Help Rosalee Fight Cancer

Hi, my name is Kirk Nelson, and I am the father of Rosalee Jean Nelson.

I never imagined I would be writing something like this.

Our daughter, Rosalee—“Rosa” to those who know her—is only 21 years old, and she is facing a battle that no young person should ever have to face. She is fighting multiple cancers, and because of a recent diagnosis of Li-Fraumeni syndrome, she will likely face an increased risk of cancer and ongoing medical challenges throughout her life.

Asking for help is incredibly difficult for our family. We have always tried to take care of ourselves and those around us. But so many kind and generous people have offered to help us in any way they can. This is why we decided to start the GoFundMe. Today, I am setting my pride aside because my daughter's life is worth everything.

Rosa's Story

On May 23th, Rosa suddenly collapsed from a seizure. She was rushed to the University of Alberta Hospital by ambulance. Her seizures didn't stop until she was placed in a medically induced coma for three days, and was intubated to help her breathe. Doctors discovered an aggressive tumor in her brain that had caused the seizures.

She eventually recovered enough to undergo surgery while taking a high dose of medication to control the seizures.

On June 1st, Rosa underwent brain surgery. Surgeons removed the tumor, but our family was devastated to learn that it was highly malignant. It was given a Grade 3/4, and unfortunately, it did not match any current targeted therapies.

While Rosa was recovering, another devastating discovery was made.

A lump on her leg was found to be a Malignant Peripheral Nerve Sheath Tumor (MPNST)—a highly dangerous form of sarcoma beneath her skin.

On July 30th, Rosa underwent surgery to have the tumor removed from her leg. Thankfully, she is recovering well from that surgery.

We were devastated and bewildered. How could our healthy 21-year-old daughter have two different cancers?

A Rare Genetic Diagnosis

A few weeks later, we received another life-changing diagnosis: Rosa has Li-Fraumeni syndrome, a rare genetic condition that greatly increases a person's risk of developing cancer throughout their lifetime.

Li-Fraumeni syndrome involves changes to the TP53 gene, an important part of the body's natural defense against cancer. This diagnosis changes virtually everything about Rosa's future medical care.

She will need consistent and thorough cancer screening throughout her lifetime, including examinations of different body systems approximately every three months through intensive surveillance called the Toronto Protocol. The goal is to find any future tumors as early as possible, when they may be most treatable.

It also makes treatment decisions much more complicated and not yet available in Canada. Traditional radiation can be particularly concerning for people with Li-Fraumeni syndrome because of the increased risk of developing additional cancers from radiation exposure. Doctors therefore have to carefully consider treatment options that provide the best chance of controlling Rosa's current cancer while minimizing unnecessary exposure to healthy tissue.

Proton radiation therapy has become such an important option for Rosa. Proton therapy can more precisely target a tumor and significantly reduce radiation exposure to surrounding healthy tissue compared with conventional radiation in appropriate situations.

Unfortunately, proton radiation therapy is not currently available in Alberta or Canada.

Other potentially important and costly treatments may also become options for Rosa in the future, including Tumor Treating Fields and immunotherapy, depending on how her cancer responds and what her medical team recommends.

Florida and the Road Ahead

Through Alberta's contract with UF Health, Rosa is now in Jacksonville, Florida receiving proton therapy and chemotherapy. Her proton therapy began on August 13th, and our family expects to be in Florida for approximately two to three months.

My wife and I have traveled with Rosa to support her through treatment and help her navigate living away from home.

Before coming to Florida, we also spent much of the summer traveling to and staying in Edmonton from May through the end of July for Rosa's surgeries, appointments, treatment, and recovery.

Right now, recovery is a full-time job for Rosa.

When we return home, she will resume chemotherapy after a break. She will then need to find a place to live in Edmonton and begin rebuilding her life around her new reality with Li-Fraumeni syndrome.

There is a lot of uncertainty ahead.

But there is also hope.

Rosa is a fighter.

How Your Support Will Help

We are asking for help because fighting cancer is expensive, and Rosa's journey will not end when this round of treatment is over.

The funds raised will help our family with:

-Proton radiation, chemotherapy, and other specialized therapies

-Transportation, living expenses and accommodation associated with receiving treatment away from home. Alberta covers treatment and Rosa's airfare alone.

-Medical expenses not covered by provincial healthcare

-Lost income as Rosa is unable to work.

-The costs associated with helping Rosa transition back to living independently and putting aside a fund for future treatments.

-Ongoing expenses related to her lifetime cancer surveillance and treatment

Rosa was building a career she loved. She was working toward becoming a hairstylist, developing a strong clientele, and dreaming about owning her own salon.

Now, at 21, she is learning how to rebuild her life around cancer.

We want to give her the opportunity to do exactly that.

We want Rosa to have a chance to live the future she was building before cancer interrupted it.

Meet Rosa

Rosa is a creative force. She is independent, hardworking, compassionate, and incredibly talented. She had built a solid clientele as a hairstylist while also developing her talents as a social media marketer.

She was in the final year of her hairstyling apprenticeship when she suddenly collapsed from numerous seizures.

Before cancer changed everything, Rosa was building a career and dreaming about the future. She dreamed of eventually owning her own salon. Today, that dream is on hold while she fights for her health and tries to figure out what her next chapter might look like.

We don't know exactly what that future will be. Perhaps she will one day open or join a toxin-free salon or barber shop where she can continue doing what she loves in an environment that is safer for her. Whatever path she chooses, we know Rosa is talented, determined, and capable of achieving incredible things.

The sky is the limit for her. We just need to help her get there.

If you are able to donate, no matter the amount, our family will be deeply and sincerely grateful. Every contribution will help ease the enormous financial burden that comes with Rosa's treatment and give her and our family the ability to focus on what matters most—helping Rosa get well.

If you are unable to give financially, we completely understand. Sharing Rosa's story may be just as valuable. Please consider sharing this fundraiser with your friends, family, coworkers, and community. And most importantly, please keep Rosa in your thoughts and prayers.

We have learned through this experience that we are not alone. The kindness, compassion, prayers, messages, and generosity we have received have carried our family through some of the darkest days we have ever experienced.

From the bottom of our hearts, thank you.

Thank you for helping Rosa fight.

And thank you for giving us hope when we need it most.

With gratitude,

Kirk and Kareen Nelson