Hunter Jones

mdhm_280617_1732-Edit

“Instead of begging that God heal Hunter, try asking, ‘What if Hunter has a complete healing?’”

That’s the suggestion a friend made to Hunter’s parents. It’s an interesting shift in perspective, one that helped replace their desperation in the statistics of a 1% survival rate with the possibility of hope that comes with having faith.

Just six days before Hunter’s 6th birthday, he was diagnosed with DIPG. Over the Christmas holidays in 2016, his parents Krista and Brad noticed that Hunter’s right eye wasn’t tracking as well as the left. After a week with no improvement, his pediatrician referred him to a pediatric ophthalmologist who thought a virus caused the problem, but ordered an MRI to rule out more serious causes. The MRI revealed a tumor, and they were sent for an immediate consult at Seattle Children’s Hospital main campus.

Krista recalls the meeting with the pediatric neuro-oncologist and the neurosurgeon. “It was so surreal…our world had totally shattered. I think I only heard about 10% of what they were communicating.” With Hunter sitting in the same room watching a show on his iPhone, the doctors told his parents that Hunter had a rare brain tumor in his brainstem that would “most likely take his life in one, at the most two years.”

Krista describes the days after Hunter’s diagnosis as a blur. Adding to the feeling of being in a fog, the doctors seemed vague in their description of his condition, initially referring to it as a brainstem glioma, and not DIPG.

“The first few weeks after diagnosis, my husband and I would break down together in the hallway away from Hunter and then regroup to go see him and try to be strong,” Krista says.

“There are a lot of tears shed alone in the garage or bathroom where Hunter can’t see. We are totally devastated. Hunter is our only child and the love of our lives. The thought of losing him is unbearable.”

Hunter underwent 30 days of radiation. Although the sessions themselves caused him stress, he otherwise came through the treatment well, with no significant side effects. Thankfully, he was able to discontinue steroids quickly, with only the palsy in his right eye remaining.

mdhm_280617_1286-EditHunter went back to school half-days part way through radiation, and after he completed treatment on March 9th, the family decided to enjoy the “honeymoon period”—a brief time during which children often have few symptoms after radiation and before progression begins. They went to Arizona for a couple weeks to see Krista’s parents, where Hunter enjoyed swimming in the pool, and they visited the Grand Canyon and Sedona.

Krista heard about the treatment in Monterrey from the DIPG Research Facebook page the same month. “I quickly realized there is nothing like this treatment anywhere else in the world, and I knew in my soul that it is the only treatment that provides any hope of a potential cure,” Krista explains. She reached out to Mariana Gutierrez, whose friend’s daughter was treated for the same cancer there. They talked about the treatment and the pros and cons of going before progression. At the time, Hunter still had few symptoms.

After the Arizona trip, Hunter had his first MRI following radiation, which showed a minimal 15% reduction in size of his tumor. The family went on a Make-A-Wish trip to Hawaii, where they had a fabulous time, but Hunter started having daily headaches.

18057863_10155310198334241_6816375042381290287_nOn their return from Hawaii, Krista contacted Mariana to schedule their trip to Monterrey in two weeks. However, “our universe cracked again” when Hunter—literally overnight—started having trouble swallowing, and the next day lost the use of his left side, and his speech became slow and slurred.

Krista contacted Seattle Children’s, but “[they] didn’t seem concerned. Sadly, DIPG kids are somewhat written off by mainstream medicine because there is no cure.”

At this point, Mariana arranged for Hunter to come to Monterrey in one week. An MRI confirmed that he had no fluid in his brain, clearing him for travel. But that scan also showed severe swelling and possible progression, which were causing his symptoms.

After arriving in Mexico in mid-May and receiving his first IA treatment, Hunter immediately started to show improvement. His speech was clear, and he regained some of the strength he’d lost. They went back for another IA treatment and Hunter’s first immunotherapy a few weeks later, at which point his MRI showed a 20% reduction in the size of his tumor from the last visit. Soon after, he had even greater mobility in his left arm, and he walked with more confidence, says mom. Hunter had another set of treatments scheduled the week we met, and he just completed his 4th IA and 3rd immunotherapy recently.

