We are proud to present the finalists for the 2019 Hero of Hope Patient Award! If you are not familiar with the nominees, read their profiles by clicking on their names.
The voting period for the 2019 Hero of Hope Patient Award has ended.
"Throughout Greta’s battle with a rare cancer, called NEUROENDOCRINE TUMOR, aka NETs" she has faced insurmountable odds and has been a beacon of hope and inspiration for thousands throughout the country and world suffering from a rare cancer as she has. She is a well-known highly respected patient advocate throughout the country at this time, advocating for research funding, even getting a law passed in CT, the first rare cancer advocacy health bill to be ever created, HB 6522. Her mission was to not have what happened to her happen to anyone ever again. It was to save lives, educate and bring forth critical mass awareness of this cancer.
She was misdiagnosed by a top gastroenterologist who dismissed her complaints and misread scans, and even worse missed the primary tumor growing that was blocking her ilium. She was also told she had no cancer after numerous scans, and diagnostics. Only 4 months after these diagnostics were completed, she was rushed to the hospital with a severe, acute bowel obstruction where it was determined that the cancer had metastasized to many organs, and was now stage 4, the last stage.
To be told there was no cure, no hope of remission and little knowledge and research of this very complex, misunderstood cancer, and also had less than a year to live, Greta being Greta, took a take charge attitude of wanting to make a difference, and boy did she ever. Her sole efforts in bringing forth HB 6522 created a platform for real change, especially, politically, to help the patient, but also the medical community at large to be better equipped with education and awareness of rare cancers like hers.
She is taking this to a federal level with key political representatives. Since onset of her cancer, Oct 2014, Greta has endured 8 major operations, over 728 vials of blood drawn, 114 scans of various kinds, 33 ER hospital admissions, 27 hospital admits, 115 total days in a hospital, 3 angioedema attacks, 6 anaphylactic shocks, gram negative pneumonia, and also has 2 rare diseases that came along for the ride in tandem with her cancer. Her very recent hospitalization of 31 days yielded more bad news, another surgery which included a GTUBE installation and a life altering way to survive, as now, only TPN can be administered for her to live.
Greta has done so much more than just the HB, she has inspired many, keeping them motivated, informed, educated, and always has a smile on her face. She is respected by patients, politicians, major organizations and medical professionals alike.
She has been featured in international media, local outlets, numerous articles written about her, even with the ASCO Post and Conquer Magazine. She created the first NET support group at her treating hospital. Greta has persevered against all odds, while being so very sick and inspired the public and patients at large to know themselves and take head with their health and including medical professionals to be more aware of rare. Greta navigated the impossible politically in a fight to evoke positive change for all and brought this change with my health bill passing. Rare cancer advocacy grassroots HB, 1st of its kind by any patient throughout the country ever attempted...she did this. And it shall save lives. Her mission has been accomplished. "I am #trueGret"
Greta is a thriver of stage IV neuroendocrine cancer that was missed due to its rarity, as well as its mimicking of other problems. Despite struggling through diagnostic and therapeutic procedures, Greta fought for more than 2 years, even encountering the active opposition of her state's medical society, to ensure the passage of Connecticut's Bill HB 6522. Her laser-like efforts in support of this bill had 1 single goal: to ensure that doctors, like hers, would face a mandate which simply provided education about rare cancers like hers. Her efforts were tireless, and her goal was entirely benign ... a mandate for the education of physicians. Organized medicine countered her forceful arguments for this mandate by stating that doctors don't need anymore mandates!
Ultimately, Greta's efforts paid off big-time ... Bill HB 6522 passed and, as a result, the lives of patients with rare diseases such as neuroendocrine tumors will be saved if the mandate to educate physicians in her state is carried out. Greta's hard work on this bill will not prevent a delay in diagnosis of her own cancer, but it might save many others from the same plight. Greta's selfless, valiant, tireless effort on behalf of others stands as an example of what it means to focus and overcome obstacles when the goal is truly life and death.
