What It Means To Be The Mother Of A Cancer Survivor

Wendy Short is the mother of Logan, a childhood cancer survivor that shared her storywith us in 2016.  Logan was Naya’s best friend and the Short family is an important part of our No More Kids with Cancer community. 

This Mother’s Day, Wendy is sharing her story – from a mother’s perspective. 

Here’s her story. 

What It Means To Be The Mother Of A Cancer Survivor

by Wendy Short

Logan’s Diagnosis

My youngest daughter, Logan, was diagnosed with Nodular Lymphocyte Predominant Hodgkin’s Lymphoma at the age of 11.   

Since I can remember, Logan always had a swollen lymph gland on her neck. It would disappear and reappear throughout her life but was always more prominent when she was sick. Then, we noticed the gland wasn’t acting the same as it normally did, and we knew something was wrong.

We went to her pediatrician three or four times and with no reasoning or results, we decided to try a new doctor. Her doctor ran multiple blood tests over a few weeks, and each test came back normal. We were frustrated and Logan was tired of the hassle and being asked about it in school. We decided that even though the tests were negative, we wanted to have the gland removed.  

When they removed the gland in Logan’s neck it was the size of a golf ball. They sent it out for testing, and it came back as Stage 3A cancer.  Which had spread from her neck to her groin.  

What it was like for me. 

My husband had the same type of cancer at age 19 and I always feared that one of my children would get cancer. But I never imagined it would be at such a young age. It was a blow to us as a family and to our entire community. 

I am originally from Antigua and most of my family still lives there. One of the hardest parts for me during this time was not having that support blanket of my family. I had support from great friends, and my family supported me from afar, but it was emotionally challenging not to have them with me. There are times when you just need your family. 

And I felt powerless while Logan was going through treatments. Her body was young, and the treatments were rigorous.  She went through 6 rounds of chemotherapy treatments and 15 rounds of radiation over the summer. Treatment was one week on, three weeks off. However, those three weeks off were never truly off.  I had to be constantly aware and monitoring how she was doing. We were back and forth to the hospital.

The chemo part was the worst. I would be in the room with her and could smell the toxic medicine. I would tell the nurses “you are feeding my kid poison”.  Half  of the treatments were in-patient because she needed to be monitored due to the dangerous nature of the chemo.

She had immediate side effects from the treatment. They had to give her other medicine to help with nausea and her side effects. This medicine made her act differently. 

Logan spent that entire summer either at CHOP getting treatment or as a shell of herself at home. It is so hard to see your child go through all these horrible treatments because you want to switch places with them, but you can’t. 

It was early November when we got that test results back and there was no sign of disease in her body. After that, you aren’t “cancer free” until five years.  Although the likely hood of her cancer coming back the first two years were high, Logan got through it and she is now on remission. Logan still sees her doctor at CHOP every six months for blood work and chest X-rays.

The side effects of cancer. 

We are still learning as we go. The treatments were so toxic that they still have effects on Logan and her body. As an outsider, you can’t tell but there are day to day issues that Logan still faces. 

Her bone density isn’t very strong, so she has a lot of muscle pain which makes some activities too taxing on her body.  The treatments also affected her learning. She had to learn to study differently than she did before cancer. It’s not as easy and she needs to slow down. But we work together, and she is getting better and better every year and learning how to cope with the effects. 

What it means to be the mom of a childhood cancer survivor. 

You know, I always thought that I was strong.  But Logan is much stronger than I am. She is the one that got me through it. She was always positive throughout the process, even when she was scared. 

We still live each day one day at a time. The closer she gets to each milestone – no sign of disease, two years cancer free, and heading toward five years free - relieves a little bit of stress. However, it is always lurking in that back of my mind that there are still risks.

That’s why I am so grateful for No More Kids with Cancer and their mission to fund less-toxic, more effective treatments for children. I still remember the doctors’ telling me the horrible risks of the treatments for Logan, but we had no other option than to put her through it. It’s a double-edge sword, especially as the parent that has to sign off on the treatments. You just hope and pray that it works and your child is one of the lucky ones. 

I thank God every day that we were so fortunate, and Logan survived cancer.  A lot of times I wonder “Why me? Why did my child survive?”.  I think this not because I am ungrateful but to say thank you to God because I know the alternative. I know I am one of the lucky ones and one of the blessed ones that gets to see their child beyond cancer. I am able to see Logan every day as she grows up.

It’s an honor for No More Kids with Cancer to share Wendy’s story on Mother’s Day because it reminds us of the strength of a mother, especially during the most challenging times. This Mother’s Day, give your mom a gift that gives back by donating in her name to No More Kids with Cancer. Your donation will help us fund better treatments for children with cancer.

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.

Grateful.

Supermoon over Athens

I am in awe of the moon and space. Space represents something so much bigger than me. I wonder at the moon every night and think about what's beyond the moon. It's soothing to see the moon when I'm seeking answers about where Naya could be.

The supermoon won't be back for many years. I know that Naya would have stayed up with me to see it, because she always sought to discover and enjoy life. In some respects, her life was pure. No motives to analyze and no contests to win. She didn’t care about who liked her, and she knew who she could trust, who really loved her. 