Krista says the hardest part of the journey has been trying to reconcile the WHY: “Why Hunter? Why us? Why this most hideous of cancers that takes everything from the children, and potentially from the families?”

mdhm_280617_1501-EditHunter has had his own roller coaster of emotions, too. Fear and anxiety loom over his appointments and procedures, and he’s cried a few times, asking why he has to be different and have this “bump in his brain.” But he’s amazingly resilient, never complaining or saying no. He just asks when his appointments are.

Which says a lot about Hunter, because he’s a planner. In preparation for each holiday, he helps his parents make to-do lists, and he looks forward to the family’s annual 4th of July camping trip in the San Juan Islands, talking at length about everything they’re going to do before they arrive.

19702381_10212155454114348_6914065617280622925_n

Hunter’s also always known what he wants to be when he grows up: a Dad. Since he could talk, he’s planned on how many children he’ll have and who will get to help take care of them. He routinely checks Zillow to find the best home for his future family.

If his six-year-old self is any indication, Hunter’s going to make a fantastic father one day. Krista and Brad had already scheduled Hunter’s birthday party before his diagnosis, so they went ahead with the celebration as planned. During the festivities, one of the moms who volunteers in Hunter’s class approached Krista and said, “Hunter is the sweetest little boy. The other day in class, there was a little girl who was crying, and Hunter came over to her and sat next to her and cried with her.”

Krista thinks that Hunter is an “old soul,” to use a clichéd term. After their 10-year-old golden retriever passed away when Hunter was three, his parents explained that Kaya had gone to heaven. Ever since, Hunter’s asked questions about God and angels and heaven, and he says that he can’t wait to go there.

Truly, this little boy knows more than you might give him credit for, and Krista admits that in many ways Hunter’s illness has given them a chance to live more purposefully. Before DIPG, they existed in a bubble: work—Hunter—work—friends—work—Hunter. But since his diagnosis, they’ve had a chance to reevaluate what’s important and learn to manage their expectations about life.

mdhm_280617_1823-EditNow, instead of begging God to heal their child, they’re unraveling the answers to the question once asked of them.

If Hunter healed completely, the world would be a more peaceful place. “He is here to teach us about loving and supporting each other, about what really matters. He is an agent of change that is needed in these darker times,” Krista says.

Even spending a few short hours with Hunter and his family showed us how he’s doing that. We came together to meet him—Mariana, childhood cancer advocate Christina Wascher, Robyn, Lily, and I—where we shared our hope for his healing; celebrated his love of life as we watched him collect shattered egg shells and run slightly lop-sided through the park; strategized to help end this disease; and opened our hearts to each other even as devastation joined us. Hunter is planting seeds of goodness, creating not-so-accidental communities from the broken bits of our fears and reminding us that love heals.

mdhm_280617_1563-Edit

Hunter ended his earthly journey on April 5th, 2018. His family carries on Hunter’s legacy and encourages others to live with as much passion and love as Hunter did: https://facebook.com/LiveLikeHunter

Ronil Mehta

 

mdhm_280617_0962-EditRonil’s story is one of the hardest for me to write, maybe because I so clearly remember being 13, but more likely because of how he lives his life—with devastating beauty.

His father wheeled him into the living room where we could all meet and chat. His 9-year-old brother Sahil sat at his side, catching the drool that escaped the corner of Ronnie’s mouth. Despite his almost complete inability to move, Ronnie was entirely present—focused on the conversation, indicating in subtle ways that only his family could understand if he needed anything, and cracking up when something struck him as funny. mdhm_280617_1000-EditIn January of 2016, Ronnie felt dizzy and collapsed unconscious on the floor while getting ready for school. An MRI showed he’d suffered two strokes due to a tumor in his brainstem. He fell into a coma, which he wasn’t expected to come out of. The doctors encouraged his parents Manisha and Milan to take Ronil off of life support, but they fought them, saying, “He will wake up.”

