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Conversations can be hard, and having a conversation with a child or teenager who has been diagnosed with cancer can seem nearly impossible if worried about saying the wrong thing. Speaking from experience as someone who has been on both ends of these difficult conversations – I know that it can be uncomfortable, but it doesn’t have to be. When meeting someone who has just been diagnosed or is in active treatment for childhood cancer, it can feel as if you are walking on eggshells and you might not know how to ask questions about how they are doing. In all honesty, the person you are asking probably won’t mind your curiosity. I was diagnosed with cancer when I was fourteen; I was a freshman in high school and my biggest worry was which parent was going to take me to basketball practice. As time went on and treatment started, I could feel people around me start to be a bit more guarded when it came to starting conversations, especially when I had to leave my port tube in and wear it to school. Once this started to happen, the strange looks came with it. Most days it wouldn’t bother me because we were young and kids in high school can’t fully gather the concept of people going through treatment unless they have seen, experienced, or asked about it. What actually bothered me was when my teachers would stare at the tube that hung out of my chest. Through my entire cancer journey, I always preferred people to ask me why I had a tube in my chest rather than stare at me and make me feel like an outsider because of it.
To prepare for this article, I conducted an interview with a peer. We talked about what she felt were the hardest conversations to have, the questions she wanted to ask, and some subjects that she felt were hard to bring up when asking about my cancer experience. These were the six main points:
As a patient I never minded when people would ask what type of cancer I had been diagnosed with. There is a really good way to word this question in order to not sound disrespectful as well. Starting your sentence off with “If you don’t mind me asking” or “if you are comfortable telling me “, is a good way to go. Test the waters with the conversation and don’t start with this question right off the bat, this will make the person you are talking to feel like a human rather than a patient.
It is 100% okay to ask someone how they are doing, when it comes to the mental aspect of someone’s cancer battle. It’s also helpful to take into account how old they are. A teenager is easier to approach because they are able to put their feelings into words, but don’t push. Instead of diving right into the how are you doing mentally question, ask how they are and how treatment is going. If they are struggling a bit mentally they might bring it up to you. This open-ended question lets the person know that you care how they are doing without them feeling uncomfortable.
Not everyone fighting cancer will look the same. Everyone responds to their chemo and other therapies differently, as the side effects can present themselves in many different ways. Some will lose their hair, some won’t. I never lost my hair, but was always very sick. Over the years I received a lot of speculation on my diagnosis due to the lack of hair loss, even though internally I could feel the effects of the chemotherapy. If you don’t understand why some kids have certain side effects that others don’t, do some research! Approaching someone about their side effects is not always the best way to go, so it’s always encouraged to be more educated on cancer and cancer treatment.
A quick “how are you” is the best way to ask. Simple, sweet, and it’s easy to answer especially for the younger kids.
It’s better to not overthink when approaching these types of questions. “How is treatment going” works perfectly fine, and if you are confused on how treatment works it’s okay to ask about that as well. Older kids might explain their treatment plan if they are comfortable; In my experience I always preferred when people asked me directly, especially when I had the tube in my chest if they were confused.
The simple answer to this is no. At the end of the day, we are humans and having cancer should not be a reason to be treated differently. Make conversation about other things that are happening in the child’s life and bring up other topics than their diagnoses. When being diagnosed, most of our conversations involve treatment, so it’s a breath of fresh air to be able to talk about other things every once and a while.
Don’t over complicate these interactions! As long as you are respectful and mindful with how you ask questions and approach the conversation, you should be fine. Remember no matter the diagnosis their cancer does not define them.
This article was written by Emma, cancer survivor, NNCCF support recipient, Inspire Scholarship awardee, and NNCCF Intern
Each year, we award scholarships to childhood cancer survivors and young adults currently in treatment. Our foundation believes in young adults who have overcome adversity and are striving to achieve their academic dreams. Childhood cancer survivors inspire us with their resiliency and tenacity, and the Inspire Scholarship is one way that we can support them as they move forward through adulthood.
At the 2019 Inspire Scholarship Ceremony, David Wise, two-time Olympic Gold Medalist skier, presented about conquering what life brings. He has had physical and emotional peaks and valleys throughout his career, but he realized that his support system was essential as he celebrated his successes or overcame failures. Similar to the community that rallies behind a child with cancer, his team, the people around him that supported him, always had his back.