What is a hero? My definition is someone who stares the enemy, cancer, down with fierce determination to conquer, and rises above the ashes and transforms them into something extraordinarily beautiful. As an oncology nurse I have had the opportunity to care for many beautiful and courageous heroes. But 1 stands out and shines. Her name is Kirsten Arbon, a wife and a mother of 3. At 20 weeks pregnant she was diagnosed with stage III breast cancer. She endured weeks of neoadjuvant chemotherapy while carrying her son. After chemotherapy was completed, she gave birth to a beautiful healthy baby boy lovingly nicknamed “Thor” for his enduring strength through chemotherapy with his mommy. Shortly thereafter, she continued down the care path, had surgery, weeks of radiation therapy followed by weeks of additional chemotherapy, and started on Herceptin. One year later, nearly to the date of her diagnosis, she went into cardiac arrest. I thought we had lost her. But, true to her inner strength she came back to us and fought through her recovery. There were many dark and difficult days. Yet, through it all she continued to fight and emerged a hero to so many around her.
She expressed that she had a strong community that provided immense support and love. It is best expressed in her own words which are posted on her KM3 Project website. “While my hand I was dealt was horrific it brought something to my attention, something quite beautiful: just how many people cared for me and my family. I remember thinking how could it be possible that I could warrant all this help? Life is hard. Life is about helping each other get through it. We all have the power to make it not so hard for others. I could never pay back all the kindness I received. My family was fed hundreds of meals that nourished our bodies and our souls. My bare head was kept warm by the hats and scarfs sent to help and my newborn son was clothed and cared for when I couldn’t do it. I have had blankets given to wrap up in when I was chilled to the soul and gifts and attention bestowed upon my girls. So many prayers that when I was on my knees, I was able to stand. I am now in a position to not only say thank you from the bottom of my heart but to also do unto others as was done to me. It’s a pretty great spot to be in.”
Kirsten Arbon filled a gap with the KM3 Project non-profit founded in 2015, by providing financial support to parents with children under 18. Her foundation which was birthed from her experience and designed by her from the ground up, partners with the cancer center where Kirsten received her care and provides for patients and families living in her own community. KM3 Project’s mission statement, “Fighting cancer is rough we’re here to help.” The non-profit is over 90% charity, meaning over 90% of the funds donated go directly to pay patients' bills. She helps by paying rent/mortgage, utility bills, food certificates, and special dream requests. Run by volunteers out of the playroom in Kirsten’s home, this organization has helped many young families who were struggling financially. She has a huge heart and has made very special gifts to several patients living with a terminal diagnosis. As of March 2018, this organization has paid over $47,000 in bills for patients who are receiving cancer treatments. KM3’s 2019 numbers are not posted yet on the website, but the organization has given well over the reported 2018 numbers to date.
One of the many patients who experienced the generosity of the organization was diagnosed with ovarian cancer back in 2008 and recurred in 2014. The patient had the responsibility of caring for 10 family members and at the time of her recurrence was laid off work. She needed to apply for COBRA to continue her treatment without interruption. The patient was forced to make the decision to pay bills or buy food for the family. KM3 Project provided support through gift cards for groceries. The patient shared, “Thanks to the KM3 Project we have been at peace, we are paying our bills and it has given us time to get back on track.”
Help during immediate need: mother of a 6 1/2-year-old son who has only known his mom in this battle has stage IV cancer. Her fiancé lost his job and unemployment left a gap in their finances. KM3 made payments for her prescription drug insurance coverage, helped with rental payments on 2 different occasions and most recently paid her electric bill to keep the lights on.
Another impactful testimony was for a patient diagnosed with head and neck cancer. He had a family of 6 that he was supporting but due to his cancer had to immediately leave his job to start his aggressive treatment. KM3 stepped in and paid his mortgage for the first month of treatment so he could start treatment with a little less stress.
Kirsten’s social worker, Denise shares her thoughts. “Kirsten is a beautiful butterfly, who spreads her love to everyone she meets. She had incredible challenges in her journey with cancer and she found meaning in her suffering, fear and anxiety. Cancer turned her life upside down and through her resilience she was able to cope and turn a traumatic experience into something very beautiful. Kirsten founded the KM3 Project that provides financial support for patients and their families and financial support for research for children who have cancer. In her experience she had so much support to help her cope and she wanted other young parents living with cancer to have that same support. She hoped by offering substantial financial help it would ease the burden our patients are experiencing and give them hope, to endure their own experience and know there is a team of people who care. Kirsten’s love for life and people shines brightly from her heart and it motivates her to giving back to others. This giving back keeps offering healing for Kirsten and she is so much stronger today. I’m honored to share my thoughts of Kirsten who is my Hero of Hope!
