Empathy is the Love That Binds Us

 Depleted, Extinguished Mess (Jennifer Brown). “Heavy dripping messy force pulling down to the ground; energy, oxygen, and motivation depleted and extinguished.”

One of the scariest things in the world is to let yourself feel someone else’s pain. It’s also life changing. For you, and for them.

Since my cousin Jeni’s daughter Kira became sick and died from DIPG, I’ve gone from tiptoeing around the edges of Jeni’s pain, to feeling like I was drowning under the weight of it. It’s a precarious, delicate balance.

Unlike sympathy, which is the effect of being moved by someone else’s experience, empathy is where we come to understand that person’s experience by imagining what it would be like to be in his or her position. In other words, when you feel empathy towards someone, you allow yourself to figuratively slip into that person’s shoes.

As a result of allowing yourself to feel what someone else is feeling, you’re also more likely to help that person when they need it, so it’s easy to see that empathy is key to our survival. (On the flipside, the lack of empathy is downright dangerous. Think: psychopath.)

But what about when the person’s experience you’re identifying with feels too big for your heart to hold?

For example, as mothers, our hearts ache to see another mother in pain for her child. Some primitive part of us responds to her experience, and we can’t help tear up in reply. But so often, it stops there. It stops because we make it, out of self-preservation.


Muted Rage (Jennifer Brown). “The disgust, rage, pain, revulsion, desire to get something out of me, but it also looks like something is stuck in my throat or heart. Like it is somehow silenced by something, from the inside or outside or both.”

Let’s face it: If we allow ourselves to go to that place where our deepest fears reside, it feels like we could, quite possibly, be pulled down into that vortex from which there’s no escape. And then how would we function?

We might say things like this to excuse ourselves from this extended or prolonged empathy:

  • I can’t help everyone.
  • My own family needs me.
  • It’s too depressing.
  • I can’t make a difference.

And some of those things are true: We can’t help everyone, and we do have to try to manage competing demands on our time.

As far as being too depressing, well, that’s a tough one. There’s nothing as heart wrenching as seeing a child suffer. It should depress us. If it didn’t, we’re probably incapable of empathy in the first place. But it doesn’t have to consume us.

And if you feel like you can’t make a difference, you’re selling yourself short: No loving action is too small.

When you slip into empathy, you give the gift of yourself: Two hearts beating as one, each taking up bits of the pain that are too much for any single one to bear. In return, your own heart grows stronger, widening to hold room for love you maybe didn’t know existed.

Empathy lights a spark that will not burn us. And each act of kindness born of it grows as we breathe life into that fire. 

 Jeni wrote this poem after losing Kira:

That Wandering Piece of my Heart

By Jennifer Brown

The moment my motherhood was born

My son in my arms, small and vulnerable,

Came an instant knowing, in my deepest depths

That my heart was no longer protected in my chest, my own.

That my heart would go walking about and breathing

Outside of my chest, beyond my control.

That day the knowing was delivered

That a love much greater than me was born

And a brief shadow fell as some part of me learned

That I would become that great love’s humble servant.

Made instantly and forever vulnerable beyond return,

By the love born that day,

That love that could move like a steamroller, unstoppable,

That could console my child’s greatest suffering, her worst fears,

No matter how much I burned and bled and crumbled inside.

A love of such intensity it could chase away sanity.

That beautiful day my motherhood was born,

I couldn’t have fathomed what might happen

Should that wandering piece of my heart one day suffer unbearably,

Should that wandering piece of my heart one day stop beating

While walking about outside of my chest, beyond my control.

That day I was blissfully worlds away from knowing

The depths to which that love could reach,

From the indescribable knowing that would one day be born

The day my daughter took her last breath,

A knowing of how much greater than me that love can be,

A knowing felt in my body and heart and soul,

But far too painful for this mind to comprehend.

Here are two ways that you can help the children receiving treatment in Monterrey:





The mission of Making DIPG History in Monterrey is to spread DIPG awareness and to support the families of children receiving treatment in Mexico.

With the Totally Infinity OMs, you can do both.

These handmade & hand painted ceramic figures were created in honor of Kira Brown-Augdal, who fought DIPG with grace, strength, and courage for 15 months before she passed away on November 15th, 2017 at the age of 9.

The OMs come as a pair, forever “bonded” by a red thread, which represents the loving connection shared by all of the families who’ve gone to Mexico in search of a cure.

Keep one OM for yourself, and give the other one away.

When you give a Totally Infinity OM, tell that person about DIPG.

Together, we can create a worldwide community devoted to supporting children with DIPG and dedicated to finding a cure.

Click here to order Totally Infinity OMs.



A portion of the proceeds from the sale of each OM is donated to Making DIPG History, and 100% of that money goes directly to benefit the families of children receiving DIPG treatment in Monterrey, Mexico.


Connect with the Cause

Camron Cozzi

Camron_CozziTwo years ago today, on December 22nd, 2015, 15-year-old Camron Cozzi and his family received life-altering news: Camron had an inoperable brainstem tumor called DIPG.

Cam had suffered a concussion during a lacrosse game, and as his parents monitored his symptoms, they noticed he was getting progressively worse: double vision, stumbling, walking into things, and frequent vomiting. When DIPG was identified as the cause shortly thereafter, doctors told the family that the tumor would claim Camron’s life within 2 months if he didn’t get radiation, or in 9-12 months with radiation.

