Making Waves with Hope: “Survival Tips and Lessons Learned” by the Denton Family

Making Waves with Hope is a series of inspiring messages by leaders in the Swim Across America community during this uncertain time. The Denton Family helped bring Swim Across America to St. Louis. Walter and Kathy Denton have been married for 20 years and their daughters are Ally (17) and Jenna (14). Walter has been battling cancer since 2013 and Kathy is the Event Director of SAA-St. Louis.

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In 2013, the world as we knew it changed. We had a fear of the unknown and at times we felt overwhelmed, anxious or depressed. We were hypervigilant about germs and exposure to viruses. We lost our sense of safety, security and predictability. We were uncertain about the future.

This may sound similar to our current unprecedented times in our country as we face COVID-19; however, we are referring to our family’s battle with cancer. While we understand that the situations are different, there are many lessons our family learned during cancer that might be helpful as you navigate through this uncharted time.

Since Walter’s original diagnosis of undifferentiated pleomorphic sarcoma in 2013, he has spent more than 100 days in the hospital. This included chemo treatments, surgical procedures, multiple infections and a stem cell transplant due to chemo-induced myelodysplastic syndrome (MDS). During that time, we developed our own survival techniques and hope they might help as our world is faced with a pandemic.

Manage Your Expectations.

Walter Denton (cancer survivor & father): Living through a cancer diagnosis and treatments can be like a roller coaster: good news then bad news then uncertain news. Your health and future are only as certain your next CT scan or blood test. When will the journey end?

It is easier to cope if you manage expectations so that you will not be disappointed and demoralized with each setback. We were always convinced that we would get through this horrible experience, but it would not likely be tomorrow or next week. We understood early on my cancer diagnosis was a marathon, not a sprint. 

You Are Not Alone.

Kathy Denton (wife & mother): I will always remember the first time I visited the 7thfloor of Siteman Cancer Center in St. Louis. I had so many emotions going through my mind but as I looked at my husband, I kept thinking he looked so healthy and so many people around us looked so frail. When they called his name to take him back for vitals, I had to walk away and my emotions started to overflow. As I looked out the window, I became very angry that the whole world still seemed to be going on around us, yet we felt as if the world had stopped. I felt very alone and overwhelmed. Those thoughts faded quickly as I realized we were not alone. We soon met many people who were also dealing with a cancer diagnosis and an uncertain future. Additionally, our friends, family and church provided comfort and supported us in many ways. We were not alone.

Ally (teenage daughter): My friends’ families were so supportive. I would spend the night on a school night at a friend’s house, or they would take me to practice. My teammates and coaches supported me through it all. I’m not the biggest talker, but the people that were there for me, just there, really showed me that I do not have to feel alone in a time of uncertainty.

Develop a Routine, but Understand It May Not Work for Everyone.

Walter: During my stem cell transplant, I was scheduled to live in a hospital room for at least 30 days. That is the ultimate “shelter in place” in that my life was reduced to a 10 x 10 room and I had to wear a mask just to walk on the hospital floor.

I understood early on that I needed to build structure into my days:

  • I did yoga every morning, no matter how rotten I felt.
  • I read from a devotional book after breakfast to give me a spiritual foundation.
  • I read local and national news on my laptop every day to stay in touch with the outside world.
  • I stayed in touch with family and friends (by phone, email, and FaceTime) to strengthen my relationships and reinforce that I am not in this alone. 

Being isolated does not mean being alone. Enrich yourself and your relationships through intentional outreach to your family, friends, and environment. 

Kathy: While Walter maintained a daily schedule, I felt as if my life was always in chaos juggling a job, being a mom with two active kids, and also being a supportive wife and caregiver. One of my routines that changed the most was exercise. Before cancer, I woke up at 5 am every day and went to the gym. With two young kids at home, that was no longer an option but I also recognized I needed exercise for my own mental health. Over time, I purchased an Arc Trainer on Craig’s List and also bought weights, a workout bench and a trainer for my bike. While I didn’t enjoy working out at home as much as the gym, I did what I needed to do at the time. 

Listen to the Experts.