As an oncology nurse navigator, the type of relief and support KM3 Project provides patients and families is priceless. There are so many unmet needs and often as a navigator it is very challenging to find resources to offset the financial toxicity that a cancer diagnosis brings. I am so proud of Kirsten that out of her pain she chose to respond in love. Out of her anguish sparked hope which has ignited a movement within her community to share hope and provide comfort to cancer patients and their families. To learn more about KM3 Project please visit the website http://thekm3project.org and view a video where Kirsten shares the birth of her non-profit http://vimeo.com/262903649.
“Since love grows within you, so beauty grows. For love is the beauty of the soul” ~ Augustine. Kirsten’s soul radiates LOVE. It is with great honor and pleasure that I nominate Kirsten Arbon for the Hero of Hope™ Patient Award. She is thriving demonstrating hope through action which touches cancer patients and families in the community she lives in and serves.
Blake Hornbrook’s US Army unit was stationed in Germany when he was diagnosed with testicular cancer in 2016. The 26-year-old was medically evacuated to Walter Reed National Military Medical Center in Bethesda, where I met him and his wife in the ICU following a complication of his retroperitoneal lymph node dissection. From the moment I met Blake, I knew he was one of the special ones. He often used sarcasm and humor to cope with the physical and emotional tolls of cancer, and this aspect of his personality always immediately allowed others to feel comfortable sharing their own cancer experiences.
Blake went through 3 rounds of chemotherapy and dealt with various side effects, ranging from severe nausea, to abdominal pain due to surgery, to hair loss, and digestion issues. Aside from the physical changes, Blake was also experiencing a huge loss of identity, as he went from soldier and medic to patient. He started attending the young adult support group held at the hospital, sharing his fears, frustrations, triumphs, and embarrassing moments, easily and readily. His willingness to be candid and vulnerable allowed others to follow in his steps, to feel comfortable sharing their insecurities and emotions. I watched as the group transformed from talking about somewhat common and sometimes superficial topics, to sharing much more profoundly about their greatest fears, their advance directives, and even their embarrassing bowel movements, from time to time.
As Blake completed treatment, he offered to be connected to any newly diagnosed patients, to answer their questions, point them to the best food at the hospital, or just listen to them as they processed all that was happening. He became an amazing support and asset to our young adult oncology program at Walter Reed National Military Medical Center. He came to the hospital to meet patients, encourage them to attend the support group, and help them navigate the experience from the position of someone who has truly been in those footsteps.
Later, Blake participated in the Ulman Foundation’s Cancer to 5K program, which is a free 12-week training program designed to help cancer patients and survivors take their bodies back from cancer and return to (or enjoy for the first time) running and/or walking. I heard from numerous coaches, volunteers, and other participants that Blake was the glue that held the team together and the personality who made it so much fun. He encouraged other survivors, even as he was working on his own endurance. He thanked the coaches and volunteers each practice and was the most enthusiastic and grateful participant on the day of his goal race.
Most recently, Blake participated in the Ulman Foundation’s Point to Point Experience: a run from Baltimore to Key West, leap-frog style, with about 30 other participants. Each day, he inspired the team with his story, determination, humor, grace, and kindness. In addition to serving as a role model for all who embarked on this journey, Blake also raised more than $5000 for the Ulman Foundation; these funds allow the organization to continue to support young adults with cancer and their families.
And as if he had not done enough, Blake has selflessly become a fertility preservation and IVF procedure advocate and expert. After dealing with his own fertility challenges following his cancer treatment, he and his wife Kelsey used IVF to become pregnant and their daughter Harper was born in March of 2018. Through each step of the process, Blake shared with those who had questions or curiosities and he continues to be an amazing resource for those seeking information or support within the military treatment facility system.
