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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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.

Eight Months Later, Big Data and The Parkway Run→

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. 

Sign up to run or walk with us, and please donate by clicking here.

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. 

Changing Lives Is Withing Reach

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!

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

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."

Let's Raise 100,000 and Help Save Kids' Lives

Let's raise $100,000 to help save kids' lives.

It's time again for the Children's Hospital of Philadelphia's Parkway Run.  Last year, TeamNaya raised $58,000.  All of that money was directed towards pediatric brain cancer research, and used to help find new cures and therapies for Naya and other kids like her.  This year, we want to raise $100,000 with your help.

To reach our goal, we are hoping to grow our team so that you and others can also fundraise on behalf of TeamNaya.  There are a few ways you can get started.  Sign up for the walk and walk with us, join our team and raise funds on your own for the Team, or simply donate any amount to help us get started.  To do any one of the three, use the following link:

http://chop.donordrive.com/team/teamnaya

Also, this year we are going to try selling items to help raise money. More to come on this front, and if you have your own ideas, feel free to send them to us and we'll promote them for you.

We can't wait to see you this September!

Shake It For a Cure - Oh Yea, Get Your Zumba On With Donna Fooks

Zumba Party is this Saturday. Come on out and Shake it For a Cure.  Donna is going to throw a crazy party so please help by participating.  She is raising money for Naya's Four Season's River Parkway Run in September - http://giving.chop.edu/site/TR/Events/ParkwayRun?team_id=12770&pg=team&fr_id=1500.

The event will take place Saturday, September 21, 2013 from 2:00-3:30pm (doors open 1:30pm) and will be held at the Brookhaven Community Center gym (next to Fire & Police Depts.) 2 Cambridge Road Brookhaven, PA 19015.

The cost is $20/pp, tickets are available in advance and at the door.  If you want to purchase an advance ticket please leave a comment and I'll email you back with how to get the tickets.

So get ready to shake it and have some fun for a great cause!

The Famous Mister Ed - Well...

Naya starts her third round of treatments, out of 8, today but before she begins she went out to see all of her friends at Aliquippa Stables. So PaintJack, Scout, Camanche, and the rest of the gang. As always, she came back full of energy, giving me all the updates on all her horse friends and the late breaking events around the barn. She loves her horse buds but I'm going broke with all the carrot bribes!

Hit Me With Your Best Shot!

Naya rocked out last Thursday with Pat and Neil, yes Pat Benatar and Neil Giraldo. We had a blast and man can Pat still belt it out and of course Neil can make that guitar scream. We had a great experience backstage and Naya partied hard late into the evening. Check out her leather dress with chain link neckline!