I think about everything Naya went through everyday. The agony, pain, fear, life of a sick child and everything that she endured. Reliving what she went through hurts me more than losing her at times. If you’re a parent, you know the gravity of that statement. Yet, I believe she didn't experience days in the same way. She lived and she was happy. 

I remind myself as I get worried about the next thing - the "not done" list, the bullies, the hard meeting - that such things can't take away happiness. My daughter endured agony to have the chance to live, and while she was in agony, she was happy. 

This Thanksgiving, I continue to be grateful and incredibly thankful. Thankful for my friends and family. Thankful for the friends who have been with me all along, and the new ones who have entered my life with great love, warmth and generosity. Thankful for good health. Thankful for our good fortune. Thankful for the love of my life, Hank, our wonderful son Zak.

I am so grateful for Naya, her unconditional love, who she was and the lessons she left me, including one that is elusive at times. To simply enjoy the gift of life.

Year 2

It's been two years since Naya passed. I can only hope she's at peace and with my mom. I hope she doesn't know our pain. I hope she can see every ounce of support for her dream to cure childhood cancer. I hope she can hear every time people share how they've been inspired by Naya.

I want so badly for Naya to know how much this world loved her, and how deeply Hank, Zak and i loved her and still do. Without Naya, we're like a three-legged stool. We're missing a part of us every day. A part we can never replace. 

Last night at the Purple Ball, we raised a lot of money for childhood cancer research. I felt Naya the entire night. Listening to her playlist, dancing to her favorite songs, singing with her great voice, laughing with her exaggerated laugh and chatting nonstop with everyone. She got me through last night. I wasn't going to let Naya down. Each day, she gives me strength to stay positive and lead with love and kindness. I may not always succeed, but she's pushing me to be and do better. 

In Naya's honor, I want to remind all of us of how special she was to so many of us. I wrote this for her service. I re-read it from time to time. I thought I'd share it again. You can also find this on our website by clicking here 

About Naya...

When Naya was very young, there was something about her that screamed, “I’m going to make an impact on the world." We always knew she would do something on a very large scale. Maybe be President of the United States or save whales and oceans. It was going to be something big; we were sure of it. And whatever she did wouldn’t be about her personal notoriety.  She wasn’t interested in fame, although she had the beauty, voice, confidence and dramatic instincts to be famous.  Whatever she chose would be about saving the earth, saving animals, helping people or what we now know, helping to cure pediatric cancer. 

Naya was happy her entire life. We have thousands of pictures showing a girl with a beaming smile, great confidence, laughter and spark. Her smile captivated all who knew her. She surrounded herself with things that made you smile or laugh. Her brother Zak, mom acting very weird, dad kissing her after a sweaty workout, dogs, funny mementos in her room, her horse, and her friends all brought a smile to her life. She stuck to funny shows and movies: Grown Ups 1&2, Modern Family, Saturday Night Live, Jimmy Kimmel. We laughed a lot together. 

While there was such a childlike essence to her, she also had many qualities of an older soul. She was deeply contemplative, almost as if everything she did would somehow have a bigger meaning. She embraced her femininity, from wearing Marc Jacobs perfume to her exclusive jewelry collection, her extensive lip gloss collection, her desire to dress up in style for special events and dinners. She was nurturing towards younger children, her puppy gabby and even her cousin Eli.  She wanted to be a mother and would have been the envy of all mom’s had she had the opportunity.

She was THE girl who left a room with energy, light and brightness 10 times her size.  She could carry on a spirited conversation with anyone at anytime.  She was SO confident. She had an opinion about everything and her eyes would convey an intensity that would cause you to really listen, pause and even rethink your own opinion.  Her views came from many places. Hank and me, school, teachers, reading, TV, movies, museums, doctors, nurses, you name it. She was constantly curious, wanted to learn, absorbed every detail and had a crazy memory even with her cancer.  Many times we were in awe of her raw intelligence, and wondered where it would take her.

Anybody that has a child has had his or her share of negotiations. If you had to negotiate with Naya, watch out.  It was likely you would end up on the short end of the stick. In the last year, she managed to negotiate $15,000 for a wedding dress; all of my jewelry, purses and shoes; our really good artwork; college tuition paid through her Masters degree; and even charged her Uncle for using our pool for $200 + 3 sushi meals for the season. The only person that could take her on was her oncologist, but even he had to be ready. 

Naya lived her life in full color and force. Whether it was dancing, singing, riding horses, riding roller coasters, doing crafts, swimming or skiing, we had one active girl. Most of her activities were done for pure joy and fun. She didn’t compete against others; She was her own competition and set her own goals. 

One year after her brain surgery, she was on the slopes of Vail skiing. Her weaker legs and stamina didn’t stop her. During her relapse, with full knowledge that she had a tumor, she set a goal to return to cantering and she did. The day we learned her tumor was still growing, she jumped in the pool and learned the backstroke in 10 minutes. She stuck with school as much as she could.  Just one month before she passed away, she was learning geometry and biology. She got back on her bike, into school, on her horse and on the slopes. Nothing stopped her.

