How Am I Doing?

I get asked that question a lot. It’s a hard question to answer. I never answer it well. I think people want me to say things are better, and in some ways, I am a better person. I’m more compassionate, more focused on what matters, in the moment and appreciative of my family, colleagues and friends. But, in other ways, I’m not better.

I’ve learned to live with heartache. I think that’s part of my answer.

Today like many days is hard. I miss Naya a lot. I miss my girl who loves the outdoors and would be on the golf course riding the cart with Hank and Zak. She'd be asking me things about her future, listening to Prince with us and dancing to his music. And, she would be planning her birthday party.

What would she be like now? Smart, tall, pretty, funny, happy. Soon she would have turned 13! Wow, a teenager. It makes my heart ache to think of what she didn’t get to be. It kills me to know her dreams will never be realized. Going to a prom, having a boyfriend, going to Stanford, having kids, being a wife. But one dream hasn’t changed. She wanted to change the world. She is fulfilling that dream and I hope she knows it.

So, back to "how am I doing?". I turn a lot of my attention to her foundation. I get a lot of joy from it, even though the pace can be so frustrating. I've met truly special and gifted people that I never thought I'd meet - people dedicated to children's health and lives. So many people are selflessly helping us. The texts, emails, tweets, conversations and posts fuel my day and my conviction. I know so many people are pulling for us. From strangers to old friends – so many are helping us change the world.

When I think of the answer to “how am I doing”, I don’t want to speak only about my heartache. Naya didn't deserve to be remembered in that way, and wouldn't want that for me. So, here’s a stab at an answer…

I live with the heartache of losing Naya every day, but I also live with precious gifts she gave me. The gift of her unconditional and deep love. The gift of the mother-daughter relationship I always wanted. The gift of a life’s purpose to help others. The gift of having her with me for almost 12 years, and in my heart forever.

I’m doing okay, and maybe better than okay. I'm just not ready to say that yet.

Zak's relationship with Naya

Zak at age 14 wearing bands that signify his love for Naya.

It's Zak's birthday today. He's 15! He's growing up to be such an amazing you man. Smart, athletic, funny, loving and kind. In honor of Zak, I thought I'd share a little about Zak and Naya.

From the moment Naya was born, Zak was the big brother. He watched over her swing and crib, shared a room with her in Toronto, hugged her when she cried and played with her constantly. They played and fought like all kids do. But he also hugged her when she was down, and helped her when she needed it most. He gave her a hug and kiss literally every day of her life.

Zak fooled us as a kid. Hank and I thought he could do no wrong, and that Naya was the trouble maker. However, as they got older, there was a period when he tortured Naya and got her in trouble. If it weren't for Anna telling us how Zak quietly tortured Naya, we would have gone on oblivious to what he hid behind his innocent smile. 

Naya told the story of Zak's torturing to anyone who would listen. He stopped for a while when she got sick, but started up at times. He kept her feeling normal. She yelled at him, he annoyed her, and she rolled her eyes at how lazy he could be. Even when she was going through treatments, they would fight over the radio station in the car. Their fights were honestly like music to me. I wanted them to always continue. I knew when the fighting stopped, my music would stop. It meant she was gone from our lives.

Zak only cried a couple of times in front of me when Naya got sick. Early on when she got sick, and close to the time she died. He has been quietly strong for all of us. He knows when she is on our minds, and when I am lost in my thoughts about Naya, he brings me back to the real world and reminds me that life is joyful. 

There have been some statements he's said about Naya that will stick with me. 

• 'Naya was stronger than I could have ever been'
• 'She was determined'
• 'Cancer did not beat Naya'
• 'Treatments were not good enough to save my sister'
• 'She was stronger than me'

Zak is strong too. And, Naya's memory impacts him everyday. He wears his "Fight Like a Girl" band daily in memory of Naya. Her pictures and things she made are in his room. In his own way, he quietly surrounds himself with his sister.

I'm so grateful for Zak. He's been so important to our family's joy, and now our healing. It's a lot for a kid to shoulder, but I think when he grows up, he'll realize he gave Hank and me the most important gift of our life. The gift of loving life. Happy birthday Zak. 

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A Better Future

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. 

Why September Matters

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.

• 1 in every 285 children in the U.S. will be diagnosed with cancer
• In the U.S., one out of every five children with cancer will not survive
• Nearly 2,000 children in the U.S. will die of cancer every year
• The vast majority of kids who do survive will suffer long-term side effects
• A child’s probability of surviving cancer is poor in less-developed countries

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

Healing, Naya's Advice and Forgiveness

Girly-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.

Raising the World's Empathy Quotient

I'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.

