The RiderGirl blog is dedicated to sharing stories about childhood cancer.
When a child touches you,
It’s the gift of a lifetime.
A gift that stays deep in your soul. That pains your heart when she’s not with you.
My child touched me for a while, and now she watches over me.
She left me with the greatest gift of all. Now I see the world through her eyes.
I will change the world for you, and set us both free.
We have much to be thankful for - our children, friends, family, colleagues and community. This season, we want to give a special and warm "thank you" to caregivers, volunteers, doctors and nurses for working this Thanksgiving to help others in need. You are special people.
Wishing everyone a wonderful Thanksgiving, and start to a terrific, healthy and joyful holiday season. Gobble up the laughs, warmth, family and friends.
Love - the Summy's
Honored to accept Naya's award with love and admiration for all that she did. Love you Naya.
On Friday afternoon, we spoke on Naya's behalf at a beautiful lunch honoring the best in Philanthropy. Naya was honored as Outstanding Youth in Philanthropy, and we proudly stood up to represent her life and her mission: No More Kids with Cancer.
We were humbled to be in the company of incredible people who, for their entire lifetime, have given back to communities and causes that are close to their hearts. From volunteering time, to giving away hundreds of millions to others, the day was full of hope, motivation and courage. There wasn't an individual that didn't feel they needed to do more, even though their life was already dedicated to helping others.
As we celebrated philanthropy, Paris was being terrorized. Out of respect for the victims in Paris and elsewhere being stripped from the basic right to feel safe, I hesitated to write about our day. Then I realized this is the perfect time to share. As social media trends about red Starbucks cups, millions, and likely more than a billion of people are in need. They are suffering from hunger, sickness, terrorism, poverty, exploitation and discrimination. Imagine what they think when we're debating about the color of a cup!
Until Naya became sick, I didn't have a full appreciation of philanthropy. To me, it meant donation dollars, and we gave more each year to hunger, diseases, schools and anyone that asked. Now, we give more money, our hearts, voices and time. Imagine a world where you would give another 5 hours to people in need, or even $5 more of your pay to causes that do good. I can. For me, giving back and the amazing people I've met give me so much hope, even as I watch TV and pray for peace in our world.
Today is our wedding anniversary - 18 years ago Hank and I married. That day was the beginning of a magical and rich life and a bond that has strengthened with every laugh, cry, hug and challenge thrown our way. And it's because of Zak and Naya that our love deepens every day.
Today is also the last day we experienced Naya before she began her walk to a place that took her pain away. Last year on this day, Naya was up early and ready to celebrate our anniversary. Her friend came over to hang out. They painted halloween things, planned trick or treating and laughed about the teachers and school stuff. It was so good to see Naya being a normal kid. She was so excited to be invited to go trick or treating, even though she would need her electric scooter. But, her friend didn't care about that. I was looking forward to helping Naya dress up, and with something scary on her face. I love Halloween!
Later that night, Naya cooked for us, and ate with us - a rare thing. We had a great day. Being with my kids, Hank and close family was the best anniversary gift I could have every asked for. Hank gave me beautiful earrings that the kids picked out with him. I'm wearing them today.
Naya gave me an anniversary gift I will never forget and always treasure. She loved knowing her parents were in love. She loved our stories. She had her own dreams of having a husband like her dad. She laughed with us, ate with us and was her bright self - full of life that day.
Tonight will be bittersweet as we go out for our anniversary dinner. A night to celebrate my marriage and dreams with Hank, love of my life. A night with Zak, who is my source of strength and laughter. And a night to remember Naya at her best - our soulmate who's somewhere watching us and smiling with us.
In less than 2 weeks, I've learned about five people I know either very or pretty well, that are dealing with a battle with cancer, and a battle to live. Their ages...12, 27, 40, early-40's and 43. And, if you knew them, you'd understand that each one is a person that has the ability to change the world.
I know you're thinking "Well, that's Amy. She is in the 'world' of cancer. That's not me. Cancer is rare, especially in kids." If you are thinking any of this, realize that cancer is not rare, and it kills more children than any other disease. No disease comes close! Cancer. It's about to take over heart disease as the #1 killer.
I ask myself everyday - why isn't this changing? What's the fundamental, underlying reason why we aren't urgent about childhood cancer? How many videos do we have to see of kids battling this horrible disease to stand up for kids?
The change in the last 20 years is incremental. "Incremental" is my latest word to define disgust. 'Incremental' represents death. Extreme? Maybe. But, maybe not. If it's you, or your kid, than not.
I've come to realize that there is a fundamental disconnect with knowledge and action. This inaction is, in itself, a disease. A disease that kills.