Intense people are often not very warm to be around. This is where Naya differed and stood out. Naya possessed a deep ability to feel for others. If you were special to her, she would find or make a present for you that was personalized and often paid for by her own money. She thought long and hard about the individual and would create something that conveyed how special that person was to her. Many of us have something from her, and we all treasure her personal creations. 

Outside of her circle, she felt for the hungry and needy, the kids at CHOP who had severe disabilities, animals going extinct and anybody in need. The CHOP Parkway Run became her way to channel her deep sense of commitment to children with cancer. She not only wanted to raise the most money, and double it every year, but also wanted to establish a foundation that would give all profits to help cure pediatric cancer. She wanted her leftover college money to go to that cause. She felt that she would be able to save lives. Every child or teenager she met was an inspiration to her and this cause. She wanted to do it for them, because she thought she was going to be fine. It wasn’t for her; it was for others. 

Cancer revealed the depths of Naya's personality and soul to the world too soon. She grew up fast during her treatment, and as a child, was forced to get through a very difficult time and keep looking forward.  She did with such grace. She never blamed anybody, or asked "why me?" She knew it was the card she was dealt and she faced it with daily courage, head on. When we would apologize for her pain and suffering, she would always say "it's not your fault and I will be okay."  Every day was a new day, and every day come with a new possibility to be better. Some days were full of wonderful experiences; some days were measured by eating enough calories and having a good night's sleep. In her last days, she left this world peacefully and gave us, her loving family, the gift of peace and a legacy to grow in her honor and name.

Naya left us all with special moments and lessons. As her mother, she left me with a bond so strong that I can only describe it as one that is held between soul mates. She will forever be with us. She taught us so much. To have an open heart, be compassionate, give to others, love with conviction, live life to its fullest, overcome any obstacle or hardship, lighten up and laugh. We see and feel Naya's presence every day, and will see her again.

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.

Ellie

I can't sleep. My mind is swirling with everything I need to do at work. I finally gave up trying and came downstairs figuring I might as well not fight insomnia.

The house is still, so quiet. I can breathe and think. The air conditioner has a low hum that's oddly relaxing.

As I sit in the quiet and observe my surroundings, I find myself immersed in Naya thoughts and stories. They are a tidal wave tonight. 

In the family room, we have the couch she helped choose. I remember the time we picked it out. It was the week before the ER trip that changed our lives. When it arrived, she took it over. It was her couch and she appropriately named it the "girls couch". It drove her crazy when Zak would sit on it. Poor Zak would be kicked off every time. Now it's Zak's couch, and Sam jumps on it. I sometimes think Sam sits on that couch because Naya is luring him to it.

I see one of her favorite stuffed animals - Ellie - on the fireplace mantle. Her favorite one, Murphy, was always with her, even as she left the our world. Stuffed animals played a large role in Naya's life before cancer. Before she got sick, she had at least a dozen stuffed animals in her bed. At bedtime, she'd spend what seemed like an hour arranging her animals. On nights when I was exhausted, this routine would drive me crazy. But it was equally adorable and lovely. Her 3 'sister' Au Pairs - Claudia, Anna and Karolina - all have their own stuffed animal that was bought with or by Naya. Claudia's is the original Ellie. 

Naya with Claudia - the original Ellie owner.

The hospital psychologist told us how familiar things, like favorite stuffed animals, were comforting to kids going through the scary journey of cancer. She was right. Naya's animals - stuffed and real - kept her happy, comforted and feeling at home. Naya was so strong and an old soul but she was a child, terrified of the word 'cancer' and thrown into a world that was out of her control. We never fought Naya on taking Ellie and Murphy on trips, even though they took up 1/2 the suitcase. 

Ellie, a Build A Bear stuffed rabbit, kept Hank company when I was sleeping with Naya. Naya eventually bought Hank his own Ellie for father's day so that he would stop borrowing her Ellie. The second Ellie is in our room and its original Build A Bear box is in Hank's closet. I wonder if the psychologist would have predicted how important the stuffed animals were going to be to us.

There's more surrounding me. Pictures of her smiling or laughing, things she made, things we picked and bought together. I've kept the important things. The things that remind me of our experiences and life together.

As I write, I'm realizing my insomnia is because I've let life get so busy that I have starved my need to connect with Naya. I don't get to hear her voice anymore, hug her or just be with her. Everything I have is stored in my memory, and the things in our home help me reconnect with her. 

My heart has a constant wound. It's like someone ripped a huge piece of it out. I know it'll never heal. I'm okay with the pain. It's existence is important and sometimes the more it hurts, the better I feel. There is beauty in the pain as it reminds me of how beautiful my life with Naya was, and the gift I was given.

Even though I can't touch her anymore, Naya is as real to me now as she was when she was alive. Thinking about her and having her things around are my stuffed animals. They comfort me, and remind me of her energy, generosity and love of life. I feel myself more at peace now. While my heart is aching and tears are streaming, the tidal wave is allowing me to reconnect with Naya.

It's 5 a.m. and the birds are awake. I'm tired but no longer starved. A good day awaits.

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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