This previously ran in our December 2021 print issue.

When Jillian Sayre was young, she took an interest in ballet–an art of grace, perfection, and poise–when she was forced to trade in her ballet shoes for treatments, travel, and scans at the hands of an unforeseen cancer diagnosis.

Jillian joined millions of other children fighting against the disease, thrown into a world unfamiliar and uncomfortable to most. Every day, roughly 43 kids in the United States are diagnosed with cancer and 23,000 will receive the same news in a single year, according to St. Jude’s. However, Jillian Sayre–now a sophomore at Emmaus High School–has not let the fear of pediatric cancer get to her. 

She turns to the things she loves in her life, motivating her to keep fighting even after relapsing four times, which keeps her journey with cancer going. 

“I guess it’s just hard for a seven year old to react to cancer,” Jillian said. “I just think about the things that make me happy the most and I just try to get through my hard times like that.” 

Her mom, Jodi Sayre, has been right at her side on the hardest of days doing just that, helping her focus on the things that make her happiest no matter how rough the times were. 

“The days that Jillian had ugly chemo and was so sick I would just dance around her,” Jodi said. “We would make jokes, or as she got older we got into the show “Friends”… We just looked for funny, and we looked for smiles. You take it one day at a time. Anything she was interested in the moment, we just make that happy and funny all these years.” 

Initially, doctors did not suspect Jillian was living with cancer. After a long series of headaches and fatigue, her symptoms were thought to just be allergies, and she was only given Zyrtec to cope. Soon, double vision set in, and Jillian was set to do an MRI at the recommendation of her pediatrician to see if she just suffered from migraines. On that Wednesday, she was too weak to even walk in the doors, as her father, Steve Sayre, carried her in and out of the clinic. The three left to go pick up a prescription, when Steve and Jodi received a call: “We have a team of doctors waiting for you.” 

“Our kids have always been [at] well checks and random sick visits to the doctor, we never thought it could be anything super major like what it was,” Jodi said. 

“You’re never prepared for that… That news, that diagnosis–especially when it’s your child–it’s devastating,” Steve said. 

She was found to have medulloblastoma: a type of cancer that damages the nervous system, specifically the cerebellum. It first starts with headaches and double vision, just like Jillian experienced, and moves on to affect balance and coordination as well, according to Mayo Clinic. The National Cancer Institute also notes that central nervous system cancers such as this one are the second most common type of cancer in children, following behind leukemias. Chemotherapy, surgery, and radiation, are some of the treatment methods, however treatment paths vary on a patient-to-patient basis. Many patients, such as Sayre, also turn to clinical trials to treat their cancer.

To receive this treatment, she has been traveling with her parents all over the coast since 2014, including Florida, Washington D.C., and New York. While she is treated locally Lehigh Valley Hospital, Sayre also frequently attends Memorial Sloan Kettering hospital in New York, as a “home base” through the years. At one point the family, including Jodi’s parents, had to pack up and move to Gainesville, FL to take part in a clinical trial, pulling the kids out of school and starting fresh. 

Eventually returning to the Lehigh Valley, the family was issued a warm welcome, as teachers at Willow, where both Jillian and her sister Alexa went, helped them transition back and accommodated them so school was not just another thing to worry about. 

“[Traveling] is not easy with friendships and just even the routine,” Jodi said. “There’s been a lot of great teachers that have helped Jillian pick up where she might have left off… The teachers teachers have made a big impact on us, especially Willow Lane. Every single one of those people are family to us, it was really hard to leave.”

The amount of time spent traveling affects the whole family. While they are fortunate enough to have family living close by, long stays in other states have left no choice but to have Alexa stay behind so she can continue in school. While she essentially grows up alongside their grandparents according to Jillian, their parents try to make every effort possible to spend time with Alexa, as the time between travel and treatments is narrow. Deemed by her parents as an example of a “super sibling,” Alexa supports her sister through their rapidly changing world, even through something as small as a sleepover together in their own house during a patch of rough days. 

Many hospitals do not permit younger siblings to visit, so walking out of the house to go to a different city is hard for the family every time, according to Jodi. 

“Sometimes we only come home for a night and have to do laundry and get packed up for the week to come,” Jodi said. “Time is so limited, especially with Alexa, so that was heartbreaking. It still is any time we have to leave her, it’s never easy, I always cry.” 

One of the most difficult processes for everyone involved is waiting for MRI results, Jillian explains. Because doctors have busy schedules, and conflicting appointments, she has had experiences where it takes seemingly forever to get important results back. According to her, “basically everything revolves around good scans,” which puts the pressure on in the waiting periods. However, her parents show their support the whole way through.