Each day, the neurosurgery team came in, putting a catheter down Ronil’s throat to test for a gag reflex and touching his cornea to see if he’d respond. One week later, Ronnie did wake up, blinking to communicate that he understood what was happening and later explaining to the doctors that he’d felt everything they’d done to him, even as he was powerless to stop them.

Ronnie had surgeries for a G-tube (for nutrition) and a tracheostomy  (for breathing support), and he had a port placed in his chest wall (for infusions). He underwent 33 sessions of radiation at Oakland Kaiser in February of 2016, after which he slowly started talking again. By April of the same year, he had about 80-90% of the function back on his right side.

The family adds that Ronnie has always been selfless and loving, putting others before himself. At a time when he was unable to speak, he pointed at a few letters to ask his parents, “Are you all doing OK?”

Throughout his three-month hospital stay, the doctors advised Manisha and Milan to tell Ronnie about his condition, citing studies showing that kids fight harder when they know they have cancer. But his parents needed to tell Ronnie in their own time, in their own way. He was clearly capable of understanding the situation; it was up to them to bring it to Ronnie in a way that he could deal with.

Once back in the comfortable atmosphere of their home and when he was able to hold a conversation, Manisha and Milan explained to Ronnie that a rare brain tumor had caused his strokes. Over time and through a series of open talks, he accepted his diagnosis without ever breaking down, and though he was sad, he determined to face his illness and fight it. Since, he has adapted to this new life with ease and hardly any qualms. Ronnie’s will power to move on and make things as normal as possible for himself and the people around him set the tone for how he lives his life today and how others treat him. Truly, his parents gifted him this opportunity to assimilate this devastating news, and to work through how he was going to relate to having DIPG.mdhm_280617_1159-EditAfter the initial inflammation from radiation had settled by June, Ronnie was able to get around with a walker and eat by himself. He told his parents he wanted to walk, play basketball, and go to school again. His neuro-oncologist told his parents, “That’s not going to happen. He needs to aim lower.”

By August of 2016, after months of occupational, physical, and speech therapy, Ronnie was back at school, walking, and climbing stairs. His latest scan showed a 30-40% reduction in the size of his tumor. Ronnie’s doctor finally conceded, “I’m seldom wrong, but you’ve proven me wrong.”

At his own insistence, Ronil had his trach tube removed in September. Ronnie valued his quality of life over the doctor’s concern that he might need the trach again later.

Ronnie was accepted into a clinical trial at that time, which he knew was unlikely to change his outcome, but would cause severe side effects, “Even if it doesn’t help me, it will help other kids in the future, so I have to do it,” Ronnie said. He never had the chance to take part in that trial, though, as his tumor showed slight shrinkage just before it began.

Eventually, enough of the blood from his strokes had dissipated to allow more healing in his brain, and by December, Ronnie was even able to go snowmobiling, indoor skydiving, and driving the zip-car on the streets of San Francisco.

Through everything, Ronnie has continued to live his life fully and with integrity. As soon as he would arrive home from school, he’d start his homework, refusing anyone’s help opening his laptop or getting his books. Writing and typing were difficult and tedious due to muscle spasms he’d developed. He earned B’s in his first term in History and Science, insisting, “I want the grades to be my own effort only.”

Last Christmas, he asked his family and friends to consider donating to DIPG collaborative charities in lieu of giving him presents.

Manisha recalls a time when they were going to a party, and they told Ronnie to leave his walker home because a lot of people would be there. She said they’d help him to a couch where he could sit the whole time. Again, Ronnie declined help, saying he was not ashamed of people seeing him use the walker. He was proud of his achievements, and this was his “new normal.” He didn’t care what others thought, and he wanted to be independent as possible. He often told his family, “I’ll ask you if I need any help, but don’t assume it and do things for me to make my life easier.”

