Please Keep Watching. I Know It's Hard.
Updated: Feb 10, 2020
Five years ago, I was a brand-new mom, with a sweet little bundle of joy that my husband and I had spent two years trying to bring into this world. We never thought she would come, but when she did, she was everything we wanted and more. She was perfect.
When I looked at her precious face, I didn’t see cancer. Yet, after two years of doctor’s appointments, questions, ER trips, online research, and sleepless nights over her tummy pain and symptoms, we would learn that it was there, lurking.
Countless times I was told to relax, not to worry, that I was just a “new mom.” Yet, I KNEW something was not right. I just never dreamed it was cancer. I point this out, because often cancer patients’ journeys begin long before diagnosis. Often, they are exhausted before they ever begin to fight. We were exhausted. Yet, our battle had just begun.
I became a cancer mom on a sunny, beautiful day in April. My sassy two-year-old and I had just spent the day outside, shopping at little shops and eating lunch at our favorite cafe. We were having one of those days that every parent yearns for and looks back on fondly. In fact, I remember thinking to myself just how wonderful it was. How lucky I was.
I had no idea that in just a matter of hours that that perfect day would become my worst. Yet, as I ran screaming for help through a quiet library, with a struggling baby in my arms, I began to realize. After all, children don’t collapse for no reason and I knew on the drive to the hospital that our lives would never be the same.
All I can remember is a tiny room, with a strategically placed box of tissues, and a man in blue scrubs saying words that I did not hear. I was too focused on my sweet, little pig-tailed princess, who was laying cradled in my arms, sleeping after a long scary day. I watched my tears fall onto her tiny cheek, and gently swept them away.
“I’m sorry to say, but your daughter has a mass in her colon. It’s decent in size and from our images, appears to be a tumor. At this time, I hate to say the ‘c’ word, but it’s possible. We are going to need to do some more testing but…”
That is it. That is all I heard.
People say that I was strong. That I was a mama bear, but inside I was numb. Gone.
I just kept looking at my sweet baby’s face and thinking of life without it.
I was crying in closets, showers, and bathroom stalls. I was going through the motions necessary for Scarlett, but I was devastated, and felt like I was trying to hold onto something that was slowly slipping away...
In fact, the first night in the hospital room I laid awake watching her every breath. Unable to shut my eyes, I climbed into the crib with her. I was afraid that I would wake up and she would be gone–that I wouldn’t remember her smell, touch, or the sound of her little snores. I am so thankful for the sweet night nurse who peeked in and understood. Later that day, I was given an adult bed so that I could soak up every moment.
A few days passed, and we began to get our bearings. I remember talking to my family and using the typical “Why her?”, “Why us?” lines. Yet, after walking the halls, I quickly stopped expressing that sentiment, because...
“Why any of us?” Still, those questions turned to anger.
I HAD a happy child and husband, a brand-new home we built for our daughter, a wonderful job, and a new routine that was feeling SO secure that my husband and I were thinking about baby number 2.
But now... that career? Gone. That routine? Gone. That new house? Gone. That marriage? Gone... even though we both tried. And, that new baby? Gone..lost to a miscarriage.
Because cancer doesn’t just affect the patient. It rips through the entire family- moms, dads, siblings, grandparents, aunts, uncles, cousins, friends... everyone-, creating unbearable stress, tearing everything it can apart. Still, Scarlett's father and I could swallow ALL of those losses, because we hadn’t lost our girl. For that, we will always be okay.
Scarlett, though, has sadly lost more than anyone should. She lost moments of her childhood, her carefree life, and great deal of her colon. Yet, the worst loss was her innocence, her trust in us. After all, cancer is not easily explained. Going from happy days at home to hospital beds, shots, surgeries, IVs, and medicines was impossible to convey. Every look of confusion, betrayal, and cry for us to help, cut like a knife. In fact, one scary morning as her nurses were holding her down for her NG tube to be placed, a terrified Scarlett looked up at me, and in desperation said...
"Please Mommy, I’m sorry. I’m sorry.”
It was then that I realized that she thought that she was being punished. That she did something to deserve this. To deserve cancer. I grabbed her tiny face and told her that none of this was her fault. That she did nothing wrong. She was so good. She was so brave. She was loved.
Today, Scarlett is five and she knows that she is loved. She is flourishing and we couldn’t be more grateful. She is sassy, sweet, and wise beyond her years. Yet, we know that she will always suffer from decreased immunity, ongoing GI issues, and PTSD. PTSD is often a severe side effect for warriors. Parking garages (like the hospital’s), gloves (like a doctor’s), and children’s tattoos (like the numbing strip for IVs), are often triggers that remind medically complicated children of their struggles and trigger overwhelming panic attacks.
