At Coolibar, our mission is everything. It’s the essence of our DNA, which is why we partner with organizations working hard to save lives like the Melanoma Research Foundation (MRF). In addition to raising funding for life-saving research and science, their dedication to patients and caregivers is absolutely incredible. The endless, first-hand testimonials we’ve gotten say it all…
“When I needed answers and had no idea where to start, the MRF was there.”
“We’re so grateful for the support the MRF has given our family.”
“The MRF saved my life.”
This is why we became the Official Apparel Partner of the MRF in 2020. While their team works to fund life-saving research, treatments and education, we can help by protecting everyone under the sun with UPF 50+ clothing. In 2020 alone, we’ve gifted thousands of shirts to virtual Miles for Melanoma participants, outfitted every wonderful kiddo at the 2020 Pediatric Melanoma Summit, offered up raffle items to raise funds at Virtual Galas and sent care packages to patients and families needing more support this year. It’s an incredible partnership that truly puts people first.
2020 also marked the third year of This is Brave, our annual T-shirt fundraiser for the MRF. It all began when a young girl here in Minnesota stepped up and reminded us all of the importance of advocating for and supporting individuals with skin cancer. When Quinn told her brother Graham to Be Brave while battling pediatric melanoma, she was reminding us all that we can do this! We can battle through and no matter what the outcome might be, we’re better when we can Be Brave together.
One in five Americans will develop skin cancer in their lifetime whether there is a pandemic or not. #CancerHasNoCurve. The good news is the MRF and the greater melanoma community continue to be strong and active. Patients and advocates have done everything from taking the message of prevention and protection cross-country, to telling a neighbor to care for their skin and get checked. You are amazing. Everything you’re doing counts!
We’re taking some time out this November to remind everyone of the important work of the Melanoma Research Foundation, and to continue to help them fundraise and support their community. 2020 has been a year full of …surprises. But cancer does not take a break, and neither will the MRF.
If you’re able, we’re asking you to support skin cancer awareness and the MRF. Here is how you can help:
Read the awe-inspiring stories of our Brave warriors and share them with your friends and family. Awareness can save lives!
Learn more about the MRF and the work it does to save lives.
Consider donating to the MRF. They’ve created wonderful virtual programs to ensure that the funding for research and education remains strong.
Purchase a 2020 This is Brave UPF 50+ T-Shirt or our Limited Edition Be Brave Umbrella for yourself or send it to someone as a sun-safe gift that gives. The proceeds go directly to the MRF.
Thank you for all that you do and remember…together we can BE BRAVE!
There are various forms of advocacy. When it comes to working with lawmakers on federal, state and local levels to advocate for new and innovative science, and policies and regulations to benefit the melanoma community, the Melanoma Research Foundation (MRF) leads the charge. They’ve helped increase melanoma research funding for all types of melanoma—including mucosal, ocular and pediatric—while improving access to quality care and skin cancer prevention activities. Some of its most notable accomplishments include preserving the indoor tanning tax, age restricting indoor tanning, and pushing for access to sunscreen in schools.
We are proud to be a part of that. For the past two years, a member of the Coolibar team has traveled to Washington D.C. to share their personal story and experience with melanoma. It’s an honor to join individuals from across the country to speak to our state representatives about the importance of skin cancer awareness and funding. Together, we’ve helped allocate millions of dollars to life-saving research. We welcome everyone with a skin cancer story to consider joining the MRF in Washington D.C. when we can all come together again. You can learn more here: https://melanoma.org/how-to-help/advocate/
The Melanoma Research Foundation (MRF) is the leading non-profit organization dedicated to eradicating melanoma by accelerating medical research. They are committed to advancing a broad scientific agenda across the disciplines of prevention, diagnosis and treatment.
From 1998 to 2020 the MRF grant program awarded 200 competitive, peer-reviewed programs across 75 institutions totally more than $18.8 million dollars. And they did that with your help!
The MRF distributes its research support amongst a vast array of individuals ranging from medical students all the way up to senior investigative teams. And they don’t limit it to cutaneous melanoma (the kind most are familiar with), they also fund rare subtypes including uveal, mucosal and pediatric melanoma.