Kathy:  As soon as we learned of Walter’s suspicious mass, I immediately began consulting Dr. Google to find out what we might be dealing with. We quickly transitioned from “we don’t think this is cancer and if it is, it should be highly treatable” to … “this is highly aggressive and we need to start treatment right away.” In our situation, I felt like I was on a steep learning curve but quickly realized, while it is okay to get a second opinion, always look for reputable resources and trust those who have focused their career and education on our specific diagnosis.

Ally: My dad was diagnosed with cancer when I was in fifth grade, meaning I didn’t fully grasp all that was going on. I was scared that my dad wasn’t going to make it. My only experience with cancer was my dog, who had his leg amputated and died two days before my dad started chemo, and my grandpa, who was diagnosed with leukemia on Easter and died three weeks later. In this time, however, I had to listen to my parents (my experts) to understand the situation in itself. Without them, I could never have been able to see the truth of the situation.

Walter: There was a point in my treatment where there was no road map for what to do next. My doctors said that they had never treated anyone in my situation (sarcoma, stem cell transplant for MDS, sarcoma recurrence). So, we looked at the possibilities, weighed the probabilities, and went with the option that had the greatest chance for success. I wasn’t sure what I was getting into, but I am grateful for my doctor’s candor, courage and determination.

Acknowledge the Heroes.

Walter: I would not be alive without the efforts of countless people behind the scenes. First of all, I had incredible doctors and nurses who led me through my various surgeries, tests, and treatments. I also benefited from doctors who sponsored clinical trials that I participated in. I received blood and platelet transfusions from generous donors who are never recognized for their anonymous gifts.

Most importantly, I am alive because of the stem cells that were donated for my stem cell transplant. I will forever be indebted to my “brother from another mother” who shared his bone marrow when mine failed. I am living with his stem cells and immune system, and I am grateful for him and all of the other heroes.

Jenna (teenage daughter): There were many adults that helped us when my dad was in the hospital. I went to a friends house almost every day and they made sure I didn’t go hungry and also helped me with homework. I had many teachers that helped and they went above and beyond. Friends and our church brought our family food. We even had someone bring my dad home from the hospital in a snow storm. Adults really help each other when someone is going through tough times.  Really, my dad was my biggest hero because not only did he stay his silly self, he also beat the odds.

Continue to Celebrate Milestones.

Ally: My fifth grade year, I spent my birthday in the hospital so that I could be with my family. There is a picture of me in the hospital with an ice cream cake wearing a green Hollister shirt. I still have that shirt, and every time I wear it, I think of that time and how far we’ve come.

Denton Give Yourself Something to Look Forward To.

Kathy: Walter’s sister lived in Hawaii and our family was planning to visit them for Christmas 2013. Instead of going at Christmas, we scheduled a trip for when his treatments were supposed to be completed the following summer. We had no idea that he would have so many treatment delays and were grateful his doctor allowed us to travel in July, even though he still had his last round of treatments to go. Planning experiences became a coping mechanism for me (especially around scan time) because I needed something to look forward to!

Jenna: Always get insurance for everything you do. We cancelled lots of trips and experiences. It’s okay to be sad or mad but chill out and don’t stress. If something is cancelled now, it gives you something to look forward to later.

Joy is Contagious. Use Your Situation to Provide Hope to Others:

Ally: In the time we stayed at the hospital, my family became friends with nurses and doctors. Rainbow Loom was really in at this time, and I loved making bracelets, so I made rainbow loom bracelets for the nurses. I was able to give hope to those that see people in pain all day by making bracelets.

Walter: While we would not want to go through this again (or wish it on others), we have tried to use our experience to help others. I don’t feel like a hero, but people have expressed to me that they are inspired by my story. We have tried to pay it forward in numerous ways:

  • Developed the Swim Across America fundraiser for Siteman Cancer Center
  • Helped coordinate the Cure Sarcoma 6K fundraiser for the Siteman Cancer Center and Sarcoma Foundation
  • Helped coordinate a Be the Match donation drive for the bone marrow registry
  • Joined the American Cancer Society local board of directors
  • Presented to local civic groups
  • Purchased gas and parking cards for other cancer patients

Everyone Copes Differently, and That is Okay! It’s Also Okay to Ask for Help.

