Being a teenager is hard. It’s even harder when you start having back, hip, and knee pain, and no one knows why. And it’s harder still when you are diagnosed with a tumor and bone cancer, resulting in chemotherapy…and leg amputation.
But Elianna – who is known for her happiness – wasn’t going to let it change her.
“Staying positive made a difference, for me and for everyone else,” Elianna said.
When Elianna injured her knee, she started experiencing pain in other places. Doctors could not find a cause, and said “such side effects are common as bodies overcompensate.” Elianna pushed through and continued physical therapy.
But only a few nights later, she woke up…screaming and crying in excruciating pain.
“The next week was a blur,” said Deanna, Elianna’s mom.
The family was rushed to the Emergency Room and the doctors and nurses began tests. They discovered a softball-sized mass in Elianna’s hip, which extended to her spine. Within one hour, they were transferred to the children’s hospital. The diagnosis: osteosarcoma, a very rare malignant bone cancer that primarily affects children and young adults. It is treatable, but a lot depends on whether the disease is isolated or has spread.
“One day she was experiencing some pain in her knee, and the next thing we knew, she was getting cancer treatment,” Deanna said. “It was devastating.”
While there was some speculation that surgery could completely resolve the issue, a second opinion from a Mayo Clinic doctor who specializes in Elianna’s condition painted her situation in a much more urgent light. People with Elianna’s condition have a survival rate less than 25 percent…unless they amputate the leg. Amputation raises the survival rate to more than 75 percent, and can result in a much higher quality of life.
“I appreciated the fact that he was honest and thorough,” said Deanna.
“The doctor gave me hope and inspiration,” Elianna said. “I trust him.”
Elianna’s initial visit was one week filled with appointments, followed by a three-day, three-part surgery. The tumor was removed successfully, but her incision was not healing, and she developed other issues. Over the past year, Elianna has had nine surgeries, in addition to other procedures and physical therapy. And more surgeries are possible.
Through it all, she remains positive.
“This is hard, and life is different,” said Deanna. “But we would rather she lose a limb…than we lose her.”
The lengthy process meant the family would be more than 12 hours from home for more than 100 nights over the course of four visits to Rochester. The family started planning for months in a hotel; instead, they were referred to the Ronald McDonald House.
“It was a stressful situation,” said Washington, Elianna’s stepdad. “We were wondering if—as a family—we would be separated. How would we manage? Elianna is sick, her sister, Anaiah, has her own needs; we should be together.”
“The House is truly a blessing,” Deanna said.
Aside from a guest room that has enough space for a family of four, Deanna and Washington were surprised by everything the House offers. Access to laundry and fresh food, coffee and exercise spaces, kitchens and video games—as well as a plethora of activities—made their stay not only tolerable, but enjoyable.
“Families are making dinner and folding laundry,” said Washington. “We are not from the same place, and we do not always speak the same language, but we support each other.”
“The House provides necessities, and so much more,” Deanna said. “Painting and pottery classes, games and activities, holiday celebrations…”
“Those things make a difficult situation easier,” she said.
“It’s hard to identify the most important thing,” he said. “It all makes a huge difference.”
The family was in the House over Christmas, and missed a large family celebration back home. But between the Snowflake Room (a gift-giving space for parents and kids), decorations, a visit from Santa, and a home-cooked meal…it made them feel “closer to home.”
And Deanna and Washington had their first date since Elianna’s diagnosis—dinner in the Community Room and their song, sung by a volunteer serving that night.
“I started crying,” said Deanna. “That moment meant so much.”
And everything the House offers is available at no cost to the children and families, because of donations from individuals, businesses, and organizations.
“The burden that is lifted off of the families…” Washington said. “How can you explain it on such a large scale? There are no words to express our gratitude.”
“It makes such a huge impact – bigger than you can possibly imagine,” said Deanna.
“The donations mean so much to so many people,” he said.
Volunteers help make the House a home, cleaning and disinfecting common spaces, and participating in evening activities and outings.
“Everyone who volunteers at the House has a genuine and pure heart,” said Deanna. “They simply love others.”
“They want to be here,” Washington said.
The family has made forever friends, both at the House and in Rochester. The doctor introduced Elianna to a woman on a similar medical journey—after having her leg amputated, she is living a full life, as a Paralympian, college graduate, wife, and traveler.
“She showed us…it isn’t the end,” Elianna said.
Elianna also said she would not be alive without her mom and dad, and insisted her medical journey has been harder on her family, especially her parents.
“They fight for me,” she said.
“Never give up,” said Washington. “Project your child’s voice.”
“Advocate for your child,” Deanna said. “Ask the question. Find the answer. Ask again. “There is nothing more important.”
“And our faith has kept us strong.”
Aside from Mayo Clinic and the Ronald McDonald House, the family is working with Limb Lab to find the best solution for Elianna. Their experience has been “incredible” and “amazing,” per Elianna and Deanna, and “has not felt generic.”
Elianna’s journey is far from over. She will need doctor appointments and prosthetic adjustments periodically for the rest of her life, but especially over the next five years.
“But it’s good,” she said. “I like coming here. I can see my friends.”
