By Marissa Willman
Three-year-old Isaiah Poag of Thousand Palms tackles his older brother in games of tag, plays with his grandmother in the pool and tumbles with his sister during gymnastics class like any other three-year-old.
But Isaiah is far from an ordinary three-year-old. In the last two years, Isaiah has beaten two grave diagnoses: ependymoma, a rare brain cancer, and necrosis, a result of his radiation treatments.
“He’s a walking miracle,” his father, Shawn Poag, said. “Every day we’re grateful for him being alive because he’s been through so much.”
Poag’s wife and Isaiah’s mother, Amy Heisinger, is hesitant to recollect how they discovered Isaiah’s illness. She prefers to focus on her son’s recovery and doesn’t like to go back there, she says.
But soon, Heisinger and her husband are piecing together the whirlwind timeline that, within a matter of days, turned their lives upside down.
It began during the summer of 2010. Isaiah’s parents noticed their then two-year-old son, who was walking as a 10-month-old, was having an increasingly difficult time standing upright, often stumbling and falling in his attempts. Isaiah’s head was usually tilted down to the side and the two-year-old was uncharacteristically quiet, as well.
Today, Heisinger and Poag know these are all telltale signs of a brain tumor but at the time, Isaiah’s parents thought their son was probably battling an ear infection, an ailment Isaiah had a chronic history with.
It was a Sunday when Isaiah’s parents took their toddler to their regular pediatrician, who examined Isaiah for an ear infection but found nothing. As Heisinger described Isaiah’s symptoms, the doctor insisted Isaiah go to Loma Linda University Children’s Hospital for a CAT scan.
“That’s a scary place,” Poag said. “When a doctor tells you to take your child to Loma Linda? You think, ‘No, we don’t want to go there.’”
Isaiah’s doctor insisted and, hoping for the best, Poag and Heisinger made the trip to Loma Linda the next day. They made arrangements for their then 12-year-old son, Adam, and four-year-old daughter Savannah, for the day.
After spending more than five hours in the emergency room, a doctor spotted Isaiah in the hallway and noticed his difficulty walking, referred to as a gait abnormality. The doctor told Isaiah’s parents that the symptoms were probably due to a lingering ear infection that would eventually resolve itself. As the doctor was getting ready to discharge Isaiah, the toddler fell asleep—and Heisinger insisted they get the CAT scan their pediatrician so adamantly pushed for.
The doctor agreed to administer the scan while Isaiah was asleep and the toddler was whisked away to be examined.
After the scan, the family returned to the waiting room. They watched as the doctor continued to walk past them, ignoring the family. Heisinger couldn’t understand why the doctor wouldn’t talk to them or let them leave.
“We’re thinking, ‘Okay, they should have the CAT scan by now. Why aren’t they letting us go home?’” Heisinger said.
Finally, a nurse came to inform the family that something came up on the scan and a room was waiting for them.
“They said there was a mass,” Heisinger said. “We didn’t know anything about cancer or tumors. I didn’t even know what a mass was.”
The next thing they knew, a chaplain was in Isaiah’s room, praying with the parents over their toddler. Their older son, Adam, was going to spend the night on his own; Savannah’s babysitter would now have to pull an extra shift. It wasn’t supposed to be this way—Poag and Heisinger expected to be back home by early evening, at the latest.
Instead, they prepared to spend the night in Loma Linda’s emergency room. Around 2 a.m., a neurosurgeon delivered the news Isaiah’s parents didn’t want to hear: Isaiah had a brain tumor and his prognosis wasn’t good. He would need to be admitted immediately.
Heisinger was in disbelief until the neurosurgeon showed the parents a copy of Isaiah’s CAT scan and compared it to a scan of a healthy brain.
“You could see the tumor,” Heisinger said. “It was fully pushing up against his brain stem, fully lodged in there.”
Isaiah also had swollen pockets of cerebrospinal fluid above his brain due to the tumor blocking the fluid from draining properly into the spinal cord. Isaiah had managed to survive because the pockets were creating their own narrow rivers around the tumor, relieving just enough liquid to prevent any damage.
The swelling was so bad that surgery needed to be delayed for two days while Isaiah received steroid treatments to reduce the swelling. On Thursday, Isaiah underwent an operation to remove the tumor.
“The chances of it going wrong were almost 50-50,” Heisinger said.
Isaiah was in surgery for over five hours, during which time his parents prayed with leaders from their church and loved ones. After praying, Heisinger said she felt immensely better—until a nurse commented that Isaiah had just been dealt a bad hand of cards. Heisinger broke down into tears.
“It broke my heart,” Heisinger said. “My baby doesn’t get bad cards.”