Scarlett still has to endure hospital visits and scans. After all, there is no prognosis, no plan. We are just living day to day – like most pediatric cancer patients- praying that the cancer stays away. You see, adult cancer treatments have come a long way, but pediatric, not so much. In fact, pediatric cancer only receives 4% of the National Cancer Institute’s funding. The drugs, treatments, plans are all geared to adults, and childhood cancer is quite different than adult cancer.
For this reason, more children die from the effects of cancer treatment than cancer itself. So, we will always fear scan days, overreact to comments like “I don’t feel good,” and worry about the future. We will always be scared.
I will always be scared.
My five-year-old now acts like a 14-year-old. She has lost friends to this disease- like her best friend and role model, Jilly. She has had to grow up, like all warriors, very quickly. Knowing and hearing more than she ever should. Yet, we are lucky, because most pediatric patients also grow up with heart damage, hearing loss, liver problems, secondary cancers, and loss of limbs. Many of the children, are living life from inside the walls of the hospital or watching over from heaven.
As you can imagine, having to live with this fact is infuriating. So, I channeled all my anger, sadness, and fear and created something positive to help others make it through what I feel like I barely survived. Over the last few years, the 501c3 nonprofit called Feel Better Foundation was born. The nonprofit helps families create meaningful living and memorial legacies for children with life-threatening conditions, diseases, and cancers. These legacies are extremely therapeutic and help families heal, cope, and move forward (knowing that they are making a difference in the lives of other families battling).
I met so many wonderful people through Feel Better that I began to see the need for even more support. Feel Better Mom was then born. Feel Better Mom focuses on supporting and empowering the moms of warriors- so that they can then empower their family. Free counseling, support groups, pampering days, workshops, and classes are offered, with the help of the amazing nonprofit, Cancer Support Community Central Ohio.
These legacies, Scarlett's legacies, are everything to me. The relationships I have made, the hope I have seen, the love I have witnessed is incredible. Yet, if I am being honest (and I have been VERY honest with you all), most days, I am drowning.
Because for every child I see prevail, I help bury another. For every clear scan one of our kids gets, another relapses. No matter what I do, I cannot stop cancer and I cannot take away each family’s pain. Regardless of how much I want to. That is why I so greatly appreciate my community, group of cancer moms, and my family and friends because with them...
I do not feel so alone.
Because the sad truth is: I am actually NOT alone. In fact, a child is diagnosed with cancer every 2 minutes. People don’t often believe that there are 16,000+ certified cancer moms in one of the national support groups and more than 160 in our Feel Better Mom. Yes, that is 160 local moms that I stay up late with, visit at the hospital, and cry with. And 160 kids and angels that I love.
So, please know that all the cancer families are incredibly grateful for people like YOU, people that SEE us, that read these blog posts, share our stories, donate to research, retweet an eye-opening cancer statistic, or promise to say a prayer for us at night. We are grateful for people that instead of looking away, SEE that we are struggling and wish to help- in any way they can.
Because pediatric cancer is not biased- it doesn't pick and choose. One day, you could wake up in my shoes.
This could be your blog post. You could be watching your child suffer, feeling helpless. You could be starting a nonprofit and seeing how much red tape there is, petitioning on Capitol Hill with no change, praying until your hands are sore, watching children be taken even though they endured 20 surgeries and did everything right, watching other nonprofits promise wishes and gifts that will never come, and seeing how little people want to be involved when there won't be a "thank you" Facebook post to them after...or worse... use your child and their struggle to profit for themselves.
Pediatric cancer exists because we allow it to- giving it so little funding and attention. Because we, as good humans, struggle at seeing children suffering. We sugarcoat things- to protect our hearts. We only share and see the positive, the light at the end of the tunnel, because that's what we so desperately want to happen.
Yet, this wishful thinking doesn't do us any favors. This desire to only see pediatric cancer as cute bald, smiling children on TV, doesn't help us. We need to open our eyes, because so many of our babies are not reaching the light at the end of the tunnel. They are not making it. They are not okay even when their hair grows back and their scars fade. Their burden is lifelong and can be hard to spot. So, we need to remember that in order to fix something, we must first SEE the problem, the REAL PROBLEM.
Thank you for seeing the problem. Please keep watching. I know it's hard.
Now Please: Share. Donate. Pray. Raise Hell.