“I know it’s a lot for them, especially with MRI scans,” Jillian said. “We’ve experienced several times where doctors don’t show up to work that day and then we don’t get the scans until two days later… It’s a very stressful process just waiting for that, but my parents they’re awesome for all of their support of me.”

The waiting game is one that is mentally exhausting, but they choose to never think about the what-ifs, and instead choose optimism in a time that may be scary for them. 

“Even in difficult times, you keep the hope and the faith–that and love… [Those are] the three key things we try to keep going as a family,” Steve said. “You’re always hoping that even these tough days will bring better days in the future, and so that’s what we focused on, that’s what we preached.” 

With her ongoing treatment, Jillian has to make sure to take extra precautions around others in fear of transmitted illnesses, which was only enhanced with the onslaught of the pandemic. After strict quarantine for everyone, she still found herself using extra caution when restrictions began to ease up and her peers began to return to normal activities. 

Side effects of her medications have also left Jillian in a different position than most, as she has to think about her own physical limitations with certain things like the COVID-19 vaccine. Her diagnosis hasn’t allowed her to become vaccinated until recently–seven months after it became widely available to high-schoolers. 

“I was just able to get vaccinated a couple of weeks ago,” Jillian said. “I’ve been on treatment, and it’s not compatible with certain medicines, but you’ve got to pick your battles.” 

Her treatments force her to live her life with “limitations.” For Jillian personally, her balance is thrown off and she experiences muscle cramps, however, side effects vary from person to person. Despite the fact that they were taking the same medications, Jillian has experienced times where she felt nauseous, while a friend lost their taste and smell instead, just showing how differently everybody reacts. Side effects also change with changing medications, as switching between each treatment needs time for the body to adjust.

Sports are essentially ruled out due to this, as Jillian is not allowed to participate in any activity with a ball in case a rogue were to hit her head. So, she found an activity that checked all the boxes for her: dance. As a member of That’s Dancin’ School for Dance, she has fallen in love with the art and has stuck with it since she was in first grade. After the effects of her medications set in, she had to leave behind her previous ballet classes, but has found a new love in modern dance which is easier on her body. 

“I can’t really participate in any sport because I still have limitations,” Jillian said. “I lost some of my balance through my medicine… and then also one of the side effects was getting muscle cramps and that was like one of the very first drugs that they assigned me to take… it was obviously hard to point your feet when you get cramps, so I stuck with modern because you don’t point your feet as much and it’s similar.”

There has been a bright side to Jillian’s situation despite all of the struggles posed for her family. With an opportunity to take trips and meet other pediatric cancer patients through a program called Sunshine Kids, Jillian has found a community of her own. 

Sunshine Kids is a non-profit that reaches out to young cancer patients and offers support and opportunities for them to “once again do what kids are meant to do” through group activities and trips, according to their website. They bring their mission to children across the country and have a local program available in the Lehigh Valley Hospital. 

Jillian was recommended by her child-life specialist to go on a trip to Florida with Sunshine Kids with a total group of two girls and two boys. They took the group to Universal Orlando’s two parks, Magic Kingdom at Walt Disney World, and threw a party for the kids on their last day of the trip. As a chance to “spoil” the kids, they made sure to visit as many spots as possible before coming back to the Lehigh Valley. 

This experience was one to remember according to Jillian, and connected her with people that she has become friends with through the program. 

“It was really fun to connect with other teenagers there, and I’ve made very good friends through that and one I still keep in touch with to this day,” Jillian said. “It was nice to know that there are people in Pennsylvania who go through something very similar to what I do, and it was just nice to get away.”

Welcomed into the pediatric cancer community, Jillian has found a group of supporters and peers in the same situation as her. Through her treatment, she has met others who are much younger, going through the same processes as her. So, she tries to help in any way possible, mostly trying to be a friend to those who need it. 

“I have multiple friends that I’ve met through this experience who are also fighters,” Jillian said. “One of my friends, she’s six years old, and she’s been having a really hard time because she just loves her hair, and now it’s falling out… No one should really be going through this, it’s very hard and it’s not an easy journey.”

The Pediatric Cancer Club, or PCC, at Emmaus has also given Jillian a platform to help others like her. 

As a member since her freshman year, she is passionate about raising awareness for those who also suffer from a cancer diagnosis. Joined by another student with a cancer diagnosis, Jillian brings her unique perspective on pediatric cancer to the group through meetings and fundraisers.  

She has cherished her opportunity to be a part of the club in high school, as well as all of the chances it gives her to advocate for others, especially since it is so personal for her.