Blake is the type of cancer patient and survivor, soldier, husband, father, son, friend, and human who comes along once in a very long while. He is endlessly giving of his knowledge, time, warmth, and humor. As a patient navigator, I wish every newly diagnosed patient had “Blake” to walk alongside them as they faced treatment, side effects, fertility struggles, relationship challenges, emotional turmoil, survivorship, and beyond.
Blake is pictured at the Blue Jeans and Bow Ties Ball, the Ulman Foundation’s annual fundraising gala, alongside another survivor, who has become much more comfortable talking with others about his experience, thanks to Blake. He is also pictured crossing the finish line at the Pikesville 5K, where he ran his second Ulman Foundation Cancer to 5K race. I proudly nominate Blake Hornbrook for your Hero of Hope™ Patient Award and I can think of no person better suited for the honor.
Sharon Chappell is a credentialed, bilingual arts educator, a breast cancer survivor, and parent. Sharon has experienced multiple medical crises with her father, including non-Hodgkin lymphoma during her youth, heart transplant while a young adult, and terminal glioblastoma brain cancer last year. Sharon is the author of The Little Green Monster: Cancer Magic!, a story for families impacted by cancer. She has donated over 1,000 copies of the book since November 2018. Sharon is also a teacher educator at California State University Fullerton, where she specializes in social emotional learning, the arts, and inclusive school climates.
Sharon is a hero to many families impacted by cancer. Sharon's passion is to help children cope with the effects of cancer in their lives. During her 10 months of chemotherapy, Sharon found a lack of literature for her child to help explain how cancer would affect her and their family. To fill this significant need, Sharon wrote and published The Little Green Monster: Cancer Magic! for children affected by cancer.
Sharon raised money to donate books to thousands of children. She also conducts workshops for children and families to help them explore their feelings with artwork and play. Finally, Sharon organized a vast network of volunteers to make Little Green Monster stuffed animals to give to children.
In just one year, Project Director and Author Sharon Chappell has:
- Raised over $8000 to publish and print 1,500 books to donate to families impacted by cancer
- Received endorsement of Susan G. Komen Orange County
- Donated partial proceeds from book sales to their community programming
- Been named the Celebrate Literacy Author of the Year from the Orange County Reading Association
- Been selected as the Keynote Speaker for St. Jude's Nurse Navigator Conference
- Donated 1,500 The Little Green Monster: Cancer Magic! books across the nation to over 50 hospitals and other medical centers, cancer support community organizations, libraries, schools, religious groups, counseling centers, family resource centers, foundations, youth groups and camps, nurse and peer cancer navigators, and individual children and families
- Facilitated 15 Little Green Monster Project literacy and creative arts events with children impacted by cancer, other child audiences, teachers, family liaisons, university camp counselors, and peer cancer navigators
- Created the Little Green Monster To Go! (Book and Monster Stue Friend) Giving Program to support children’s emotional well-being during cancer treatment and recovery.
- Given thanks to Kids Konnected for co-developing the concept and ordering the first monsters
- Worked with 50 adult and child volunteers to sew Little Monster Friends for the Little Green Monsters To Go! program
- Created the DIY Monster Making Community Service program to support kids helping kids through sewing monsters
A summary of Sharon’s Little Green Monster project: THE LITTLE GREEN MONSTER: A BOOK AND MORE!
- Help parents and children talk about cancer diagnosis, treatment, survivorship and loss through the arts.
- Use the creative arts to process feelings and stress during the cancer journey.
- Make meaningful, new memories as a family during this difficult time.
- Gifting The Little Green Monster: Cancer Magic! book and Little Monster Friends to children impacted by cancer, and to the organizations that support them.
- Providing book readings and creative arts workshops to children impacted by cancer, in treatment and recovery.
- Working with children and adult volunteers to create Little Monster Friends, as a community service and gesture of kindness for children impacted by cancer.
Quality, healing, creative experiences should be accessible to all families regardless of ability to pay. Our activities are donation-based and grant-funded, thus we do not require payment from families impacted by cancer.
We are a volunteer-based project funded through the Handel Sunrise Foundation.
To see the extent of the work Sharon has poured into her projects to help children and families, see https://www.littlegreenmonster.org/