There are five types of grants that YOU are helping fund when you support the MRF…
“So many of the patients that reach out to us are just looking for a new answer. A new path forward through their diagnosis. Being tuned into cutting-edge science and being connected to leading researchers allows us to point them down paths to information and clinical trials that ARE saving lives.”
Remember, every dollar utilized to fund research and science goes toward saving lives and giving people hope. TOGETHER WE WILL!
One of the most important messages the Melanoma Research Foundation shares is:
“You Are Not Alone.”
Melanoma is diagnosed in more than 196,000 Americans each year, and the numbers continue to rise across all races, ages and genders. Anyone can develop skin cancer. One of the MRF’s key roles is to support newly diagnosed patients, survivors and caregivers.
Doug Brodman, current board member, turned to the MRF as his first source for information and help when he was first diagnosed:
“Our family realized we needed to educate ourselves about this disease in order to better understand and prepare for the battle ahead. That’s when we discovered the Melanoma Research Foundation.”
“You have been given a diagnosis, not a death sentence.”
When found early, melanoma is one of the most treatable cancers. In later stages, treatment may be more challenging but no matter how advanced your diagnosis is, the MRF has a plan for you. They’ve carefully outlined what you need to know, what you need from your treatment team, advice to help you get through appointments, access to information about clinical trials and financial assistance, and more. If you need it, it’s there. If it isn’t there, the MRF is connected with an entire community of medical professionals whose life’s work is to provide life-saving care.
Knowing what to do and who to talk to is huge, but many people will tell you the thing that got them through was the community. Patrick Guddal, melanoma survivor, MRF advocate, and founder of Connect Melanoma, likes to say:
“The skin cancer community is like a club that you never ever wanted to be admitted to. But once you’re there you never leave. The friends you meet and connections you make start to feel like home. I’m forever grateful for their role in my life.”
There are a number of ways the MRF brings the community together. It hosts an online patient forum where you can connect with other patients and caregivers. It holds ongoing patient & caregiver meetings to provide opportunities to learn from leaders from major academic medical centers. It partners with other organizations like CancerCare, Imerman Angels and Patient True Talk to connect people to support groups or one-on-one help.
If you are, or know someone who is newly diagnosed, we strongly encourage you to visit the MRF’s Patients & Caregivers page. It can make all the difference in helping navigate a diagnosis.
Warriors Advocate for Skin Cancer Prevention and Protection During a Pandemic
Coolibar launched This is Brave in 2018 when a young girl stepped up and reminded us all of the importance of advocating for and supporting individuals with skin cancer. When Quinn told her brother Graham to Be Brave, she was reminding us all that we can do this! We can battle through and no matter what the outcome might be, we’re better when we can Be Brave together.
In 2020, the third year of our This is Brave campaign and first year as the Official Apparel Partner of the Melanoma Research Foundation (MRF), our mission remains the same but the need for support is even greater. In the past few months, the world has shifted significantly in terms of patient care, research funding, and non-profit outreach. Key fundraising events like Miles for Melanoma have been postponed, and we’re working with the MRF and our community to find ways to continue funding life-saving research, and support patients and advocates across the country.
One in five Americans will develop skin cancer in their lifetime whether there is a pandemic or not. #CancerHasNoCurve. The good news, the MRF and the greater melanoma community continues to be strong and active. Patients and advocates have done everything from taking the message of prevention and protection cross-country, to telling a neighbor to care for their skin and get checked. You are amazing. Everything you’re doing counts!
A lot will change forever in 2020, but the need for skin cancer prevention and protection will not. If you’re able, we’re asking you to support skin cancer awareness and the MRF this May, Melanoma Awareness Month. Here is how you can help:
Read the awe-inspiring stories of our Brave warriors and share them with your friends and family. Awareness can save lives!
Consider donating to the MRF. They’ve created wonderful virtual programs to ensure that the funding for research and education remains strong.
Purchase a 2020 This is Brave UPF 50+ T-Shirt for yourself or send it to someone as a sun-safe gift for a cause. The proceeds go directly to the MRF.
