Our Inspiration

Torie was your average, healthy, 16-year-old girl. She was full of life, beautiful, excelling in school and at the top of her game, socially. She was everyone’s sunshine and she most certainly was mine, along with her younger sister, Emme.

It all started the spring of 2012, when she began to struggle with a nagging cold. She was coughing and just couldn’t seem to shake it despite numerous rounds of antibiotics prescribed by her pediatrician. On June 7, 2012, Torie awoke and couldn’t breathe.  She said she felt like an elephant was sitting on her chest. So I decided to run her to our pediatrician before I hurried off to work.

As she was being examined, the doctor did a palpation exam on her stomach. Torie suddenly gasped and burst into tears from the pain of the push. Her reaction was startling and terrifying to me. I was expecting just a regular, routine doctor visit, with the usual spiel of, “It’s just a virus, you will have to let it run its course, etc.”, followed by a $50.00 exam fee.

Dr. Wagner then listened to the sound of her breath with the cold, hard stethoscope and appeared a little perplexed. I was watching the doctor’s body language (as mothers often do) trying to read her expression. I began feeling very nervous, as I could tell; there was a look of concern in her eyes. It was then that we were referred to radiology at the local hospital “just to be cautious”. After the X-ray, the nurse called me into the side room and said the doctor was on the phone and needed to speak with me. I will never forget that moment as long as I live!

The beat of my heart became deafening and my hands began to shake. I wanted to remain calm so I wouldn’t startle Torie. I was overcome with that “feeling” you absolutely NEVER want to have as a parent; that feeling, so full of dread, you’re afraid to breathe, to speak, paralyzed by powerlessness, to inevitably hear the unfathomable.

It was surreal when I picked up the telephone. I heard the voice say, “Ms. Costa, Ummm…. we see something in Torie’s radiograph. We’re not sure what it is, but it’s very concerning and I want you to go home and pack a bag. There will be a specialist expecting you at Hemby Children’s Hospital in Charlotte. We will let them know you’re on the way. Don’t panic! We’ll figure it out!”  The doctor finished up by saying “her entire left lung was encapsulated in fluid, so there was no time to waste.” We left, as quickly as possible, to go home to collect our bags to head into Charlotte.

As we walked out of the radiology department back to our car, Torie innocently asked, “Mom, am I going to have to get a shot?”  She then broke into tears like the big baby she was. I couldn’t help but chuckle a little as I swung my arm around her delicate frame and said, “Well, maybe Lovie, because they will probably want to do blood work, but it will be ok. Mom will be right there by your side!” However, inside I was dying. I was afraid she would sense my fear and even more terrified at what the doctors would find.

This happened the day after Torie’s last final for her junior year in high school. It was a beautiful sunny morning, a day when most kids wake up and are off to explore their summer freedom. Sadly, this particular June day changed our lives forever. It was the first day of, what ended up being a courageous battle, fighting a very rare cancer, with little chance of survival: Stage 4 Rhabdomyosarcoma. RHABDOMYOSARCOMA. RHABDOMYOSARCOMA. RHABDOMYOSARCOMA! I had to say it, over and over, just to learn the proper pronunciation. My perfect baby girl had Rhabdo-Myo-Sarcoma.

The next 3 weeks were a blur… needles, surgery, chest tubes, biopsies, bone marrow aspiration and intensive chemotherapy. If I had to choose one word to describe what was happening, it would be “NIGHTMARE!!” A 9 cm TUMOR was invading Torie’s diaphragm. CANCER was eating up my child’s insides. This day changed, not only our lives, but also the lives of everyone who knew and loved us. The following 3½ years consisted of grueling radiation and chemotherapy that literally burned the sole off of Torie’s feet. She was being poisoned by the treatment, which was intended to save her life; irony at it’s finest!

Torie fought a courageous battle with cancer and did it with astounding grace and presence. She looked at her fear, square in the eye, and said, “Yah…Try me!” Until her very last breath, the doctors were shaking their heads in amazement and awe over her stubborn will to survive. Her brave heart refused to stop beating. Torie wanted to live! More than anything in the world, I WANTED HER TO LIVE!  Torie had inexhaustible hope and an intense hunger for life that exists in few and inspired many. She wanted to be a catalyst for finding a cure for childhood cancer, and of course, she wanted to save her own life! The most devastating things to ever hear your child say is, “Mom, you have no idea how horrible it is to know that I’m dying!” or “I have so much to accomplish in this world, I can’t die now!  Not now!” or as she lay clutching my hand tightly in the hospital bed just a week before she passed, “Mom, do you think I’m going to die tonight?”  …Silence filled the room and I responded, “I don’t know babe…we’ll know in the morning. I hope not. But I want you to know that I love you more than anything in the world!” “I love you too mum”. But what I was thinking was, “NO!! NO!! NO!!  You will not die tonight, because I don’t think I can live without you.”

This moment showed me how delicate life can be. It showed me that time is priceless and life can sometimes be shorter than we expect. This is what people mean when they say “Seize the moment; Love the ones you love; Take chances; Dance in the rain; You only live once.” The day she was diagnosed, I began to understand this, but the days and hours before Torie actually died, I truly embraced this philosophy in my life. Life IS short, precious and irreplaceable, just like my Torie.

If I had an opportunity to say anything to Torie right now, it would be, “Your love and courage will live on inspiring others to help find a cure for childhood cancer.” Torie believed we could fight and win the battle of cancer by finding a cure. It literally broke her heart and scared her to death to witness this atrocious disease killing her friends, which she had come to know and love, during her brave battle with cancer.

Torie passed away on Christmas Day 2015. A day when most families are opening gifts and celebrating their joys, our entire family sat around a dreary hospital room and played all of Torie’s favorite songs in hopes of bringing her back to us while I held her hand until her very last breath. I rested my other hand on her slowly beating heart while she took no more than 4 breaths per minute and promised her that I would fight for other children so that no family would ever suffer this devastating loss or excruciating pain again.

In honor of Torie, the Torie Costa Foundation will continue to fight for a cure for childhood cancer and we won’t give up until we manage to assist researchers in finding it!

So, just like your mama always told you, my sweet Torie… It’s non-negotiable.  

Let’s get to work!!