American Spirit

by Taya Kyle

  Was Hands and Feet of Jesus happy to get the food?

  “Their eyes lit up like diamonds when they saw what Nick brought in,” says Nick’s dad, Matthew.

  Just so you don’t get the wrong idea, Nick did not give up on candy completely; he only suggested that people give him food instead. If they still wanted to give candy—or, even better, both—that was fine with him. He’d have his treats and eat them, too.

  Just as important as the food Nick and his friends picked up was the community spirit they ignited. There is already talk of starting this as a local tradition, with other kids and families doing the collecting. A motorcycle club has already signed on to help.

  This young man has a bright future ahead of him, even if his present dreams—becoming a veterinarian or a video-game designer—get changed along the way. Most important, he’s planted a seed that surely will grow in the future.

  When Life Gave Him Cancer, He Made Lemonade

  Ulises

  Kids can be amazingly generous, but what really amazes me is how resilient and brave they can be at the same time.

  Imagine undergoing brain surgery at age eight.

  Brain surgery is an ordeal under any circumstance, but in the case of Ulises and his family, logistics seemed to conspire to make everything even more difficult. And yet somehow the young man not only got through it but turned his recovery into a springboard to help others.

  Ulises—his name is a variation on the spelling of the Greek hero Homer wrote about—was born with cavernoma hemangioma. Those ominous-sounding Latin words can be translated, roughly, as a bunch of messed-up blood vessels getting tangled in your brain.

  I hope that’s not too technical.

  It’s a strange sort of condition, and one that isn’t always obvious at birth. But I’ll leave the complicated explanations and data to the doctors and just say that in many cases there are no symptoms, at least for a while.

  That was the case for Ulises, who was like any other active, outgoing young boy until he was around six years old. It was then that his mom noticed that he was walking funny and that he didn’t seem to have the full use of his left hand.

  It took a while for the doctors to figure out what Mom knew instinctively: something was seriously wrong. Finally, an MRI revealed that he had a benign tumor caused by errant blood vessels in his brain. The tumor was pressing on the cells around it in a such a way that it hindered their proper functioning; that in turn was affecting his walking and his use of his hand.

  That wasn’t the worst of it. The doctors were worried that if one of the blood vessels began to bleed, the result could be catastrophic. Ulises needed surgery to remove the tumor.

  Brain surgery is a tricky specialty, and the nearest doctor who could perform the operation worked in Wichita, several hours from their home. Mom and Dad arranged their schedules so they could be with him through the operation and then through the several weeks it took for him to recuperate. They often found themselves sleeping in his hospital room or even in the car just so they could gain a few extra hours with their son.

  Recovering from brain surgery is not like getting over a cold; you have to retrain your body and your brain to work together as a unit again. Ulises reprogrammed himself with the help of rehab specialists at Madonna Rehabilitation Hospital in Lincoln, Nebraska.

  Madonna is a superb institution. Taking patients from all across the country, it helps them recover from strokes, spinal cord injuries, traumatic brain injuries, and, yes, brain surgery. The hospital’s programs take a multidisciplinary approach and aim to involve the whole family in the recovery as much as possible. There’s a special team that works with pediatric patients.

  Ulises stayed in rehab at Madonna for seven weeks. The better he got, the more he wanted to do something for the staff that was working so hard to help him.

  He wasn’t sure what that would be, until his younger sister came up with an idea—why not open a lemonade stand? Everyone loves lemonade.

  He’d thank the staff with free lemonade—and maybe earn a little money on the side from others.

  The powers that be at another hospital might have shot down that idea pretty quickly. But Madonna is known for its innovative approach to rehabilitation, and the staff took Ulises’s idea and ran with it.

  Actually, it was more like a walk—they encouraged Ulises to set up his “stand” on a cart and wheel it through the wards, offering his wares to staff and patients and anyone who needed a drink.

  Technically, he wasn’t charging for the lemonade. But donations were gladly accepted—and wouldn’t you know, recipients chipped in to the tune of some forty dollars, most of which he opted to promptly donate back to the hospital to buy presents for other children.

  This wasn’t the only time Ulises’s native generosity came out. His father still marvels at the boy’s decision to turn over more than a hundred dollars he had saved from birthdays and other occasions to his elementary school in order to help needy families.

  One of the inspirations for his generosity was the kindness of the teachers and staff at his school, who had raised money for him and his family to help them with the surgery and recovery. Kindness encouraged more kindness; help inspired more help. And of course his parents and other family members had taught him about the importance of helping others all along.

  We talked to him nearly eight months after his surgery. He still had a limp and was not quite back to full strength or mobility. But the tumor had not affected his memory or brain functions, and it certainly didn’t dampen his spirit—or his ambitions.

  “I would like to be a doctor when I grow up,” Ulises told Jim when they spoke by phone.

  Why?

  “I can help a lot of people.”

  Here’s hoping that his dream comes true.

  Toward a Sweetish Cure

  Alex’s Lemonade Stand

  Kids and lemonade seem to go together. And the most famous lemonade stand in the world—Alex’s Lemonade Stand—is all about doing good.

