775-825-0888
3550 Barron Way #9a • Reno, Nevada 89511
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
*Update 3/18/2020 – Our office is working remotely. However, families can still call the office at (775) 825-0888 to receive assistance. At this time, our team is making every effort to ensure local children battling cancer and their families receive the financial support and resources they need today, tomorrow, and until they are cancer free. Thanks to our incredible community and their support throughout the year, we are able to continue to serve our families at full capacity.*
Dear NNCCF community,
We are modifying our open-door policy due to the recent development with the coronavirus (COVID-19). Our office will continue to operate Monday through Friday, 9am to 5pm, however by appointment only for families, donors, supporters, etc.
We will not limit our services to families in any way, but our goal is to limit direct contact with families and children who may have compromised immune systems. The health of our families, children, staff, and community is our highest priority.
Please consult your healthcare provider and Centers for Disease Control and Prevention (CDC) guidelines for any additional questions regarding influenza or other respiratory illnesses.
It is our promise to keep you updated on any changes to our appointment-only policy as we continue to monitor the situation.
NNCCF families, please contact Brigette@nvchildrenscancer.org to make an appointment.
For all other appointments or questions, email Shirley@nvchildrenscancer.org or call the NNCCF office (775) 825-0888.
Thank you for your understanding,
Shirley Folkins-Roberts
Executive Director
Dear NNCCF Community,
During these unprecedented times, many of our partners and supporters are facing challenges and significant change. Our foundation knows one thing very well – hope is the most powerful tool. When a child is diagnosed with cancer, a family’s world is flipped upside down. The family bands together and faces the unknowns with the hope of one day being cancer-free.
I am incredibly grateful for your support and that of our generous community. Over the last 20 years, you have helped build NNCCF with a solid foundation so that we can continue to serve our families at full capacity. Because of you, our foundation can ensure that every child battling cancer has the financial and emotional support services they need right now.
I am certain that there will be more change, but for the better. We have seen the kindness in our community and are grateful to operate knowing we are braving this storm with you. We appreciate our partners and supporters for their work in our community and hope that you stay healthy and safe.
We are in this together.
Shirley Folkins-Roberts, Executive Director
This November NNCCF is celebrating the childhood cancer caregivers in our community. Caregivers for children with cancer can be parents, siblings, family members, friends and neighbors. They come from all walks of life and put their time, love and energy into helping a child who is battling cancer. They are truly heroes and deserve a great amount of gratitude and respect.
The role of a family caregiver is very demanding and can be very stressful. Children with cancer experience long hospital stays, repeated clinic visits, emergency room visits, quarantined days at home, travel to and from treatment and much more. Caregivers manage all of the stresses of caring for the child – making sure they are getting the treatment they need to beat cancer – all while managing their own life, needs and responsibilities.
There are many ways contribute or help a family with a child battling cancer. Meal preparation, transportation, light housekeeping, care of siblings and similar services help lift some of the burden off of these families. Allowing a caregiver to take a break – even if just an hour a day – lifts spirits and helps them feel refreshed. Supporting caregivers and helping with the small things can make a big impact.
This month, thank a caregiver! Make sure you tell them that you are grateful for all they do, and if you can, offer a token of your gratitude (bring them a coffee or buy them lunch). THANK YOU, to the family caregivers helping children with cancer, NNCCF appreciates you!
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.
We launched our first Amazon Wish List to provide toys for local kids affected by childhood cancer. Amazon’s extensive catalog makes it easy to find toys suitable for children experiencing long or frequent hospital stays, and our wish list gives you an insight into what we need throughout the year.
Wish lists on Amazon function similar to wedding registries – we update the items needed based on popularity, season, age range, etc. Using the Amazon Wish List makes donating toys easier than ever. View the list and simply click “add to cart” and it will ship directly to NNCCF.
There are many popular toys on this list (ex: Toy Story Legos, Paw Patrol toys) and more that we have yet to discover. Our Amazon Wish List can also serve as a guide for your next toy drive or individual donation. We will always accept new toys even if they are not on this list.
On our Wish List, you will find our selection of trending toys that can be used by children in treatment and an array of items that can entertain children of all ages. The list is practical and helps give insight to the needs and wants of our families. However what the list doesn’t display is how important these toys are to the children, siblings and parents. “The toys we provide have a greater significance to our 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.” Read more about the importance of our toy closet to local children battling cancer: The Toy Closet: the reward, the bribe, the cabinet of smiles.
Many business and individuals host toy drives to support our nonprofit during the year. One of our favorite types of fundraisers are “in lieu of Birthday presents.” We have had children, inspired to help kids like them, run toy donation drives in lieu of receiving birthday presents. The giving and kind hearts of these children are inspiring to model after.