Thank you for all that you do and remember…together we can BE BRAVE!
As long as I could remember, I’d had a red spot on the white of my left eye. In my late teens, it started to grow, change and become raised and irritating. After years of following this up with my general practitioner, I finally got referred to an ophthalmologist when I was 20. He did a biopsy, which came back benign (non-cancerous). Six months later, three very dark spots that resembled a skin mole grew on the same eye. I had the second biopsy done on these new spots and was officially diagnosed with conjunctival ocular melanoma at the age of 21 in January 2015.
When I was told I had ocular melanoma, the room became blurry, an overwhelming sea of emotion and fear came over me and drowned out everything he said following my diagnosis. Cancer, on my eye?! Can that even happen? Isn’t cancer for old people? Is my life basically over now? It had barely begun!
I felt nauseous, trapped and confused. I didn’t feel or look sick so how could my life potentially be on the line? I wondered how long it would be until this illness caught up with me and actually made me look and feel unwell. However, a few weeks passed, and nothing really changed.
I had a lot of check-ups until they informed me that my treatment plan would be watching and waiting. No chemo, no radiation, nothing. I was so confused. Grateful, but confused. It almost felt anticlimactic, such a scary diagnosis and yet all I needed to do was see my oncologist every six weeks.
Six months went by during which I had more biopsies which all came back benign. We started to relax, my appointments became less frequent and life went back to normal. Then, what felt like it happened overnight, I noticed five new spots on the white of my eye and a small lump underneath my eyelid in August 2015. I went to my general practitioner first and he called my ophthalmic oncologist’s office right away. I was booked in to see him a few days later.
I could tell my oncologist felt unsettled at this appointment, he didn’t like what he was seeing and booked another biopsy. All the new spots he removed came back positive for malignant melanoma. This was when the tune changed. Things escalated quickly and I was being told I was going to have to lose my eye and eyelids, and that they’d close over the socket for good in order to save my life.
I still remember the pain and anger I felt in the moment. The very normal life I had imagined for myself—the typical, all-American family life with a husband, a house and a great career—was ripped away in that moment. I went home that night and thought about my options. Very quickly, I realised that I would do whatever it took to save my life. The only real choice I had was whether or not I’d let this break me. Would I hide away from the world or would I find a way to embrace it?
Well, within a few days, I decided I wanted to embrace this new look and make it my own. I went online and found beautiful, bright eye-patches that were going to be my fabulous new fashion accessory. It took me less than 24-hours to embrace my diagnosis and the opportunities it presented.
On October 9th, 2015 I had an exenteration—complete surgical removal of my eye and the contents of my eye socket. The first few days I was in a lot of pain. I couldn’t keep food down and I slept in 90-minute cycles. On the fifth day I had the dressing taken off and got to see my new look for the first time. To best describe how I felt, I’ve taken an excerpt from my book Eye Won: Powerfully Positive, Ridiculously Resilient…
“I almost bounded out of bed to see my new face. I expected to see someone foreign staring back at me, but I saw my bright familiar smile, my freckled cheeks, my button nose, my on-point eyebrows. The only difference, there was one eye staring back not two.”
I analyzed my face and saw a soft beauty in it and my smile brightened as I accepted the woman in the mirror as me. I silently told her that she was beautiful, strong, courageous and most importantly…still me. I tried out my new eye-patches and explored the world a little, embracing my new fashion accessory.
Life quickly went back to normal. Within a month, I was working, driving, studying and socializing. The only thing that had changed was I had a fun new accessory, my eye patch. Most importantly, it looked like we had eradicated the cancer! While the surgery had been challenging both physically and emotionally, I was grateful we’d done it and I could go back to living life as a twenty-something-year-old woman.
On September 9th, 2016 I remember sitting at home with my mum planning out how we were going to celebrate my first annual eye-versary when I had a seizure. I was raced to the hospital and told that the melanoma had spread to my brain and had become Stage IV Melanoma. My heart sank, I knew that everything I had faced up until this point had been child’s play in comparison to what I was about to face.
