Finding the Best Cancer Care for Their Daughter

Trusting their gut helped Jessica and Stephen Alwan get the life-saving care their daughter desperately needed.

Lydia, 7, glided down the ski slopes with ease. It was spring 2019 and Lydia, along with her two younger siblings and her parents, was enjoying a ski vacation. Already tall for her age, Lydia was a natural athlete participating in soccer, basketball, and dance.

Back at home, Lydia began to complain about pain in her left leg. “We assumed it was just sore muscles from all the skiing she had done,” says Stephen Alwan, Lydia’s dad.

But her leg pain snowballed. Over the next few weeks, it continued to get worse.

“When it started to wake Lydia up in the middle of the night, that is when we knew something was off,” says Jessica.

Advocating for Their Daughter

Their hunch was right. A visit to the pediatrician, followed by an X-ray, led to the discovery of a lump on Lydia’s femur (thigh bone). They met with an oncologist at a hospital near their home in California. But getting a clear diagnosis was not easy.

It was apparent that the doctors did not have experience treating such a rare cancer. Desperate for answers, the Alwans cast a net to experts throughout California.

After two days of miscommunication and no clear path forward, Stephen and Jessica pulled Lydia out of the hospital and moved their care. “I had to trust my instincts,” she says. “I kept asking questions and kept speaking up for Lydia. No one else was going to.”

Finally, Some Answers

After multiple specialist consultations and a biopsy, Lydia was diagnosed with osteosarcoma. Stephen and Jessica learned that Lydia would need surgery to treat the cancer and retain mobility, making it vital that they find a surgeon they could trust completely. The following week Lydia began treatment at UC Davis Children’s Hospital under the care of renowned orthopedic surgeon R.L. Randall, MD, FACS, and pediatric oncologist Elysia Alvarez, MD, MPH.

“Through all our fact-gathering, we realized that Lydia needed to be at an institution that specialized in treating this type of cancer,” adds Jessica. “It was huge having such an amazing resource so close to home. And Dr. Randall was nothing short of amazing.”

“I had to trust my instincts. I kept asking questions and kept speaking up for Lydia. No one else was going to.”

— Jessica Alwan, Lydia’s mom

An Unexpected Relapse

Lydia underwent chemotherapy and a limb salvage surgery to remove the tumor while allowing for as much leg mobility as possible. But at the end of 2020 — just as Lydia was able to walk again — Lydia relapsed. Another tumor had formed higher up on her femur.

This meant more chemo and a second surgery. To reduce the possibility of another recurrence and preserve as much leg function as possible, Lydia’s surgical team replaced her entire femur with a metal internal prosthesis, removed part of her hip, and replaced her knee.

A Bright Light for Others

Through it all, Lydia kept her positive, bubbly spirit. Whenever she had to spend weeks at a time in the hospital receiving chemo, she made fast friends with the other pediatric patients, nurses, and staff.

The child life therapists were a big part of her treatment journey as well. She even started her own “Lydia’s Toy Joy + Art Cart,” a wagon that she pulled up and down the hospital halls — IV pole in tow — passing out coloring books, crayons, and art supplies to other children.

“It was heartwarming and heartbreaking all at once,” says Jessica. “Despite being unable to walk on her own and enduring chemo, all she wanted to do was help other kids.”

Living in the Moment

To look at Lydia today, you would not think that she has battled cancer — twice. Now 11, Lydia does not dwell on it much. She is much more interested in music, singing in her school vocal corps, and decorating her room for the upcoming holidays.

“It is not what defines her. She is fearless. She is very much about living in the moment, as every child should be.”

Click here to make a donation to the Team Lydia Osteosarcoma Science Fund at the Osteosarcoma Institute to help fund the most promising osteosarcoma clinical trials and science.

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