7x5 Flat CardCam is the first child I’ve written about here who I haven’t met in person. We just missed him last summer when we went to Mexico to get to know 11 other DIPG fighters. I got closer in November, when we were 20 feet from each other, separated by the door to his room at Hospital Angeles. My cousin’s daughter, Kira, had been admitted to the same hospital when I ran into Camron’s father, Paul. He asked if I’d like to say hi to Cam. Under the circumstances and knowing that I couldn’t be fully present given what was going on with my family, I declined.

Camron’s been on my mind ever since. His parents have helped me get to know him a little bit better, as I hope this story will help you.

By all counts, Camron’s a typical teenager: he loves candy, sleeping, his dog Jagger, and watching TV. One of his favorite channels is HGTV, which inspired his dream to become a tiny home architect. Coming from Bonney Lake, Washington, Cam’s a hardcore Seahawks fan, and he’s also an avid lacrosse player.

Although he’s not been to school in a while, Camron has always excelled academically. His parents describe him as stubborn, funny, brave, witty, honest, loyal, caring, and a warrior.

He’s also incredibly social. Camron’s mom Cyndi explains, “He used to call me from one friend’s house to ask if he could go to another friend’s house once he had to leave the first friend. I used to get so embarrassed that he did that because I didn’t want him to offend his friends. I also used to worry why he didn’t want to be with us—his family. He has always loved being with friends, and I miss that for him.”

Even though Cam might have wanted to spend most of his free time with peers, the Cozzi’s are close. Cyndi recalls when the doctor first told Cam about his tumor. “He asked calmly if there was a pill to make him die faster because he didn’t want mom and dad to have to go through any of it.”

Despite Cam’s initial reaction to his diagnosis, they opted for radiation, which began right after Christmas and continued until February 9th, 2016. About halfway through his sessions, Cam was ready to fight.

After completing radiation, Camron and his family took a Make-A-Wish cruise, and then headed to Cologne, Germany, where he underwent immunotherapy from April through November of last year.

“Early on you would think Camron was going to win the battle,” Cyndi says, since his first symptoms weren’t too bad, and radiation helped improve his balance. Camron also never had to take steroids to control his symptoms, so he didn’t gain the weight or have other steroid-related side effects that a lot of kids with DIPG do. And even though Cam had to give up playing lacrosse, he was still able to help out coaching younger teams in their town.IMG_5845However, in October of 2016, Cam started to struggle walking and an MRI showed he was in progression. One week before Thanksgiving, he had a shunt installed to help relieve symptoms related to hydrocephalus (fluid buildup in the ventricles due to tumor growth, which increases pressure in the brain). Up until he had the shunt surgery, Cam attended school.

His family contacted Dr. Burzynski in Houston after discovering Cam was in progression, and he received treatment at the clinic from January through May of 2017, when it was determined that he wasn’t responding to it. Throughout this time, Camron’s balance continued to worsen, and he started to use a walker to get around. By May, he had lost the use of his right leg and arm, so he needed a wheelchair for mobility. Around the same time, Cam also lost the ability to speak audibly.

Camron has had to rely on others to help him out with just about everything since last May—showering, dressing, you name it. “Once he started to lose his right side, he began to feel frustrated and mad,” Cyndi explains. “But shortly after, the happy, funny Camron that we knew started to show up again. His demeanor physically changed, reflecting his will to fight this battle.”

After the Burzynski clinic failed to help improve Cam’s condition, the family began researching other treatment options (of which there were few) and settled on Monterrey after talking with Parker Monhollon’s mother, Amanda. Camron was accepted into the program and received his first treatment on June 2nd, 2017. He’s completed all four recommended immunotherapy treatments, which he received alongside IA treatments 2, 3, 4, and 5.

Recently, Cam completed five rounds of cyber knife radiation back home in Washington to treat a secondary tumor in his thalamus. Between this and the Monterrey treatment, the doctors believe that the thalamic tumor will be eradicated. They also believe the Mexico treatment is working against the DIPG.21743419_10214665166768493_3963696692471813899_oFortunately, Camron’s mother works from home as a photographer and graphic artist, enabling her to incorporate Camron’s care into her days. His dad also has some flexibility to work from home, so between them, they can make sure that Cam’s never home alone.

Of course, DIPG affects the whole family. Camron’s older brother Jordan graduated from high school the year Cam was diagnosed, and he’s decided to attend college locally to be near the family and help take care of their home when they travel to Mexico every three weeks for treatment.

When talking about the hardest parts of this journey for Cam, Cyndi says that being a teen and having to spend all of his time with mom and dad must rank at the top. Camron’s also missed out on other important life events like learning to drive a car, and ordinary things like going to school.

“Being that Camron is older, he has experienced more than most DIPG warriors,” Cyndi explains. “As a parent, I mourn what should have been for Camron. It is hard for any of us to see the world keep going and leaving our DIPG children behind on many milestones. However I am joyful to be in the battle. Cam and I pray and give thanks for this journey we are on right now. And we do this through tears and laughter. It is our life, and Camron has never said he wished it any other way.”

IMG_1582We would have wished it another way for you, Cam. But we stand with you now and maintain the faith that you will beat this cancer for good.

On March 10th, 2018–Camron’s 18th birthday–he went to be with the Lord. We will continue to work to fulfill your wish that no more children will die from this disease, Camron.