After having brain surgery to remove the cancer, I had to relearn how to walk and start an ipilimumab plus nivolumab (Ipi/Nivo) blend to prevent the development of more tumors. Looking back on that time, I know I felt terror. To get through it, I focused on what I was grateful for, the blessings I had and the things that made me smile.
More than anything else, the overwhelmingly beautiful feeling of gratitude is the first emotion that comes to mind when I think of my cancer journey.
Three and a half years after my brain surgery and I am thankfully still stable. I have such a beautiful appreciation for life and have accomplished so much. I completed my university degree during my treatment for Stage IV Melanoma. I hiked the Kokoda Trail in 2018, exactly two years after taking my first steps. I wrote and published my book Eye Won, which became a best seller in October 2019. And I got engaged to my incredible fiancé!
Cancer has taught me so much about myself and about the world. While it’s not something I would ever wish on anyone else, I would not be the woman I am today without it. For that I am grateful.
October 8th, 2006. I remember the day quite vividly. A week prior, I had been to my dermatologist to have a small bump on my head looked at. Not overly concerned since it didn’t have any of the typical signs of melanoma. My doctor scraped off enough for a biopsy and I went back to work. Then, on October 8th, I was in a conference room and my phone buzzed. It was my dermatologist’s office calling. I excused myself from the meeting and stepped into the hallway to take the call. It was my actual doctor and not the physician’s assistant. After an exchange of pleasantries, she paused, “I got the results of your biopsy. It’s cancerous. You have melanoma”. I was stunned by the gut punch. The rest of the day was a blur. At that moment, my cancer journey had officially begun.
Two months later in December, a surgical oncologist removed the tumor along with some adjacent lymph nodes on both sides of my neck. The tumor was deeper than expected and diagnosed as stage III melanoma, but it was removed. Margins were clear and I had no cancer activity in my lymph nodes. I felt fortunate and believed that I dodged a bullet.
In 2008, after two years of being NED (no evidence of disease), a follow-up routine chest X-ray showed shadowing and spots on my lungs. The melanoma had returned and had reached a stage IV diagnosis. Over the next 18 months, I had three lung surgeries to remove new tumor growths and wedge resection surgeries that took away 25% of my lungs. I tried to stay positive and committed to outrunning the cancer, literally. I took my exercise to a higher level, enhanced an already good diet, and made a conscious effort to mitigate the stress in my life.
After my third lung surgery, I completed 30 days of Interferon treatment (a form of chemo). It was challenging and I’d never felt worse in my life. Despite the steps I’d taken, by May of 2011, a CT scan revealed that I had tumors on both lungs, pancreas, liver and behind my heart. My stage IV diagnosis became more severe.
I met with my oncologist to map out a treatment plan. I wasn’t going down without a fight. Unfortunately, another surgery was not an option and my doctor didn’t know of any clinical trials. Basically, there was no plan. My doctor looked at me and said, “there is nothing more I can do for you”. Those words pierced the air. Emotions ran rampant, but reality had a way of setting in quickly. I had stage IV melanoma and there is no stage V.
After trying to fully comprehend the odds I was up against, I promised myself that I would find someone, somewhere to help. I wanted to give myself the absolute best chance for survival, so I sought out arguably the best place for cancer treatment – MD Anderson in Houston, TX. They are ranked No. 1 in cancer treatment year after year and are known for advanced cancer treatment options.
My wife and I flew from Atlanta to Houston and met with Dr. Patrick Hwu, a highly respected oncologist specializing in melanoma (today he is the Division Head of Cancer Medicine). When we met, it was clear that he had already reviewed my case as he said, “We’ve got a growing number of options in the melanoma treatment toolbox and I think we can help you. It’s never a good time to be diagnosed with melanoma, but if ever there was a time now is it”.