  Spoiler alert: Alex’s is not a physical lemonade stand, per se. It’s more like a lot of lemonade stands, all across America, doing good in as many ways as there are kids.

  It started with one girl—Alexandra “Alex” Scott. Born in 1996, Alex was a typical toddler, sweet and energetic, when shortly before her first birthday, she was diagnosed with neuroblastoma, a relatively rare form of cancer that affects the sympathetic nervous system.

  That’s the part of our nervous system controlling things we aren’t directly conscious of. Let’s say you get a sudden fright. In the milliseconds before you can run away or otherwise react, your body increases your blood flow, dilates your eyes, and primes your sweat glands. All of that is done without your conscious decision making, courtesy of the sympathetic nervous system.

  Neuroblastomas act in a wide number of ways; in some cases, they seem to simply stop growing on their own. However, the disease can be extremely aggressive and difficult to treat. A child’s prognosis depends on a wide range of factors, including her or his age and the location of the cancer.

  On Alex’s first birthday, her doctors provided an update that wasn’t very welcome. Not only was her prognosis very poor, but they predicted that even if she did beat the disease, she would never walk.

  They obviously didn’t know Alex or her parents, Jay and Liz Scott. By the time she was two, Alex was walking with the help of leg braces. Even better, her body was fighting the cancer and she was gaining strength. Among the different treatments that helped was a type of radiation therapy known as MIBG Therapy. Radioactive iodine was injected into her bloodstream; the radioactive chemicals attached themselves to the cancer cells and killed them.

  But all these therapies could not succeed in completely eliminating the cancer, and things took a turn for the worst around the time she was four. As the tumors grew, Alex went to the hospital to get a stem cell transplant in 2000.

  Stem cell transplants definitely save lives, but they are difficult for
patients, and they were especially hard in the early years of the therapy when Alex was a patient. Not the least of it was the long hospital stay it required. (Now, some transplants are done on an out-patient basis, but considerable care is still needed.)

  Plus, there were then and there are now no guarantees that the procedure will successfully eliminate the cancer or meaningfully prolong life.

  Alex really showed her spirit when she went into the hospital. She told her parents that when she got out, she was going to open a lemonade stand. Not because she was thirsty—she wanted to raise money to help doctors help other children just like her.

  She underwent the operation and recovered. When she was well enough to go home, she kept her promise with the help of her older brother. The family set up the stand after the operation.

  Alex had a unique, quirky story—fighting cancer with a lemonade stand. The local media heard about it, and suddenly it went viral. Even so, her parents had no idea that she would be so successful.

  “We teased her,” says Jay. “‘You’re going to get five or ten dollars.’”

  She got two thousand.

  Other people heard her story and rallied to the cause as she and her family continued running lemonade stands as a way of supporting the hospital and the fight against cancer.

  Alex raised about twelve thousand dollars from her second stand.

  As phenomenal as that was, the third time was the charm. People came from miles away in the pouring rain to buy some lemonade and make a donation. Alex collected $18,000.

  “People traveled from all over the East Coast all day,” remembers her dad. “Our yard was ruined from so many people standing there.”

  After that, Alex started getting letters from strangers every day.

  We heard about you on the news. We had our own stand. Here’s the money.

  As Alex’s fund-raising continued, she asked her mom what the money was being used for.

  You know already. Neuroblastoma research.

  “That’s selfish,” said Alex. “Other kids want their cancers to go away, too.”

  And so the family began spreading the money around. As the lemonade stands and publicity continued—viral is hardly the word for it—Alex told a reporter that she would raise a million dollars.

  “Last year I raised a hundred thousand,” she said. “This year, it’ll be over a million with the help of others.”

  “You can’t tell a reporter you’re going to raise a million dollars,” said Alex’s mom when she hung up.

  “If people continue to help me, I think I can do it.”

  The reporter’s story attracted a lot of attention—including calls from TV producers for programs like Oprah Winfrey and the Today show. Alex accepted many of the invitations. Her fund-raising idea had gone national.

  Alex’s parents tried to talk her out of going on Oprah’s show. By that point, her health was in serious decline. She was undergoing treatment and bleeding internally from one of the cancer-fighting treatments. But Alex insisted; finally, a compromise was suggested—if her doctor gave her the OK, her parents said they would relent.

  Her doctor gave his OK. Alex flew to Chicago, doing the show and returning in a single day.

  The story just kept getting bigger and bigger. Helping spread the word was an incredible book called Alex and the Amazing Lemonade Stand, written by Alex’s parents and illustrated by her aunt Pam Howard. Then a supermarket chain in the Midwest—Hy-Vee Supermarkets—hosted a Midwest Lemonade Days in Kansas City, Missouri. Alex’s idea was rippling out.

  The million-dollar goal was achieved only a few months after she announced it.

  Unfortunately, the brave little girl died that same summer. But by then, her cause had so much life that it was impossible to stop.

  “Liz said, listen, if we continue what Alex started, we have a chance to help a lot of kids,” recalls Jay.