One of our Community Partners, Carrington College held a toy drive in February in honor Logan, a child currently in treatment. For the entire month, they had a donation station set up and encouraged students and professors alike to bring in a toy for a local child battling cancer. The results were astonishing. Each basket was packed to the brim with toys. The Carrington College community came together and made a donation of toys and other goods valued more than $1,000.
Community Partner toy drives like this help support our foundation and bring smiles to the children we serve. There are a few simple steps to host your own toy drive for your business, group, church or school.
We are grateful for the donors that provide for our toy closet throughout the year, especially during the summer months. Have you heard of the term Christmas in July? We are dreaming of Santa’s little elves barging through our doors with bags of toys for girls and boys! Every year towards the end of spring, we call on our donors and community partners to help stock the shelves, and we are hoping our newly created Amazon Wish List helps provide helpful ideas and an opportunity to do so.
The Covid-19 crisis has become the greatest healthcare challenge in modern history. As the number of people infected increases across the U.S., childhood cancer patients and their families are suddenly facing new challenges to an already devastating disease.
First and foremost, cancer patients are among those at the highest risk of effectively fighting a virus. They face the possibility of serious illness and complications compared to someone who is healthy because of weakened immune systems from treatment. The majority of families who have a child in treatment for cancer are on high alert and experiencing a surge of stress and fear for their child’s life.
Childhood cancer does not stop for Covid-19 and patients still need treatment. Doctors and patients are facing the difficult challenge of evaluating the risk of missing treatment against the possible exposure to the virus. If it is decided that treatment is necessary, families must leave the safety of their home and travel to hospitals and clinics. Travel has become increasingly difficult and can heighten the risk of exposure. With airline flights not an option at this time, some northern Nevada families are driving up to 10 hours, one way, to receive the specialty care necessary for their treatment.
If accommodations are needed while traveling for treatment, families have been struggling to find safe and affordable alternatives as many locations of Ronald McDonald Houses and hotels are closed due to the pandemic. Once patients are at the hospital, social activities and programs have been canceled and they are facing strict isolation and loneliness. Most hospitals are only allowing one support person to accompany each patient, so families are facing the difficult decision of who will stay with the child.
In northern Nevada, the economic strains families are facing due to Covid-19 is extremely high. Many families we serve are out of work due to the closures of casinos, bars, restaurants and other tourism fed industries. We have seen a drastic increase in requests for assistance with groceries, utilities, rents and mortgages.
NNCCF is also facing a severe decrease in donations due to the economic impact and stay at home order. In just one month, two of our most successful community partner fundraising events were canceled resulting in a $100,000 loss to the organization. With the uncertainty of the future, it is probable that more fundraising events will be forced to cancel and the organization’s revenue will be greatly reduced.
Connecting our families, young adults, adolescents, and kids of all ages to facilitate relationships has always been a dream of the founders and staff at NNCCF. This year, the challenge of physical interaction at our monthly events has made this goal more difficult to achieve. But, we have come up with new and creative ways to connect our youngest cancer warriors. Drive through events such as our Halloween Costume party, Spring Fling basket pick-up and Inspire Scholarship ceremony allow families to get out and have some fun with our staff and other families from a distance. Of course our drive through bell ringing ceremonies have been exciting this year as well. On a warm summer evening, NNCCF and Peterbilt also hosted a drive-in movie for our families.
Our children and young adults have also formed relationships this year supporting each other through the cancer journey. At our Know the Gold Radiothon in February we were inspired by the bond and friendship three young women formed through their mutual cancer experiences. Pictured here is cancer survivor and new member of Renown Oncology nursing staff, Haley, supporting her friends in the fight, UNR students, Emma and Katie. High school sophomore, cancer advocate and survivor, Ivy, enjoyed helping Felina play a game at the Radiothon. The comradery that these experiences create and the opportunity to build friendships with other childhood cancer warriors can be so valuable during their very challenging journeys.
On February 19th we celebrated the 10th annual Know the Gold Radiothon hosted by Scheel’s with our partners at Cumulus Media. The event marked a special occasion, as it was the finale to the six month long Know the Gold fundraising campaign with a goal of $500,000 to be matched by the William N. Pennington Foundation. Our supporters topped all records and exceeded the goal by $55,000, thanks to the last minute additional matching goal from Panattoni Development and Alston Construction.