My time is spent figuring out why. Why is this not getting the focus it needs when the data is so clear, and the stories are so upsetting? Kids are losing their future. What's going on?
Let's figure it out together. Join Us. @nomorekidswithcancer or nomorekidswithcancer.org
I always think of Naya. Not always with deep pain and grief. When I'm with people she and I care about, she's present and alive. I have no tears during those times. I am at peace. I can feel her presence, her kiss, her hug and her smile. I think "Naya will like ...this show, the crisp day, the pumpkins, the Pope, the funny work story, PaintJack's latest stories, the support from her school, Logan's progress against cancer, Nashville, receiving Outstanding Youth Philanthropist." I reach my hand out to hold hers. I can feel her around me. She send signs of her presence to me everyday.
I snap back into reality. She's not here. Reality hits when it's quiet. When I'm alone.
When it gets quiet, I feel the pain of losing Naya deep in my throat, my jaw, my entire body and in my heart. Tears well up, and I cry. Sometimes I cry hard, really hard. I'm crying now. I breathe, wipe my tears and try to get my disposition back. "Breathe, breathe", I tell myself.
The visit from the Pope awakened me (I'm not Catholic). I saw a man so powerful, so full of love and so giving to people who suffer the most. The sick, poor, imprisoned and dying. He shares their grief, pain and suffering. He sees them. And, by doing so, he uplifts them and gives them the gifts of self-worth, joy and hope.
Thousands of people shared in our pain as they followed Naya's journey. They also all shared in our loss. We all lost Naya - Naya's family, friends, her schoolmates, teachers, family, caregivers, doctors, nurses, supporters, our work colleagues, our friends, other children with cancer who knew Naya, friends of friends, and all of the parents, grandparents, relatives and siblings of children affected by cancer.
I'm not alone when it gets quiet. I am joined by many who have directly been touched by losing Naya. While it's still very painful, it gives me comfort to know others have not forgotten Naya. Far from it. They are inspired by her, and carry her torch. Thank you for not forgetting her.
Someday, hundreds of thousands will be touched by her story and feel her impact. I stopped crying, and I'm breathing now. Naya is with me, hugging me from above and feeling loved.
Every day, there's a radio or TV commercial with a well known hospital claiming to strike out cancer, save us with targeted treatments and let us hop on a bike hours after radiation or chemo. Naya went through surgery, chemo and radiation. She took a full year to regain her strength to get back on a bike.
If you have anyone close to you touched by cancer, you know the reality.
Cancer rates are going up. Cancer is predicted to become the leading cause of death overall, surpassing heart disease. It's already the leading cause of death among kids in the U.S. and growing. And, if you live in less fortunate country, the survival rates are a fraction of those in the United States.
The runs, walks, pool parties, birthday donations, lemonade stands and childhood cancer events are critical as they are the primary source for funding new treatments and finding cures.
In less than 2 years, our donors have helped us raise over $350,000. We have also made sure 100% of the donations to Team Naya and The Naya Foundation are used for childhood cancer research and cures. So far, we've been able to commit to a clinical trial, gene sequencing and fund research to support advancements in childhood cancer cures. Thank you.
Dr. Benjamin Mizukawa, a St. Baldrick’s Scholar at Cincinnati Children’s Hospital Medical Center, puts it this way:
“When you save a child’s life, you affect families, future generations, and everyone that child will influence over a lifetime. When you support a scientist, you affect not only the current work, but all the trainees, collaborators, and personnel connected to the work, and all their future studies that will follow over a lifetime."
**Statistics from American Cancer Society, 2014
Naya was awarded Outstanding Youth Philanthropist and will be recognized on National Philanthropy Day to celebrate her extraordinary contributions and efforts to help cure childhood cancer.
Read MoreJoin Team Naya at the 2015 Parkway Run in Philadelphia
Read MoreGirly-girl Naya dressed as Michelle Obama in the 4th grade
Naya passed away about 9 months ago. She was 11 when she died from brain cancer. I never thought I could survive the loss of my child — a nightmare I wouldn’t wish on anyone. I’m in a club of survivors I wish didn’t exist.
Yet, here I am. Depending on the hour, I can be happy or sad. I am more happy than sad these days, and my mind fills with more good times and joy than the horrific treatments she endured during her illness.
I’m healing because of Naya’s own words. A child’s view on life is not like an adult’s view, as I’ve come to understand with the help of a wonderful therapist, Naya’s doctors and many hours of introspection. Naya could learn that her tumor was growing in the morning, and play in the pool in the afternoon. One week after brain surgery, her first question to her doctor was “when can I ride my horse?” Only her bald head and feeding tube gave away her cancer and illness to others. It was never her attitude. She was known for her smile and girly-girl nature, big heart, love of learning, compassion and intelligence, all while she withstood treatments and fought for her life.
