Henry Brown has a new puppy.
Jack-Jack is yellow lab named after a character from one of Henry’s favorite movies, “The Incredibles.” He’s a lively addition to the Brown family, which is already a hub of activity with 3-year-old Henry and a grown lab named CJ.
But Jack-Jack melted the heart of Henry’s mom, Abby.
“His right eye has an issue, which I thought was kind of fitting,” she said.
Henry has an issue with his right eye, too. It drifts inward as a result of surgery to remove a cancerous brain tumor more than a year ago.
‘I’d rather have him here’
Until shortly before his second birthday, Henry was a healthy, active toddler.
Then the vomiting began.
No fevers. Just unexplained random vomiting, and occasional balance issues. And no answers from their local pediatrician.
One morning, as vomiting continued and Henry held his head in pain, the Browns rushed Henry from their home on Holland’s north side to the emergency department at Spectrum Health Helen DeVos Children’s Hospital.
Less than an hour later, a CT scan revealed a mass in the back of his brain.
“Those are words we’ll never forget,” Abby said. “It turns your world upside-down.”
The mass blocked the flow of cerebral fluid between Henry’s brain and spine, which caused the nausea. Excess fluid would have to be drained off the brain to relieve the pressure.
Next, the doctors recommended surgery to remove the tumor, a surgery rife with risks and potential side effects.
“At that point, we told ourselves we could work with whatever disabilities he had,” recalled Randy, who wears a #teamhenry T-shirt. “We didn’t want to lose him.”
When Henry woke from the eight-hour surgery, he couldn’t move or talk, he had paralysis on the right side, and his right eye had issues.
The Browns received a grim diagnosis: Henry had atypical teratoid rhabdoid tumor, a rare and fast-growing cancerous tumor with no standard treatment.
The staff at Helen DeVos Children’s Hospital looked for alternatives to radiation therapy, which can cause permanent brain damage, and found a better option.
“We are following a protocol that came out of Toronto,” said Sharon Smith, MD, the pediatric hematology-oncology specialist who is leading Henry’s treatment team. “He is the first patient here in Grand Rapids that we have treated along these lines.”
Over the next few months, the stays at the hospital became long and grueling, filled with lots of ups-and-downs.
A birthday, Halloween and Thanksgiving in the hospital. Home for Christmas, but back in the hospital for New Year’s Eve.
MRIs. Platelet counts. Transfusions. Harvesting stem cells from Henry’s bone marrow and freezing them for future use.
Three intense cycles of chemotherapy and three rounds of stem cell transplants.
“This was a significant uphill battle,” said Dr. Smith, who assured the Browns she and the entire team at Helen DeVos Children’s Hospital will do everything possible to make Henry a survivor.
Keeping cancer at bay
Abby, whose favorite T-shirt reads, “Hey cancer, you picked the wrong kid,” finds that her medical training as a veterinary tech has helped her deal with Henry’s treatment, which has required sterilization techniques and juggling a long list of multi-syllabic medications.
All of the effort is paying off.
Today Henry acts like a typical 3-year-old. He jumps on this backyard trampoline, romps with his puppy, and insists on watching his current favorite movie, “Cars,” on a phone or iPad.
But that doesn’t mean his cancer battle is over. Life is filled with doctor appointments, clinic visits, physical therapy and at-home medication. He also had surgery in November to fix his right eye, with positive results.
The little guy takes it all in stride.
For example, Henry actually looks forward to the Pediatric Hematology Oncology Clinic, according to Abby. He easily navigates the hallways, hopping onto the scale to be weighed, getting checked out from head-to-toe, and playing with Lego blocks while waiting for his maintenance chemotherapy treatment, which is administered directly into his skull through a special port.
When he gets restless, Child Life team members distract him with snacks and toys, pulling tricks out of their bags, Mary Poppins-style, to keep him comfortable.
“The maintenance chemotherapy aims to stop the tumor from recurring and keep cancer at bay,” said Allison Schnepp, MD, who works closely with the family as part of her three-year pediatric oncology hematology fellowship.
“He’s come a long way,” Dr. Schnepp said. “And the Browns are a very amazing, steady family. It is very clear how much they love Henry and want what’s best for him.”
His family aren’t the only ones who love Henry.
“Even after what he’s going through, he makes people smile,” Abby said. “He laughs and plays. He’s proven he can do the impossible.”