You can make a memorial donation here:


Zoé Donneaud

mdhm_300617_3915-EditWe met with Zoé our last evening in Monterrey. Her family had just moved into their new apartment, where Zoé was quick to absorb my daughter Lily into her inner circle, cuddling her, presenting her with a handmade gift, working together on a puzzle, and watching one of Zoé’s favorite Disney movies (in French!). Her mother Emilie pretended to have her feelings hurt that Zoé allowed Lily to play with her, which delighted Zoé to no end.

At first, Zoé wasn’t keen on standing by herself as the center of attention while having her picture taken. She warmed to the lens though when Emilie reminded Zoé of her “modeling” poses, which Zoé embraced with hand on hip and cheeky turn of her head.

mdhm_300617_3950-EditEmilie describes her own experience taking Zoé’s picture. When Emilie requested her to smile for the camera, Zoé asked, “Is there a school that can teach me how to smile?” Since the tumor developed, her brain seemed to have forgotten how to smile on command. But once Zoé starts laughing, her face can’t help but remember how to smile.

Zoé and I discovered that we share the somewhat unpopular response to people’s accidents by laughing. (We can’t help it; falling is sometimes funny.) Once you witness Zoé’s response to calamities, you’d fabricate one just to see that belly laugh engulf her tiny frame and twist her face into sweet hysterics. DIPG can’t rob her of joy; that comes from an untouchable place in the heart.

mdhm_300617_4183-EditAs a result of her tumor, Zoé walks with a dainty tiptoe gait, which adds to her princess-like demeanor. DIPG has also caused Zoé to lose some of her characteristic self-confidence. She used to sing along to her favorite soundtracks, but gradually learned to doubt her ability when her voice didn’t respond as usual, and she fell silent. These subtle changes must be among the hardest—to count each subtraction that the disease makes from your child.

Zoé’s also become shyer and tends to cry more easily. At least once during the movie viewing, Zoé came into the next room where the adults were talking, sobbing full bore and telling us that we were being too loud. Emilie never missed a beat, clucking at our insensitivity and promising that we’d do our best to be quieter.

Having a child with cancer means making certain adjustments to your parenting style. Perhaps the first thing a parent lets go of is any outward expression of annoyance at their child’s eruptions. As tired and impatient as you might feel, you’d never begrudge her a sour mood. But what about all the times before when you admonished her for small infractions? With a child’s cancer diagnosis comes the impossible task of forgiving yourself for your humanity.

French ex-pats, Zoé’s parents Emilie and Sylvain have lived in the UK for the past 13 years. Sylvain coaches basketball, and Emilie taught French part time after Zoé’s birth. After Zoé’s diagnosis, Emilie turned to full-time caretaker.

mdhm_300617_4048-EditEvery child with DIPG presents a bit differently, and Zoé is no exception. She’d had a bout of the flu, and subsequently developed a squint in her eye in the mornings that disappeared each day by around noon. Concerned but not overly alarmed, her parents took her to several ophthalmologists and eye specialists over the course of two months, who all confirmed that Zoé’s eyes were healthy and her vision was fine. But as the squint persisted, so did Zoé’s parents. They scheduled an MRI of her brain, and three days before the test, Zoé started having headaches located at the base of her skull. Emilie also describes a “far away look” to Zoé around that time.

On May 22, 2016—just five days before her 5th birthday—the MRI showed a 5-centimeter tumor located in Zoé’s brainstem. Her parents were informed of her diagnosis, along with a rather cold accounting of what to expect: rapid deterioration of her condition, followed by death within 9 months to 2 years.

“Try to live normally and enjoy life as much as you can,” the doctors told them. Shattered, they began to trudge down the road of treatment options—a term better abandoned, since no treatment exists in most places, only palliative care.

Emilie tells us all this in hushed tones. Like many of the other children getting treatment in Monterrey, Zoé doesn’t know that she has a brain tumor, and it’s important that it stay that way. Instead, her parents tell her that she’s getting medicine to help her legs become stronger and to heal her eyes and headaches. Any more information would overwhelm her, so her parents move forward each day pretending for Zoé that everything is normal, while knowing it’s not.

mdhm_300617_3903-EditAfter two rounds of radiation and inevitable progression on the horizon, Emilie and Sylvain considered taking Zoé to Cologne for immunotherapy. In the meantime, the buzz about Mexico started circulating widely among DIPG families via social media.

Soon after her parents submitted her records for review, the Monterrey team told them of Zoé’s acceptance into the program. They jumped on the opportunity, as this tumor doesn’t wait.

Zoé received her first intra-arterial treatment mid-June, and is scheduled for her first immunotherapy combined with her second intra-arterial treatment in early July.

mdhm_300617_4200-EditSo far, the results of her treatments have been encouraging. Zoé’s speech and coordination have improved, she’s able to use the loo without Emilie’s assistance, her anxiety has lessened, and she’s more lively and energetic. She’s also started singing again. It’s hard to say for sure if the treatment in Mexico has led to these changes, if they’re residual from her last radiation sessions, or if it’s some combination of these.

But when you see your child returning to you, piece by piece, the question isn’t why, it’s how do we get more of this? For now, the hope of more resides in Monterrey.

You can follow Zoé on Facebook:


To learn more about Zoé and make a donation:


Alan Vasquez

mdhm_300617_3533-EditAlan and his mom Midy and tia Michele were staying on the outskirts of central Monterrey. We met them the afternoon of the last full day of our trip in their new construction apartment, which Mariana Gutierrez—who Midy calls “Alan’s angel”—helped find them at a discounted rate for the week. Alan sat next to us on the couch taking in the conversation quietly, obviously missing nothing.

