Losing Norah

There’s a saying that I have on a button that hangs on my camera bag, accompanying me on every assignment I go to. It says, “It’s their story, not yours.” Colleen Mastrandea wraps Norah in a towel after bath time Aug. 20. From the moment her youngest daughter was diagnosed with a brain tumor, Colleen spent much of her waking and sleeping moments with Norah. A nurse herself, the active mom knew the odds they fought, but kept positive and upbeat throughout their journey.It’s a mantra I learned early on in my career, and it’s a constant reminder that this job is not about me — it’s not about winning contests, taking beautiful pictures or gaining accolades. It’s about the people the stories are about.

Norah combs through her bristly hair while in her favorite chair at home July 3. After Norah's hair started to grow back, she and her mother made a visit to the mall to buy accessories like headbands and clips. The process of losing her hair was probably one of the hardest for Norah during her battle with cancer, but her sister Annabelle made it less painful by creating "Norah's Salon" the day they shaved her head.I really think this was my mantra throughout our story on the Mastrandea family and the process of losing their daughter, Norah — a story reporter Megan Williams and I worked on for over six months. As much as we wanted to tell the story, and as much as we thought it was important, we couldn’t have done it without a purpose from the Mastrandea family.

Nurse Pat Cobb lifts up Norah Mastrandea's shirt to access her gastronomy tube as the third-grader works on a rug hook project July 5 at the University of Virginia Medical Center. Norah went to the hospital to get chemo treatment, but her platelets were too low, so she instead received a dose of antibiotics in the hopes of receiving chemo the following week.This project has been incredibly difficult and heartbreaking, due more so to the fact of how much we fell in love with the Mastrandeas. Going over to their house often turned into a thin line between what I could clock for work hours or whether I was just there for fun. I so often stayed hours after I got the pictures I needed, just watching television, borrowing novels, eating snacks, chatting and laughing. They became like a second family to us, taking care of us amidst all they were going through.

Norah Mastrandea's mother, Colleen, tries to calm her as Norah becomes visibly upset at the prospect of doctors inspecting her G-tube (gastronomy tube) during her weekly clinic visit to the University of Virginia medical center on Thursday, July 11, 2013, in Charlottesville. Norah was on steroids during her cancer treatment to keep her at a healthy weight, but since she had gained weight, the G-tube in her stomach had become uncomfortable. Norah was especially protective of her G-tube and did not like people to see or touch it. The G-tube was put in place as an easier way to administer various medications as an alternative to a constant IV.Norah takes a nap in her favorite chair at home June 21. After radiation treatment, NorahÕs hair starting growing back, but she still had a bald spot surrounding the scar from brain surgery.Over six months, we followed the Mastrandeas to birthday parties, family outings, MRIs, softball tournaments, weekly hospital visits and regular nights at home. Through it all, we talked constantly about their vision for this story, what they wanted to get out of it, and made sure they had a reason they wanted to do it. Without their drive and purpose — creating a legacy for Norah and to truly show, in depth, the pain of childhood cancer — I don't think we could've done the job we did. Their persistence and deep beliefs that what happened to their Norah was tragic and unfair were the driving force behind this story. Megan and I were just the platform to give them a voice.

Norah laughs with her mother, Colleen, during dinner at home Aug. 20. During her treatment, Norah would have some better days than others, where she was lively, sarcastic and talkative. On other days, she was fatigued and would spend hours on the couch.Colleen holds Norah in her lap as John calls their insurance provider before an MRI on Sept. 4. The family had issues with their insurance not approving both a brain and spine scan. Finally, John got the OK for it.In the days leading up to the story, I was worried we were showing too much — showing the true pain, the true agony, and the real heartbreak this family went through. But after many talks, emails and messages from the Mastrandeas, my worries changed — maybe it wasn't enough. Did we really capture the pain and heartbreak of losing your 8-year old daughter — the spunky, sassy, sweet and wise-beyond-her-years Norah June? But after seeing the reactions from our readers and the comments from their friends and family, I think we got as close as possible to telling their true story.

Norah is prepped for her MRI on Sept. 4 in Charlottesville. Norah's MRI was a big milestone to the family in Norah's cancer treatment, as they viewed it as a determination of how much time they had left with Norah, and if her treatment was working at all.John and Colleen hear MRI results from Dr. Druzgal on Sept. 5. The tumors were growing, she told them.

It's going to take awhile for this whole project to sink in — I still don't think I've realized the magnitude of it all — but I'm so proud to be a part of a news staff that has been so supportive of long-term journalism like this. Every single person in our small newsroom contributed to the success of their project, and I could've been as dogged and persistent as ever, but it wouldn't have been possible without their support.
Colleen shows a printout Sept. 5 of Norah's brain scan, showing how her tumors increased in size.
In the days of layoffs and overworked staffs in our industry, it makes me so happy that we are still able to do work like this, amidst all the depressing things we hear about newspapers today. If I had known four years ago that a paper our size could pull something like this off — a 7-day print package, with giant photographs, thoughtful design and multiple web elements, such as an e-book — I would've told all those naysayers in journalism school to suck it when they told me to jump the sinking newspaper ship.
The family kneels in front of Norah's casket. "We've changed so much and lost so much," Colleen said.
Pallbearers carry Norah's casket into St. John the Evangelist Catholic Church.
This project is the embodiment of what I entered journalism to do — long-form, in-depth journalism, big photographs in print, digitally-supported storytelling and to give people a platform to share their stories, as tragic as they may be, to spark change. And I don't think I would've thought, even a year ago, that Staunton would be the place to do that. But it has been, and I'm so, so happy to be here, to be a part of this beautiful, supportive community, and to be a part of this amazing team of really fantastic journalists, and even better people.
John holds his wife after Norah's funeral Oct. 22 after balloons were released into the sky in her memory at Waynesboro Memorial Gardens.
Attendees of Norah's funeral release balloons in her memory while shouting out the name they called her after her funeral at Augusta Memorial Gardens on Oct. 22 in Waynesboro.
I feel like a simple bystander in this whole process, really. I feel like I was just lucky to ever have met the Mastrandeas, especially Norah, and that the family and my news staff are the ones who made this happen — I was just there to document it all. I feel really privileged to have been able to tell this story, and not only that, but to have been able to tell it well — but above all I wish Norah was just here to see it and read it and enjoy it.
Please read Megan's beautiful story on The News Leader's website, and feel free to explore the additional photographs and web elements.
Colleen and John visit Norah's grave Oct. 31. "We keep visiting her," said her mom. "Even though it's not her, she's in heaven — that's the closest that we can get to her that I know of."Colleen Mastrandea bends over to put a leash on Molly to take her for a walk Nov. 7. "When I think about now, this new journey that we're on, and I think about how much it hurts physically, I think, "This is nothing," she said. "Think about what would Norah do. And she would handle it with courage and grace and she would not complain."