If you’re in a traumatic situation, helping a loved one through a terminal illness or going through a very difficult time, I hope Naya’s words and inspirations help you feel good for just a moment, and help you heal.
At age 9, Naya purchased an engraved wooden box for her dad’s birthday with a quotation from Abraham Lincoln, “It’s not the years in your life that count. It’s the life in your years!” We didn’t know she had cancer, and we had no idea how important Lincoln’s quote would be someday. She placed a magnet on our toaster with the same quote, which serves as a daily reminder that each day is an opportunity to do something worthwhile.
We can’t predict if we’ll be on this earth 2 years, 11 years or 80 years, so now matters. More than “living in the moment”, for me, it’s about making life and time matter at any moment. At first, my interpretation of that phrase meant obsessing about curing childhood cancer through fundraising and telling Naya’s story. I wanted others to share my anger and do something about it. My obsession didn’t help me because it kept me in pain and slowed my healing. Now, I mix it up — going to Taylor Swift with a friend, shopping, strengthening my relationship with my husband, spending more time with my son, being my best at work, playing with our dogs, riding our horse AND continuing to support people working hard to cure childhood cancer. These are all parts of life Naya and I shared, and by continuing to do them, we continue to share them in spirit, between our souls and in our hearts.
Another wooden box she bought before she was diagnosed has more good phrases. She kept this box for herself in her room, and now it’s in our bedroom. Love Always. Laugh Often. Dream Together. Share Joy. And my recent source of strength, Forgive Quickly. I’ve had my fair share of hurt, pain and grief in my life. In the last three years, forgiving has been a newly developed muscle. Forgiving is very hard depending on who and what I’m forgiving. But, forgiving helps me move forward. Forgiving doesn’t have to be shared with the person I’m forgiving; it’s my secret and my freedom. As I forgive, I realize the person I’m forgiving is flawed too, and their flaws led to the actions I resented in the first place. That’s pretty powerful to understand, and creates the ability to forgive quickly again and again.
Naya also loved these phrases, and they are all present on her fundraising shirts and posters…Fight Like a Girl. Smile. Enjoy Life. Laugh. Never Give Up. Stay Strong.
I’ve stayed strong throughout my life. I’m honestly sick of being strong, being complimented on my strength and people telling me how strong I am. If you’re a friend of mine, please accept my apology if you told me I was strong. I know it was well meaning and from your heart.
Staying strong is a necessity to survive. I am trying to live by Naya’s other advice: Laugh, Enjoy Life and Smile. I KNOW Naya would not have wanted me to live an unhappy life filled with sorrow. I also know she wanted me to help other kids and help cure childhood cancer. So, simply, my daughter’s words to laugh, enjoy life and cure childhood cancer are my compass and healing remedies. Her words have given me permission to be okay, be happy and make a difference. If you’re my friend, flatter me on my smile or get me to laugh. Help our cause. You’ll make my day, and fulfill her dream.
We all have times that we remember fondly and will never forget, even in times of great loss, hurt and pain. Mine were Naya’s words…
“Mom, I love you.”
“Mom, you’re beautiful.”
“Mom, thank you for loving me so much.”
“Mom, if I don’t make it, promise me you’ll help other kids with cancer.”
“Mom, I’ll be okay. It’ll be okay.”
One of my closest friends reminded me that Naya entered this world and left this world in the arms of her parents. She told me that there is probably no better way to leave than in your parents’ arms, even though that’s not what any parent wishes. I know my friend is right. Naya wanted nothing more than to be with her brother, her dad and me. We know so because she told us.
In my experience, healing comes from the inside, but those who love my family and me, and people who shared our experience have been so important to my healing. Naya loved us, and her words have been the most important source of my lifelong journey to heal.
Naya & Hank - 2013 Parkway Run
It's been a long 8 months. Full of heartache, sadness, emptiness..and hope. Our friends are amazing with their love and support. We've met incredible people dedicated to curing childhood cancer and children's health. We've learned about the obstacles that are in the way, but can be overcome. We're figuring out how to really make a difference.
We also know we have to move faster. Cancer is the #1 killer of kids under 20, and more kids today are suffering from cancer - including one of Naya's closest friends. I cry for each child I know, and it's one too many.
Our first lesson - data needs to be shared, in real time. Real time genetic, clinical and research data shared between scientists surfaces new ideas, enables innovations and accelerates finding cures. More ideas will lead to curing childhood cancers.