People wonder how much these kids know about their condition. Often, parents don’t share the seriousness of their child’s illness with them. This lets them enjoy the moment—to be a kid, without having to shoulder the impossible weight of a “terminal” diagnosis.

mdhm_300617_3421-EditMidy admits they don’t talk about Alan’s tumor a lot, but when they do, they refer to it as a “little ball” on his brain. He knows he’s getting treatment for it, and he’s not immune to other kids’ reactions to his noticeable limp.

Alan’s 11-year-old brother Alex jumped to his defense one day at school when another student made fun of him. As parents, we welcome opportunities for our kids to look out for each other. What a cruel occasion for bonding.

18700078_421859148185551_3329949730308516473_nAlan’s limp is what originally brought him to the doctor. An avid baseball player (“the fastest runner on my team”), Midy assumed that Alan had a sports injury. But when the orthopedist couldn’t find anything wrong, and Alan’s symptoms worsened to include headaches and the weakness affected his whole left side, they got an MRI. Alan was diagnosed with DIPG on February 17, 2017, and was scheduled to start radiation just one month before his 8th birthday.

But something told Midy to hold off on radiation, and her husband agreed. Instead, Alan received acupuncture and a “cancer powder” from a Chinese medicine practitioner. Armed with the faith that God had a plan in store for Alan, Midy connected with Mariana, who encouraged her to come to Mexico before Alan’s symptoms progressed, and to definitely skip radiation, as the doctors here say it makes the tumor harder to treat. Parker Monhollon’s mom Amanda agreed that Alan should get to Mexico for treatment as soon as possible. “I had an instinct to come. I thank God every day.”

Mariana came to support the family when they arrived in Monterrey. “She sent a foot masseuse and made Alan a blend of essential oils. I asked if I could borrow a blender and she showed up with a brand new one and tons of other things we needed for our month stay. She’s one of the kindest people I know,” says Midy.

After the first infusion, Alan’s limp became less obvious and his mood improved, and with each treatment, his tumor continues to shrink. Alan is scheduled for his 5th IA and 2nd immunotherapy treatment later this week.

mdhm_300617_3587-Editmdhm_300617_3631-EditAlan shares the same number as his favorite baseball player, David Ortiz—Big Papi, who’s from the Dominican Republic like Midy’s family. Since we first learned about Alan, we’ve followed his journey on Facebook, and my daughter Lily’s had a special place in her heart for him. The best way she could think to describe her joy in finally meeting Alan in person was to explain that it would be like him getting to meet Big Papi. Now that he could relate to. Alan and Lily became fast friends, made closer since we left and they’ve been texting each other regularly.

It’s impossible not to let your heart go, to be drawn in to love this child, to become completely invested in his healing. And we aren’t the only ones to feel that way.

Midy works for Nautique, a ski boat manufacturing company in Orlando. Although she’s only been there for a few months, her coworkers quickly rallied to help Alan, repeatedly presenting Midy with money they’d collected to put toward his treatments. Nautique has also held chili cook-offs, and the Lezcano Foundation in New Jersey has offered to do a fundraiser for him.

So often with these heart-wrenching stories, though, the initial outpouring of support and funds invariably wanes as new headlines appear. Alan’s family has sold their home to pay for his treatments, the donations are trickling in slowly, and they haven’t figured out how they’re going to afford his next infusion.

Imagine the desperation in knowing that your child’s chance to receive the only treatment in the world that offers hope of healing him hinges purely on the generosity of others. But if Midy has one thing, it’s faith.

Faith got her son to Mexico, and while anxious that they’re out of money, Midy continues to put her trust in God that he will provide for Alan.

Alan styled his own hair the day we met in preparation for being photographed. He was a tough nut to crack at first, refusing to bust out that dimple. But like all kids, a little ridiculousness got him going. His crooked smile catches you in the throat, where it lingers, leaving you pleading that the delight that illuminates him can live on.


Sadly, Alan passed away on November 17th, 2017, just a few days after returning home from his Make-A-Wish Disney cruise. He is forever in our hearts.

You can follow Alan on Facebook:


To make a memorial donation:


Julianna Sayler

mdhm_300617_3097-Edit“So many times I wish people could meet the “before DIPG” Julianna. She was always bubbling over with joy, happiness, and giggles. She had bouncing blonde curls and an infectious smile,” Julianna’s mom Stacie says.

It’s nearly impossible to reconcile the child sitting before us with the one in the picture in her soccer uniform from last fall that Stacie holds up as evidence on her phone.

20503877_10154752570553483_637687124_nBut she’s still in there, the child that everyone who knows her loves, telling us through half-opened mouth from her carefully positioned place in the corner of the couch all about her life in Walla Walla, Washington.

The family lives on a small farm, complete with two horses, Julianna’s service-dog-in-training Ellie, and her cat Kloie and the chickens that she shows in the county fair with her local 4-H Club. While she’s particular about how she looks and loves to dress up “fancy,” Julianna’s not afraid of getting dirty while working around the farm.

11951982_10153064288173483_1579486960440392544_nJulianna has always led an active life surrounded by her family, who she adores. She is homeschooled, alongside 13-year-old brother Joshua and 7-year-old sister Jillian. She looks forward to learning in school every day, and she enjoys doing gymnastics, swimming, riding bikes, and playing soccer on a team every fall. As Julianna puts it, “I’m a going girl, not a sitting girl!”