“You guys each have a team and you have a new weapon, you have overcome or you are overcoming this incredibly difficult adversity but on the other side you’re going to be stronger because of it,” Wise said.
Our Inspire Scholarship program awarded scholarships to 21 childhood cancer survivors and young adults currently in treatment. Through generous grants and sponsors, the program supports young adults affected by childhood cancer in achieving their dreams through higher education. Since the program started in 2012, we have awarded $416,000 in scholarships to survivors, and the funds have been applied to many fields of study from universities and colleges to vocational and technical schools.
One of the Inspire Scholarship recipients, Haley, is striving to become an oncology nurse. Through her cancer journey, she experienced pain, surgery, recovery and joy. She was moved by the idea of helping children in the same way nurses helped her through the good and the bad, “I would like to inspire others by being someone they can look to in times of need,” she said.
After completing treatment, Haley dedicated her studies to help other children affected by cancer. She recently celebrated her acceptance into the Orvis School of Nursing for the fall of 2019 and shared her joy on social media stating, “All of the hard work has paid off. God truly does have a plan and there is a light at the end of every tunnel. I can’t wait to begin this journey and be one step closer to helping kids with cancer.”
Wise spoke of an analogy that helped him through his life and career – He compared overcoming adversity to building a jump. Adversity represents the blocks of snow made out of all the hard stuff, which builds up to create the foundation of a ramp. “What I love about that [analogy] is that everything that you survived or that your family has survived or someone close to you has survived just becomes another block you can build your jump out of,” said Wise. “And the more blocks you build, the more blocks your jump has in it, the greater your trajectory.”
Wise wrapped up the ceremony with words that exemplify the accomplishments of these survivors as they step into a different journey in life and build their own careers. Wise said, “There’s nothing I’m more excited about than telling you guys that because of what you’ve been through you can accomplish more than anybody else. I just want to empower you guys with that message and I want to thank you for your journey because it’s important and it’s powerful.”
With every scholarship we give, we know that a child with cancer has more opportunity to learn and reach higher dreams. To use his metaphor, we know that these survivors have earned every block carved out through their journey with cancer. And yet, we are grateful we can help propel them forward to achieve greater things.
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A special thank you to the donors who directly support this program: Charles H. Stout Foundation, Charles Mathewson Foundation, DiRienzo Foundation, Jet Nevada Fulfillment Center, the Trowbridge Family, the LeSourd Family, U.S. Bank, Morgan Stanley for Leonard Wohletz, and Wood Rodgers.
The significance of the toy closet goes beyond the smiles we see in our office when a child picks out a toy. The toys we provide to children battling cancer and their siblings, are a reward for their bravery. Many kids know that when they leave their home for treatment or for a doctor’s visit, they can stop by our office and check out the toy closet.
Our staff finds little moments of gratification – as should the donors who help keep it stocked – when a child walks through the door and beelines for the closet. They deserve it. A childhood cancer diagnosis is a family diagnosis and the whole family is affected by the demanding treatment schedules, upheaval of everyday life, and the emotional burden it causes. A child battling cancer and their siblings should be rewarded for their bravery.
When we open both closet doors, it only takes a few seconds before each child has a toy in hand. They may teeter between choices for a few minutes but resolve to pick their favorite in the end. Sometimes we receive requests to save a toy “for next time.” A truly heartwarming experience for our staff is when a child stops in the office and asks to also pick out a toy for their sibling.
Toys provided have a greater significance to families than a way to amuse a child during a car ride to the hospital. The toys help serve an escape from the trials at hand.
“You have been something for [our son] to look forward to each time he gets treatment because he knows that after he is brave at the clinic he gets to go to NNCCF and pick out a new book or toy.”
A word that has been tossed around by parents to explain how the toys help the child through a tough hospital stay is “bribe.” We do not typically use that term because we think of the toys as a reward, but when you’re a parent trying to calm your screaming child (every day, week, etc.) who is terrified of needles – if a toy is a bribe, let the toy be a bribe.