Her bishop prayed with her, along with many people on Isaiah’s Facebook page, “Hope for Isaiah.” The page was created by Poag’s sister to allow people from all over to give the toddler their well wishes and prayers.
Above all, Heisinger prayed for an avocado.
Isaiah’s neurosurgeon explained to the parents that tumors basically come in two forms: mangos and avocados. “Mango” tumors are deeply interwoven with the surrounding tissue, similar to a mango pit. “Avocado” tumors resemble an avocado pit, “where they just grab it and it pops right out,” Poag said.
Once the surgery was finished, Heisinger only had one question: Was it a mango or an avocado?
With a big smile, Isaiah’s neurosurgeon informed Heisinger that Isaiah’s tumor was, in fact, an avocado. The surgeons were able to remove the tumor completely and would now need to run a biopsy to determine if it was malignant or benign.
Isaiah began talking immediately after surgery, surprising his parents with the vocabulary he had compiled over the months but, because of the tumor, was unable to communicate. Within a week, Isaiah was even walking again, but the toddler’s journey was far from over.
The family soon learned that Isaiah’s tumor was cancerous. Isaiah was diagnosed with grade III anaplastic ependymoma, a diagnosis that was later changed to grade II ependymoma with spots of anaplasia. According to Heisinger, less than ten percent of children who get brain cancer are diagnosed with ependymoma.
Isaiah’s parents began contacting different children’s hospitals, hoping to find one that was a little more experienced in dealing with Isaiah’s rare type of brain cancer. Because of the rarity of Isaiah’s cancer, St. Jude Children’s Research Hospital offered to treat Isaiah and cover the expenses.
“When they found out it was ependymoma, St. Jude was really excited to get Isaiah over there,” Poag said.
Heisinger and Poag left behind their home and Poag’s three businesses to take Isaiah to St. Jude in Memphis, Tenn. They packed their belongings into a storage unit, bringing Savannah to Memphis with them as Adam stayed with his grandmother to attend school.
Chemotherapy went as well as could be expected, his mother said, and in January of 2011, the family headed to the Ronald McDonald House in Florida to begin Isaiah’s two-month proton radiation treatment.
“They sedated him every day for two months,” Heisinger said. Although her husband expected chemotherapy to be the more difficult treatment, Poag said he was shocked to find radiation was more difficult to endure.
In March, the family came back to the desert, just grateful to have Isaiah with them and not overly concerned about their personal situation that left them homeless, carless and jobless. But a mobile home in Thousand Palms and a used SUV were waiting for them, thanks to donations made through the Pendleton Foundation, a local non-profit that provides financial support to cancer patients and their families.
As the family settled back into their lives, Isaiah seemed to be headed toward a full recovery. Just three months later, though, everything came to a halt—Isaiah was suddenly and rapidly regressing.
“He was doing so good, flying through everything until June or July, when he stopped everything,” Heisinger said. “He stopped walking, stopped talking. He was worse than he’d ever been.”
It turned out Isaiah had necrosis, the premature death of living cells in healthy tissue. It spreads to nearby cells, killing them off in a chain reaction. It was caused by the proton radiation treatment and, in Isaiah’s case, was attacking his brain stem.
“The tumor was bad but the effects of treatment are almost worse,” Poag said. “It’s crazy. You’re supposed to be helping but that’s not always the case.”
A year after they first discovered Isaiah’s cancer, the family was once again at Loma Linda to explore Isaiah’s treatment options. In October, Heisinger and her son ended up returning to St. Jude to pursue hyperbaric oxygen therapy, one of the only treatment options available for necrosis. The treatment forces pure oxygen into the affected area in hopes of stopping the dead tissue and forming new, healthy tissue around it.
“There’s not a whole lot you can do for necrosis,” Heisinger said, adding that a young girl who had the same cancer as Isaiah and also developed necrosis went through hyperbaric oxygen treatment with Isaiah but passed away.
Isaiah’s treatment was more successful. He began showing improvement even before beginning the treatment, and after finishing hyperbaric oxygen treatment last December, Isaiah is able to talk, walk and even run, although he gets especially frustrated when he falls.
“He asks me, ‘Mommy, why do I fall? You don’t fall. Daddy doesn’t fall. Savannah doesn’t fall. Why do I fall?” Heisinger said. “I tell him everybody falls. It’s okay to fall. Get back up and keep on running.”
These days, Isaiah is exceptionally active, even participating in weekly gymnastics classes at My Gym in Palm Desert. Heisinger said she’s always had faith that her son would recover.
“To me, he’s always going to get better,” Heisinger said. “Don’t tell me he’s not going to get better because he will.”
Isaiah turns four on July 4th and heads back to St. Jude later in July for a routine checkup. Stay updated with Isaiah’s progress at the family’s Facebook page at Facebook.com/pages/Hope-For-Isaiah.
