Coping With Leukemia at Age Three, and Helping Others Understand Cancer

When Alexis Hwa was diagnosed with leukemia, her parents didn't know how to explain what was happening to her. That's the reality for many children who are battling a disease before they can even speak.

by Lindsay Schrupp
Nov 5 2015, 7:40pm

Image courtesy Angela and John Hwa

Alexis Hwa was three years old when she was sent home from preschool with a fever. A few blood tests later, and she was diagnosed with Acute Lymphoblastic Leukemia. "We were shocked," said Alexis's father, John. "We were hoping that after the second, third, and fourth blood tests that they would tell us it was all a mistake, that Alexis did not have leukemia."

But it wasn't a mistake, and Alexis would face two-and-a-half years of intensive treatments. She was too young to understand why chemotherapy made her hair fall out, why steroids gave her extreme mood swings and insatiable hunger, why she was isolated from her friends, or what cancer was at all. Alexis asked her parents questions all the time; frustrated, Angela and John rarely had answers to satisfy her. They even tried comparing losing her hair to losing her baby teeth, but Alexis had never lost any teeth.

During one of her hospital stays, Alexis's nurse introduced her to a clip from a Charlie Brown episode on YouTube. In the episode, called "Why, Charlie Brown, Why?" a character, Janice, also has leukemia, and deals with the same issues as Alexis. "It was amazing to see her so focused on the video—she studied the video over and over. She must have watched it 50 times the first day," said John.

When given the opportunity by the local Make-A-Wish chapter to receive a wish, Alexis brought the video to her parents and said, "I want this." To her parents, their three-year-old daughter was telling them that she wanted to share her story of leukemia through a cartoon that would help spread awareness for childhood cancer—to help others understand what it means to be a cancer patient.

Read More: Living with My Mother's Mental Illness

Alexis's wish touches on a multitude of issues that surround pediatric cancer and the battles children and their families face, which extend far beyond the illness itself and encompass a myriad of barriers to recovery. Children dealing with cancer often experience extreme stress and anxiety, which they do not necessarily acclimatize to or learn to cope with over time. The trauma of childhood cancer can leave survivors with PTSD, and children under the age of three don't usually have the capacity to comprehend even the concept of cancer itself, which means they live in confusion, frustration, and pain.

Image courtesy of Alexis's family.

When describing Alexis's wish to Make-A-Wish and World Famous, the Seattle filmmaking collective that partnered with Make-A-Wish to make the cartoon, Alexis's parents conveyed the importance of creating something that could help other children battling cancer in the same way the Charlie Brown cartoon aided their daughter's mental and emotional wellbeing. Her finished, three-minute-and-40-second cartoon premiered at a local Seattle theater in October, and has since made its way around the web and is already being translated into multiple languages. It's already clear that her message is resonating.

The other aspect of Alexis's wish–to spread awareness for pediatric cancer–is a dream that is both lofty and necessary to improve survival rates and quality of life for children with cancer, which is currently the most common cause of death by disease for children in the US.

Many organizations that fight for continued research and drug development for pediatric cancer are vocal on the issue that only four percent of funds from the tax payer–funded National Cancer Institute are earmarked specifically toward pediatric cancer, even though most common types of pediatric cancers are usually different from the most common types of cancers that affect adults. Part of this is because the number of children diagnosed with cancer every year is miniscule compared to the number of adults. At the same time, adults are at risk of losing fewer years off their lives—when a child dies of cancer, she loses 71 potential years, while an adult loses an average of 17.

In the palm of science in the United States–where we are doing great breakthrough work in a variety of fields–children are oftentimes not considered until much later, even decades later.

But as feeble as that statistic sounds, some argue that funding is only part of the issue. Vickie Buenger's daughter, Erin, was diagnosed with stage 4 neuroblastoma, a common childhood cancer that can arise in several areas of the body, in 2002 at the age of five. "She was in treatment for seven years and died in April of 2009," Buenger said. "She almost finished sixth grade." Buenger is now one of the founding members and president of the Coalition Against Childhood Cancer, a membership organization for childhood cancer organizations and individual advocates.

