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:

https://www.facebook.com/associationprincessezoe/

To learn more about Zoé and make a donation:

https://www.allwithzoe.com

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.

mdhm_300617_3748-Edit
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.

mdhm_300617_3705-Edit

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:

https://www.facebook.com/alansdipgmedicaljourney/

To make a memorial donation:

https://www.gofundme.com/alans-dipg-medical-journey

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.

mdhm_300617_3061-Edit

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

You can follow her journey on Facebook:

https://m.facebook.com/groups/201059360350858

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

https://www.teamjulianna.org/

Luke Stewart

mdhm_290617_2351-Edit

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.”

20245395_10212009780473056_5755250140202173528_n.jpg
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:

https://www.facebook.com/helplukemakehistory/

To make a donation:

https://www.justgiving.com/crowdfunding/AllHelpLuke

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.

Follow Kira on Facebook:

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

To make a memorial donation:

http://minaksjon.barnekreftforeningen.no/forskning/5-5378

 

 

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.

mdhm_290617_2119-Edit

Follow Kaleigh on Facebook:
Link to Kaleigh’s website:
To make a donation:

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

Learn more about Hunter on his Facebook page:

https://www.facebook.com/healinghunterjones/

To make a donation:

https://www.gofundme.com/hunter-jones-medical-health-fund

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