Her siblings call her “Little Mama,” as she always cares for others, and Julianna dreams of one day becoming an obstetrician. But since she developed her “bump” (which she calls her tumor), she’s set her more immediate sights on educating people about DIPG.

Her mumbled words sometimes got in the way of this chatty girl telling us her stories, but it didn’t frustrate her to the point where she gave up trying. She has a lot to teach the world, and she’s not about to let her illness stop her from doing it.

mdhm_300617_3294-EditStacie can’t help but well up at her daughter’s selfless desire to share her experience. She brushes away the tears that won’t listen as she shows us YouTube videos that Julianna made since her diagnosis, where she relates the depressing statistics about brain tumors. Julianna uses powerful graphics to show the disproportionate amount of funding that goes to adult cancers, as her own face is puffy from the steroids she takes to keep the swelling in her brain from her tumor under control.

Julianna was diagnosed with DIPG just one month after her 8th birthday on November 20th, 2016. When she came in from playing with friends, Stacie and Julianna’s dad Eric noticed that her right eye suddenly didn’t cross the midline, and Julianna complained of seeing double. They rushed her to the ER and were transferred that night to another hospital in Spokane, three hours away. The doctors ordered an MRI, and soon after her parents were informed that Julianna had a brain tumor, most likely DIPG. “We were casually told that she had six to nine months to live,” Stacie recalls.

They went for a second opinion at Seattle Children’s Hospital, where a biopsy confirmed the original diagnosis.

Since then, Stacie explains that Julianna’s journey has been a “true whirlwind and rollercoaster.” She began 30 days of radiation in Spokane starting on November 29th, and four weeks after she completed those treatments, Julianna received Avastin infusions every two weeks. On February 14th of this year, the family learned that Julianna was accepted into the London CED program, and on March 5th, she had an 8-hour surgery at the Harley Street Clinic to place the catheters that would deliver that treatment three times until the beginning of May. Stacie says that while the doctors in London were wonderful, the family made the difficult decision to discontinue treatment due to the side effects it caused Julianna and the lack of response her tumor showed.

julianna and sibs-2The degree to which Julianna’s right eye turned in has only gotten worse over time, creating two images of everything she sees: a clear one, and one she knows isn’t real. As so often happens with cancer, the interventions and treatments have created their own set of problems. After the biopsy, the right side of Julianna’s face became paralyzed, and the left side of her body went numb. Radiation triggered temporary deafness in her right ear, and the CED infusions caused her to lose the use of her left hand and her left leg to become weak.

Nearly exhausted of options, Eric and Stacie prayed about what to do next. They talked with other parents whose children were receiving treatment in Mexico, and they decided to send Julianna’s scans to the team for review. Three days after they heard back that Julianna had been accepted, the family flew to Mexico, and Julianna received her first IA treatment on June 2nd. At the time we met, the plan was to continue IA treatments every 17-21 days, and hopefully start immunotherapy on her 3rd infusion.

Julianna’s doctors in Mexico “see” her, too. Dr. Nestor, a resident at Hospital Angeles, points to a picture of Julianna from just a few months back to remind his team that this is the little girl they’re treating.

20464488_10154752570453483_502716193_nEven in Mexico with this promising treatment, Julianna has had a rocky road with her “bump.” The dizziness she experienced prior to her first IA subsided initially after treatment, but has since returned. She also developed some shakiness in her hands that worsened after her second IA. They had to increase her steroid dose yet again because of inflammation, which has pushed out the start date for immunotherapy.

Julianna’s faith in God and His power to heal persist now—maybe even stronger than before. The night after her diagnosis, Julianna was feeling sad, so Stacie began reading her the Facebook comments people had posted saying that they were praying for her. Immediately, Julianna felt better knowing that she had her own “Team Julianna praying family,” as she called it. Her gratitude turned to concern when she asked if all the other kids in the hospital had a big praying family, too. Stacie said that she wasn’t sure if they did, but that they could pray for them. Julianna leapt at the opportunity to spread the love and asked her mom to make another post requesting that her praying family add all the other cancer kids to their prayers.

mdhm_300617_3259-EditThat night, Julianna also decided to start a foundation that would help other children battling DIPG. Whenever anyone gives her spending money, Julianna puts it straight into her project fund. “She loves to count it and talk about how she wants to tell her story to raise awareness and be other kids’ hope after she gets well,” says Stacie.

Throughout her journey and at every appointment and procedure, accompanied by the soft and steady presence of her battle worn doll, Susie, who sports her own IV, a spinal, and a port, Julianna remains steadfast in her faith, her prayers for a miracle spinning the threads that hold God to the promise to take care of His children.


Julianna won her battle against DIPG and went to be with Jesus on August 18, 2017.

You can follow her journey on Facebook:


To learn more about DIPG and the difference you can make, visit Julianna’s memorial foundation website:


Luke Stewart


We got to meet 7-year-old Luke and his brothers Lewis (5) and Lochlin (1) when his parents were looking into hyperbaric oxygen therapy on the first day of our trip. Hanging out in the clinic waiting room, the boys made silly Snap Chat faces with Lily, and his father Mark told us the story in his thick Scottish brogue of how they arrived in Mexico, while mom Jenny met with the doctors. Luke sealed our short visit with a kiss straight on the lips.