Know the Gold is a grass roots community fundraising campaign made of up over 1500 small and large donations. This year it included funds from virtual events like wine tastings, mask sales, golf tournaments, Doorstep Discos, and more! We cannot thank this incredible community enough for all they do to support us and each of you who helped us reach and exceed our goal!
www.nvchildrenscancer.org/KnowtheGold
Kelly Stoll, Programs and Services Coordinator
One of the first smiles our families see at NNCCF is that of Kelly Stoll. Kelly joined the NNCCF team 18 months ago, gracing the office and our family’s experiences with her love of theater, music, Disney and celebrations. This year, Kelly has helped create alternative opportunities for our families to get out of the house with a safe and fun option, including a drive-in movie night at Peterbilt. Kelly makes family support a top priority and will go to great lengths to make sure a family has the resources they need. Thank you Kelly for the sunshine that you bring to the NNCCF Team and our families.
Baseball and sports fans alike had a special experience as award winning San Francisco Giants broadcasters Mike Krukow, Duane Kuiper, Jon Miller, and Dave Flemming shared stories and memories on a virtual stage February 10th. Our very own, Kristen Remington, 2 News Evening Anchor, emceed the evening. Adding to the line-up was San Francisco Giant, multiple World Series champion and MVP catcher, Buster Posey and his wife, Kristen. Both the Posey family and the Giants organization helped promote the virtual event appealing to fans in Nevada as well as the Bay Area.
Over 300 fans had fun and were entertained in the comfort of their homes while raising much needed funds and awareness for pediatric cancer. A Giant Event for Childhood Cancer will benefit NNCCF and local children, along with supporting childhood cancer research through the Posey Family Research Grants. Save the date for our live in-person event November 10th, 2021.
Tournament of Hope, Golf Tournament – September 20th
Dozers & Dirt – September 25th
A Giant Event for Childhood Cancer – November 10th
All In for Childhood Cancer, Poker Tournament – Date TBD
Alston Construction • Ames Construction • Bonanno Concrete • Desert Fire Protection • Ferroni Foundation • Granite Construction • Heath Foundation • JAG Plumbing • LP Insurance Services • MDB Trucking • MNG Partners • Oxborrow Trucking and Landscape Materials • Panattoni Development • Panelized Structures • Patriot Contractors, LLCR • HP Mechanical Systems • Sierra Nevada Construction • Tectonics Design Group • The Medical Profession • The Phillips Family Foundation • Vasko • Victory Woodworks • Western Nevada Transport
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 April 27, 2021, NNCCF helped make a difference in childhood cancer funding and research by participating in the virtual 2021 Childhood Cancer Action Day with the Alliance for Childhood Cancer. We joined more than 250 advocates from 37 states to ask Congress to fully fund the STAR Act, the most comprehensive childhood cancer bill in history, for the fourth straight year.
Due to our collective efforts and advocacy, the House Appropriations Committee set aside $80 million for childhood cancer research programs in 2022 which fully funds the STAR Act. It is a huge step in the federal funding process and we will continue to make childhood cancer a national priority.
NNCCF staff and families virtually met with members and staffers in the healthcare jurisdiction to urge this support. In attendance were NNCCF survivor Kalia and her mom Jenna, survivor Landen and his parents Debbie and Craig, Tiffany, a mother of survivor Felina, and survivor Katie and her mother Lynn. NNCCF was able to meet with Rep. Amode staff, Rep. Lee, Sen. Cortez Masto and Sen. Rosen staff.
During the meetings, Debbie, Landen’s mother, urged representatives to continue support, “Please help us fight this plague that is cancer and give our children promise for a better life; allow them to grow and fulfill their dreams,” she said.
Landen was diagnosed with and aggressive bone and soft tissue tumor in February 2020. During ten months of intense treatment a small list of what he endured included 34 weeks of chemotherapy, 28 radiation treatments, more than 12 blood transfusions, five surgeries, five months with an open wound on his shoulder and four emergency trips to the E.R.
“Landen is a fighter. He is the epitome of grace, strength, and courage, he is our hero. And he, like all other children impacted by this horrible disease, deserves a future,” said Debbie.
1 out of 264 children will be diagnosed with childhood cancer in the United States, before the age of 20, and because of the treatments they received, by age 50, more than 99% of childhood cancer survivors have a chronic health problem and 96% have severe or life-threatening conditions.
“We cringe every time Landen’s oncologist reminds us that due to his treatment Landen at 16-years-old has the heart of a 35 to 40 year old,” said Debbie. “Federal funding for databases and research is so important for these children with these rare diseases. Without this funding doctors will continue to simply prescribe the same toxic treatment that fails to save enough children and leaves those that do survive with lasting effects.”
On June 5, 2018, the STAR Act, was signed into law. In the last three years, Congress provided $30 million each year to fund the programs created by the STAR Act. The STAR Act stands for: Childhood Cancer Survivorship, Treatment, Access and Research. “It expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors,” said the Alliance for Childhood Cancer.
NNCCF recognized the need for more advocacy and research to find a cure and has advocated at each Childhood Cancer Action Day on Capitol Hill since 2006.