Going to the Radnor Hunt? Buy a bracelet and support Pediatric Cancer Research

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!

My Plan in May is to Honor Mothers and Daughters - Join in

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]

The Naya Foundation Site Launched!

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

Join Us for The Naya Foundation Kick Off on April 2nd

On April 2nd, we are officially kicking off The Naya Foundation. If you are in the Philadelphia area and wish to join us (by phone or in person), you can send an email to nayasummy@me.com or comment via this blog and I will forward details to you. A dial-in and online meeting will be available for out-of-towners to participate. Over 800 people supported Naya in the last 2 years, and we want each and every one of you to join us as we help kids with cancer live the lives they were meant to live.

If you can't make the date but wish to stay informed, keep following the blog, and soon, the Foundation's website.

Seeking My Narrative

I'm going through a journey of finding out who I really am, and what I'm meant to do in my lifetime. I know many of you are too, so I thought I'd share some of my learnings so far during my journey. For decades, I've wondered what I was meant to do. When Naya became ill, I knew that I was chosen and meant to carry Naya through her life, and be strong and loving for her. My upbringing shaped and prepared me to carry her. I also know that I'm here to see that Zak thrives, survives the loss of his sister and becomes the man he was meant to be.

I believe that all of my life experiences are supposed to lead to something that helps others in a bigger way. I'm not sure what that something is yet, but I hope I see it early enough to do something about it. This month, I had the chance to meet and learn from so several inspiring individuals. Their points are helping me develop my eventual narrative, and I wanted to share them with you in case you get inspired:

-Dream big, really big -Always have a dream you are shooting for -One person can make a difference in the world. I can make a difference. You can make a difference. -A sports legend said to me after coming in second that "#2 is the first loser". True in sports, but it could be true in many places. Figure out when #1 matters, and make it happen. It's part of the dream big. -Your entire life is part of your narrative. In my case, my upbringing prepared me for the unimaginable loss of my lovely Naya, and also prepared me for being an advocate for children. In Monica Lewinsky's case, she's helping us understand the price of shame. What's your narrative? -Be compassionate -Have empathy -Have a daily dose or two of inspiration. Surround your day with inspiring people. It's a cycle...they inspire you, you inspire someone else, and it keeps going. I follow people who inspire me online, and they do the same. -Help all kids aspire to be greater. Give them opportunities to be inspired. -Every person has something to offer. Seek it out. I've learned so much from people just by tuning in, opening my mind and seeking their message. -Shedding stereotypes creates bigger possibilities for everyone.

My narrative, and yours, is the sum of all parts. Think about your life and journey. It's telling you something, and your story is in there somewhere.

Beautiful Truth from RBG for Hank, Zak, All Women and My Friends

Slow Down

A special person I work with always says "slow down to speed up". His words are true in work, and in life.

Life passes by too fast. Multitasking, electronics, media, double-booked meetings, tasks and activities all make it fly by. I'm choosing to be fully present. It simply makes my life richer and better. And, being present actually speed some things up.

A recent vacation forced me to step back and face my changed life head on. Being in Vail wasn't easy without Naya,but I needed to do it, and I didn't know why. I think it's becoming more clear.

I made space for myself to grieve, and realized I've only just started to feel the immenseness of my loss. I continue to imagine myself with Naya, holding her in my arms, laughing with her, and loving her as only a mother can. I want her to feel my love from wherever she is, and I want to feel her love through my grief.

I've made more space for my husband, and am helping him as he gets back to being the bigger than life person he has always been. I SEE Zak as a young man with great humor, world opinions, quirks, empathy, maturity and deep intelligence. I've made time for great friends, and had meaningful conversations with colleagues and new acquaintances. I'm fully engaged at work, and bringing my whole self to the game.

I've found more and more that people are giving, selfless and caring. From a lending a shoulder to cry on and ear to listen, to donating, honoring Naya through bake sales, helping us get her foundation off the ground and more. And, there are people who suck your time, stress you out and aren't in the first camp. My trick is to make sure the time suckers don't cause me to lose perspective or be negative. It takes practice and reflection every day, but it can be done. And, you will be happier.

Dear Naya,

We hope you're happy and smiling down on us. I imagine you with Grandma Taru, Grandma Betty, and Grandpa Bhupen all the time. I know they are taking good care of you. I hope you're enjoying Rekha. I feel you at times watching over me and smiling. Thank you babe.

