“We love you. Please, remember that.”
“What can you say to someone that has given up hope?
This is a question that I was asked to answer, and frankly, my husband and I were floored. How can someone even ask such a thing? How can such a possibly even exist in one’s mind? Are there really people out there in a position so dark they are considering an existence without the possibly of hope?
It was my husband Richard who answered first. He said the first thing that came to his mind:
“We love you.”
We know how it feels to see your child suffer. My amazing daughter Piper was dealt a bad hand before she was even born. Twenty-six weeks into my pregnancy, she was diagnosed with Type IV sacrococcygeal teratoma, or SCT. Essentially, SCT refers to a tumor growth that appears on Piper’s coccyx/tailbone, with Type IV meaning that was internal and had the highest rate of malignancy. When she was only four days old, she had surgery to remove a tumor the size of a golf ball, along with her tailbone. Unfortunately, during surgery, there was a rupture that leaked out into her body. Our doctor, who is wonderful, flushed out the area as best as he could, and even though he was as aggressive during removal as he felt he could be, the following pathology report came back with positive tumor markers on everything that was removed. If the tumor came back, he told us, it would probably come back before Piper was five. She was 15-months old when it reoccurred.
On December 2019, an MRI found what we dreaded. The tumor was small, about the size of a pea, but it was there. It was also in one of the worst places it could be — right under her belly button on her spine. Theoretically, it could be removed, but it would be an exploratory surgery that would almost certainly leave her with life-long side effects. The best option was to install a port and begin chemotherapy. The risks were significant, including potential hearing loss and an increased susceptibility to other cancers when she is older, but it was the only realistic option left.
I remember everything I felt at that moment. We were heartbroken. No child should be sick. They did nothing wrong. Piper did nothing wrong. She’s my ray of light, my fighter. When we first started chemo, Piper hated needles, but now she has no issue with them. Sometimes when we get into the car just to go to the store, she looks at me and asks, “Doctor now?” When the doctor needs blood work, she’ll smile and hold out her arm for them. A child deserves to be healthy, I believe that. But we didn’t get that. Piper didn’t get that, and no matter how hard I might pray that God let me take her place, I can’t.
Every day was an experience staring into the unknown, scared to death of what might happen next. We were required to constantly monitor her blood work for the next five years. One bad report, and our lives would change forever. And even if that report never comes, what about what’s already happened? I thought about what children might say about Piper’s scar on her back, the teasing she might experience. I thought about what consequences she might have to deal with throughout her life, all for something that she never deserved to have happen to her.
But we never lost hope. Never. Even at times when we saw the worst of what life can offer, we also saw the best. The outpouring of support we’ve experienced has been incredible, from our family, friends, doctors, even strangers. And in some ways, we’ve actually got to play a small part in something bigger than us. For example, Piper has gotten to take part in a study for SCTs with the hope that researches will get to find some answers for families down the road so they don’t have to go through what we did.
We also learned just exactly who are daughter really was. We learned that she is a fighter. Nothing in this world will ever make her back down. She will never give up, never stop advocating for what is right and what she is passionate about. Seeing the kind of woman she is growing up to be right before my eyes give me hope — no, certainty — that no matter what happens everything will be okay.
As of now, Piper’s cancer has been in remission for 19 months, and now hopefully for the rest of her life. Remarkably, other than the scar on her back, there have been no lingering effects. Her speech development is perfect, and she’s shown no signs of hearing loss. Actually, she’s developing into something of an adrenaline junkie; she’s really developing a liking of rollers coasters. We are so thankful, and I like to think that her fight, even this early in life, has changed her, has given her something like a superpower that’s going to do some good in this world.
Piper’s experience has changed us, too. It opened our eyes to the good around us. It has made us want to pay it forward, to give back where we can. In some ways, we actually feel bad we never noticed it all before. On our hospital visits, we all too often see families and children that are far worse off than we are. We want to make volunteering, and giving back, a part of our lives to show others all the wonderful things we now see. You are never alone, and we want to dedicate our lives to helping others realize that.
Richard and I aren’t big religious people, but we do believe in praying out loud. I know the thoughts that go through parents’ minds. What kind of God would let a child get sick? But I want these parents to know they are loved. We love you.
When hope feels lost, I want you to say that to yourself. You are loved. You are loved by us. You are loved by your family. You are loved by people that you may not even know, that may just send their prayers to you on a Facebook comment. Feel it. Embrace it without shame. Use it to cherish every waking moment and make the most of the time you have. This life is a gift. This very moment, right now, is a gift.
We love you. Please, remember that.”