Parents have told us that they have utilized toys with multiple components to help go through the steps of treatment. There are many steps in a “typical” treatment day. The process can range from having blood drawn, port accessed, medication given, vitals taken, etc. For example, the LOL Surprise Dolls (appropriate for children ages 5 an up) have multiple toys individually packaged in the surprise container. One mom told us that as they move through each step of the process, she will give her daughter a toy to open. Then when the toy is complete, the little girl plays with her reward as she waits for her infusion to be over.
Recently, we provided a large basket of toys for a family headed in for surgery and a long hospital stay. The father expressed his gratitude about the toys being a “life-saver.” As his child was prepped for surgery, cared for after surgery, prepped for an infusion, etc., he was able to emotionally occupy his child who didn’t understand why she couldn’t get out of bed, why everything hurt, and why they weren’t at home.
We receive many toy donations during the holidays, however around this time of year we need donations of new toys for all age groups. Each year at the end of spring, we experience a bit of a toy-cabinet famine. There’s a little more space between each toy – the misfit toys of Christmas past sit on the shelf, waiting to be chosen (queue “The Most Wonderful Day of the Year” from Rudolph and the Island of Misfit Toys).
Throughout the year, we receive toys from individual donors, community partner toy drives, and our Amazon Wish List. One of our Community Partners, Learning Express Toys in south Reno, has a unique toy drive throughout the year for our foundation. At the store, they keep a bin behind the counter and offer a discount for any toys purchased for our foundation. Once the bin is full, they give us a call.
We have toys for every child – infant to young adult. We tend to stay away from plush toys, as they are hard to wash in a hospital setting. Many of our families stay in the hospital for weeks at a time and need toys that can be cleaned in a sink or with a disinfectant wipe.
As we provide financial and emotional support for these local families in the fight, we are grateful that the toy closet is one small way that we can put a smile on their face. If you would like to donate toys or host your own toy drive, please contact us! You can check out our Amazon Wish List here.
Press release –
(Reno, NV) – Northern Nevada Children’s Cancer Foundation (NNCCF) launched its Hope for the Holidays program which will continue through the month of December. The Hope for the Holidays Program helps provide gifts for families in northern Nevada affected by childhood cancer.
“The holiday season can be really tough for families dealing with a childhood cancer diagnosis. Our Hope for the Holidays program is one special way our community can help support local children and bring joy to their family during a difficult time,” said NNCCF Executive Director Shirley Folkins-Roberts. “A childhood cancer diagnosis is a family diagnosis, and we are dedicated to alleviating the financial and emotional strain that affects these families.”
All donations to NNCCF will be matched dollar-for-dollar by the William N. Pennington Foundation, up to $500,000, now through February 19, 2021. The matched dollars will benefit NNCCF’s Family Assistance Fund during the 2021 year, providing financial and emotional support to local families battling cancer.
More than 40 families in the fight against childhood cancer need to be matched with a sponsor this holiday season. Individuals, groups and companies are encouraged to donate to the program.
To help a local family follow 3 steps:
Visit www.nvchildrenscancer.org/hope-for-the-holidays for links to register and donate, or email Kelly@nvchildrenscancer.org, or call (775) 825-0888.
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The Northern Nevada Children’s Cancer Foundation is celebrating 20 years of providing help, hope and courage to local children battling cancer. NNCCF is the only non-profit in the region solely dedicated to childhood cancer, and has provided $5.6 million in direct financial support to families. NNCCF’s programs and services include the Family Assistance Fund, Inspire survivorship program, Hope for the Holidays program and emotional support through end-of-treatment celebrations and family activities. For more information, call (775) 825-0888, visit www.nvchildrenscancer.org or follow on social media @NVKidsCancer.
As we embarked upon our 20th year of providing emotional and financial support to local kids, our youngest cancer warriors met some of the greatest challenges they have ever faced. Not only were they fighting for their lives battling cancer, but the Covid-19 virus added additional fears such as the possibility of serious illness and complications due to weakened immune systems.
Childhood cancer did not stop for the pandemic and neither did our supporters. You, our community, pulled together your limited resources to continue to help this vulnerable group of children and their families already facing economic difficulties. Through your generous individual donations, support of virtual and live events, alternative and creative ways to raise funds for families, as well as the dedication of the community’s foundations, you showed incredible compassion and empathy for their isolation and fear.
