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.

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.

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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Inaction Is a Disease

In less than 2 weeks, I've learned about five people I know either very or pretty well, that are dealing with a battle with cancer, and a battle to live. Their ages...12, 27, 40, early-40's and 43. And, if you knew them, you'd understand that each one is a person that has the ability to change the world.

I know you're thinking "Well, that's Amy. She is in the 'world' of cancer.  That's not me. Cancer is rare, especially in kids." If you are thinking any of this, realize that cancer is not rare, and it kills more children than any other disease. No disease comes close! Cancer. It's about to take over heart disease as the #1 killer. 

I ask myself everyday - why isn't this changing? What's the fundamental, underlying reason why we aren't urgent about childhood cancer? How many videos do we have to see of kids battling this horrible disease to stand up for kids?

The change in the last 20 years is incremental. "Incremental" is my latest word to define disgust. 'Incremental' represents death. Extreme? Maybe. But, maybe not. If it's you, or your kid, than not.

I've come to realize that there is a fundamental disconnect with knowledge and action. This inaction is, in itself, a disease. A disease that kills.

My time is spent figuring out why. Why is this not getting the focus it needs when the data is so clear, and the stories are so upsetting? Kids are losing their future. What's going on?

Let's figure it out together. Join Us. @nomorekidswithcancer or nomorekidswithcancer.org

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