'Our living, breathing hope'
Harper Brooklynn Rodriguez, 3 years old, sits in her mothers lap at the kitchen table. She wears a black dance leotard that shes 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, its OK, her mother whispers, stroking her caramel-colored hair. Were not going back there.
Harper looks out the kitchens big bay windows, which face the front yard. Its 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, its 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. Thats what Ive got to think about.
It started in late January, not even three months ago.
The Rodriguezes noticed a laziness in Harpers 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 didnt 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 wasnt sure what was causing Harpers 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 Harpers condition and prognosis. Junior said the meeting was like a bad dream.
It was unreal, he said. Ive never had pain like that before, but it felt like my heart was being crushed.
The OHSU team also described Harpers treatment options, of which there were few. Chemotherapy is generally ineffective against DIPG, because the bodys 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 couldnt 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 dont 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 didnt 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 shes a firecracker, he said with a smile. Ive always thought, you know, all little kids are special, but Harper is above and beyond. Theres just something about her.
Shes 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 Valentines 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 couldnt get her off the dance floor.
Even the limp hasnt 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.
Harpers a ham, her parents say. People are drawn to her, and shes always quick to make friends with whomevers around, stranger or not. Even a newspaper reporter isnt allowed to leave the house without first getting a high five and hug from Harper.
She brings smiles to peoples 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 Megans parents, who own and operate a hazelnut farm and live practically next door, to Juniors very large and tight-knit family, most of whom live just a few miles away in Woodburn.
But it has grown fast.
Its 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 weve just met who are willing to do whatever they can to help us.
Theyve 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 shes 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.
Megans employer, a medical clinic in Tualatin, has given her an extended leave of absence so she can stay at home and be Harpers primary caregiver, and shes been promised shell have a job when shes ready to return.
Republic Services, where Junior works as a driver, has also provided time off.
Megans 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. Its 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 familys 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. Leonardos 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 thats probably not possible.
I know theres 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 Harpers 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 doesnt matter.
Its 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 hes alone, which is often at work.
Im alone in a truck for eight hours a day, so my mind runs like crazy. Thats probably when Im at my lowest, he said. When I come home, its all smiles. Harpers 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 thats when it gets tough, when I think about whats going to happen and what were going to be without, she said. There are times I look at her and it just makes me tear up, so thats hard, but I just try not to think about it.
We tell people we dont have time to be sad, and its the truth, Junior said. There will be the day that we will be sad, but for now, with her here, theres 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 theres no hope, basically, that theres 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.
Shes our living, breathing hope.