Because of the strong foundation that you have helped build, NNCCF was able to support our families financially at full capacity. In twenty years, this small organization of passionate and committed staff, volunteers and donors has grown with strength and determination to support families during difficult times. Thank you!
Shirley Folkins-Roberts
Executive Director and Co-Founder
Brandan Koehn
Board President
[button text=”2020 Annual Impact Report PDF” link=”https://www.nvchildrenscancer.org/wp-content/uploads/2020-Annual-Impact-Report.pdf”]
If you would like a printed copy of the 2020 Annual Impact Report, please email Lindsey@nvchildrenscancer.org
On January 15th, 2021, I rang the bell that I believed signified the end of it all. The end of the battle, the struggle, the chaos, and the pain. I believed this bell let everyone know about my victories and my accomplishments throughout this hectic journey. Finally, I believed this bell was a ticket. Not just any ticket, but a ticket that allowed me to escape the hospital that had been my life for ten months. Maybe I was naïve in thinking that this bell was magical and all powerful, but it gave me hope. I would walk past this bell every time I got the treatments that would physically and mentally destroy me, knowing that one day, I would ring it. I imagined myself upon a great hill with this bell in my hands screaming, “VICTORY!” but, when the day finally came, not much changed.
I had already endured five surgeries, twelve blood transfusions, seventeen rounds of chemotherapy, and two months of radiation. I had already “passed” my scans and received the “no evidence of disease” text that my mom had stayed up all night praying for. What people don’t understand about cancer, and especially childhood cancer, is that the battle doesn’t stop after the bell. People hear about the hospital stories while receiving chemo or the “fun times” down at the radiation clinic. Yet, few people take notice to the fight that takes place after chemo and radiation, or as my one of my fellow cancer survivors called it, the life after the bell.
This phrase, “the life after the bell,” signifies more than just trying to get back to normalcy because cancer survivors will never be “normal” again. We will always wonder about relapse or having to return to the hospital. We will battle aftereffects of the toxic drugs that were used to save our lives. The thought always in the back of our minds that our days are now limited. The main drug used in chemotherapy for many different types of cancers, Doxorubicin affects the heart very negatively. Me and my fellow teenage cancer survivors have hearts of 30 to 40-year-olds thanks to this treatment. We fight day after day to remain healthy. There’s an ongoing treatment after the BIG treatment. We keep going in for scans and blood work every three months. We take numerous pills to keep that monster out of our bodies. We spend hundreds of hours doing physical therapy to regain as much movement as we can. For some of us, all these precautions and treatments aren’t enough. Some of us, like my mentor and friend, Katie, find a way to relapse. She is now in her second battle with Ewing’s Sarcoma.
We live life after the bell differently then we lived before. We make the most of it because we all know that life may change in an instant. My friends tell me I have too much energy when really, I have no energy, but I keep going. I want to keep living and keep experiencing life. I am blessed to wake up every day and be able to move freely without cancer holding me back. I go out every day for those who can’t. I speak for all the children that can’t speak for themselves.
I was recently a part of a Capitol Hill Day project with the Northern Nevada Children’s Cancer Foundation that allowed me to speak to some of our state representatives, to try and raise funds for childhood cancer research. Events like these are very important when it comes to raising awareness for the struggles that innocent kids go through.
Although cancer sucks, it has brought some amazing things into my life. It has made me appreciate the little things and to be more carefree. To be almost stripped away of your life allows you to see the bigger picture. I realized that what matters in life, it isn’t being the best basketball player or getting the best grade in the class. What matters is truly living and making memories with those you love. My generation struggles so much over things that don’t matter like our phones, our grades, or who has more followers on Instagram. My experience has allowed me to live life better than I did before, and for that, I appreciate what I’ve learned from this journey. Now I will continue to keep making memories and living for those who can’t. The best life I could possibly live, will be the life after the bell.
Landen
Press Release –
(Reno, NV) – Northern Nevada Children’s Cancer Foundation (NNCCF) hosted a parade ceremony on Tuesday, August 11 to honor of 28 childhood cancer survivors receiving the Inspire Scholarship.