Amongst the options available, we talked a lot about a relatively new treatment category at the time called “immunotherapy” – training the cells of your immune system to seek out and destroy the cancer cells. After weeks and weeks of various testing, certain treatments were ruled out since my cells did not respond. Ultimately, the best option was a clinical immunotherapy trial that combined high dose IL-2 interleukin (a standard of care treatment option for melanoma at the time) with the Mage 3 vaccine. IL-2 by itself had a pretty low rate of response, but the clinical trial was to see if tying it to a vaccine would improve the response rate. The treatment had drawbacks – side effects, physical hardship, mental challenges, a long duration, and of course, the fact that the trial was new and nobody had completed it at that time.
To fulfill the inpatient treatment requirements, I would travel to MD Anderson in Houston for a week at a time, then return home for one to three weeks. I did this for about eight months. The biggest criterion of the trial protocol was that after each week of treatment I underwent a full CT and a brain MRI. If tumors were stable or shrunk, I continued with the trial. If they grew, then I was removed from the trial.
I started the first week of October 2011. The treatment was tough. Each time I was in intensive care hooked up to multiple machines monitoring every vital you can think of. I gained about 40 pounds of water weight each week and then would have to lose it before I was discharged. I experienced uncontrollable chills and muscular spasms. My heart rate would spike into the low 200’s after each dose of IL-2. My taste buds all but disappeared and I hardly ate. Somehow, in the haze of it all, my immune system responded, and my tumors began to slowly shrink. Week after week, month after month, my CT and MRI results showed progress and I kept going back to Houston for treatment.
I finally completed the inpatient portion of the trial over the eight-month period. Although extremely happy to finish, I wasn’t done. I continued head, neck, chest and pelvic CTs and brain MRIs immediately prior to each return trip to Houston. Every three months, then every six months to get lab work done, meet with my research nurse to answer a litany of questions about how I was doing physically and mentally, meet with Dr. Hwu and, of course, get my vaccine. On February 14th, 2014, in Houston for my checkup and scan results, I received the news I had been dreaming about. My scans and MRI showed no tumor activity. I was in remission.
After that landmark day, I continued getting CT scans, MRIs and the vaccines for another year. In July 2015, after 4+ years of countless hours in the ICU and flying back forth from Atlanta to Houston for the vaccine, I become the first patient to complete the IL-2 & MAGE 3 clinical trial.
It’s now May 2020 and I am 13+ years removed from my original melanoma diagnosis. I’ve had a combination of 16 major and minor surgeries. But most importantly…I’ve been cancer-free for six years.
My advice to you after all of this is to accept the facts and realize that no one is immune. More people are diagnosed with skin cancer each year in the U.S. than all other cancers combined.
Melanoma is the third most common cancer among men and women ages 20-39, and on age-related cancers, melanoma is the #1 most diagnosed cancer among 25 to 29-year old’s in the United States. So be smart! PLEASE wear sunscreen and sun protective clothing, check your entire body for changes in your skin and see your dermatologist regularly. Most importantly…enjoy life and take care of your body – it’s the only one you get!
For those still battling cancer – keep the faith, keep fighting and don’t ever give up. Above all, always believe that miracles are possible.
Melanoma is one of the deadliest cancers in the world. When someone becomes diagnosed with melanoma, or any type of cancer, it changes them. It changes not only their world, but the world of their loved ones. There are a lot of feelings that bounce around during that time. A lot of pain, anger, frustration, and fright, but mostly: strength and courage. These feelings, and those changes happened to me when I was diagnosed with melanoma at the age of eighteen.
A lot of people are familiar with my story due to the fact that I was able to use my title and platform, as Miss Illinois USA 2018 to raise awareness, and promote prevention and healthy living. Although people are familiar with the story of my diagnosis, they are oftentimes not familiar with the struggle my diagnosis caused me and my loved ones, along with how I’m doing now that I am melanoma free. To me, those two things are just as important as the story of my diagnosis. If you are unfamiliar with how I got diagnosed, I encourage you to read this piece on the Melanoma Research Foundation website, which shares my story before continuing on with this blog.
Like I mentioned before, a diagnosis affects not only the individual being diagnosed but also the loved ones in their lives. When I found out about my diagnosis, I had to stay strong. I couldn’t show that pain, anger, frustration, and fright that I was feeling. Not because I didn’t feel it, but because I needed to be tough for the people I love. I was eighteen at the time, a senior in high school, and did not understand what was happening to me, and why it was happening to me. I always knew about cancer and how horrific it is, but like most people, I never thought it would happen to me. But it did.