Kathy: At times, I held it together really well and at other times, I made some unhealthy choices. I barely slept. I drank too much. People drove me insane and I had no filters to help manage my emotions. One day I finally had a moment where I realized I needed help. I contacted the counseling office at our cancer center and met with someone twice before feeling like I was back in control of my emotions again. That reset helped me realize I needed outlets to express my emotions. I have a small group of prayer warriors who still lift our family up in prayer and I have a small group of friends from different times in my life who have become a huge support for me.

Walter: I was a swimmer in high school and college, and swimming was a lifeline during my cancer treatments. The pool provided continuity to my previous life and calmed my anxieties. Swim Across America was a perfect outlet for my energies where I could channel my love of swimming into a force for good by raising money for the Siteman Cancer Center in St. Louis.

Jenna: I try to look for and provide humor in all situations. I didn’t always like going to the hospital, but when I was there I was pretty much the comedy relief. I made up skits and made fun of my dad walking on crutches and I made everybody laugh. Making my family laugh helped me feel like I was contributing. 

You Will Be Changed After this Experience.

Kathy: I try to apply the Marie Kondo principles to my life. If something doesn’t bring me joy, I don’t want to be a part of it. This has allowed me to reprioritize what is important in my life and spend time with people and things that bring me joy. Quality time and experiences are important for our family and we try our best to make this a priority.

Walter: The things you think are important before a cancer diagnosis are not the same things that are important after a cancer diagnosis. The thought of dying from cancer clearly refines your priorities. While my job was (and is important), it is not more important than my family and the relationships I have cultivated over my lifetime. Would I see my children graduate from high school and college? Would I see them get married? Would I meet my grandchildren? Would I be able to retire and travel the world with my wife? These questions immediately generated much more gravity than before.

I have cherished my children’s sports and activities so much more now that I faced the possibility of missing them forever. We have made efforts to connect and visit our friends rather than assume we will get to it “sometime.” Facing mortality forces you to live in the moment and enjoy the present and not place your intention in a future that may not come.

We often reference our lives as “Before Cancer” and “After Cancer,” as our family profoundly changed. We live differently and perceive ourselves and the world differently through the lens of cancer. All of us will see the world differently through the lens of pre-COVID and post-COVID.

The Denton family will be leading the fundraising charge for Siteman Cancer Center at SAA-St. Louis again this year. You can read more on Walter’s story and donate should you choose on his personal fundraising page.

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Speedo USA and Swim Across America Donating Goggles

Speedo USA and Swim Across America have teamed up to donate 2,000 goggles to Swim Across America hospital beneficiaries. The goggles are offered as protective eyewear to hospital medical staff.Screen Shot 2020-04-06 at 1.03.35 PM

“Our hospital partners shared a need for protective eyewear so we reached out to Speedo USA to see if they might be able to help,” commented Rob Butcher, Swim Across America CEO.

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Swim Across America-Dallas team captain Alan Wright of Baylor Oncology shows off his SAA spirit.

“Many of Speedo’s athletes support Swim Across America so when we learned of the need and that we could help, we were in,” shared Larry Meltzler, Speedo USA Senior Vice President, Sales. “Speedo supports learn-to-swim to competitive athletes, and we also support the medical community that is saving lives.”

Swim Across America hosts charity swims with the proceeds funding cancer research. If you feel inspired, you may donate to Swim Across America through this link.

Advice from Dr. Tara Kirk Sell, SAA Olympian Ambassador and Pandemic Policy Expert

In 2004, Dr. Tara Kirk Sell broke the world record in the 100 breaststroke (Short Course Meters) and earned a silver medal at the 2004 Olympics in Athens. When she’s not supporting Swim Across America-Baltimore as an Olympian Ambassador, Dr. Sell conducts, manages, and leads research projects to develop a greater understanding of potentially large-scale health events at Johns Hopkins.

Dr. Sell was an expert witness at a congressional committee hearing on COVID-19 in early March and Swim Across America was lucky enough to get her thoughts on our current position.