“The Inspire Scholarship ceremony parade was a wonderful way to celebrate with our recipients. It was exciting to see 18 of our 28 recipients, especially after these last few months, and their enthusiasm during the ceremony” said NNCCF executive director, Shirley Folkins-Roberts. “We are incredibly proud of these young adults as they pursue their dreams.”
These scholarships assist with continued education at a university, college, vocational or technical school.
Scholarship recipients who were assisted by NNCCF accepted their scholarship in the NNCCF parking lot under a balloon arch. This social-distancing parade is in lieu of the Inspire Scholarship Ceremony event that typically celebrates the recipients and donors with a reception and lunch.
“We are very grateful to the board and staff at NNCCF for their support during Shannon’s cancer treatment and recovery through this exciting time for her pursuing her college degree at UNR,” said Kathleen, mother of Inspire recipient.
NNCCF has provided $5.3 million in direct financial assistance to local children battling cancer in 20 years. Through NNCCF’s Inspire Scholarship, more than $465,000 in scholarships has helped childhood cancer survivors and young adults affected by cancer to pursue career dreams.
The Inspire Scholarship program is supported by the generosity of C. and J. Panattoni, Dwyer-Stowe Charitable Fund C/O Fidelity Charitable, Earl and Elizabeth Ash Foundation, Estelle J. Kelsey Foundation, John Ben Snow Memorial Fund, S. Colfer, S. LeSourd, Winchester Family Foundation. And Thank You Ma’am Reno supported an additional award for recipients to receive books and materials.
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The Northern Nevada Children’s Cancer Foundation is the only non-profit in the region solely dedicated to helping local children and their families affected by childhood cancer. NNCCF’s programs and services include the Family Assistance Fund, Inspire survivorship program, Hope for the Holidays program and emotional support through end-of-treatment celebrations and family activities. For more information, call (775) 825-0888, visit www.nvchildrenscancer.org or follow on social media @NVKidsCancer.
The Inspire Scholarship, which began in 2012, has awarded $465,000 to childhood cancer survivors in the northern Nevada region. In 2019, the program awarded a scholarship to 23 young adults pursuing higher education, vocational, or technical training. The Inspire Scholarship program has encouraged the community’s youngest cancer survivors to follow their dreams and become the strong and educated young men and women of our future generation.
Since the initial launch eight years ago, the Inspire Scholarship has helped with career dreams of applicants to become nurses, pilots, architects, beauticians, and much more. The Inspire Scholarship helps young adults who are currently in the fight, or who battled childhood cancer as a child, to see beyond their diagnosis and into the world of limitless possibilities.
Victoria Matthews, a recent Inspire applicant and childhood cancer survivor, wants to do more for the community now that she is cancer-free. Her ultimate goal is to become a pediatric hematologist-oncologist, and her cancer journey only solidified her dreams to help other kids just like her. In November of 2015, Victoria was diagnosed with cancer and immediately began a nine-month chemotherapy regimen, which took a toll not only on her body but her mind. “I would say that my greatest need before, during, and after cancer has been emotional support,” Victoria said.
The Inspire Scholarship provides emotional and financial support for young adults like Victoria who have been through serious physical, emotional, and financial challenges that may arise during the duration of their treatment process. Victoria’s aggressive chemo schedule forced her to take time away from school to focus on her treatment. She felt she could no longer live a normal teenage life because she missed out on everything due to her diagnosis.
Victoria’s battle with childhood cancer was one of the toughest times in her life, but she continued to fight so she could spend the rest of her life inspiring those around her. When she was just five-years-old, Victoria knew she wanted to be a doctor, and her cancer diagnosis only motivated her further to achieve her dreams. “I just really want to help kids,” Victoria said. “It’s something kids shouldn’t have to go through, but if I can help them, even just a little bit and be the kind of hero my doctors and nurses have been for me, that’s my goal.”
Victoria’s cancer journey taught her to appreciate life and never take anything for granted. She is currently studying cellular and molecular biology at the University of Nevada, Reno to accomplish her aspiration of becoming a pediatric oncologist.
