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Please Keep Watching. I Know It's Hard.

Updated: Sep 2, 2021

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 a 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 six 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. 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. In fact, 95% of pediatric cancer patients will have severe or life-threatening latent effects from their cancer or the treatments that they endured.

Did you know that a secondary cancer is often a side effect of pediatric treatments? Curing one cancer while giving them another.

Some additional latent effects include: Hearing loss, heart failure, vision loss, memory loss, limb loss, lung damage, dental problems, digestive system problems, lymphedema, endocrine and hormone problems, neuropathy, PTSD, depression, learning disabilities, and extreme anxiety... and oh yes... many of them will never get to have families or children of their own due to fertility loss. Generations gone.


But it's alright because it is so rare right? A thing of the movies, a commercial on tv. Cute, bald, smiling children. I wish it was, but that is not reality.


The Reality: A child is diagnosed with cancer every 2 minutes and at any given time in the United States there are more than 40,000 children receiving gut-wrenching, painful treatment for cancer. They suffer. Truly suffer.

But that wouldn't and couldn't happen to your family right? What are the odds that YOUR child in the U.S. would experience this by the age of 20?

1 in 257 if you have a boy 1 in 272 if you have a girl

My child was 1. I pray yours is not. I pray for more awareness, because awareness creates change.


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 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.

-MJ


Now Please: Share. Donate. Pray. Raise Hell.



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