He navigates with confidence, his hands steering an electric-blue walker.
When physical therapist Andrew Harrington asks the wavy-haired boy to let go of the walker, Ezra takes 40 steps forward before reaching out to steady himself.
Harrington cheers. It’s a new record for Ezra.
Walking independently marks a huge milestone for the preschooler, who has already experienced more than any child should: brain surgery, blood stem cell transplantation and extensive chemotherapy treatments to fight a rare form of brain cancer.
Cancer treatments—which consumed his life from age 9 months to 28 months—set Ezra back in his speech and motor skill development.
“Looking at where he was at the very first day we went to therapy—he was so small and he could only get a couple of steps, even using the walker,” his mom, Jenni Tasman, said.
“Now he flies all over the place with his walker. He can keep right up with the other kids as long as it’s flat terrain.”
Though Ezra has been receiving speech therapy and physical therapy weekly for two years, his big leap forward came after his chemo treatments ended in October 2020. That’s when he seemed to emerge from a fog and find new energy, his mom said.
Ezra’s therapists have seen it, too.
“Sometimes when people go through those treatments, there’s sort of this—their body’s doing everything to heal and deal with the immediate injury, and now he just seems to be gaining traction day by day,” his speech therapist, Heather Francis, said.
“He’s working hard and trying to get his mouth to move, to make sounds, to make words. He’s just sort of blossoming and putting that energy toward development.”
Blossoming, flourishing—these are the kinds of words both therapists use for Ezra.
“His personality’s really been able to shine as he’s been able to say more, speak more and explore more,” Harrington said.
Rare brain tumor
Ezra had just started pulling himself up to a standing position when the discovery of a brain tumor brought normal life to a halt for the family from Caledonia, Michigan.
His symptoms came on fast, Jenni said: rapid breathing and frequent vomiting that only grew worse as the days passed.
A weekend visit to an urgent care center and the hospital emergency department yielded no answers, but at the pediatrician’s office two days later, a new symptom emerged: a bulging fontanelle, a sign of a potentially life-threatening problem.
The pediatrician sent Ezra straight to Helen DeVos Children’s Hospital for a CT scan.
“They asked us if we wanted an ambulance or we wanted to drive. And we were like, ‘Oh, this is serious,’” Jenni said.
Jenni essentially moved into the hospital with her baby that day. She didn’t see her house again for more than a month.
The hospital’s CT scan showed a tumor near the base of Ezra’s brain.
The next morning, March 13, 2019, he underwent a 12-hour surgery to have it removed.
Fortunately, pediatric neurosurgeon Casey Madura, MD, achieved a complete resection of the tumor. Now the medical team—and Ezra’s family—waited to find out what kind of tumor it was.
Within a few days, the lab report came back with shattering results: Ezra had a rare, fast-growing brain cancer called atypical teratoid rhabdoid tumor—a cancer “that has been commonly incurable in the past,” according to Albert Cornelius, MD, Ezra’s pediatric oncologist.
Though Ezra appeared to be cancer-free after his surgery, doctors understood that microscopic cancer cells still remained and would have to be destroyed.
“The cells are so small that they don’t show up on our tests, but we know from experience that they’re still there,” Dr. Cornelius said.
“If we stopped Ezra’s treatment at that point, his tumor would surely recur and spread.”
Armed with this knowledge, Ezra’s care team worked on a treatment plan.
Through the hospital’s membership in a global consortium of pediatric cancer treatment centers, the pediatric oncology team knew about pioneering research into treatments that didn’t rely on harmful radiation therapy—and had much better survival outcomes.
After consulting with colleagues in Toronto, Ezra’s team created a multifaceted plan that would include intensive chemotherapy to kill cancer cells, peripheral blood stem cell transplantation to restore his body’s blood-forming cells and a year of outpatient chemotherapy to help prevent cancer recurrence.
By avoiding radiation, doctors hoped to give Ezra a fighting chance not only at beating this aggressive cancer but at living a fuller life.
“Radiation is the most effective treatment we have for many brain tumors, but in children whose brains are still developing, … radiation has very serious consequences,” Dr. Cornelius said.
“Since Ezra was only an infant when he was diagnosed, radiation would be devastating and cause severe neurologic damage … so we were looking for an alternative approach.”
Ezra’s medical team—including members of the hospital’s pediatric hematology and oncology team and pediatric bone marrow transplant team—sat down with Jenni and her husband, Joshua, and presented their recommended course of treatment in detail:
- Stem cell collection — Collect and freeze Ezra’s own healthy stem cells, after his first chemotherapy, for later reinfusion
- Induction chemotherapy — Administer three rounds of IV chemo to prepare Ezra’s body for stem cell transplantation
- Intraventricular chemotherapy — In conjunction with the induction chemo, administer targeted medicine directly into the spinal fluid surrounding Ezra’s brain via an Ommaya reservoir, a dome-shaped port that Dr. Madura had placed under the skin on top of Ezra’s head at the time of the tumor removal
- High-dose chemotherapy and autologous blood stem cell transplantation — Administer three rounds of powerful IV chemo medicine, each round followed by reinfusion of some of his preserved stem cells to create new blood cells
- Maintenance chemotherapy — Administer 12 rounds of antitumor medicine at home, in conjunction with additional intraventricular chemo given at the hematology and oncology clinic
Pediatric cancer centers regularly use each of these treatments, Dr. Cornelius said, but combining them in this way for patients with this type of cancer is an innovation based on the latest research.
