FONT

MORE STORIES


INDEPENDENT PHOTOS: TYLER FRANCKE - Harper Rodriguez, 3, sits at a table in her Woodburn home with her mother, Megan, father, Junior, and 1-year-old brother, Asher, who is fast asleep. In February, Harper was diagnosed with a terminal, inoperable brain tumor, which affects her limb and eye control.Harper Brooklynn Rodriguez, 3 years old, sits in her mother’s lap at the kitchen table. She wears a black dance leotard that she’s quick to show off and holds a hot pink blanket — her favorite — over her lap.


Her 1-year-old brother, Asher, is on a couch nearby, fast asleep, while “The Avengers” plays on the TV.

She listens curiously as her parents, Megan and Junior, talk about her, but begins to whimper softly when they describe her first MRI, an ordeal that occurred only about eight weeks ago.

“Shh, shh, it’s OK,” her mother whispers, stroking her caramel-colored hair. “We’re not going back there.”

Harper looks out the kitchen’s big bay windows, which face the front yard. It’s a bright, sunny day, and she wants to play outside. Soon, Megan says.

She waits a moment before returning to the topic of conversation, the subject that has touched and irrevocably altered every aspect of their lives.

“Obviously, it’s the most devastating thing a parent could ever imagine having to hear,” Megan says, her eyes moistening, a small and rare break in her usual composure. “But at least we have time with her. That’s what I’ve got to think about.”

• • •

INDEPENDENT PHOTO: TYLER FRANCKE - Pink bracelets bear the tag line #TEAMHARPERKID. They're part of a community-wide fundraising and awareness campaign, which her parents said has 'overwhelmed' them.It started in late January, not even three months ago.

The Rodriguezes noticed a laziness in Harper’s left eye. They scheduled a visit with her optometrist, who diagnosed her with farsightedness and prescribed glasses.

Then, a week later, on Feb. 2, Harper fell while she was playing at home with Megan. After the fall, her left wrist and fingers curled in strangely.

This worried her parents, but after a thorough examination, there didn’t seem to be anything wrong with her arm or wrist.

“She was a little upset but, you know, I thought, ‘OK, she took a spill. It will be OK after a little bit,’” Megan said.

But it only got worse. The next day, she started limping, and Megan made an appointment with her pediatrician.

Then, the limp became more severe, and Harper seemed to be losing function in her left arm, so Megan had the appointment moved up a day.

The doctor wasn’t sure what was causing Harper’s symptoms, but was concerned enough to schedule her for an MRI later that week at Doernbecher Children's Hospital.

Megan and Junior waited for the results for hours while their daughter recovered from the anaesthesia. Completely at a loss, Megan said that while she feared the worse, she tried to put on a brave face.

“I knew it had to be something, but I think we were all just trying to be optimistic,” she said.

But when the MRI technician finally appeared, they knew something was horribly wrong — before he even spoke.

“The look on his face, he looked like he was taking it as hard, if not harder than us,” Junior said. “I remember thinking I felt bad for him.”

“He looked like he was on the verge of tears,” Megan recalled.

• • •

They would soon learn their daughter had a brain tumor, a rare and particularly deadly form of cancer called a diffuse intrinsic pontine glioma, or DIPG.

Located in the center of the brain stem, DIPGs “diffuse,” or intrude, into the brain and surrounding nerves, making them impossible to surgically remove without damaging healthy tissue.

The disease affects primarily children, with most diagnoses occurring between the ages of 5 and 7, and has no known cure. The average life expectancy for those diagnosed with DIPG is approximately nine months.

And though there have been some high-profile incidences — astronaut Neil Armstrong, for example, whose daughter died from DIPG in 1962 or college basketball player Lauren Hill, who lost her battle just this month — it is exceptionally rare, with only about 100 to 150 new diagnoses each year in the U.S. Thus, there is little funding available for researching the disease.

• • •

The week after the MRI, the Rodriguezes returned to Oregon Health & Science University to meet with a team of experts, including an oncologist, social workers and representatives of various charities, like the Make-A-Wish Foundation.

They explained Harper’s condition and prognosis. Junior said the meeting was “like a bad dream.”

“It was unreal,” he said. “I’ve never had pain like that before, but it felt like my heart was being crushed.”

The OHSU team also described Harper’s treatment options, of which there were few. Chemotherapy is generally ineffective against DIPG, because the body’s blood-brain barrier prevents most drugs from entering the brain (and, consequently, the tumor).

And though the majority of patients see some improvement in their symptoms through radiation therapy, the tumor usually begins growing again after five to nine months. Fewer than 10 percent of DIPG patients survive past two years.

There are also some experimental treatments available at a few major West Coast medical centers, but none have been reliably effective.

Considering the serious side effects and dismal upside of any of the available options, Megan and Junior eventually made the difficult decision to forego traditional treatment beyond hospice and comfort care.

“I just couldn’t imagine her going through that every day, and then on top of that, for it to not even help her in the long run,” Megan said. “We don’t want her to be miserable. We want her to have the best of what she has left.”

Without radiation, the doctors said Harper would last nine months to a year.

• • •

Junior struggled with denial when he was first told about the diagnosis. He didn’t understand how something so debilitating could befall a child who had always been so happy, so full of life.

“Anyone who knows Harper knows that she’s a firecracker,” he said with a smile. “I’ve always thought, you know, all little kids are special, but Harper is above and beyond. There’s just something about her.”

