Who You'd be Today

The month of October is a heavy emotional month for me. Naya was getting sicker by the day, and then one day, we were counting the days, then hours, she had left. Life turned on us too fast.

Looking for music to help me process my grief, I came across a beautiful song by Kenny Chesney, which inspired the title of the post. It fits with where I am since losing Naya. In recent months, I have been thinking more about who Naya would have become. In honor of Naya's memory, her death on November 5th and children who have lost their lives to cancer, I hope you read on and listen to this wonderful and moving song.

Dear Naya,

Three years ago, we were watching you slip away from us. Your face was so peaceful and beautiful. Your hair was still growing. Your long fingers still held my hand. You body was letting you be at peace even while a battle was raging inside of you. 

You stayed with us well past the doctors' predictions. You always had that athlete's heart, and it came through in flying colors despite cancer. Even in the end, you made the rules fit what you wanted. Your little heart let us share precious time together, in peace, listening to your favorite music and being at home. You didn't leave us in the middle of the night. You weren't screaming or crying. You just breathed slowly and quietly. You let us be with you until your very last breath, holding you in our arms. I wonder if you were intentional about how you left this world.

I knew you were out of options for many months. Even so, the thought of losing you was distant most of the time, and it wasn't until your last breath that it became vividly real. I've always hoped you didn't know what was happening. Deep inside, I believe you knew. I just hope they were fleeting thoughts, and didn't stick or cause you to be afraid. The thought of you being in fear on top of all of the physical suffering from your treatments hurts almost as much as losing you.

I'm sorry you had to endure cancer, and you were robbed of a long life. At the same time, I am also grateful that we didn't know how much time you had. We tried and succeeded at living life to its fullest with you until the end. In the unluckiest blow life could give to all of us, the cancer did not take away your personality or soul.  Look at this picture...it was just a few days before you died. I love it.  

You were selfless your entire life. The gift you left us, that you would be okay, has helped me carry on without you here. I know that every tear I shed is because I miss you and constantly wonder who you would have become. But I also know you are okay, you haven't left me, and you are with me now.

In your death, you are helping other kids. That's what you're doing today. It's who you are today. It may be your legacy, or it could just be the beginning of what you do. Your compassion, love for people and determination are felt as much as they were when you were here with us, breathing next to me. 

I hope you like this song. I miss you.

Love - Mom

Lyrics

Sunny days seem to hurt the most
I wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughing in the rain
I still can't believe you're gone

It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today

Would you see the world, would you chase your dreams
Settle down with a family
I wonder what would you name your babies
Some days the sky's so blue
I feel like I can talk to you
I know it might sound crazy

It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today

Today, today, today
Today, today, today

Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know I'll see you again someday

Someday, someday

Nobody Said Motherhood Would Be So Painful - And Beautiful

I never thought I’d be a mom. My parents emphasized career over motherhood, and I wasn't one of those kids who experienced touching and special moments with my mom growing up.

My mom didn't fit the mold of moms you see on Mother's Day commercials. She came to the U.S. in the 1960s. She was newly married, and soon became a new mom in a new world. She was young, figuring out how to make friends, be accepted and learn a new language. She also struggled with mental illness which was most pronounced when I was young. We didn’t have much of a relationship until much later, when I was presented with the greatest challenge of my life.

Naya with her horse, Jack,  weeks after her diagnosis and first brain surgery.

Fast forward a few decades, I had my own children and built a strong career. I finally had the opportunity to create bonds with my children that I didn’t experience when I was a child. I showed my love through meaningful gifts, daily kisses and nightly tuck ins. I put great pressure on myself to be a great mom, volunteering at school functions, attending games, and working hard to be perfect.

My idea of being a great mom changed in 2013 when my daughter Naya was diagnosed with cancer. I remember sitting with my husband in the hospital cafeteria after Naya’s brain surgery. We were just hoping Naya would live; we didn’t care about the Stanford dream anymore. None of the superficial stuff mattered. We were focused on saving Naya’s life, doing what was best for her, and keeping our family together.

Throughout Naya’s journey, we faced horrifying decisions. Should Naya go through treatment? Should Naya withstand highly-toxic, deadly treatments given how widely her cancer had spread? Was it okay to try and save her life – with no guarantees - and leave her with severe lifelong side effects? Did it matter that her growth would be stunted, she would never write in a straight line or worse yet, she could suffer from another deadly cancer later in life? Yes, but we had no choice. We had to save her life.

Naya had brain and spine radiation combined with toxic chemotherapy. She was strong and determined during her treatments. She swallowed medicine while her throat was raw from radiation, she ate even though she wasn’t hungry, and kept up her studies and love for horseback riding even while her body was battered from treatments. Why? Naya loved life and wanted to live. We wanted her to live. At first, she had good odds of surviving – around 60%. It was later we learned her tumor type had almost a 0% survival rate. If we had known, I am not sure we would have put Naya through treatment.

