cancer Awareness Month, and Charlie was recently joined by his parents, Ian and Christine Bull, in sharing his survival story – and why spreading the word of pediatric cancer is a priority to them.
The diagnosis
Charlie just started his fourth grade year at Howe Hall AIMS. Christine is a seventh-grade science teacher at Sedgefield Middle.
The Bulls have lived in Goose Creek since 2019 but Charlie’s story goes back to his toddler years in Schenectady, New York.
The family had organized a trip to Disney World in June 2016, with plans to fly out on the date of Charlie’s second birthday. A week before their departure, Charlie started battling an incessant fever that resulted in about four trips to the doctor – all blatant red flags to his parents.
“I was like, ‘something’s not right,’” Christine said.
The family kept getting told it was just a virus, and it just so happened that Charlie was fever-free on the day they left for their trip.
On the tail end of their weeklong vacation – during which Charlie spent acting very lethargic – he spiked another fever, resulting in a phone call back home to the family pediatrician, who advised Christine to take Charlie to an urgent care facility immediately when they landed back in New York.
The urgent care doctor initially suspected mononucleosis and ran a blood test that reported very low blood counts. The doctor told Christine that Charlie was to be transported directly to the children’s hospital in Albany — by ambulance.
“That’s when it got real,” Ian said.
Ian met Christine and Charlie in the emergency room, where they were told Charlie was going to undergo more tests – but even then, doctors still suspected a viral infection as the culprit.
The hospital decided to do a bone marrow biopsy that came back inconclusive. Charlie received blood because his hemoglobin was very low, and he underwent another bone marrow biopsy a day later.
The family had been at the hospital for two days when they got the verdict, and Ian and Christine say it is one of those memories that will forever stick with them.
Christine recalled her parents visiting them in Charlie’s hospital room. Christine was standing up and lifting Charlie out of his crib when a nurse and two doctors entered the room – and Christine just knew they were about to get bad news.
“They always bring in more people when it’s bad news,” Christine said.
Christine proceeded to hand Charlie off to Ian as she braced for that bad news: Charlie had pre-B cell acute lymphoblastic leukemia (ALL).
Feelings of disbelief and shock ran through Christine and Ian’s heads as they received the news.
“I don’t think people really think about it until it happens to them,” Christine said.
Ian echoed similar thoughts.
“It’s one of those things that you can never possibly explain to somebody unless they’ve experienced it,” he said.
The fight
Leukemia is a group of blood cancers that usually begin in the bone marrow and result in high numbers of abnormal blood cells. ALL is the most common form of cancer found in children – and, fortunately, it is also the most treatable.
Charlie started chemotherapy immediately upon his diagnosis; chemo is a series of powerful anti-cancer medicine that can be accompanied with harsh side effects such as nausea, fatigue, hair loss and a depleted immune system.
His initial hospital stay lasted for two weeks before he could go home. Within the first month of his diagnosis, Charlie received yet another bone marrow biopsy, and also had his portacath (or just “port”) installed; a port is a small appliance installed beneath the skin on the patient's chest that is connected to a vein. The port has a septum through which the chemo can be injected, and blood samples can also be drawn.
The family learned quickly that Charlie was responding well to the chemo, and so he entered what his doctors deemed to be remission at the time, and the family subsequently embarked on a three and a half-year journey of keeping him in remission by combatting the cancer with chemo.
The family jokes that they were living “the COVID life” long before COVID even happened; the three of them often wore masks out and about to protect Charlie from getting sick – because getting infected with something even as minor as the common cold could land him in the hospital. Their mantra during those three years was “be Charlie Strong”.
“Some days were better than others,” Ian said. “There were a few times where…he’d get sick, and we’d have to spend a week there.”
All of Charlie’s treatment was done at the Melodies Center for Childhood Cancer & Blood Disorders, located at Albany Medical Center. His off-treatment date was August 29, 2019.
When August 29, 2024 rolls around, Charlie will officially embrace the title of “cancer survivor.”
