Alan 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.
Midy 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.
Alan’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.
Alan shares the same number as his favorite baseball player, David Ortiz—Big Papi, who’s from the Dominican Republic like Midy’s family. Since we first learned about Alan, we’ve followed his journey on Facebook, and my daughter Lily’s had a special place in her heart for him. The best way she could think to describe her joy in finally meeting Alan in person was to explain that it would be like him getting to meet Big Papi. Now that he could relate to. Alan and Lily became fast friends, made closer since we left and they’ve been texting each other regularly.
It’s impossible not to let your heart go, to be drawn in to love this child, to become completely invested in his healing. And we aren’t the only ones to feel that way.
Midy works for Nautique, a ski boat manufacturing company in Orlando. Although she’s only been there for a few months, her coworkers quickly rallied to help Alan, repeatedly presenting Midy with money they’d collected to put toward his treatments. Nautique has also held chili cook-offs, and the Lezcano Foundation in New Jersey has offered to do a fundraiser for him.
So often with these heart-wrenching stories, though, the initial outpouring of support and funds invariably wanes as new headlines appear. Alan’s family has sold their home to pay for his treatments, the donations are trickling in slowly, and they haven’t figured out how they’re going to afford his next infusion.
Imagine the desperation in knowing that your child’s chance to receive the only treatment in the world that offers hope of healing him hinges purely on the generosity of others. But if Midy has one thing, it’s faith.
Faith got her son to Mexico, and while anxious that they’re out of money, Midy continues to put her trust in God that he will provide for Alan.
Alan styled his own hair the day we met in preparation for being photographed. He was a tough nut to crack at first, refusing to bust out that dimple. But like all kids, a little ridiculousness got him going. His crooked smile catches you in the throat, where it lingers, leaving you pleading that the delight that illuminates him can live on.
Sadly, Alan passed away on November 17th, 2017, just a few days after returning home from his Make-A-Wish Disney cruise. He is forever in our hearts.
You can follow Alan on Facebook:
https://www.facebook.com/alansdipgmedicaljourney/
To make a memorial donation:
Making DIPG History in Monterrey 