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.

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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.

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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.

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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

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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.”

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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:

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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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