Libby throws support to Zach Haines

Zach Haines has always been one to beat the odds.

Now, he faces the challenge of his life.

The 10-year-old was born three months premature on Feb. 19, 2002. He weighed 2-pounds, 10-ounces and spent his first three months in intensive care in Missoula. 

His parents, Tatum Haines and Carmella Pederson, were told they might have to watch for cerebral palsy, a side effect of the lack of oxygen during Zach’s birth. But Haines survived and thrived, becoming a happy, healthy child.

At least until late November when his teacher and parents noticed he started slurring his words, and his motor skills began to deteriorate.

Zach was visiting his grandmother in Spokane when he vomited from painful headaches and nausea. 

Zach, a happy, smiling fourth-grader at Libby Elementary, has a slow-growing but dangerous tumor in his brainstem. 

“When you have headaches, no one screams brain tumor,” Tatum Haines said. “I thought he just needed rest. He started having nightmares, headaches, he couldn’t sleep.”

“His mother called me and said it was 10 times worse. I thought she was exaggerating, but he could barely walk and talk.”

Zach was rushed into a magnetic resonance imaging (MRI) machine, and even though he had trouble staying still, the doctors had no trouble seeing the large tumor in the  “pons” or middle of the brainstem. 

Because of the location in the pons, which connects the cerebrum with the spinal cord, it is full of nerves. A single slip by a doctor might cost Zach the chance to walk or talk again.

Because of this, the tumor, a diffuse intrinsic pontine glioma (DIPG), is inoperable. The swelling of the tumor pressed on the nerves controlling motor skills. Tatum said Zach could still easily do math problems in his head, but couldn’t grip the pencil to write the answer.

Zach was taken on a Life Flight to Seattle on Dec. 21, the day after his MRI, where he was sped along to Seattle Children’s Hospital. He was immediately put on 18mg of steroids a day, which reduced the swelling overnight.

Zach has been getting treatments in Seattle, including radiation and chemotherapy, a lot for his small body to handle.

“I get kind of tired after radiation,” Zach said. “I’ve been kind of nervous, but I’m feeling good right now.”

Zach was talking on speakerphone from an apartment in Seattle before he takes his nightly chemotherapy drugs.

The stats are grim for children diagnosed with DIPG.

The median survival rate for DIPG is about nine months, with rates for survival dropping below 10 percent at two years after diagnosis. Zach may have been luckier than most, as doctors have told the family the tumor appears to be on the side of the pons, rather than embedded deep inside. If this is the case, the prospects are more favorable, and even allowed for a biopsy, Haines said.   

Kallie Decker-Schwindt, an employee at Libby Clinic who – along with Tina Resch – has spearheaded a fundraising drive to help Tatum and Carmella pay their bills while they are in Seattle with Zach and his sister Belle, says the radiation and chemo might be a stopgap measure.

“In five years there might be medical advancements to operate,” Decker-Schwindt said. 

Despite the possible luck with the tumor’s placement and the praying Zach’s friends and family around the world are doing for Zach, doctors won’t know how effective the chemo and radiation have been until Zach takes a longer, more thorough MRI, for which he may have to be sedated.

Rather than think about the drugs, the tumor or being away from his friends, Zach has been having fun in Seattle when his strength seems up to it.

Zach has been to the Space Needle, the Seattle Aquarium, and has tickets to go to the Experience Music Project Museum. But his favorite place has been Pikes Place Market.

He bought a deer-antler knife with an obsidian blade from a vendor at the market. Like many things he is passionate about, his voice lights up when talking about the knife.

But what really makes Zach forget about his nausea, his pain and missing his friends is the thought of fishing again.

Zach is an avid angler and is happy to talk about fishing – or anything, really – with just about anybody who will listen.

“He’s the kind of kid who will say hello to everyone,” said his teacher at Libby Elementary, Wendy Berry. “Even when he’s not necessarily supposed to. He’s a normal little boy, it’s what they do.”

He is shy to talk about his experience at the hospital, but opens up if he can brag about his fishing. 

“I like fishing at Libby Dam,” Zach said. “I use spinners and bobbers with worms. I caught a five-pound rainbow trout at the Troy pond!”

Anyone in his life is quick to laud Zach’s bravery and his poise. But even more than that, they are just amazed at what a happy boy he is.

“He’s just a ray of sunshine,” said Terri Rowan, who teaches him in social studies. “He has a heart of gold and just really wants to thank everybody for what they’ve done. Just a very caring young man.”

Zach will turn 11 years old on Feb. 19, just four days after his chemotherapy is scheduled to end. From that point, his family hopes he can come home and visit Spokane for chemo infusions every few weeks for a year.

The fundraising site to help Pederson and Haines with their bills, http://www.giveforward.com/zacharyhaines, was started by Tatum’s fiancée Natasha Pennock, a nurse practitioner at Libby Clinic.

To date, the community has raised more than $2,800 for the two separated parents. Haines works at a taxidermy shop in town and Pederson works several nights a week at the Mint Bar. The donations are keeping them afloat while they are in Seattle. Luckily, Medicaid, taking a huge weight off the family, pays most of Zach’s bills.

Haines and Pennock update a daily journal to let friends and family keep up with Zach’s busy life. Interested readers can check up on it at http://www.caringbridge.org/visit/zacharyhaines. 

As for Zach? He’s nervous, and maybe rightly so. But he has been praying, trusting in the medicine, and wants to thank all those who care so much about him. He is doing his best to come home and has visited Libby once since the initial Life Flight.

“My doctors are really nice, so are the nurses,” Zach said. “I feel strong. I’m not scared when I’m there.”

Zach hopes to return to Libby soon.

“I miss my school, friends and teachers,” he said, listing some of his friends’ names. “But I don’t miss homework.”

Even with the odds stacked against him, Zach is just a normal 10-year old boy.