  And so, on what would have been Alex’s ninth birthday, January 18, 2005, her parents and friends established Alex’s Lemonade Stand Foundation for Childhood Cancer to keep the campaign going.

  Alex had given the foundation very strong momentum—besides that million dollars, an additional $2 million came in following the news of her passing. But now that she was gone, others had to take the lead. Her parents recruited a group of professionals to help as they worked out the way ahead.

  “We steered the train, but she was the one who fueled it,” says Jay. “She’s still the reason many people get involved and donate. They get involved in her story. When we do a telethon and tell her story, the phones light up. People can relate.

  “I can’t tell you how many people email us and tell us they’ve named their kids after her,” he adds. “She’s inspired many people to do things they never thought they could do. There are lemonade stands for all kinds of charities now, which we think are great.”

  Alex has been an inspiration not only to fund-raisers but to patients and their families. The fact that she lived so long after the discovery of the cancer (such a long survival rate was rare at the time) surely encouraged others to seek early treatment. And it continues to give hope as new therapies are discovered and perfected.

  Today, Alex’s Lemonade Stand is a giant help-children-fight-cancer machine, acting as a middleman and goodwill processor connecting local fund-raisers—mostly kids—with people who can use the money to fight cancer in different ways.

  The Scotts remain very hands-on with the foundation. Besides the foundation’s own fund-raisers, it helps several thousand fund-raisers a year, and Mom and Dad often write personal thank-yous to the kids who hold them.

  “We want donors to be part of the family,” says Jay. “Most aren’t ‘once and out.’ They keep raising money.”

  As deeply involved as the Scotts are with the foundation, the group is just as close with its scientists, who get personal phone calls when grants are awarded and generally remain in close contact with the organization and the Scotts themselves.

  More than eight hundred research projects have been funded since 2005. The research is fundamental and complicated. There’s one titled Novel Approaches to AML Differentiation Therapy, which aims at helping kids with acute myeloid leukemia (AML) by figuring out if “unwinding” DNA may be contributing or causing the cancer, and possibly finding a way to target cells with the unwound DNA as a way to combat leukemia.

  Not exactly your average grade school term paper. Yet this elevated science is made possible by grade school kids all across America.

  More than money is involved in the research, of course. There’s hard work and a lot of trial and error. Proper development of a therapy can take years, if not decades.

  But sometimes things come together quickly, with a little luck.

  Not too long ago, a scientist funded by the foundation made a genetic discovery based on a phone call about a family that had three cousins with neuroblastoma. With that as a clue, she found a genetic defect common to a subset of the disease. She then found a drug used in lung cancer that went after the same defect. Within eighteen months, she had a clinical trial under way. Almost immediately, her team found incredibly positive results with a certain dose.

  “That’s the type of thing that gets us excited and keeps us going,” notes Jay.

  Families in some of the trials occasionally reach out to the Scotts to talk about how the trials have helped. They appreciate that immensely. It helps make their effort more personal, not just for them but for their staff and the donors. Stories of cancer victims are often chronicled on a website the foundation hosts.

  “Our donors love . . . getting to meet the families that we’ve helped,” notes Jay.

  Not every research program or clinical trial has positive results; that’s the reality of science, especially when it touches on cancer. But even prolonging life by a few months can be positive.

  “If you can extend the life of a child a few years, that is tremendous,” says Jay. “We’re going for cures, but we’ll take time.”
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br />   Alex’s Lemonade Stand branched out in 2017. Acting on the advice of its scientific advisory board, the foundation began a “big data” lab, designed to gather data on childhood cancer.

  The Childhood Cancer Data Lab is not the kind of laboratory that has test tubes and beakers; rather, it’s a gathering and processing place for data—information about cancer and its victims that may help provide insight into strategies for fighting the disease. Currently, its scientists are compiling a database of nearly two million tissue samples that have been DNA sequenced. While the sequencing is already done, the data has to be “harmonized”—in other words, put into the same sort of format so that it can be processed together. The next step will allow researchers to compare their own tissue samples to that database, finding new connections.

  The Data Lab will immediately give scientists a larger data set to work with, opening up new areas of inquiry and testing. For example, a researcher might find similarities in two very different types of cancer, or similarities in the generic makeup of patients with very different ailments, and work from that parallel to find a cure. Perhaps a drug combating cystic fibrosis will have an impact on a certain type of cancer.

  Very theoretical at the moment, but very exciting.

  While the primary focus of the foundation’s funding is research, Alex’s Lemonade Stand also has a special program to help children and their families travel to the hospitals where they can receive care. One of the unfortunate realities of cancer treatment is that it is not conveniently located in every community. Advanced treatments are available in very few hospitals, and even if you happen to live near a major metropolitan hospital with a research facility, that facility may not specialize in the type of disease you have.

  Having been parents of a cancer patient, the Scotts realized that the need to travel for treatment might be an obstacle for many, even if insurance covers other costs. And so they and the foundation board established a program that provides grants through local agencies to cover some of these expenses.