Our second lesson - private funding is critical. The NIH has limited funding and the grant system creates competition for that limited funding. This can keeps institutions from sharing data real time. Not all children's hospitals share data. Isn't that crazy? Knowing that infuriates me!
Donors and a few leading institutions, including The Children's Hospital of Philadelphia and the University of California at San Francisco, have created consortiums that share information between scientists and encourage collaboration between specialists (immunology, oncology, neurosurgery and radiology). With their leadership, more hospitals are jumping on, and sharing data. Yes, this is "Big Data" for those of you interested in technology.And, this enables Personalized Treatments, aka Precision Medicine.
Private funding is required to fund these new trials and consortiums. That's where we you come in. It's time for the Parkway Run. We want to raise more than $100,000 again this year.
Eight months ago, Naya passed away. Her absence is felt deeply in our hearts every day. I miss her laughter, and love of simple things - from making crafts, to swimming, playing with the dogs and making dinner with Hank. Naya's absence is the driving force behind our efforts to find cures for childhood cancer. That was her only wish, and we're committed to making it real. We love you Naya.
The ability to change the world is in front of us. The past few weeks have shown us that passion, activism and standing up for what is right can change entrenched ideas, and improve and save lives. We're witnessing the removal of the confederate flag, legalized marriage for all and musicians getting paid for great music thanks to Taylor Swift.
I follow change agents including Bill Gates, Tim Cook, Al Gore, Arianna Huffington and many others who are changing education, health, wellness and ultimately the quality of our world and lives. But, it doesn't take a CEO or VP to change the world, as Alex Scott of Alex's Lemonade Stand has shown us.
MY heroes are the researchers, scientists, technologists and healthcare professionals who are dedicated to curing pediatric cancer, and fulfill my late daughter Naya's wish.
So, if hundreds of years of traditions can be changed, and devastating diseases can be cured, curing pediatric cancer is going to be one of those areas we will cure if we loudly speak up.
This summer, I will launch a campaign to build awareness of the need to cure pediatric cancer, with the goal of raising funds to help find more treatments and cures.
Please help by following us @nayafoundation or on Facebook. More to come!
Reflections;
I'm the photographer in the family and have probably taken at least a terabyte of photos of Naya, Zak, Amy, the dogs, and friends and it still isn't enough! I find myself combing through the folders and folders of pictures on our server looking for new images and then realize there just isn't going to be more than what already exist of my beautiful, creative, funny and smart girl. For all of us time has been frozen.
Anger;
Most of what I feel these days is anger at not being able to protect, or keep my little girl safe, and well. It is such a empty anger because there isn't an immediate recourse. I, and all of us, have to take the long term view and fight cancer and honor Naya by raising money for research to help the doctors who have dedicated their lives to uncovering a cure. It is the path that exists so please help us and help the medical teams anyway you can.
Future;
Naya lives on through all the memories she imprinted on me every time I had the chance to enjoy her amazing presence. She will forever be my future marine biologist and I will forever be better for all the amazing time she and I spent together.
Happy Birthday Naya, I love you!
Dad
Tomorrow would have been Naya's 12th birthday. It seems like a stupid statement, but only this weekend did I completely understand that the last images I will have of her are from when she was just a child, just 11 years old. I'll never see her turn 12, 18, or 20. No pictures of the future with her. She is just gone from our lives. How can it be? It still seems like a bad dream.
For the last two years, I've tried to look at the positive side in life and appreciate each day and experience. I've tried to be positive, open, kind, forgiving and loving. I'm not in the mood right now for any of it. Why? Because it really sucks to lose Naya.
I look for signs, only to wonder if I'm just seeking what's not there. I pray that she hears me, or sees me. When I drive alone, I imagine she's with me holding my hand in the car and singing a song. I think about her all day, and my heart is tied to her forever. I talk to her daily. I hear her yelling at Zak,and laughing at the dogs.
I've organized Naya's pictures, voicemails and mementos so I never forget anything about her. Even so, I'm realizing I will forget things. And that is scary. How can I possibly remember it all?
I'm realizing that the 5 stages of loss or lessons on the first year of grief are so shallow. There are no stages, and there's no way a quick read brochure can alleviate my grief. There's nothing good or right to say. There never will be. Sometimes, I just want to stop listening. But then, sometimes, I can't stop listening.
I feel an immense sadness from these realizations. A new sadness. It's different from losing her, which is still fresh and so, so painful. It's sadness mixed with fear and anger. It's about the fear of losing precious memories of my dear daughter. It's about losing the future that she was robbed from living. It's about shutting people out or letting disengenious people in.