This has been a busy month. I didn't have much time to just be with you. No matter how busy, I was determined to keep your cause moving forward. But I'm sure you knew that. I was at AIS this week. I love that school, but I shouldn't be the one going there, it should be you. A lot is happening there in your honor. They are going to create an award for the 6th grade which represents what you stood for, which was so much. They are also creating a space on the playground dedicated to you and PJ. Also, two Agnes Irwin girls pledged over $5,000 that they raised for your cause through their Hives for Lives club. Dad and I are creating a scholarship in your name to help a young AIS woman in her junior and senior year stay at AIS through graduation. Your classmates are also going to help us with the Parkway Run. None of this brings you back to us, but it all ensures your dream to cure pediatric cancer will be carried out and you will always impact the lives of girls at AIS.

We met Dr. Fisher and talked to CHOP too. In the last year, you raised over $200,000. Just this past week, we gave $50,000 of that money to genetically sequence medulloblastoma tumors of other children. Your tumor was sequenced, but it turns out that there's no ongoing funding to do that, so your money is going to help those kids get closer to a cure.

This month, TheNayaFoundation will be officially launched. I have many ideas that were yours, and everyone wants to help. We won't stop until there is a cure for your disease. I promise you that.

Yesterday, we took Zak and his friends downtown to the Villanova game. You would have been so annoyed with 4 teenage boys. Dad and I laughed thinking about what you would be saying about them, and how you'd be rolling your eyes. I passed the Kimmel Center and thought about the time you read your poem on stage for Dream Flags. You weren't nervous at all. I was so proud of you. And, I passed Citizens Bank Park and remembered when you walked with me for the American Heart Association and TE team. You did so much in your lifetime Naya, all the way until you had to leave our earth. More than most people will ever do.

Our heart breaks for you constantly. I imagine holding you and giving you kisses every day, and we hear you laughing and see your smile all the time. Valentine's day is coming up, and Zak's birthday. We're going to Vail. It's going to be a killer being there without you. Help me be strong Naya. Love you. Mom

Still Learning From My Daughter

Yesterday marked three months since Naya passed and I'm still learning how to process my emotions. I want to focus on the way she took everyday as it unfolded and made the most of every moment even though many of those movements she felt like crap. She would make plans to ride PJ, or which classes she was going to attend, or make plans to craft with friends and not for a moment think, "maybe I won't feel strong enough to do that so maybe I shouldn't plan." It's still raw and even though I want to focus on the strength she showed me how to pull from I still have those moments where it's hard not to get angry, mad as hell in fact, and frustrated with the odds that she was dealt. My own weakness try's to get the better of me. Then I think about how she never let those feelings in, instead, pushed and fought and worked hard to enjoy life. So how can I do anything but that?

She will always continue to amaze me! So now Sam, the puppy she convinced us to add to our household, is getting big, livin large, and taking over the role of leader of the pack. Take a look. Already housebroken and smart as a whip at 4 months old I'm sure she would approve. Just like Sam, I'll keep learning. I just hope I'm as good of a teacher to him as Naya was, is, to me.

Staying Centered | Naya's Foundation | Precision Medicine Initiative

January was a crazy month. I love work and what I do, as well as the people I get to work with everyday. Add strategic and time sensitive projects, and the workaholic side of me emerges and I get easily consumed. Only this time, working alone wasn't enough to fulfill me. I greatly missed that space I've created over the past several months to be with my family and Naya's memory. I didn't have the mental capacity to be in the moment with the people and thoughts that matter most to me. I veered off course...just for a little while. With the help of my brother, caring friends, Hank and Zak, I quickly figured out why I was feeling off center. I was missing that space, and petty things bother me. That space keeps me grounded and focused on the bigger picture.

I've profoundly changed over the past two+ years, and being grounded in who I am and on what matters most to me is my quest. Draining my energy worrying about what others do, petty drama, or things I can't change is exhausting. I need that energy for what I want to do for me, my family, people I care about, and most of all, Naya. This blog is part of that quest.

This week will be 3 months since Naya passed. I miss her more every day. I believe she's with me every minute of the day. I'm proud to say that I am more grounded in what she stood for and am making progress.

There's progress on our goal to cure pediatric cancer. Naya's foundation paperwork is getting filed so we can get it up and going very soon. We also received over $25,000 in donations in January from amazing people and organizations. These funds will go be directed towards Medulloblastoma (Naya's disease) sequencing at CHOP. Genetic sequencing enables future targeted therapies and advances in pediatric cancer treatments.

This week, President Obama made it a priority to fund the Precision Medicine Initiative, calling for new funding to build a national infrastructure that will allow researchers to custom-design more effective therapies based on a patient’s individual genetic profile.

Read about it. It might change your life.

http://www.technologyreview.com/news/534591/us-to-develop-dna-study-of-one-million-people/

"Precision medicine refers to treatments tailored to a person’s genetic profile, an idea already transforming how doctors fight cancer and some rare diseases."