Please join us in congratulating our March Community Member of the Month, Kehl. He was introduced to NNCCF when his daughter Kylee was diagnosed with cancer, and he has been carrying on Kylee’s Wish ever since. Kylee’s Wish began with a heartfelt conversation between a father and his daughter, sparking a fundraising journey toward research and one day a cure. “Being the smart little cookie that she was, she had an inkling that she might be going home prior to me going home, so with that, she turned the tables back on me and said, Dad, I want you to fight cancer for the rest of your life as well. So that’s what we honor with our t-shirts and team at (Shave for the Brave). That’s really what her wish was, to continue on fighting for other even if she wasn’t going to be here on Earth.”

Driven by Kylee’s heartfelt wish to protect other children from the pain of cancer, her father, Kehl, along with family and friends, formed Kylee’s Wish — a team dedicated to making a difference. This year marks 18 years of unwavering commitment, raising an incredible $768,000 for childhood cancer research. Read Kehl’s interview below:

How did you first get connected with NNCCF?
They supplied support, knowledge and resources when my family needed it fast.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?
Great folks that have a really tough job, they inspire me to do better.

What is one thing you’ve done for NNCCF that you’re proud of?
Bring others into the fold that grow the community involvement to support NNCCF.

Please join us in congratulating our February Community Members of the Month, Jeff and Karen. Jeff and Karen, along with their children Noah, Aila, and Lily, have volunteered hundreds of hours and raised tens of thousands of dollars for the fight against childhood cancer. They are truly heroes for northern Nevada children and their families. Read Jeff and Karen’s interview below:

How did you first get connected with NNCCF?
In another life, Jeff was on the radio and looking for a worthwhile LOCAL charity to be involved with and promote. Jeff stopped by the NNCCF office to offer his assistance (I think they thought he was crazy) and we have been helping ever since. As Jeff got involved, opportunities became available for our entire family to get involved in different capacities.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?
In the midst of an unimaginable diagnosis, NNCCF steps in to walk alongside the family and lighten their load so they can focus on the most important thing – their child. We aim to offer our unique gifts and talents to support NNCCF in that mission. Being able to get involved in various events, walk alongside several families, and be connected with the many ladies of NNCCF over the years has been a huge blessing for our family.

What is one thing you’ve done for NNCCF that you’re proud of?
Starting the Green for Gold St. Baldrick’s team, being a part of the committee of the Big Dig which has now become Dozers & Dirt and a huge fundraiser for NNCCF, incorporating the Washoe County Sheriff’s Office into NNCCF fundraising efforts and getting all of the WCSO vehicles to display NNCCF gold ribbons, meeting so many amazing kids and their families.

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:

1. Do you feel comfortable asking what the person’s diagnosis is? How would you word your question?

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.

• When you want to ask how your friend or family is doing mentally, how do you go about doing this? Is it hard to answer this question when people ask it?

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.

• It can be confusing when someone is not visibly sick and you don’t completely understand how treatment works but want to ask about their diagnosis.

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.

• How would you ask a child how they are doing mentally or physically?

A quick “how are you” is the best way to ask. Simple, sweet, and it’s easy to answer especially for the younger kids.

• I’m curious to how treatment is going and wondering how to ask about it.

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.

• Should you talk to someone who has cancer differently than someone who doesn’t?

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

 

 

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