We met again a couple days later at the pool outside their apartment. This cuddly bear of a boy takes no prisoners when he decides to let you into his inner circle. (He’s even been known to chase people down for leaving without a smooch.) Sitting close enough to snuggle if necessary, Luke talked about his love of football and his dream of one day becoming a Formula One driver. Or an architect. Why limit one’s options?

Luke gave his mum some sage advice after she’d spent a full week away from the family in the hospital after baby brother Lochlin’s birth: I don’t think we’re having any more babies. From day one, Luke’s protected Lochlin against all threats, real and perceived—like Lewis. He’s always loved to push Lochlin in his pram, which he can do again now.

Luke’s considerateness isn’t confined to his family. Jenny tells of a time when his little friend next door broke his arm and therefore struggled at school. Luke carried the boy’s bag for him, helped him with his jacket, and even tried to help him eat!

Luke enjoys playing with his brothers again—fights and all—thanks to the treatment he’s receiving in Monterrey. They race to jump into the pool together on cue, Luke swimming to the edge and using his left arm to aid his right one when it lags behind.

mdhm_290617_2753-EditSplashing around in the water with his siblings at all is a huge accomplishment, considering where Luke was a couple of months ago. Lewis couldn’t understand why his brother wasn’t answering his requests to play or even talk with him, and Jenny described Luke as looking glassy-eyed and unresponsive. He was declining rapidly, and hope seemed far off.

Luke had just turned 7 when he started having trouble swallowing, slurring his speech, experiencing headaches, and drooling. His walking had also become unbalanced. A CT scan showed a tumor as the cause, and a follow up MRI pinpointed its location in the pons, confirming the diagnosis as DIPG.

Jenny explains that Luke knows he has a “lump,” for which they’re trying to get him help. They haven’t told him that it’s cancer, and neither he nor his brothers know the prognosis. “I need to protect Luke and don’t let him know too much about his condition. He is a thinker and way beyond his years. He asks loads of questions”.

Luke underwent 30 sessions of radiation after diagnosis, and they’d just travelled to London to pursue CED at the Harley Street Clinic, but Luke’s tumor had developed cysts, disqualifying him for the trial. Fortuitously, Mark and the boys met up with Scott Lau’s family at a football game, and Scott told him about the treatment in Monterrey, where they were heading shortly for his daughter Kaleigh.

The Stewarts followed soon after, arriving in Monterrey on May 2nd. By the time we’d met, Luke had already received three IA treatments and one immunotherapy. “I believe we were meant to be here and there is a reason we were turned away for CED,” Jenny says.

The difference in Luke was almost immediately apparent even after his first IA treatment. He was less sleepy, and able to wean off steroids without any problems. He fully engages in conversations, runs around with his brothers, and uses his right arm more every day. “Now we have hope, big hope,” Jenny says.

mdhm_290617_2480-EditJenny and Mark take Luke’s illness in stride with everything else thrown their way. They treat Luke the same as his siblings, and don’t panic over little setbacks, maintaining some much-needed normalcy in all of their lives. But don’t interpret that as a sign of their giving up: Jenny maintains a perpetual presence on social media, regularly posting pictures and updating Luke’s faithful followers on his progress, and she hunts down every available treatment option for her son. She’s an untiring, fearless constant in his life, aiming to ensure he has the best chance at beating this disease. “I wouldn’t be a mother if I didn’t do everything in my power,” Jenny says. “I’ll never give up trying to save him.”

Before and after each treatment, Luke gives a sporty thumbs up to tell the world he’s OK, and we’ve come to look forward to and rely on his cheery optimism in return. Now people from around the globe are posting selfies with #thumbsupforluke. Though it’s far from a fair match, we’re certain you’ve got this one, Luke.

mdhm_290617_2834-EditYou can follow Luke on his Facebook page:


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Kira Brown-Augdal

mdhm_270617_0001-EditThe first time I met Kira in person, she was visiting Rhode Island with her family—her Mama (my cousin, Jeni) and Pappa (Trond), and Kira’s brothers, August and Jasper.

Kira didn’t greet us with a hello; instead, she pig-snorted her way out of the car, up the driveway, and straight into our hearts.

To say I’ve never known anyone like Kira doesn’t do her justice, nor does it tell you much about her. So here goes.

Kira reminds me a lot of her mother, who so many years ago marched up that same driveway and all the way to the ocean, exclaiming over its magnificence when she eventually realized that giant expanse was water.

Screen Shot 2017-08-12 at 7.03.21 PMShe never let anyone help her cross the street, insisting she could hold her own hand.

She wasn’t really big on us calling her “our Jeni,” but she put up with it because she had to.

She moved all around the world with her brothers and parents, and she grew up to be the most exceptional person I’ve ever known.

While watching a movie recently, Kira asked her Mama to pause it and said, “Shall I tell you what I’m going to name one of my kids?” “Yes, please!” Jeni replied. Kira said, “Jeni.”

When Kira came to visit at four years old, she did pretty much everything on her own. She got herself dressed in the morning, fetched a breakfast of whatever she could find, joined her Mama for some down dogs on the lawn, and climbed her way to the topmost branches of the maple tree in the front yard, only later wondering aloud how to get down. She was fearless.

She cracked up over the term, ear of corn, dangling one from the side of her head, and she turned casually on her heel, walking away as her brother still fumed over a skirmish she’d let go of as soon as it’d happened.

