Family creates app with authors, illustrators to help pediatric cancer patients get through chemo
From the moment Jenna Brown gave birth to her daughter Sydney in February 2020, she called her "Love."
As with most new parents, Jenna and her husband, Jeremy, of Oswego knew life was about to be very different. They just didn't realize how different.
When she was 2 months old, the couple noticed a lump on the side of Sydney's neck. They were sent to see an endocrinologist and an ENT. After several scans, the ENT determined it was just excess tissue, but it needed to be removed because it was located where her carotid artery split.
Since the artery supplies essential oxygen to the brain and head, the doctor thought it best to remove the tissue.
"The doctor said they removed it with one fell swoop," Jenna said.
Sydney had to stay at Loyola University Medical Center for a week, and the Browns thought the worst was over. Until a floor doctor came into their room on June 23, 2020, and asked what they knew about neuroblastoma.
Turns out, Sydney's tumor was malignant.
"I didn't know what he was talking about," Jenna said. "I told him he was in the wrong room."
The doctor informed Jenna that an oncologist would be in to talk to them about the diagnosis.
"It took a while for it all to register," she said. "I called my parents and told them, 'I think they just told me Sydney has cancer.' "
What followed included more scans and urine samples every three weeks to keep track of her blood cell counts. At first, Sydney's numbers were OK, but then they started to go up. That's when her doctor decided it would be best to take action.
The Browns were told their young daughter would be going through eight rounds of chemotherapy at just 8 months old.
"Here, I had this little baby and all I could think about is how sick she would be with chemo," Jenna said. "I thought about how adults reacted to it. But they told me that babies handle it differently."
Turns out, they were right.
"She's a trip," Jenna said. "She would spend 9- to 10-hour days at chemo and still be all smiles all the time. She didn't want to nap because she wanted to see the nurses. I was losing my mind, but she was just so happy and content the whole time. I can't even begin to tell you how incredible the staff was with her."
Because of COVID-19, friends and family couldn't visit, so Sydney knew those nurses better than anyone else.
"One time a nurse asked if she could take her and walk her around the floor to give me a break. Here was the little pageant queen being carried around and waving hi to everyone," Jenna laughed.
But it was those simple moments that helped the Browns get through the tough moments.
"Just seeing her being a kid and doing what babies do. The whole reason I survived all of this was her smiling, laughing, playing with the nurses. I thought, 'we can do this!' "
Escape in a book
But that doesn't mean the days got any easier, especially emotionally.
"There were days I was OK, and we were always OK in front of her," Jenna said. "But then there were days that I would get in the shower and I would cry. I was mad that this happened and sad that she was missing out on so many things. But then I would feel guilty. My kid was going to be OK. Other families don't always get that. Who was I to feel this way?"
Friends and family told her it was natural to feel the way she did and to have her emotions, but not to wallow in it.
One friend asked her when she felt most relaxed and at peace. She said when she and Sydney are sitting down to read a book.
"It was just the escapism of the book," said Jenna, a certified reading specialist, most recently with Aurora East School District 131. "For a few minutes I wasn't thinking about appointments or packing for the hospital."
And that's when it clicked.
What if she could give families just a few minutes of worry-free time with their kids?
And that's when Love Smiles was born.
Love Smiles, a 501(c)(3) nonprofit organization, is dedicated to bringing awareness to pediatric cancer while providing moments of peace to families who are faced with the disease. The nonprofit partners with authors and publishers to share their stories and activities with pediatric cancer patients.
Families can download an app, available in both the Apple and Google app stores, and have access to videos of authors reading their books or illustrators teaching kids how to draw a character, as well as other activities.
When the idea first came to Jenna, she thought, "Am I out of my mind? Is this too big?"
It turns out, with a little help from her friends and authors she knows, the dream became a reality.
She started the organization in October 2020, but the app and website launched on June 23, 2021, a year to the day after Sydney was diagnosed.
"It's a good remembrance from where we started to where we are now," Jenna said.
In just a short time, the website, love-smiles.org/, and the app have a cache of authors and illustrators on board to help children while away the hours in the hospital.
The app also allows parents and kids to share their stories to spread awareness of pediatric cancer, which is Jenna's favorite part of the app.
"Families get to share their stories and what they went through. People always ask, 'what can I do,' but during COVID no one can do anything. This is what we can do. It's a hard journey, and the more people around you the better."
Finding funding to keep the app going has proved a little difficult. Jenna says grants are hard to come by because they fall into various categories and cater to different age groups. While they do fundraising activities, like trivia nights and an upcoming walk in June, she also hopes to gain more corporate sponsorships.
Funds she raises go toward updating the app and website, as well as Comfort Kits, which include copies of the books by authors they work with, as well as coloring books, crayons, sketch pads and other age-appropriate items.
"We cater to all ages because all ages go through it. We want them to be able to watch the video, read a book or draw and color to make the time in chemo go by faster," Jenna said. "We want to give them as many relaxing opportunities as we can."
So far, Love Smiles has partnered with Loyola, UIC, Edward-Elmhurst Healthcare and UMass Memorial in Massachusetts.
The hope is to take it nationwide or even global to help bring a smile to the faces of kids fighting a terrible disease.
"The smile on her face got everyone through this," Jenna said. "It's been a crazy, really beautiful journey."
• • •
To celebrate Sydney's birthday on Feb. 21, Love Smiles is sponsoring a Give Back event. Through February, the organization is asking people to create encouraging cards for pediatric cancer patients and their parents, which will be added to the Comfort Kits. Send cards to: Thrivent, Attn.: Kim Burbank, 16612 W. 159th St., Unit 201-LL, Lockport, IL 60441.
To make other donations, or to learn more about Love Smiles and upcoming fundraisers, visit www.love-smiles.org.