From the moment of a child’s diagnosis, NNCCF works with the family to meet their needs. This can range from financial support for medical bills, travel to and from treatment, and educational support through the Inspire Scholarship or E-SMART programs. The Inspire Scholarship ensures that the child never gives up hope for a bright future.
The 2020 Inspire Scholarship application deadline is right around the corner, and all applications are due May 8, 2020. Young adults are encouraged to apply for the scholarship if they meet the criteria below:
Article By:
Allison Kibbe, NNCCF Marketing Intern
Thanks to your support in 2019
As our community and world face one of the most deadly health crises in a century, we at the Northern Nevada Children’s Cancer Foundation (NNCCF) would like to thank you for helping us care for our youngest cancer warriors. It is with incredible gratitude for our northern Nevada community that we say how inspiring it has been to watch and be a recipient of the generosity of our community in 2019. Thank you to our donors, supporters, community partners and friends who contributed in 2019 to our mission.
If you would like to request a printed copy of the annual report, please email Lindsey@nvchildrenscancer.org.
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By Lindsey Gross
Northern Nevada Children’s Cancer Foundation (NNCCF) has a broader definition of “child” than most foundations. While NNCCF helps many children under the age of 18, the foundation also provides financial support for young adults under the age of 21*. Unfortunately, some families with young adults battling cancer are unaware that they are eligible for assistance. NNCCF aims to inform the community that the foundation has resources and support available for young adults.
Johnny Hartman, 19, receiving chemo treatment for lymphoma
One family recently learned that their son was eligible solely by coincidence. John Hartman heard on the radio that NNCCF was hosting radiothon at Scheels, the foundation’s 12-hour finale to a five-month campaign raising awareness and funds to help local children in their fight against cancer. John is a father of twin 19-year-old boys, Johnny and Richard. Johnny, a sophomore at CalPoly State University, was recently diagnosed with lymphoma. John was touched by his family’s experience and decided to make a donation to NNCCF. Unbeknownst to him, he walked into what would become a strong support system for his own son and family.
That night the Hartmans filled out the NNCCF Family Assistance application. NNCCF has the capability of helping young adults who are currently in treatment or in follow-up care for cancer. Many young adults are not eligible for assistance from organizations that specialize in helping children because the age of adulthood in the United States is 18. At NNCCF, as long as a young adult diagnosed with cancer submits an application before the age of 21, they are eligible for emotional and financial assistance until the age of 25.
In 2016, 144 families received support through NNCCF’s Family Assistance Fund and 19 percent of those children were over the age of 18. NNCCF expanded assistance to this older population three years ago to run parallel to its Inspire Survivorship Program that offers services such as scholarships and vocational training for young adults. Through generous grants, NNCCF afforded 15 cancer survivors $57,319 in scholarships through the Inspire Survivorship Program last year. This program offers survivors support and encouragement in the pursuit of achieving their dreams.
NNCCF provided support for the Hartmans as Johnny started aggressive chemotherapy back in January. The family is celebrating as Johnny recently completed his final day of chemotherapy last week, and is hopeful his next scan will continue to show no active cancer in his system. Johnny is ready to get back to normal life and resume studying to become an architect.
The day John walked into Scheels and met the NNCCF staff, there was one thing in particular that stuck with him. It was a response from NNCCF’s Executive Director Debbie Strickland upon hearing his family’s story: “It’s our turn to help you.” John was overwhelmed by the positivity and support he received after speaking with the staff and learning that his family was eligible for assistance. The Hartmans are eager to have Johnny healthy and to also give back to the foundation. One could say it was a bit of fate or a stroke of luck that John decided to give a donation that day. He may have never known that his son was eligible for assistance. NNCCF hopes to help all families with children in the fight against cancer so that they too can have the care and support system the Hartmans found.
*As of 5/1/2019 the NNCCF age cap has moved. NNCCF now serves young adults facing cancer until their 26th birthday.
The Northern Nevada Children’s Cancer Foundation is the region’s only local nonprofit solely dedicated to serving local children and their families affected by childhood cancer. NNCCF’s programs and services include the Family Assistance Fund, Inspire survivorship program, Adopt-a-Family program and emotional support through counseling and family activities. For more information, call (775) 825-0888, visit www.nvchildrenscancer.org or follow on social media @NVKidsCancer.