15977103_10210461528726254_3188618977486293296_nShe splashed her way through the fountains in Boston Commons and chatted with strangers on the T, informing them that she used to live in Bolivia and was moving to Ghana next. And she got temporarily separated from us as we exited the station.

When we found her soon after, she sat on her mother’s lap and asked, “How long would have looked for me?” Jeni answered, “Forever, until I found you.”

Wherever she’s ventured, Kira has folded herself into the hearts of everyone she’s met. And while she may quite possibly be the most adorable little girl you’ve ever seen, don’t dare call her little, and definitely not cute. She is FIERCE.

Not long after Kira and family had moved to her father’s native Norway, she started experiencing sudden onset headaches and vomiting. We were visiting my husband’s side of the family in Montana last summer when I got a message from Jeni saying that the doctors thought Kira had a brain tumor. It was terrifying news, made only slightly less so by their reassurance that it might be benign.

But a biopsy told the unimaginable truth: Kira had a very aggressive brain tumor, which they referred to as a diffuse midline high-grade glioma. I wracked by mind to remember what we’d learned about pediatric brain tumors in oncology, which was pitifully little. It wasn’t until some time later that we found out that most doctors lump Kira’s tumor in with DIPG, due to its diffuse nature and primary location in the brainstem. Whatever its name, this tumor had a dire prognosis, with few children surviving one year post diagnosis.

Kira had three brain surgeries to place a shunt to relieve pressure in her head. Then, as in most places, the only “treatment” offered to her was radiation. Since nobody loves Nutella on pancakes like she does, Kira completed her treatments without going under—which meant she could eat beforehand. With the radiation mask bolting her head in place on the table, Kira practiced meditative breathing as Jeni walked her through the procedure over the speaker.

16681567_1231350263613291_6424289874334949377_nShe had a brief “honeymoon period” after radiation, when her grandparents from Norway and Texas came to spend some time with Kira and the family. They picnicked near the fjords, went ice-skating, and made Kira’s favorite meal of sushi together.

But by December 2016, Kira’s tumor was in rapid progression. She lost the ability to move her left side, and by mid-January, she couldn’t speak, swallow, or see, and the doctor said it was only a matter of time before she stopped breathing.

“I remember lying in our bed, having to ask Kira’s brothers to say goodbye to their sister forever, and Trond and I trying to do so ourselves. I remember the crushing, burning, suffocating pain of facing a life without our precious daughter. I remember each night watching to see if each breath might be her last, then feeling grateful each morning to wake up with her still breathing by my side.”

16107427_10210704470421239_6341651544564838374_oThen somehow, in this darkest hour, miraculously, Kira started very gradually regaining some of the functions she’d lost. She began to use her right hand again to form a half heart, made whole by Jeni, to tell her Mama she loved her. Over time, she started speaking a few words, and not long after, Kira was able to sit up and eat a couple bites of food, even joining the family at the table for Easter dinner.

Shocked and unsure of what to do after having sent her home to die, Kira’s doctor conceded that she needed another MRI to figure out what was going on and to help plan for future treatment if Kira continued improving. That scan showed that the original tumor had shrunk, but there were a couple satellite tumors in new areas.

Over the next several weeks, Kira continued making strides that looked a heck of a lot like healing, so Jeni began strategizing how to keep her on that path. She’d heard about Mexico through the DIPG community, and she spoke with Mariana Gutierrez and Dr. Siller directly about what to expect. After reviewing Kira’s MRI and seeing her on Skype, the Monterrey team accepted her into their program.

A follow-up MRI that Jeni had to push hard for ruled out bleeding that would have made it more dangerous for Kira to fly, and then Mama, Pappa, and Kira were en route to Mexico.

Kira received her first IA treatment within days of arriving in Monterrey. Her tumor responded by decreasing significantly in size, and the swelling and cysts she had earlier also started to subside. However, she began having more trouble eating, so she eventually needed a feeding tube to supplement her diet.mdhm_280617_0508-EditI went to Mexico in May when Jeni’s dad, who’d been down there helping them since they arrived, needed to return home to Texas for a few days. Even after my mother and my aunts had told me about their recent visits with Kira and I’d seen her pictures for months, nothing could have prepared me for the child who met me when I arrived.

The best way to describe her was fragile: paper-thin skin wrapped loosely around the bones protruding from under it; the roundness that the steroids lent her face unable to hide the sickness that lay behind it.

Just as astounding was Jeni’s seemingly endless reserve that allowed her to attend to Kira’s every need, which started at dawn and continued round the clock, save for a couple interrupted winks during the wee hours of the night.

Picture this: your child is wheelchair bound and unable to move anything but her right arm and her head. She tells you she’d like to try to use the toilet, instead of going in the pull-up she’s had to wear since her body surrendered the right to hold her urine. So you hoist her out of her chair, her tiny arm the only part that can grip round your neck, and you squat with her like that, suspending her over the toilet for as long as it takes to help her feel like she has the tiniest bit of control over her life.

Getting Kira to swallow a pill could take a half hour of encouragement and demonstrations, as Jeni placed Kira’s hand on her own throat and swallowed to remind her how it feels.

Her head hurt too much to venture outside much, and every noise sounded like thunder, as the tumor had invaded close to her auditory nerve. But sprinkled between the hours of careful positioning, changing of port bandages, and slowly pushing liquid food-filled syringes, we had a chance to get to know each other again and in a different way, each of us in these new roles that no one could have anticipated.