The Tasmans could have chosen to seek treatment for Ezra at a cancer center outside of Michigan, but they trusted the Spectrum Health team and opted to stay close to home, where they could receive the support of family and friends.
The treatment plan would keep Ezra in the hospital for about seven months, from March through October 2019, with the chance to spend about one week at home most months.
Before his first chemo treatment, Ezra’s doctors wanted to see him regain some of the motor function he’d lost because of the surgery.
“The surgery essentially put him back to newborn-level abilities. He could not raise his head on his own, he could not sit up,” Jenni said. “He was floppy.”
So once his surgical wounds had healed, Ezra spent two weeks at Mary Free Bed Rehabilitation Hospital, where he engaged in intensive therapy that Jenni likened to “baby boot camp.”
By the end of those two weeks, Ezra had made big progress and could again sit up on his own.
Though his first round of induction chemo hit his system hard and landed him on a ventilator in the pediatric ICU for nine days, Ezra pulled through.
He handled the next rounds—even the harsh high-dose chemo cycles, which temporarily wiped out his immune system—with greater ease.
But life remained stressful for the family, as Joshua tried to keep the couple’s home-based business running while spending as much time as possible at the hospital, hanging out with Jenni and reading books to Ezra while maintaining strict infection-control protocols.
“Looking back, it doesn’t seem as long, but when we were there, it felt like our whole entire life was spent in the hospital,” Jenni said.
With help from a children’s hospital social worker, the family found relief from the financial strain of Ezra’s diagnosis through the state’s Children’s Special Health Care Services program.
In October 2019, eight months after diagnosis, Ezra was discharged from the hospital with a clean MRI report.
After a month’s respite, he began 12 rounds of monthly outpatient treatments. Each cycle kicked off at the hematology and oncology clinic with an injection of chemo into his cerebrospinal fluid via his implanted port.
At home, his parents would then administer an unusual pair of antitumor agents via Ezra’s feeding tube:
- Tamoxifen, a hormone therapy typically used to treat breast cancer
- Accutane, an acne treatment medication
These medications “are not chemotherapy per se, but they are more aimed at trying to make any leftover brain tumor cells in there grow up to be normal brain tissue,” Dr. Cornelius said.
In January 2020, Ezra reached 100 days post transplant, which put the greatest risk for critical side effects in the past. The family began interacting with friends and neighbors again.
“We got excited,” Jenni said. “We’re like, ‘OK, we’re getting back to normal.’”
The excitement didn’t last long, for soon they started hearing talk of a “mysterious virus” spreading around the world.
On March 13, the first anniversary of Ezra’s surgery, local schools shut down because of COVID-19.
“So we were back to bone marrow transplant protocols,” Jenni said. “We didn’t get much of a break from that.”
Ezra’s weekly speech and physical therapy sessions, which had started in November 2019, stopped for a few weeks under pandemic protocols.
But in May 2020, they picked up again in earnest, and Ezra has been making strides ever since.
In October 2020, with his last round of maintenance chemo behind him, he got his feeding tube removed and made the transition to solid foods.
This past August, he started preschool, thanks to his involvement with Early On, Michigan’s early intervention program for young children with developmental delays.
Ezra loves people, playgrounds and laughter, his mom said.
“Anything that he thinks you think is funny, he wants to keep doing it,” she said. “He really likes to make people laugh.”
That includes his baby sister, Naomi, born in April 2021.
“He’ll lay down and try to mimic whatever she’s doing, and then they just start laughing,” Jenni said. “He loves being a big brother.”
Now that more than two years have passed since his stem cell transplant, Ezra’s doctors feel gratified to see his progress—and his clean quarterly test results.
“As more and more time goes by, this looks really good,” said Ulrich Duffner, MD, Ezra’s pediatric stem cell transplant specialist.
“I’m really quite hopeful.”
Dr. Cornelius agrees but says it’s too early to say.
“I’m hopeful that he is cured, but usually we have to wait another year or two with no evidence of tumor to be sure that he is cured and cancer-free. We’re not ready to stop holding our breath,” he said.
“Whenever those scans roll around, it’s an anxious time.”
No one senses this more than Ezra’s parents.
“It feels like we’re kind of coming out of a fog of constant treatment and precautions,” Jenni said.
“But every time we’re coming up on an MRI, the anxieties run high again. … It’s hard to look too far into the future, because you don’t want to have all your plans smashed.”
For now, they’re content to enjoy the laughter in their home and take things one day, one month, one scan at a time.