Scarlett and Mommy

Written by Melissa James, Scarlett’s mother

I became a cancer mom on a sunny, beautiful day in April. My sweet two-year-old girl, Scarlett, and I were having one of those days that every mom yearns for, just us, our mommy and me time. We decided to read some books at the library to end our perfect day. Halfway through a book, I saw Scarlett’s face change. She looked up at me, let out a cry I will never forget, and collapsed in my arms. I ran screaming for help in that quiet library. I do not remember how we got to the hospital, but we did. I just know that I held her hand the entire way and she never grabbed mine back.

After a long day, we were sent home with no answers and no plan, but with a promise of an appointment with a specialist. I was furious, terrified, and not ready to give up. We drove to our pediatrician and I demanded a scan. We were not given one, but as we left the building, my daughter collapsed in pain again – this time, in front of them. We were taken for scans.

This part of my story is blurry. 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 and…”

That’s it. That is all I heard. 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.

Before this, I HAD a happy child and husband, a brand-new home we built for our daughter, a wonderful job, and a routine that was feeling SO secure that my husband and I were trying for baby number 2. Now – my career? Gone. Our routine? Gone. That new house? Gone. That marriage? Crumbled. And, that baby? Passed away by miscarriage due to stress.  Still, I could swallow ALL those losses, because I hadn’t lost my daughter.

Scarlett, though, has sadly lost more than anyone should. She lost her childhood, her carefree life, and most of her colon. Today, Scarlett suffers from decreased immunity (she cannot play on public playgrounds, go out when viruses are high, or attend school half the time), and she has GI issues that land us in the ER every few weeks. Her PTSD and anxiety are often so severe that parking garages (like the hospital’s), gloves (like a doctor’s), and children’s tattoos (like the numbing strip for IVs), are triggers that remind her of her surgeries and cause panic attacks. She has lost friends to this disease, watched them fight and wither. She has had to grow up, like all pediatric cancer patients, very quickly. Yet, we are lucky, because most pediatric cancer patients also grow up with heart damage, hearing loss, liver problems, and loss of limbs.

Scarlett managed to make it to remission without those issues. Yet, she still must endure hospital visits and scans every few months. You see, there is no prognosis, no plan, we are just living day to day, like most pediatric cancer patients. 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.

This is why I searched for support online, and that’s how I found Cancer Support Community Central Ohio. When I met with them, I knew I had found a place where the other moms I knew could find support. I could find support. The people there are so supportive and understanding. They make it possible for me to share my fears, to not feel so alone.

But the sad truth is I’m NOT alone. In fact, a child is diagnosed with cancer every 3 minutes. People often don’t believe that there are 16,000+ cancer moms in one of the national support groups and more than 120 in my local support group, Feel Better Mom. Yes, that’s 120 local moms that I speak to daily, stay up late with, visit at the hospital, and cry with. And 120 kids and angels that I love.

I’m so grateful that Cancer Support Community Central Ohio has programs for all these pediatric families I’ve become so close to. There are support groups and individual counseling, grief counseling, resources to destress, including yoga, art therapy, and cooking classes, and programs for our cancer kids and their siblings to get together and have fun while they learn. All of it is SO valuable and needed. And it’s all provided at no cost, which really important, because sadly, as you can imagine, pediatric cancer comes with extremely high bills, the loss of jobs, and very little time and money for self and emotional care.

Today, Scarlett is four and she’s in remission. She recently had a routine scan that came back clear! We are continuing to attend the programs at Cancer Support Community, which have been an enormous help. Cancer may have broken our hearts and made us question everything, but all the supporters at Cancer Support Community make us believe in humanity again. You make us see that there is still some good. That we will get through this, together, as a community.