Ronnie proudly cruised around the school grounds on his motorized wheelchair in the same places he once walked, ran, and played basketball. On Halloween, he dressed as a “bloody doctor” and even had the courage to go up on stage in front of the whole school and won the runner-up prize. He put up a sticker on the side of his wheelchair showcasing his sassy attitude: Keep Staring and I Might Do a Trick.mdhm_280617_1036-EditBut in January of 2017, Ronnie started having trouble eating and walking, and a scan confirmed that he was in progression. He underwent emergency brain surgery to put in a shunt to treat hydrocephalus. Within the span of one week in February, he lost the ability to walk, stand, and talk.  He completed 12 sessions of re-radiation at UCSF, and he also received immunotherapy, but these did little to restore his functions, as his tumor was still in progression.

With precious little time to spare, Manisha and Milan contacted the team in Monterrey to see if they’d accept Ronnie into their program. At first, they turned him down, so the family created a video showing Ronnie eating and playing, proving to the doctors that he had the fortitude to undergo this treatment.

He had his first IA treatment on May 12th, and the tumor responded by showing a small reduction in size. After Ronnie’s second IA, he returned home to San Francisco for his middle school graduation, where he received an award from the principal recognizing his bravery, a page dedicated to him in the yearbook, and a standing ovation from the entire community for his achievements.19399971_1593149660709106_7754737882763508765_nRonnie’s 5th IA is scheduled for late July, after which they’ll go back home for a few weeks. In order to also receive the immunotherapy part of the treatment, Ronnie has to completely wean off of steroids. Manisha fears she may have moved too quickly when reducing his dose, as Ronnie lost the use of his right hand—one of the few things he could control—after coming off steroids. She weeps as she explains that even as she increased his dose again, he still can’t use that hand. The guilt she feels is suffocating.

Still, Ronnie and his family have found ways to continue doing the things he loves. He enjoys going to movies and restaurants, he can play board games with assistance, and he keeps up with politics and his favorite basketball team, the Golden State Warriors. Ronnie was ecstatic to get a personal video shout out from his idol Stephen Curry while undergoing treatment in Monterrey. Ronil and Sahil love to watch comedic Jus Reign YouTube videos together, which they can (hysterically) relate to as children of Indian parents. mdhm_280617_1192-EditRonil even inspired President Obama, who wrote him a personally signed letter from the White House where the president and first lady acknowledged his bravery and encouraged him to keep fighting.

Photographing Ronnie seated on the couch presented some challenges. Ronnie’s muscles are useless to hold him upright, so when he busted up laughing, he collapsed sideways on the cushions, which only made him laugh harder.

Ronnie’s ability to find humor where others might feel humiliation says everything you need to know about him. In the face of unimaginable pain, he chooses joy. You can’t help but feel happy just being around him. He wears his unwavering faith in the goodness of life on his sleeve, accepting his fate without resignation. Look at his smile and tuck it in your pocket. He’ll light up your life.mdhm_280617_1205-EditFollow Ronnie’s Facebook page:

https://www.facebook.com/groups/174472592910938/

To make a donation:

https://www.gofundme.com/hope-for-ronil

 

SaveSave

Annabelle Nguyen

mdhm_280617_0837-Edit

The sun blazed red bouncing off the apartment walls to wake us on our second day in Monterrey. We got lost (again) on the way to Annabelle’s apartment, continuing our tour of the city’s back streets.

Annabelle’s mom Sandy met us outside the building and showed us in. Annabelle zipped around the apartment, silently showing off her favorite toys. She arranged her crayons carefully on the floor, not one to have anything out of its place. But impulsivity overcame her desire for precision at times, like when she hastily colored to discover a hidden picture—a reminder that this little whirlwind is only 4 years old.

mdhm_280617_0929-Editmdhm_280617_0898-Edit

Annabelle appears like any other girl her age; you’d never even know she had DIPG from looking at her. Having her outward appearance remain untouched might give her parents a measure of calm. At the same time, they live with the knowledge of what can’t be seen on her face—watching, waiting for any small change that could mean her tumor is progressing. “I live every day thinking: What’s going to happen tomorrow?” Sandy says.