This diagnosis nearly broke my mom. I never saw her so afraid, unsure and just upset. It consumed her, which consumed the rest of our family. I couldn’t let my fear and anger make things worse. I had to keep telling myself not to cry, and not to let my fear of the unknown show so that she could at least see that I knew things were going to be okay, even though I didn’t. Even though I don’t regret bottling up those feelings and pretending I was alright to my family and my friends, I know how psychologically harmful that was for me. Thankfully, once I was melanoma free I was able to go to therapy and let those bottled up emotions out. Therapy helped me move past feeling embarrassed and thinking I am “ugly” due to the scars on my body. It helped me stop wearing a Band-Aid on my thumb even though I was all healed up. It helped me gain the confidence to win Miss Illinois USA, and walk across the Miss USA stage in a bathing suit. And it helps me continue to spread awareness and prevention towards this awful disease.
Although I am melanoma free, and although I’ve gone to therapy, I’d be lying if I said my diagnosis and that scary time in my life didn’t affect me today. Although I am doing much better and feel more confident, I still catch myself covering up my thumb when I talk to people. I still catch myself picking out a shirt that covers the scar across my chest rather than the one that doesn’t. I still catch myself holding my breath every time I go to see my dermatologist for a checkup. Although I am melanoma free, almost every time I have that checkup, I need another biopsy because something looks “off”. Waiting for those results is always excruciating for me, but thankfully they’ve been coming out benign.
I’m very thankful for the position I’m in that allows me to share my story, and spread the message of early detection and prevention. You cannot always prevent cancer, but there is so much you can do that helps. It kills me when I still see my friends going to the tanning salon. I share with them my concern and how I would hope they know better because of my story, but all they say is “they know but need to be tan”. There are so many alternatives. It is safe to go get a spray tan or buy self-tanner. If you have the ability to avoid unnecessary UV rays, then you should be taking it. You should be making sure you’re wearing sunscreen and sun protective clothing when you’re outdoors and making sure you add a dermatologist to the list of doctors you see each year. Early detection possibly saved my life. I know it’s easy to read this and think that it won’t happen to you, but please remember that I didn’t think it would happen to me either, and although I was so lucky, the pain of that diagnosis affects me every single day.
In December of 2013, my wife Terry and I were living in Prague where I had been working for four years. We had returned to the states for Christmas break and were looking forward to seeing and spending time with our family.
I had also scheduled an appointment with my dermatologist as I had a small pimple that turned into a cyst type bump on the top of my head. On December 23, my doctor took a biopsy and three days later I had a diagnosis of Spindle Cell Melanoma, a rare subtype of malignant melanoma. He advised that I get to a specialist immediately as it was large and very deep and needed to be acted on quickly.
Our family realized we needed to educate ourselves about this disease in order to better understand and prepare for the battle ahead. That’s when we discovered the Melanoma Research Foundation (MRF). The knowledge base on melanoma is quite extensive, and frankly a bit overwhelming so the MRF website was an invaluable resource for us.
The process from diagnosis to surgery with daily radiation treatments took three months. As we were planning our return trip back to work in Prague, I discovered a small bump just outside the radiation area. A biopsy confirmed the melanoma had already returned and further testing with a PET scan showed that the melanoma had spread throughout my liver and lungs. I now had Stage IV Metastatic Melanoma.
In 2014, that diagnosis had a very poor prognosis. My doctor said my best chance was a clinical trial that was being offered at Moffitt Cancer Center in Florida. We went back to educating ourselves on what all this meant! Then, armed with more information, I chose to participate in the clinical trial. With that choice, I knew that being a part of cutting-edge research in a clinical trial was just as important as finding a solution for my situation.
From June 2014 to November 2015, our time was filled with long drives to and from treatments, side effects, and a significant adverse reaction that resulted in a hospital stay. But, all of it was in the hopes that we were forging a path to a remarkable outcome.
