In a rare moment of embarrassment, 4-year-old, Lily Wilson, sticks out her tongue and covers her face with her arm as she walks into a large crowd standing outside her home. Wearing purple T-shirts with the words “Lily Strong” on the front, Lily’s family and friends gathered for the celebration of this special moment in Lily’s life. The outgoing, high-spirited, little girl from the small town of Upton, Wyo. has won over the hearts of everyone from high school students to strangers on her journey through an experience no one knew if she would survive.
Mikayla and Pete Wilson had been married for almost three years when they decided to move from Sioux Falls, S.D., to Upton. Pete took a job as principal of the high school and Mikayla was hired to teach middle school social studies. They were just settling into Upton with their 16-month-old daughter, Lily, when Mikayla noticed a bump on the inside of Lily’s nose.
“I was rocking Lily to sleep when I saw what looked almost like a pimple on the inside of her nose. It was rock hard and I thought that was strange, so Pete and I took her to the emergency room that night,” said Mikayla.
“It was really by chance that we decided to take her in, the EMT we spoke to told us he thought it was a tumor and to go to Mayo right away.”
The Wilson’s immediately got in their car and started to the 10 hour journey from Upton to Rochester, Minn., en route to the Mayo Clinic.
They arrived at Mayo around 3 a.m. on a Monday morning. The Wilsons were told at 6 a.m. the doctors would not be able to see Lily until Wednesday. Because Lily was so young, she had to be put under anesthesia to be scanned. No anesthesiologists were available for two days. “I asked them, ‘What do we have to do?,’ We’ll sit in the waiting room if we have to. And so that’s what we did,” said Mikayla. An anesthesiologist did manage to squeeze Lily in on Tuesday, and by Friday Lily was diagnosed with Rhabdomyosarcoma.
16 months to 2 years
Rhabdomyosarcoma is a cancerous tumor of the muscles that are attached to the bones. Lily’s tumor was inside her nose, a common site for Rhabdomyosarcoma. According to the American Cancer Society, Rhabdomyosarcoma accounts for about 3 percent of all childhood cancers, and there are about 350 new cases that occur each year in the United States.
Lily was diagnosed in Stage 1, Group 1. This was good news for the Wilsons. Lily’s tumor started in a favorable area and had not spread to nearby lymph nodes or other parts of her body. Her tumor was removed by surgery on Dec. 30, 2010, two weeks after her diagnosis.
After the tumor was removed, the Wilsons felt as though other option than to start a 43-week chemotherapy treatment and they ultimately decided on radiation as well. “Deciding on whether or not to do radiation was the hardest decision we had to make,” said Mikayla. “It came down to knowing her chances of surviving rhabdomayo[sarcoma] again were very slim, and it was worth the chance of her developing a secondary cancer later on from the radiation, that she could hopefully beat.”
Lily’s chemotherapy treatments were all done in Sioux Falls, S.D. Every three weeks Lily had to go in for a three-day, overnight treatment consisting of three different types of medicines. In between her three-week treatments, Lily had to go in once a week for a single, two-hour treatment.
Both Mikayla and Pete continued to work during this process. They made the six-hour drive to Sioux Falls every weekend, and stayed with good friends. “They [Pete and Mikayla’s close friends] treated Lily like their own child. She had toys and her own room with Dora stickers on the wall,” said Mikayla. “It was so nice of them to bring us in like that.”
If the Wilsons did not stay with friends, they would often make the drive back to Upton in a single day. Lily often got sick on these road trips, and was mostly fed formula because of the nausea caused by the chemo.For radiation treatments, Lily and Mikayla traveled to Houston. Lily received Proton radiation, a relatively new form of radiation, which pinpoints exactly where the laser should go and can be pulled back out. This causes less damage and does not let the radiation spread throughout her face.