She’s an incredibly active child, her parents said, always in motion — running, jumping, dancing, singing.

And she has been, even with the disease. Just two days after the diagnosis, Junior took her to the annual Valentine’s Day-themed father-daughter dance hosted by the city at Woodburn Health Center, and Harper was still Harper.

“We probably danced for two and a half hours,” he said. “I couldn’t get her off the dance floor.”

Even the limp hasn’t stopped her.

“She just finds ways around it,” Megan said. “When her limp got bad, she would just pick up her pace to make up for it.”

Harper’s a ham, her parents say. People are drawn to her, and she’s always quick to make friends with whomever’s around, stranger or not. Even a newspaper reporter isn’t allowed to leave the house without first getting a high five and hug from Harper.

“She brings smiles to people’s faces, all the time, everywhere,” Junior said.

• • •

Throughout the course of a two-hour interview, discussing a situation they would have found unthinkable even a few months ago, Junior and Megan are strikingly calm, collected and self-possessed.

The only time they really seem to struggle for words is when they attempt to express their gratitude for the myriad of fundraising efforts and other support that has emerged from the community since Harper was diagnosed.

It began with the network of their close friends and immediate family, from Megan’s parents, who own and operate a hazelnut farm and live practically next door, to Junior’s very large and tight-knit family, most of whom live just a few miles away in Woodburn.

But it has grown fast.

“It’s just been amazing, the outpouring of support,” Megan said. “I mean, you know that you have friends and family that are going to be there for you, but there have been friends of friends, and acquaintances, and people we’ve just met who are willing to do whatever they can to help us.”

They’ve been given a lot of home-cooked meals. Harper, who now has her own P.O. box, has received a lot of cards from people she’s never met. She keeps them in a bag and shares them at the earliest opportunity. The Rodriguezes said work has been very supportive as well.

Megan’s employer, a medical clinic in Tualatin, has given her an extended leave of absence so she can stay at home and be Harper’s primary caregiver, and she’s been promised she’ll have a job when she’s ready to return.

Republic Services, where Junior works as a driver, has also provided time off.

Megan’s sister-in-law started a GoFundMe page that has raised over $21,000 as of this week. The page has also given rise to a hashtag, #TEAMHARPERKID, which has been adopted by other fundraisers and can now be seen on pink silicone bracelets that are being bought up by supporters by the hundreds.

The Rodriguezes say they are simply “overwhelmed” by the donations, which are coming in from all over the country.

“We use the word ‘amazing,’ but it is,” Megan said. “It’s truly amazing that all these people want to help us and want to support us and want to meet Harper.”

The money goes toward helping with the family’s medical bills and living expenses, as well as funding some fun and memorable experiences they can enjoy together in the coming months.

With the help of Make-A-Wish, Harper visited Disneyland last month, and the Portland Trail Blazers donated tickets for her to watch them beat the Denver Nuggets at the Moda Center.

And the local fundraisers keep coming. Leonardo’s Barber + Style hosted one March 8, and The End Zone held another two weeks later. Evergreen Golf Course will play host to a charity tournament for Harper this weekend.

But the crowning achievement is still an enormous bake sale held at the end of February in a lot on Highway 99E that raised over $6,500.

“I had relatives from out of town who came and talked to me at that fundraiser,” Junior said. “They were like, ‘This is crazy.’ I just said, ‘This is Woodburn.’”

Megan and Junior said they hope to, one day, personally thank everyone who has helped them through this time, but they know that’s probably not possible.

“I know there’s going to be someone I miss,” Megan said. “So I just want everyone to know how proud we are of our community.”

• • •

The Rodriguezes said one of the most difficult things about Harper’s condition is not understanding what caused it. The genesis of DIPG baffles researchers; there is no evidence linking it to locations, environmental factors or genetics.

But Megan admitted that, in the end, it probably doesn’t matter.

“It’s not like having an answer to why this is happening to her would make a difference, because the outcome would be the same,” she said. “I guess it just comes with grieving. You wonder why and how and all that.”

Junior said it hits him hardest when he’s alone, which is often at work.

“I’m alone in a truck for eight hours a day, so my mind runs like crazy. That’s probably when I’m at my lowest,” he said. “When I come home, it’s all smiles. Harper’s good right now. This little kid is awesome, so that makes things a lot better.”

Megan said it also helps her to focus on the present, a technique she learned from the hospice workers that now visit Harper regularly.

“I try not to think ahead, because that’s when it gets tough, when I think about what’s going to happen and what we’re going to be without,” she said. “There are times I look at her and it just makes me tear up, so that’s hard, but I just try not to think about it.”

“We tell people we don’t have time to be sad, and it’s the truth,” Junior said. “There will be the day that we will be sad, but for now, with her here, there’s no reason to sob.”

In a weird way, he said, the doctors at OHSU might have done them a favor when they told them, honestly, how bleak the situation is that their daughter is in.

“They told us there’s no hope, basically, that there’s nothing positive that can come out of this,” he said. “So any little thing, every day, is a positive for us, just to be around her.

“She’s our living, breathing hope.”

Tyler Francke covers all things Woodburn. He can be reached at This email address is being protected from spambots. You need JavaScript enabled to view it. or 503-765-1195.

Contract Publishing

Go to top
Template by JoomlaShine