Read More: Living with an Illness No One Believes In

"In the palm of science in the United States–where we are doing great breakthrough work in a variety of fields–children are oftentimes not considered until much later, even decades later," said Buenger. Even though children are at risk of losing more years of their lives, the majority of industry funding for drug development follows where there is the greatest demand and profitability. This makes the pediatric oncology community severely dependent on funding from the National Cancer Institute and fundraising organizations specific for childhood cancer research and funding.

Image of Alexis courtesy her family.

"We have a drug development system that is much more complex for a variety of reasons," said Buenger. "And the barriers to drug development are partially this money question and partially the decision-making process, the regulatory system, and so on."

When Buenger's daughter relapsed after the first few years of treatment for neuroblastoma, the drugs she received, Etoposide and Cyclophosphamide, were the same drugs that Buenger's grandparents received in the 1970s. They had gone through the FDA approval process for adults in the 1950 and 60s.

Children are continuing to be seen as an afterthought.

Since 1980, there have only been three drugs developed and approved by the FDA for pediatric cancer: Teniposide, approved in 1992; Clofarabine, approved in 2004; and Unituxin, recently approved in March 2015. The approval of Unituxin—a drug to treat children with high-risk neuroblastoma—was hailed as a huge success by the pediatric oncology community, but this is in comparison to the hundreds of drugs developed for adult cancers over the past few decades.

Children are continuing to be seen as an afterthought. "It's not really a matter of the amount of dollars—it's making this a priority so that the industry thinks about children and developing drugs for kids," Buenger said. "[So] that we're a higher priority at the NCI and that we can be loud enough and accurate enough that this isn't job done, mission accomplished."

Survival rates for childhood cancers have improved dramatically over the last couple of decades; in 1975 roughly half of all children diagnosed with cancer survived at least five years, and in the period from 2004 to 2010, survival rates increased to about 80 percent (though roughly 35 percent of children diagnosed with cancer will die within 30 years of diagnosis). Buenger says that their cause is not hopeless. Rather, it's frustrating to be unable to make progress quickly. "One out of every five children dies from their cancer. And when they die, it is excruciatingly ugly and oftentimes painful. For parents to lose children, for brothers and sisters to lose children, it's really awful," she said. "We're trying to elevate our voice and bring real information there that it's not a problem that's solved. If four out of every five is living, that means one out of five is dying."

Image via screenshot of Alexis's video.

Part of the reason survival rates have increased over the past few decades is because generally, pediatric cancer patients are given greater doses of chemotherapy and radiation—and are often given drugs developed for adults within a shorter period of time. While this intense, accelerated form of treatment has significantly lowered mortality rates, it can also cause debilitating and life-altering side effects, including deafness, severe damage to internal organs, other types of cancer, infertility, and so on—all of which survivors of childhood cancer must deal with on top of any psychosocial trauma they endure. "In 1960, we didn't really talk about children with cancer; they just died," said Buenger, who explained that while survival rates are something we should be thankful for, we still need to recognize the high cost that children pay for such intensive treatments.

Today, Alexis is doing well. She finished chemotherapy a year ago and is currently going through occupational therapy to help her strengthen her upper body. Her parents are looking forward to the future. "We hope Alexis's video will impact other pediatric cancer patients like the Charlie Brown video impacted Alexis," said John. "We hope Alexis's video will help other cancer patients stay brave and strong in their battle to beat cancer."

When it comes to the future of pediatric cancer research and awareness, Buenger is hopeful, too. "I think we really want to have the public understand that we need to make children with cancer a higher priority so that we can take advantage of the great science going on in the US," she said. "We can do better as a nation than we have been doing across the board."

The author was a previous employee of Make-A-Wish.