“We didn’t want her to have to go through another brain surgery,” her mom Jenny Shapiro tells PEOPLE exclusively.
As an alternative, the Shapiros applied to an intense, six-week proton radiation study at St. Jude Children’s Research Hospital to target the tumor without the severe side effects of traditional radiation.
Now it seems like they made the right decision. “The tumor has shrunk by half,” says Jenny. “Even if it were to get bigger again later, it’s given us all this time. We are so grateful to St. Jude’s.” Alexis will continue to be part of the study for the next 5 years, with the hospital tracking her progress.
Now 15, Shapiro first underwent surgery in 2011 to remove the brain tumor, which resulted in a damaged hypothalamus, the part of the brain that controls when a person feels hungry or full. Within months she developed hypothalamic obesity, a rare condition that caused her to gain weight uncontrollably. Shapiro put on 150 lbs. in two-and-a-half years, weighing 203 lbs. at 4’7″ by the time she was 12.
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The massive weight gain took a toll on the shy, introverted girl, who lives in Cibolo, Texas with Jenny along with her dad, Ian, and two siblings, Kaylee, 12, and Ethan, 11. She dealt with constant pain and fatigue and had limited mobility. Despite drastic changes to her diet and exercise routine, Alexis could not lose the weight. Concerned for her life, the Shapiros decided to try weight-loss surgery as a last resort, first a sleeve gastrectomy in 2014, which led to a 60-lb. weight loss, followed by a gastric bypass in 2015.
Then they found out the tumor has returned. Jenny described to PEOPLE at the time what it was like having to tell Alexis “the beast of a tumor” was back: “She pulled her shirt up over her mouth, eyes watering, and said, ‘I don’t want to gain weight again.’ The complication of hypothalamic obesity has been her biggest struggle.”
“It was a crazy time,” says Jenny, of learning of the tumor’s reappearance just as Alexis was trying to get back to her normal, post-weight-loss surgery life. Applying for proton therapy was a gamble, but Jenny says she is so thankful they did. Beyond the tumor shrinking, there was another, unexpected benefit for Alexis: “She was surrounded by kids with her same condition and never felt like an outcast,” says Jenny. “She got to be a real teenager. She got to hang around with her brain tumor group and be independent.”
“Not only was it treatment for her brain tumor, but it was socialization,” Jenny continues. “She’s still quiet, but these friends of hers that she made — lifelong friends from all over the country — totally helped her and improved her self-esteem.”
And these days, just like a typical teenager, Alexis stays in touch with them through social media. “When she is feeling lonely with us, she can Facetime these friends who can understand what she’s going through,” says Jenny. “It’s been so great.”
And moral support is important for Alexis, who has gained back the 60 lbs. she initially lost after the weight-loss surgeries. But her mom says overall, she is doing well. “I am just thankful that she is still healthy. She doesn’t have all the weight-related health problems that she used to have. Even though she is back to her original weight of 200 lbs., she has gotten taller,” says Jenny, adding that Alexis is now 5’5.” Plus, she says,”Her insulin is at a great number and she has no more diabetes.”
She can also move around much more easily than before. “She has still remained active even though she has put on the pounds,” says Jenny. “She is doing more things like bending down and picking things up, dressing herself, things she couldn’t do before,” she says. “Her liver isn’t so big anymore, so she is not in constant pain.”
Meet Alexis Shapiro, a 12-year-old Suffering from Uncontrollable Weight Gain
Alexis goes to the gym three times a week with Ian and takes a walk every evening with Jenny when she gets home from work. “And she’s always counting her steps — she gets on her phone and will be like, look how many I got today!” says Jenny.
In fact, Alexis is looking forward to a one-mile fundraising walk at the end of April to benefit Make-A-Wish, which sent the Shapiros to Hawaii in 2012. Walk for Wishes is taking place in San Antonio at Morgan’s Wonderland, a special amusement park for handicapped kids that means a lot to Alexis. “She knows it as one of the only places where she could go on the rides,” Jenny explains. “She’s excited because after our Make-a-Wish trip, we always said we wanted to give back — and now we’re raising money.”
Alexis Shapiro Is Nearly 60 lbs. Lighter Following Gastric Sleeve Surgery
And while Alexis is making strides — literally and figuratively — she has a big goal up ahead: attending high school. In the fall she will return to public school after being mostly homeschooled for the past few years.
“I think she is pretty nervous. I figure if we start talking about it now, by the time school gets here, we’ll be ready,” says Jenny, who thinks the new friendships may help, too.
“She is a little more outgoing since she’s made these friends at proton therapy. It increased her confidence,” says Jenny, who keeps supporters updated through a “Hope and love for Alexis” Facebook page. “She is still pretty shy but definitely more outspoken that she used to be. I’m hoping that when she gets to high school she will be more social and a little more independent. That’s what I’m hoping, little by little. “