“All I can think of is how freaking lucky I am.”

15-year-old Nathalia Hawley, or “Nat” as she goes by, sits in her “home away from home” with her mom Katy, a small two bedroom apartment typically used for student housing on the University of Minnesota campus. It’s more than four hours from their actual home, in Duluth, but a convenient five-minute shuttle ride from University of Minnesota Masonic Children’s Hospital where she is receiving treatment.

She smiles, in between bites of french toast, an afternoon snack, cut into bite sized pieces on a plate balanced on her lap. She glances around at the piles of boxes filling the apartment’s small hallway, packed-in around her wheelchair in which she sits, and peers toward the hallway, where more boxes sit, many filled to the brim with letters from people all over the world, for her.

“The letters say things like we think about you all the time, we keep you in our prayers. And all I can think about is how thankful I am for those people. I am incredibly blessed. I seriously have to be one of the luckiest girls in the entire world,” Nat says.

It’s all in response to her decision to publicly share her journey- something she’s actually been doing since she was first diagnosed with osteosarcoma at 12 years old, back in July of 2016.

“I thought, if I share my story, I hope it can raise as much awareness as possible. So that people can donate and we can get more research and clinical trials out there,” explained Nat. “People shouldn’t have to deal with all that horribleness, with the sickness, with the prognosis. I don’t ever want another kid to hear their cancer has spread or is growing.”

The research is actually what brings Nat back to Minnesota. Not only is she spreading the word about its importance, but she is involved in her third clinical trial. A decision she says she made in order to help researchers, physicians and patients get the answers they need.

From the bench to clinic

Osteosarcoma is a bone cancer that can occur in any bone in the body. According to Katy, Nat’s mom, for Nat it started in her right femur, and eventually spread to her lungs, and then to other parts of her body. In three years, she has received the news multiple times that her cancer has spread, grown and returned. To fight it, she has had seven surgeries, almost a dozen chemotherapy treatments, and been a part of three clinical trials total. She has recently been told her cancer is terminal, and is receiving palliative care.

Cancer cells spread through the bloodstream. Experts say approximately 20 percent of people with osteosarcoma have visible metastatic disease when they are first diagnosed, which means you can see it in more than one place. However, it is believed that newly diagnosed osteosarcoma has micro metastatic disease; there are cells circulating that make it possible for the disease to spread at any time to different parts of the body. For reasons that are not yet known, the most common spots for cancer to spread is the lungs. There is a lot that is not yet known about osteosarcoma, which is a very complicated disease.

“That is why research is so important,” stressed Nat’s pediatric oncologist Brenda Weigel, MD, MSc, Professor in the Department of Pediatrics, Division Director of Pediatric Hematology and Oncology of the Medical School and Masonic Cancer Center member. “Over the years, the outcome for children and adolescents with osteosarcoma has not really improved much because we lack an understanding of the tumor cells and the biology of the tumor.”

In recent years, however, there have been some promising developments in this area of research, including at the University of Minnesota Medical School. One of the goals of the University’s osteosarcoma research program is to gain a much greater understanding of the potential causes of osteosarcoma. To do that, researchers and physicians like Weigel have to study populations or people that have osteosarcoma- people like Nat. But it all starts in the lab.

Branden Moriarity, PhD, Assistant Professor in the Department of Pediatrics, at the Medical School, and Masonic Cancer Center member and his lab recently found that there is a marker on osteosarcoma cells called SEMA4D that is overexpressed in osteosarcoma cells. This discovery led to a new phase I clinical trial started in January of this year, evaluating SEMA4D in children with cancer and then more specifically in children with osteosarcoma.

That is the drug Nat is getting now.

“It really takes courage and hope,” said Weigel of patients in early stage trials like this, “and while we certainly hope they will benefit, the future benefit is if we gain an understanding of the new drug or new therapy and develop better ways of using it. That is the only way that we, as a profession, can really move these therapies forward.”

Weigel points out that advances like this are only made because of the work of a huge team- from the scientists in the lab, to the people who can bring those findings to the clinic and develop the clinical trials, to the teams who care for patients and families, to the partnerships of patients and families themselves.

“They are the reason we do the research, and the reason we want to drive the field to be able to help people like Nat and others, so that someday they will never have to go through some of the things that children and adolescents today do in the treatment of osteosarcoma,” said Weigel.

A valuable lesson

“It’s the research that gives us hope for another day and the future, and it works hand-in-hand with the present, which is patient care,” said Pediatric Resident Vishal Naik.

Vishal first met Nat when she was inpatient, in 2018.

“What struck me the most about Nat was her interest in the field of science and medicine. Despite all that she has been through she absolutely loves anatomy and biology and wants to know how things work,” said Vishal.

Through daily conversations Vishal quickly learned that Nat wanted to be a doctor, and got to see firsthand just how deep that understanding and appreciation of clinical care and research really went with her. Whether it was explaining how the human heart worked, or why certain medications impacted her the way they did, or how to read an EKG, extra education became part of her care.

Soon, he started to realize something- he wasn’t the one teaching her- she had been teaching him.

“I started to realize how important it was to take that extra step as a physician or provider- really develop that alliance and relationship with a patient that not only benefits them but benefits me in terms of how to better understand the patient and how things are affecting them. It’s something I am going to carry with me absolutely forever.”

A life changing legacy

“I became a hospital volunteer because I really wanted to have an impact on the kids in the hospital in some way; in any way I could,” said Thomas Schulz.

Schulz went to the University of Minnesota and received a degree in Nutritional Sciences. In his spare time, he volunteers at the University of Minnesota Medical Center and University of Minnesota Masonic Children’s Hospital. That’s when he met Nat.

“I was going room to room, basically trying to find someone to hang out with, and I walked into Nat’s room,” remembered Tom. “My first impression was I wasn’t really sure why she was there. She had a decent amount of energy, and she was very happy and very bright.”

Like many others, Tom was drawn to Nat’s passion for spreading awareness of her disease and the research for treatments for it.

“I think it’s incredible that she takes the time and effort to do that. It’s inspiring,” said Tom. “It made me realize you can be dealt a bad hand of cards. It’s what you do with those cards that makes a difference.”

Nat’s drive to make a difference has inspired Tom. He is now applying to be a physician’s assistant, with a focus in oncology.

“She has had a huge impact in me. I don’t think I would have chosen this if I hadn’t met her.” But one thing he is certain: “I think even if she hadn’t been dealt the sort of cards she was, she still would have found a way to impact the world.”