Mikayla stayed at the Ronald McDonald house in Houston for a month while Lily was receiving her treatments. Over the course of the month, many friends and family members went to Houston to support Lily and Mikayla during this emotional time. “Being in Houston was the worst part, for me, of the entire experience. I didn’t know anyone there, I had no car, and I couldn’t even run to Wal-Mart to get Lily diapers,” stated Mikayla. “Pete couldn’t come down because he couldn’t leave school and that was very hard for me, so he called my family and asked them to be with me there. I was so thankful for that.”
The Wilsons also received help in other ways. Upton Schools organized an auction to raise money for Lily; “Love for Lily” raised around $28,000. Also helping Lily, was Pete and Mikayla’s former schools of employment. Mikayla’s former school raised $700, which was matched by Thrivent Financial totaling $1,400. There was another auction held at multiple basketball games at the school Pete previously taught at, along with an auction held in Mikayla’s hometown, Spearfish, S.D., that raised around $32,000.
The national Children’s Miracle Network helped donate formula, diapers and other necessitates. The regional Children’s Miracle Network out of Rapid City, S.D. helped pay for gas and travel expenses. Also, when flights were available, a program called “Angel Flight” provided two free tickets to Sioux Falls. The Wilson’s are eligible receive “Angel Flight” tickets whenever traveling for check-ups and appointments in Houston or Rochester.
Because Mikayla continued to work while Lily was going through this experience, she was babysat often by local women. Dormie Materi became friends with the Wilsons when they arrived in Upton. Materi remembers playing with Lily.
“When I would watch Lily, she would get out her doctor kit and would practice using the different instruments on me. She knew what every instrument was called and what it was for. She would even check my blood pressure,” Materi remarked.
Materi’s favorite quality in Lily is her spunk and although she knows she did not have a normal childhood, she thinks Lily will do just fine adjusting to being a normal kid.
“Lily is outgoing, social, active, and you can just tell she will grow up and have a ton of confidence,” added Materi.
2 to 4 years
Just like many preschool girls, Lily had a princess-themed birthday party for her third birthday. A couple middle school girls came dressed as Cinderella, Tinkerbell and Belle. Lily screamed and giggled as she saw them, but does not recognize the girls as a few of her babysitters.
Lily tells everyone to look at her pretty hair as she drags her baby brother, Landry, around the house. Her dirty blonde curls are a sign that her battle with cancer is now over. She has a scar from a feeding tube and thinks that anyone in a hospital has cancer, but she shows no signs of fear.
Lily’s current struggle is one for attention. With a new brother and less hospital time, she is having a hard time adjusting to receiving less attention. “For a year, the world revolved around Lily,” said Mikayla. “Family, friends, nurses, and even strangers all focused on Lily. Now, as parents, we have to find a happy-medium between giving her too much attention and not enough.”
Lily tells everyone, including strangers, that she wants her mom’s new baby to be a girl.
“I think it’s going to be a girl. If it’s not, I’m going to take my magic wand and change it to a girl,” explained Lily.
Mikayla, seven months pregnant with her third child, laughed at this remark by Lily. She says Lily has taught her how to stay positive and to stay strong, no matter what. “We did what we had to do, and we got through it. I sometimes look back now and wonder how we did it, but then I think we could do it all over again if we had to,” said Mikayla.
The Wilson’s hope Lily can stay healthy. If she can make it three more years without the cancer returning, she won’t have to worry about anything except what she will wear on her first day of school.“I hope she uses her cancer as inspiration. I want it to push her forward and inspire her to do great things,” added Mikayla.
After getting through the crowd of purple, Lily forgets all about her family and friends when she sees the big surprise. She screams and giggles as she jumps onto the huge play-set with three slides sitting in her backyard.
The Make-A-Wish foundation provided Lily with the play-set after she made a “wish” for a big play-set with exactly three slides. The Wilson’s wanted to keep the play-set a secret from Lily and thought throwing a revealing party would be a great way to celebrate Lily’s winning battle against cancer. Red-faced with curly, messy hair, Lily seems like an average four-year-old girl. But to anyone who knows Lily she is brave, strong and anything but average.