When Naya relapsed and her cancer returned, there were no treatment options. We faced another big decision. Should we extract stem cells from her little body in the remote case a new treatment was discovered? It was a gamble, but we took it. Naya wasn’t giving up and neither were we. Huge tubes were connected to her neck for days and a loud machine extracted stem cells.

Our last vacation together, 3 months before Naya died.

The discovery didn’t come, the stem cells were never used, and Naya’s cancer spread. One night, Naya was up all night with leg pains. I stayed up that night trying to make her comfortable, massaging her legs and tirelessly adjusting heating pads. She told me how lucky she was to have me as her mom and how much she loved me. That night was tough for both of us, but one of many special moments with Naya that I will hold on to for the rest of my life.

The week before Naya died, after she woke up

Two weeks later, the day after our wedding anniversary, Naya suddenly became incoherent. We took her to the hospital, where she soon became unconscious and went into a deep sleep. We had no idea if she would wake up. Tests told us that her brain was full of cancer, and she was having seizures that we couldn’t see. The doctors said there were no more treatments or trials. She was dying.

The question became what to do next. Doctors have many tools to keep kids breathing. Steroids, narcotics, potassium, sodium and who knows what else. We had to decide if we wanted to continue giving Naya medicines.

Here’s the thing, Naya probably didn’t know that she was dying. That’s when it hit us. If we threw meds at her, we were doing it for us, not Naya. At her expense, we would have been buying one more conversation, laugh, hug or kiss. But for Naya, it would have meant more suffering.  She could have been made aware of the scary truth that she would never grow up or see us again. We couldn’t let Naya suffer anymore. We were her parents, and we had to protect her.

In her last days, Naya woke up on her own for brief periods. We brought her home, and got precious time to kiss her, hold her, and sleep next to her. She died in our arms - her dad, brother and mom holding her until her last breath. She was in peace.

I live with the grief and pain of losing Naya every day, and at times, every minute. But Naya is not grieving and is not in pain. Every parent I know would give their life for their child, but sometimes we don’t get that choice. To me, being a “perfect” mom means being there for your kids, loving them, and making them feel safe during the scariest times of their life. It means letting your child go if that’s best for them, even if you can’t fathom the loss.

I had an amazing relationship with Naya and she and I shared a deep and beautiful mother-daughter bond. I wish all mothers who have lost their child a happy Mother’s Day. I know our kids are wishing us a great day, and I know they think we are the best moms on the planet.

I wish

You knew how much people think about you and miss you every day.

You could meet the ladies on the radio who announced they were on Team Naya!

You knew we were working hard to cure childhood cancer.

You were the one interviewed for TV and radio shows.

You saw us at the Parkway Run and felt the love from your school.

You could be with me to choose our dresses for the Purple Ball.

You could see how friends have taken on your cause because they loved you so much.

You could meet Sam and laugh at his antics.

You could see Zak's room.

You could thank the doctors and researchers who are working to cure your type of brain cancer.

You could see the purple car at the Porsche dealership and ask mom and dad to buy it for you.

We knew you were okay.

I could see, hear, watch and feel you.

Amanda's Story

I met Amanda Haddock through email and Facebook. We have a lot in common. Our kids lost their lives to brain cancer, we support similar research efforts and we share a strong belief that scientists can cure brain cancer with groundbreaking research and the power of big data. Amanda and her husband founded Dragon Master Foundation with the goal of using big data to help researchers discover new treatment options for childhood cancer. With Amanda's permission, I've republished an entry she wrote that may help people move forward when losing a loved one. It helped me when I read it. This is taken from her blog This Grey Matters.

Amanda and her son David, who lost his life to Glioblastoma Multiforme

HOW DO YOU ANSWER THE HARD QUESTIONS?

Whenever I talk to a family about brain cancer, I tell them they can ask me anything. Normally they ask me sensitive questions about the end of life or navigating treatment. But sometimes, tougher questions come out. The toughest one is “how do you go on without your son?” There are many answers to this question. First, would be that my other family members need me. But second would be that my son would want me to be there for these people. It doesn’t make it any less bone-crushingly sad. On the contrary, walking through hell with these families is horrific and hard. It’s been six years since we heard the words brain cancer, a little more than four since David was taken from us. And while many point to the successes of the foundation and the progress in research that we’ve helped with, I can’t see that. All I see is the next person in treatment with no clear treatment path. I’ve been a fairly selfish person for most of my life but now all I see is other people’s need. David always had that sight so maybe he passed some of it along. 

Right now, somewhere a family is agonizing over their loved one’s last breaths. Right now, somewhere a family is hearing that the diagnosis is terminal. I know there will always be freak accidents that steal our loved ones away, but cancer isn’t like that. It’s a disease that we are on the verge of finding cures for, but each day that passes steals away another life. 

People struggle with the meaning of life, but I know that the thing that gives my life purpose is making the way easier for others. That used to be through simple things like doing my job well or making lunch for a teacher at school. Now it is by helping push scientific research forward. And I can do that even though I made a C in Mrs. Coley’s Chemistry class. And you can do it, no matter what your background is. We all have power. We all have a voice. Let’s use it to end cancer now. Right now.

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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