Parker Monhollon is one of the 11 children we met in Monterrey, Mexico treated with IA (intra-arterial) chemotherapy for a pediatric brain tumor called DIPG (diffuse intrinsic pontine glioma). 

This week, Parker stopped breathing on her own, and her family’s been told that she doesn’t have much time left. In Parker’s honor, we’re sharing her story here first.

We met Parker’s family halfway through our stay in Monterrey. Her mother was easy to spot: Parker’s mirror image in 30 years. Her parents asked if we could talk after they went to see Parker in the pediatric intensive care unit. They came back 20 minutes later, faces more drawn than before, and ushered us up to a private talking space, one they’d discovered in the four months that Parker’s been admitted in the hospital.

Parker’s mom Amanda is a formidable presence standing behind her daughter in the face of everything that a cancer mom has to manage. I guess there are two ways you could play this: careful, deferential mom, or Amanda-style.

Amanda and Danny, with matching gothic-lettered PARKER tattoos spanning their forearms, sat across from us, and Amanda informed us that this wasn’t going to be the “butterflies and rainbows” story that we’ve probably been hearing all week.

Since Parker arrived in Monterrey in February, she’s had three IA treatments. But even as her latest MRIs showed the tumor is responding to treatment, she’s dealt with myriad complications in other areas. Today, her eye has an indentation where her lower lid lies, and she’s developed a cataract. The skin on a portion of her head is black and necrotic from a previous procedure, and her chest has a matching patch that refuses to heal from where she had stitches placed for a port.

Frustrated, her parents wonder why these things should be happening to Parker in a place where she’s receiving round-the-clock care, though Amanda admits that 90% of Parker’s time in the hospital has been great, with compassionate, attentive doctors like Tito and Nestor.

At the time, there was no plan for what’s next. You quickly learn to adjust your expectations and not strategize too far out with this disease. A few weeks ago, the family thought they’d be bringing Parker home, since she didn’t seem to be responding to treatment. But after her latest MRI indicated tumor shrinkage, they went forward with surgeries to place a trach tube for ventilation and to help prevent recurrence of inhalation pneumonia, a G-tube for nutrition, and a Nissen procedure to treat acid reflux.

Amanda and Danny relaxed over the three hours we talked—their words spilling from a space within that holds their daughter tight. Her story unravels and spins off their tongues. It’s good to talk about Parker, about what she’s been through and who she is.

Turns out, Parker is cut from the same cloth as her mother. She’s tough as nails—a competitive dancer who grew up in the studio alongside older sister Rivers. When Parker started falling out of her quad turns and losing focus at dance in November of 2015, she told her mom, “I’m trying. I’m doing more sit-ups.” A few weeks later, her right eye turned in, and by mid-December, it stayed in that position. When she started having headaches on the back of her head and seeing double, an ophthalmologist said that this wasn’t a simple case of a lazy eye, and Parker needed an MRI. In January of 2016, that test confirmed a brain tumor. She was 8 years old.

Parker underwent radiation at St. Jude’s Hospital, immunotherapy in Germany, a biopsy of her tumor at UCSF—which ended up disturbing the cells and spreading the cancer to her spine, and re-radiation beginning in October of 2016. In November, Parker asked her mom to look into other treatments, as her right side was becoming weaker. That’s when Amanda discovered Monterrey.

She connected with Mariana Gutierrez, whose friend’s daughter has the same tumor as Parker and was responding well to the treatment the doctors in Mexico offered. After grilling the little girl’s father and the doctors themselves about the treatment, Amanda and Danny made the decision to bring Parker to Monterrey.

Parker’s family is from Silver Lake, Kansas, and Parker is the first child from outside of Mexico to receive treatment for DIPG there. In the space of a few months, Amanda paved the way for other families to get their children to Monterrey through her generous information sharing and realistic hope setting.

Like her mother, Parker takes no flack from anybody. Dr. Tito, one of the attending physicians at the hospital, gave Parker a little stuffed mouse called Chippy, who the doctor explained would report to him about Parker’s compliance. “If you don’t eat, you’ll get a tube!” (Parker has a long history of ripping out her feeding tubes in seconds when no one’s looking.) When Chippy later informed Dr. Tito that Parker in fact wasn’t eating enough, she grabbed the little guy and threw him across the room (Chippy, not Dr. Tito).

Parker’s also smart as a whip and candidly open about sharing her experience. As an avid YouTuber, she’s shared videos of herself dancing, giving back-to-school and make-up tips, and talking about her life goals. From the day of her diagnosis, she’s documented her journey with DIPG, asking people to join in, follow her, and comment on her posts.

Parker’s also not one to curb her attitude for other people’s benefit. Danny grins recalling the time she got the local police called on him at their apartment in Germany where they were staying during her immunotherapy treatments. Apparently, Parker was screaming at her dad that she wasn’t going to take a pill, and the neighbor thought she was being hurt. When the officers arrived, Danny explained that Parker had a brain tumor and didn’t want to take her medication, while she ran up and wrapped her arms around his waist. Parker was asked to keep it down in the future.

But Parker isn’t one to keep it down. With Amanda at the helm and speaking for her now that she can’t, Parker’s story has swept the globe, stealing hearts and inspiring people to give a voice to children with DIPG. Parker, you ignited a flame in our hearts with your sass and love for life. The world hears you, and we promise to carry forward your legacy.

Parker passed away from complications related to DIPG on July 10, 2017. You’re forever in our hearts, Parker.

You can learn more about Parker’s life and legacy on her Facebook page:

https://www.facebook.com/ParkerLovesLife/

To make a memorial donation, please visit:

http://www.parkerloveslife.com