“I’ve been working on pandemic preparedness issues for the past decade and my Center, the Johns Hopkins Center for Health Security has been on COVID-19 since the beginning,” said Dr. Sell. “My work has always focused on trying to improve our country’s preparedness for serious pandemics like COVID-19. I work on a range of different topics including public health communication, misinformation, crowd sourced disease forecasting, community resilience, and public health policy formation.”

When asked for her expert advice to the Swim Across America community, Dr. Sell provided this powerful message:

“I think the most important thing that people can do in their response to COVID-19 is right-size their understanding of the seriousness of the disease. On the one hand, it’s a serious problem. On the other, there’s no need to panic. We need to take thoughtful precautions like limiting unnecessary contact with others, having good hand hygiene and respiratory etiquette, and staying home when sick to manage the outbreak now and for the foreseeable future.”

“The SAA community is no stranger to the idea that we all need to join together and make shared sacrifices to protect the vulnerable. This pandemic is not different.”

Here’s video from Johns Hopkins featuring Dr. Sell in early March. For the most updated guidance on COVID-19, visit: https://www.coronavirus.gov/

Dr. Tara Kirk Sell is a Senior Scholar at the Johns Hopkins Center for Health Security and an Assistant Professor in the Department of Environmental Health and Engineering at the Johns Hopkins Bloomberg School of Public Health. 

A Message from a Non-Profit Leader. Thank you.

SAA Why I Swim FlagsFor three decades, Swim Across America has been hosting charity swims. The proceeds from our charity swims are then granted to fund cancer research. Since our first charity swim in 1987, we’ve granted around $100 million dollars to our hospital partners who have been at the forefront of developing new cures and treatments to fight cancer.

Our commitment is to continue providing hope to the individuals and families affected by cancer through support, inspiration, and leadership.

GogglesThe values of Swim Across America are rooted in family. We are grateful for the wisdom of our board members, whose steady leadership has guided Swim Across America through times of hardship; for example, weathering the storms of 2001 and 2008.

Lessons from other times of crisis have helped to prepare Swim Across America for uncertainty. Like many businesses, we’ve tightened our belts. Thanks to guardrails having been put in place years ago to safeguard our cause, we are facing these times with the strength of community and family.

  • Our team is taking on more local responsibility for our charity swims as our volunteers are experiencing their own challenges.
  • Our team is sharing stories about our grant partners to bring you hope and inspiration. Our grants continue to fund more than 60 oncology projects and the thousands of nurses, researchers, and patients within the programs.
  • Our team is creating new opportunities so the spirit and purpose of teams like Team Amazing Grace can continue to make an impact. A tour in honor of Grace Bunke was planned across 14-of our charity swims this year is being adjusted.

THANK YOU to our supporters, partners, and volunteers. You’ve shown your trust in us. We don’t take it for granted. We want you to know how much we appreciate you.

We are here for you now and as we continue to move forward, together.

Rob Butcher
Swim Across America | CEO

Swim Across America Commitment to Our Beneficiaries

March 23, 2020

To Our Beneficiary Partners,

This is an uncertain and stressful time for the medical community. We—your Swim Across America family—want you to know how much we appreciate the sacrifices you are making. We are always on your side and continue to proudly support you.

It’s too early to know what impact COVID-19 and the economic downturn will have on giving. What is certain, the donations received from the Swim Across America charity swim for which you are a beneficiary will be granted this December to continue supporting research and clinical trials.

Mia Levy-Chicago-2019In December of 2019, Swim Across America granted a record $6M that funded more than 60 investigator projects. It is a policy of Swim Across America that funds granted be used within the calendar year. We are writing to modify this policy given current circumstances and Swim Across America’s desire to support and preserve the human capital, and the research performed.

Given that investigators, post-docs, graduate students, and research personnel may be reassigned or otherwise unable to perform work on specific funded projects:

  • Swim Across America permits continue expenditure of funds that had been designated to salary/fringe to be used, even if those personnel are not able to carry out the Swim Across America funded research, and there is no alternative source of funds.
  • Swim Across America grants no-cost extensions for unused funds to a date yet determined, not to exceed 6 months from the end of the current funding period, unless further extended in future communications.
  • Swim Across America will delay the requirement of progress reports until the no-cost extension period concludes.