Annabelle was diagnosed with DIPG less than a month before her 3rd birthday. Her parents noticed that she was walking differently, wobbling from side-to-side and leaning forward. She also initiated a new bedtime routine of screaming and rubbing her eyes uncontrollably.

They were living in Vietnam at the time, and Annabelle’s first MRI was inconclusive, so they flew to Australia for an emergency follow up scan, which showed a tumor in her brainstem. The medical care in Australia was par for the course for DIPG treatment: radiation, and wait for the inevitable. Annabelle completed 30 rounds of radiation, and then the family returned to Vietnam, where Annabelle’s father Trung took a job with the family business.

Unlike her peers, Annabelle hasn’t started school, leaving her feeling left out and mom ashamed to admit she’s envious of the parents who proudly show off their children’s kindergarten photos.

mdhm_280617_0800-Edit

While living in Vietnam, Annabelle was treated using acupuncture, Chinese medicine, and qigong. She’d been faring quite well, until a routine scan in May showed that Annabelle was in progression. At this point, Sandy and Trung sought out other options.

They learned about Mexico the way a lot of other families have—through social media. After selling most of their belongings to afford the first treatments, Sandy brought Annabelle to Monterrey, leaving Trung and Annabelle’s 2-year-old sister Alyssa behind. They arrived in Mexico on May 22nd, and Annabelle had had two IA treatments and one immunotherapy at the time we visited with them.

It’s hard to look at this vital child and imagine her undergoing treatment for brain cancer, but that is her normal—the everyday fear of blood draws and anesthesia masks and waking up confused and in pain. These experiences spanning half of her life have imprinted on Annabelle’s mind, coalescing to form her childhood.

19424221_10155476461643044_588435085127567276_n

It’s also her parents’ normal—an unremitting trauma that cuts again every time she stumbles or slurs a word when sleepy.

Though Annabelle’s tumor has only shrunk by a small percentage since starting treatment, it shows less contrast, meaning that the cancer cells aren’t as active. This might not seem like a big deal, but this tumor grows aggressively, sometimes killing children in a matter of days to months after diagnosis. So anything that helps slow it down, makes it less active, and shrinks it even minimally is cause for celebration.

But living away from the rest of her family is hard, both on mom and Annabelle. Sandy’s nervous to let Annabelle out of her sight without Trung around, which makes even taking a shower a nerve wracking event, and Annabelle misses her little sister sorely. Truly, half of their hearts are missing.

19884308_10155547527838044_3277160056144778241_n

Besides living with headaches and having an occasional bloody nose, Annabelle doesn’t know she’s sick, though Alyssa seemed to pick up on the seriousness of the situation without being told. Once quick to engage in a battle over a toy, Sandy says that Annabelle’s younger sister now lets Annabelle have her way, and she’ll rub Annabelle’s head when it hurts.

DIPG: The thief that robs children of their lives and siblings of their innocence.

But thanks to the treatment she’s receiving, Annabelle is still a mighty force, with big aspirations of becoming a Super Power Girl. Despite the sweltering Monterrey heat, Annabelle sprinted circles around us for hours, only asking once or twice to be carried. No longer shy, she laid her chubby hand in Lily’s, played that her squishy toy was alive, and infected us with her bubbly laughter.

mdhm_280617_0776-Edit

While being photographed, Annabelle sometimes bolted from the lens, or covered it, depending on its proximity. While these things might frustrate the parent of a healthy child, a cancer mom takes comfort in (and is grateful for) the ordinary, sometimes annoying moments of childhood. They mean she has fight left in her.