Coming to South Carolina
Wanting a fresh start after what was a difficult three years, the Bulls decided to move to South Carolina – just before the COVID-19 shutdown. He joined Berkeley County School District as a kindergartener at Mount Holly Elementary before switching to Howe Hall AIMS for first grade.
Since making the move, Charlie has received follow-up cancer treatment at MUSC Children’s Hospital, where he does clinic visits every six months now.
With Charlie being so young when he was diagnosed, he does not remember a whole lot of the experience. His parents also opted to wait a little while to tell him about his cancer because they wanted to make sure he was old enough to better understand it.
Charlie was in first grade at Howe Hall AIMS when his classmates were slated to watch the movie, “Why, Charlie Brown, Why?”
The movie follows the Peanuts Gang as Charlie Brown and his best friend, Linus, grapple with the fact that their classmate, Janice, has leukemia.
Christine was subbing at Howe Hall AIMS at the time. School counselor Beth Knight lent the movie to Christine for her to watch prior to showing it to the children. After viewing the movie, Christine and Ian sat Charlie down and talked about it – though having already successfully completed chemo, Charlie was pretty nonchalant about it, they said.
The idea of it really does not even scare him – “I barely remember it,” he said.
The family considers it a silver lining to him having cancer so young.
“We did not get a lot of recognition – we did not want a lot of recognition – and so, because of that, I don’t think he felt like anything was out of the ordinary,” Ian said.
The month of September has been designated as Childhood Cancer Awareness Month since 2012. It also happens to be Leukemia and Lymphoma Awareness Month.
September 15 is specifically known as National Tackle Kids Cancer Day.
For the Bulls, this month is a time for reflection. Ian and Christine dote on the love and support they received in Albany when he was still undergoing treatment, as well as the follow up treatment he has received at MUSC Children’s Hospital.
During his chemotherapy, Charlie was further supported through outside entities like the Make-A-Wish Foundation, which aided in another family trip to Disney World and Orlando Studios – Charlie has a happy memory of meeting Spiderman on that trip.
The Bulls stay active in a few local organizations that help support children with cancer and their families, such as Camp Happy Days, Courageous Kids, A Kid Again and the Make A Wish Foundation. They plan to participate in some events happening this month in celebration of Childhood Cancer Awareness Month.
“I just wish there was more, for lack of a better word, awareness – that we did more activities for it,” Christine said.
It feels like there should be, Ian said – because this is all centered on innocent children enduring their parents’ worse nightmare.
“Not everybody has a success story like Charlie does,” Ian said. “Obviously I’m thankful that he does, but not everybody does. It’s sad because these kids don’t even get a chance to live, really. It’s awful.”
Charlie said he wants others to know that there are people out there fighting cancer, and they should consider helping them in ways such as visiting with them and helping medical experts find ways to fight it.
“I feel happy for all the people who have survived cancer,” Charlie said.
Looking forward
Charlie enjoys video games, particularly virtual reality games, and watching the cartoon, “Teen Titans.”
His favorite subject in school is science and he wants to be an industrial engineer when he grows up. He is a lefty who hopes to one day invent a car for left-footed people.
Howe Hall AIMS is known for its arts-infused lessons; Charlie particularly enjoys his P.E. classes.
When he leaves Howe Hall AIMS, Charlie is considering heading to Marrington Middle School of the Arts to study music and pursue the saxophone or clarinet – both of which he cannot play yet but is still very gifted at the keyboard.
“He has incredible talent,” Ian said.
Having powered through the experience, Christine and Ian advise other parents that if they ever feel like something is “off” with their child health-wise, “be your child’s advocate, 100 percent.”
“Don’t give up on it – go with your gut if you feel like something’s wrong,” Christine said. “You’re not overreacting, you’re not crazy.”
The Bulls credit the urgent care doctor in New York for taking Charlie’s blood work and sending them to the hospital.
“I do feel very blessed that the people that took care of him are, in my opinion, some of the most brilliant people,” Ian said.
And they remind others to not just be strong, but to “be Charlie strong.”