IMG_5973We acknowledge that you and your research staff (your intellectual base) may be on quarantine or not able to perform their work. We acknowledge some patients necessary to your research or clinical trials, may be on quarantine and not able to participate. Swim Across America supports all at your institution during these challenging times.

When the Swim Across America board of directors, working with experts, advisors, and our wide community of cancer researchers and clinicians feels some degree of normalcy has returned to the research community, we will reach out to assess the impact and make whatever adjustments in specific aims, timelines and budgets can be made to assist that valuable research goes forward.

48330487337_56768e8af4_oOur messaging for the foreseeable future will be themed around grants to our beneficiaries. You are giving hope to so many, and we want to showcase your impact as a gentle way to encourage supporters. Please share with Swim Across America those stories of how the important mission of conquering cancer will move forward in the face of these events.

Thank you for Making Waves to Fight Cancer with us.

Rob Butcher                                     Dr. Evan Vosburgh
Swim Across America | CEO        Swim Across America | Beneficiary Chair

SAA Partner Orca Announces 2020 Fundraising Prize for All Open Water Swims

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SAA Partner Orca is supporting Swim Across America in 2020 by rewarding a brand new Orca TRN wetsuit to a lucky top early WaveMaker at each of our open water charity swims! All participants for each open water swim that hit WaveMaker fundraising status one month before the swim will be entered into a raffle to select a winner! Step up the early fundraising and be one of the elite fundraisers to represent SAA with a new Orca wetsuit at your swim!

You can further support Orca and Swim Across America by using the code SAAPARTICIPANT15 at orca.com to save 15% on wetsuits, gear and more!

The Orca TRN wetsuit is the ideal choice for those athletes who are taking their first steps in the open water or triathlon world. This wetsuit provides a mixture of buoyancy and flexibility, keeping you comfortable and safe in your first competitions.

Swim Across America Awards a Record $6 Million in Grants to Fight Cancer for 2020

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In 1987, an inaugural charity swim was hosted across Long Island Sound that raised $5,000 for cancer research. Since then, Swim Across America charity swims have granted nearly $100M that has funded innovative cancer research and clinical trials. Swim Across America grants have played a major role in the development of immunotherapy, detection, gene therapy and personalized medicine. The impact is that families who hear “you have cancer” are more than ever hearing “there is hope.”

In 2020, Swim Across America will be awarding a record $6 million in cancer research grants that will fund more than 50 projects and programs at the following beneficiaries: Alliance for Cancer Gene Therapy (Connecticut), Baylor Scott & White Sammons Cancer Center (Dallas), Cancer Support Team (Westchester, NY), RUSH University Medical Center (Chicago), Children’s Healthcare of Atlanta, Cold Spring Harbor Laboratory (New York), Columbia University Medical Center (New York), Dana- Farber Cancer Institute (Boston), Feinstein Institute for Medical Research (New York), Medical University of South Carolina Hollings Cancer Center (Charleston), Johns Hopkins Sidney Kimmel Comprehensive Cancer Center (Baltimore), Johns Hopkins All Children’s Hospital (Tampa), Atrium Health Levine Cancer Institute (Charlotte), MassGeneral Hospital for Children (Boston), MD Anderson Cancer Center (Houston), Memorial Sloan Kettering Cancer Center (New York), Moffitt Cancer Center (Tampa), Nantucket Cottage Hospital, Palliative and Support Care of Nantucket, Siteman Cancer Center (St. Louis), Seattle Cancer Care Alliance, UC Benioff Children’s Hospitals (San Francisco and Oakland), Children’s Hospital Colorado (Denver), University of Michigan Rogel Cancer Center (Detroit), VCU Massey Cancer Center (Richmond) and Women and Infants Hospital (Rhode Island).

In addition to these grants that are being funded by Swim Across America charity swims within their community, Swim Across America is awarding $110,000 in grants to the Conquer Cancer Foundation (American Society of Clinical Oncology—ASCO) and the American Association for Cancer Research (AACR) that will fund young investigators who have promising ideas to fight cancer.

For more information, please visit swimacrossamerica.org