“It’s really nice to know that the school has something like that that I can relate to,” Jillian said. “They have a lot of members in the school district that are pediatric cancer survivors, fighters, warriors, whatever you want to call them. There’s just so many people in the district.” 

Chemotherapy is the most common form of treatment for pediatric cancer, according to Yale Medicine, and thousands of patients will undergo treatment every year, with sessions possibly lasting hours. While younger kids typically receive small toys or gifts after their treatment, teenagers are often left out of the surprise at the end. Treatment cycles can last for months or even years according to St. Jude’s, and Jillian wanted to bring a bit of joy to the teenage patients, who are typically forgotten about against younger kids. 

Wanting to give back to the hospital, Jillian created a campaign called “Be Brave, Be Strong, BeYOUtiful” for teenage cancer patients at the Lehigh Valley Hospital, collecting gifts and donations to give to them after treatment sessions. Through bingo cards with the PCC, a Red Card Cancer night with the boy’s soccer team, and a number of other donations, she raised money to buy items to donate to the cause. Jillian calls each gift a “smile” and is continuing her campaign again this year, already raising over $1,000 toward the cause.

“There’s really nothing to receive when you’re done with treatment for the day,” Jillian Sayre said. “The little kids, they get something out of the prize box…So, I started a teen prize box where you get small denomination gift cards or pop sockets or fidgets. Whatever just to bring a smile on their face.” 

Emmaus High School athletic trainer Elizabeth “Liz” Del Rae is the advisor of the Pediatric Cancer Club and believes it is important to make sure the she feels special and cared for in the group, as their mission supports other people just like her. 

“I’m a firm believer in that our actions speak louder than your words,” Del Rae said. “Any way that we can show support, whether it be monetary, whether it be a gift, whether it be her mom sending us out of surprise to do a drive by for her birthday during quarantine, we do those, whatever it is, whatever comes up. It’s always different.”

Del Rae also notes Jillian’s passion for her projects and her attitude toward life. She does not stop advocating for others like her, and wants to do anything she can to help. 

“Jillian is a little more vocal and she’s more open about her mission,” Del Rae said. “Her mission is just to help and she’s not shy to say those things.” 

Helping her with her project from the beginning, her parents have seen Jillian’s love of giving blossom, as she takes the extra time to hand-deliver “smiles” to other teens, and think of the perfect Ulta gift card for another patient who just loves makeup. Her mom has witnessed her love for kindness toward other patients show up in unexpected places this year, such as Jillian’s Christmas list.

“If you look at her Christmas list, on there is always to give to the other kids in the clinic,” Jodi said. “She always wants to look for something, or if somebody gives her a gift, she will think ‘maybe somebody would want this even more.’ We always say ‘no, you deserve it, it is happiness for you,’ but she always looks to help others.”

One of Jillian’s biggest supporters from her diagnosis until now has been her child-life specialist at the Lehigh Valley Hospital, Devon Gulick, who has helped her through all of her treatments. 

A child-life specialist focuses on the patients themselves, assisting them with emotional, social, and intellectual aspects of their lives, according to Lehigh Valley Health Network. They dedicate their days to organizing stress relieving activities and exercises for the patients, attempting to comfort them in times of distress or confusion while receiving treatment. Working with the patient’s medical care team, child-life specialists are a friendly face to turn to for the kids, and help them deal with the mental struggles associated with going through the change of a cancer diagnosis. 

Her experience with Gulick has inspired Jillian to want to do the same thing, and be a child-life specialist herself when she gets older.

“She has been so great to me and has influenced me to want to be exactly like her,” Jillian said. “She’s just so nice and welcoming to the kids and knows all of their treatment paths and how to make them smile and explain the hard things that they have to face.”

After four relapses, countless visits, and endless scans, Jillian will continue to take everything day-by-day. Finding ways to manage her symptoms and end her long road with cancer are concerns in her life, but all Jillian is focused on is spreading positivity and continuing to be a “friend to a fighter” and inspiration for younger fighters alongside her. 

“I think when you go through things like this you need those positive voices, positive energy,” Steve said. 

“That’s what established Jillian’s positivity,” Jodi said. “We’ve been a positive family, but Jillian started at day one happy, positive. It was just something she had to go through. I mean, she’s had major brain surgery, but it was just something she had to go through, just like you get a cut on you leg and you put Neosporin and a bandaid. It was just the same to her.” 

With her community and school behind her, Jillian is grateful for all of the support through her journey. 

“It’s nice to feel important, like you have so many people cheering you on, and then it also puts some pressure on you,” Jillian said. “But it’s good to know that so many people have my back and would do anything for me to be happy.”