Leaving them a few days later was the most heart-wrenching task of my life, but I promised Kira I’d return soon.

mdhm_010717_4348-EditThe next time, I came with Kira’s cousin, Lily. Though they’d not seen each other in nearly two years, the bond they shared retied itself as they fell back into their easy, comfortable closeness. Kira brushed Lily’s hair, told her she loved her (something normally reserved for Mama and Pappa), and pulled her close to whisper in her ear to please stop blowing kisses. “I don’t like kisses at all.”

mdhm_010717_4234-EditKira’s now had five IA treatments. With each one, she gains a little more functioning. She can move her left arm and pull herself up to standing with assistance, her speech is becoming clearer and stronger, and her once broad vocabulary is returning.

As I look into those huge liquid brown eyes so filled with joy at just being alive, I can so clearly see Kira years from now, walking next to her daughter, who’s holding her own hand as she crosses the street.15940602_10154951031339973_4978561726034908217_n

On November 15th, 2017, Kira passed away from complications of DIPG. We love you totally, infinity much, sweet, perfect girl.

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Kaleigh Lau

mdhm_290617_1907-EditIf “pink” could name someone’s personality, surely it would be Kaleigh’s. With her sights set on someday becoming a princess, Kaleigh gets in lots of practice for her future position. She’s straightforward, yet gracious; determined, but considerate.

Before completing our introductions, Kaleigh quickly corrected how we pronounced her name. “My name’s Kaleigh like Sally, not KAYleigh!” Glad we cleared that up right away! She invited us into the apartment, all smiles as she and Lily fell into an easy friendship founded in a shared birthday, similar allergies, and love of board games and sushi.

Her father tells a story of when a family friend bought Kaleigh some coconut milk yogurt. When her auntie asked Kaleigh how she liked it, she said that she did. Later when grocery shopping, her dad asked her if she’d like some more, but Kaleigh declined. He asked her why, and Kaleigh explained she’d said that in front of auntie so as not to hurt her feelings, as she knew auntie had spent a lot of time looking for something she could eat.

mdhm_290617_1985-EditApart from an inturned eye, Kaleigh appears completely healthy and vital. But not too long ago, her tumor was in progression.

In April of 2016, Kaleigh seemed to have a cold or flu, but when she developed double vision, her parents Scott and Yang took her to London Moorfield Eye Hospital, where they confirmed that her eyes were healthy. They transferred her to the Royal London Hospital for follow-up, where she underwent a CT Scan. Immediately after, the hospital dispatched the MRI team to come in for a scan that same day. The next day, the family relaxed a bit as the team told them not to worry and that they’d explain the treatment plan in a couple days. When Tuesday came, though, the news was not what they ever expected to hear, and their “world started to cave in and turned upside down.”

The doctors told them that Kaleigh had DIPG. Scott asked, “When do you operate?” to which they responded they couldn’t; radiotherapy was the only recommended treatment. Once the doctors left the room, Scott and Yang combed the internet for information, and the statistics they came across were unimaginable: no one survives this tumor. Even as Kaleigh sat there looking well, the doctors informed them she had about 9 months left to live.

Her parents told Kaleigh she has a little lump in her head and they’re trying very hard to remove it. “She is only a child and doesn’t need to know about the severity of the illness,” Scott explains.

13315490_602019906638093_2772365114661341739_nKaleigh started radiotherapy on April 25th, 2016. She completed 30 sessions, followed by a long 7-month “honeymoon” period, after which her double vision returned. She underwent 10 more radiotherapy sessions starting in January of 2017, but her vision problems persisted, and some new symptoms started: her left hand got weaker, she began to stutter, her walking became unbalanced, and she developed regular headaches.

Scott and Yang discovered Monterrey at the end of March, two weeks after Kaleigh had been turned down for CED treatment for a second time at the Harley Street Clinic in London. Scott, Yang, Kaleigh, and younger brother Carson packed what they could and hopped on a flight to Mexico on April 18th.

klKaleigh had her 5th IA and her 4th immunotherapy on July 3rd, after which they returned to London for a few weeks. Scott champions the treatment, crediting it for saving Kaleigh’s life, giving her back her personality, and helping her return to doing the things she loves, like the monkey bars. It’s not surprising that others have followed his lead and he’s become the Monterrey “cheerleader,” answering parents’ questions and helping connect families with local resources.

mdhm_290617_2049-EditScott’s upbeat attitude is completely catching—he lives by his belief that happiness is the best medicine, which is why he insisted the whole family go to Mexico for Kaleigh’s treatments. His company has fortunately shown incredible support, allowing them to be together while Scott takes time off of work and Kaleigh continues to respond positively to this potentially life-saving therapy.

mdhm_290617_2224-EditBetween doctor’s appointments, blood draws, and treatments, they aim to enjoy their time there as if on holiday. They meet up with other families for swimming and to share meals, and Scott arranged for the families to attend the local Kidzania and Safari park at discounted price. This gives the families precious opportunity to connect with each other and fill up on encouragement that only people going through the same heartache can offer.

It’s no wonder Kaleigh’s faring so well. Armed with the enduring love of her family and a tenacity that belies her size, she’s taking DIPG by storm. Go forth in love and beat this beast, Princess Kaleigh. Your kingdom of loyal supporters is behind you every step of the way.


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Hunter Jones


“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.


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.


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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:


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