You can follow Annabelle on her Facebook page:

https://www.facebook.com/FightingDIPGwithAnnabelle/

Donate to her fundraiser here:

https://www.gofundme.com/fighting-dipg-with-annabelle

Andrea Ottaviani

mdhm_270617_0404-EditIt took some doing for us to find Andrea and her mamma Elena’s place in Monterrey (our Uber driver had a lot of patience), but as we finally entered the door to their apartment, our hearts simultaneously opened to each other. This type of thing doesn’t happen every day, but then again, it’s not that often people allow you into the most intimate corners of their lives.

Anni’s from Italy and doesn’t speak or understand much English (or Spanish, for that matter!), so communication might have presented a challenge, but that wasn’t our experience. Without the words to use, we relied on the language of our hearts. My daughter Lily painted her fingernails, Robyn sang her a song in Italian that she used to sing to her boys, and I helped put away the grocery delivery and chatted with Elena. Immediately, we settled into a satisfying, comfortable groove.

mdhm_270617_0212-Editmdhm_270617_0101-EditWith violet-tipped hair and purple-rimmed glasses, Anni epitomizes all things feminine. When presented with assorted cupcake-scented lipglosses, her entire being positively lit up. She adores her dog Simba, and she revels in a plate of meaty ribs. Anni dreams of owning a restaurant when she grows up, which she plans to call Un Pizzico d’Amore, A Pinch of Love. How fitting.

Staying in Mexico for treatment has taken its toll on Anni. Being away from her sister has carved a hole in Anni’s heart that she doesn’t pretend to hide; the mere mention of Clarissa’s name like a light switch sends Anni into sobs.

Elena explains that Anni always thinks of others before herself. She carries this with her even now, as she refuses to complain out of consideration of worrying her mother. How do you tell a child to disregard her own nature to want to shield you from her pain? How do you ask her to let you hold it, instead?

On November 14, 2015, Anni complained of a severe headache on the back of her head and her legs gave out during a karaoke evening with friends. For several days before, Elena described Anni’s eyes as looking grey and “off.” She also recalls Anni uncharacteristically crying, “Mamma! I miss you!!” when Elena started a new job. She was 7 years old at the time.

After her diagnosis, Anni underwent 46 sessions of radiation, accompanied by an experimental drug for DIPG. As of January 2016, she was doing beautifully, going to school and playing normally. But after radiotherapy stopped, her symptoms resumed: double vision, trouble swallowing, and difficulty moving her arms and legs. To help control these and ease the pain in her body, she takes high-dose steroids and morphine.

Anni’s undergone two IA treatments so far in Monterrey. Her tumor has shrunk since starting IA, and she’s able to move her right arm more than she was. Once she’s weaned off of steroids, she’ll be able to start immunotherapy, too, which will help kick start her immune system to fight this tumor.

mdhm_270617_0259-Edit

While steroids have their place in treatment, their benefits come at a hefty price. Anni’s appetite has soared, she’s gained weight, and her skin’s become stretched and thin. This once petite girl struggles to fit into her now too small wheelchair, and what she sees in the mirror is a monster from which people run.

If only she could see what we do. Sometimes you need to close your eyes to see the truth. We’re running toward you, Anni.

mdhm_270617_0115-Edit

Beautiful Andrea gained her angel wings on November 20, 2017. We love you forever, Andrea.

To read more about Andrea, please visit her Facebook page:

https://www.facebook.com/Comitatoamicidiandrea2016/

To donate, here’s the link to her Go Fund Me page:

https://www.gofundme.com/mujhmrng

SaveSave

Parker Monhollon

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.

mdhm_290617_2875-Edit

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.

mdhm_290617_2942-Edit

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.

mdhm_290617_2852-Edit

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.

mdhm_290617_2899-Edit

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.

Screen Shot 2017-07-10 at 2.37.12 PM.png

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.

mdhm_290617_2867-Edit

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