On November 13th 2015, we finally had a reason to celebrate. We heard the words I wasn’t quite sure I’d ever hear, “Doug, your scans show no evidence of disease”.
Throughout my journey from Stage IV Melanoma to No Evidence of Disease (NED), I felt it was important to help others understand the value of education, research and advocacy for this disease. My experience on a successful—albeit challenging clinical trial—led me to develop a passion for ensuring that the necessary research continues to be funded and findings shared. I am thankful for the scientists, doctors and organizations that bring this disease to the forefront.
In retirement, I’ve taken up a role on the MRF Board of Directors and I am dedicated to helping the organization that is best positioned to educate patients and caregivers fund research grants to find a cure and build a strong, supportive network of advocates. As part of the board, I have the opportunity to contribute to a worthwhile organization that I am certain will make a significant impact in finding a cure for melanoma.
My journey started almost fourteen years ago when my mom noticed a raised pink bump on the base of my right ring finger. I was only a year old at the time. For many months, my mom took me to numerous doctors to try and find answers. Each one told her it was nothing; however, she thought otherwise. She thought it looked like a melanoma lesion my grandfather had years prior. Her continual pestering to doctors finally worked, and I was called in for a 30-minute “cosmetic” surgery to just remove the bump. The 30-minute surgery turned into two hours, and afterwards the doctors sent the tissue they removed to be biopsied at several leading cancer centers. All of the results came back inconclusive. After weeks of back and forth, I was finally referred to MD Anderson Cancer Center. It was there that my melanoma was confirmed, and my cancer journey began.
Being that melanoma was known as an old person disease, people didn’t take me seriously. One time, someone told my mom to get me out of the melanoma clinic because children weren’t allowed to be there. Little did they know that I was the patient.
At MD Anderson, I met the doctor that saved my life, Dr. Jeffrey E. Lee. At this point in time, for a melanoma diagnosis like mine, the life expectancy was just six months. And this was for adults – I was only a toddler. However, that was not the plan for me, and I write this 156 months after my diagnosis, living life to the fullest because I wasn’t even supposed to have a life at all.
Following my surgeries, I had a port put in and year-long treatment with interferon. For a solid year, I experienced extremely high fevers (up to 105!), night terrors and was a very sick little girl. But, I survived, and for that I am grateful.
Surprisingly, I have no memories from my cancer treatments. It must be God’s way of protecting me from those bad memories.
Although my family and I were thrown down a path that no one would ever want to go, we decided to make the best of it. In the year following my treatment, my mom and grandfather, the one who had a melanoma like mine, established the Marit Liv Peterson Fund for Melanoma Research with the goal of raising half a million dollars to support melanoma research at MD Anderson Cancer Center. We began by asking family and friends to contribute, but half a million dollars proved to be too difficult of an amount to raise with them alone. That’s when we decided to hold our first golf tournament to help raise money. Since we began, 100% of every dollar raised has gone directly to Dr. Lee and his melanoma research team. And every year, Dr. Lee and his team join us for free skin screenings and to report back on the research that was funded by the golf tournament. To date, we have raised over two million dollars and have caught five melanomas and numerous other skin cancers on our players through the skin screenings.
Although my melanoma was likely genetic, I do all in my power to help educate others on melanoma prevention. In 2016, the Melanoma Research Foundation (MRF) reached out to me and my family and invited us to go out to Washington, D.C., to advocate for melanoma research. We were taught about needs in the melanoma community such as funding and education. Then, the next day, we went to Capitol Hill and spoke with our senators and representatives about these topics relating to melanoma. We have been going to D.C. for the past four years and through this, we have connected with Coolibar! When I was in 8th grade, I was invited to go to the MRF’s Pediatric Summit in Colorado Springs, Colorado, where I took place in a mini fashion show wearing Coolibar clothes. It was super fun for me and all the little kids there.
The path that someone takes when presented with a challenge can say a lot about who they are as a person. When my family and I were presented with cancer, we decided to make the most of it. As weird as it sounds, my cancer has given me so many amazing opportunities that have given me a greater look on life and how I should appreciate every day that I have.