Tomorrow, I'm taking the day off. I don't think it'll be a celebration. But it will be in her honor. I'll ride her horse PJ and eat at her favorite restaurant. I'll work on her foundation. I won't work or even look at my phone. That's what she would have wanted.
To honor her tomorrow is to also renew my faith in the goodness of people and life. I want to live my life happy because she would want me to be happy. I want to remain positive because she was positive. I know she loved me deeply, and that gives me so much strength to love others in the same way. I was so fortunate to have Naya. Tomorrow will be a day where not a moment goes by where I don't think of what she represented: joy, love, life, strength and perseverance. It'll simply be a day dedicated to my Naya, just as her birthday should be.
Treasures lead to a second Mother's Day.
Read MoreI've been on social media sites for years. Social media was a part of my job as a marketer. Over the last two years, social media has been a lifeline for survival and therapy for me as my daughter fought and lost her battle to cancer. Now, I think of social media as a lifeline for others, and I feel a responsibility to help others in need of a voice. I'm in a position, both as a person and professional, to make the world a better and more empathetic place. My voice is getting louder as I help causes and efforts very close to my heart - pediatric cancer cures, STEM and advancing women. Recently, and with the help of social media, I've expanded my voice to areas that needs more empathy and understanding. Whether it's influencing change in the State of Indiana, sharing stories that might help others, getting the world out about Elon Musk's ideas to reduce carbon emissions, or listening to the needs of minorities in our inner cities - I'm trying to do my part to make our world a better place.
Many of you already act as a megaphone for others. For those of you who do, thank you. I've learned more about the world through your words and images, and am a better person as a result. I've also met some people who are changing the world and are heroes in their own right, and they are my source for inspiration.
But many of us still back away from stating our opinions. We're worried about losing "friends" and "followers", causing controversy, or seeming political. When I retweet or post something, I think about those things too. I don't believe the "opinions are my own" will save me from repercussions. The stakes are high the more you put yourself and your brand in the public domain.
You can state your opinion and be responsible. You can state your opinion and not be political. All you need to do is state your opinion and be human, hopeful and not hateful. Let's raise the world's empathy quotient and make it a better place.
If you're going to the Radnor Hunt, listen up!
Tracy, a former classmate of Naya's, student, and amazing young lady, is making bracelets to help raise funds for pediatric cancer research. These wonderful bracelets will be available at the Radnor Hunt for between $1.50-$3.00. Of course, she'll accept more if you want to give more :)
Buy a bracelet from Tracy and support The Naya Foundation at the same time.
When you get to the field at the Radnor Hunt, look for our logo. Cash only please. Thanks Tracy for your amazing talent, love and support!
I've been thinking about May a lot these days. Naya's birthday is this month, and so is Mother's Day. I also lost my dad in May. I know it's going to be a hard time, and while I tell myself to live each day to the fullest, the anticipation of the month gets the best of me at times. I have a plan for May to help me through it, and I hope you'll join me and contribute. This month, I'm going to write or cite great stories and videos about mothers, and sometimes, about our relationships with our daughters. There is nothing more important to me than being a mom, and I have been blessed with amazing children. You have all read about my journey with Naya. Being her mother was an incredible gift, honor and responsibility, and the most loving time of my life.
I'm going to begin ahead of schedule with a story about someone I have the pleasure to work with at TE. She's a young woman, with an amazing story that all mothers, daughters and parents should hear.
Meet Lexi...
[youtube=http://youtu.be/P5EZRp09b_g]
On April 2nd, we launched The Naya Foundation with many friends, family members and passionate supporters of our family and Naya.
We are excited to announce that we have also
launched the official website for Naya's Foundation!! Please check out the site at http://www.thenayafoundation.org
There are a few things we are working through which you'll notice on the site.
First, this blog will eventually be redirected to the Foundation site. We will also begin blogging in both sites so that Naya's supporters can get used to the new site.
Also, we're finalizing the IRS non-profit designation so the donations will continue to go to CHOP, with all funds raised going towards pediatric cancer research and cures.
And, finally, we are looking for committee leaders and volunteers. Let us know if you have interest, but didn't get the notes from the April 2nd meeting. You can email us at nayasummy@me.com
No More Kids with Cancer and The Naya Foundation are registered trademarks. We are a 501(c)3 charity. EIN 47-3573433. Donations are tax deductible in the U.S. Read our Privacy Policy and Non Discrimination Policy
Contact Us at info@nomorekidswithcancer.org. Address: 115 Altair Avenue, Sedona, AZ 86336
