To the Parents of Children With Serious Illness — Being Sad Doesn’t Mean Giving Up
Today, as I waited on pins and needles for our oncology doctor to call with results, one memory kept playing over and over in my mind:
I was a week or so into treatment at the Carolina House eating disorder treatment center, sitting across from my new therapist. I was working hard to choke back tears and finally muttered, “I’m so sorry, I don’t know why I am so sad.”
She quickly replied:
“I can give you many reasons as to why you are sad and why you have every right to be sad: You are in treatment, during Christmas, and away from your family. You are grappling with the fact that you have a severe eating disorder that has stolen years of your life. Your sadness is beyond valid. Feel it. You need to feel it.”
That memory has always stuck with me. It was one of the first times someone flat-out told me — be sad!
My daughter Marjorie’s scan results seem to bring up the same feelings of devastation and sadness, but I outwardly want to say, “I don’t know why I’m sad. The scans were good.” Then I replay that memory — and I embrace the hurt, sadness and utter disappointment.
I received the news today that Marjorie’s scans were the same as the last. No new growth and no regression. Just the same.
So, yes, while yay for no new cancer growth, my heart is shattered. I want it to go down, I want the cancer to be gone!
Marjorie’s cancer continually proves that life — and cancer — isn’t always black and white. And I stomp my feet and say, “I want black and white, d*mn it!” I want the doctor to call and say, “Congratulations, your daughter is cancer-free!”
But she is not — and yet at the same time, she is. It is a weird world. So here is the science of what’s going on, deciphered by me. I am doing my best to understand it all with my marketing and television background:
Marjorie was diagnosed with neuroblastoma, Stage 4S. Her cancer was not in the cortical bone (outer layer) or bone marrow — which was awesome! Marjorie’s tumors significantly shrank following her two chemo treatments. And because of the huge regression, we were able to stop chemo and let her body fight off the cancer. The scans since our post-chemo scan have been nothing out of this world. Yes, there was a tiny regression on the last scan, but it was still there. This scan — no regression and no new growth.
Our insanely fabulous, kind and caring oncology team completely validate and understand our parental confusion, frustration and heartache. Marjorie’s specific diagnosis seems to carry a wait-and-see prescription.
The question our oncology team will begin discussing is whether we go in and biopsy the primary source — her adrenal gland. We were unable to biopsy it after the initial diagnosis. Her liver was so massive, going after the adrenal gland for a biopsy was too dangerous. Doing the liver biopsy alone was beyond complicated..
An adrenal gland biopsy would not come into play for a year or so, but if scans continue at this no-change pace, it might be an option. There are so many questions as to what is showing up in these scans: What is left there? What is going on? It could be anything from cancer cells to a benign tumor. We just don’t know.
What we do know is Marjorie is the happiest, most talkative and loudest baby around (I have no idea where she gets that from). She cracks everyone up with her. And the minute you meet her, you instantly fall in love. Marjorie absolutely adores her big brother and would rather play with a huge garbage truck than a doll. She wants to be in water 24/7 and counts down until bath time. Marjorie can crawl at what feels like 100 m.p.h. and loves to pounce on Lilly, her English bulldog. Marjorie is full of life, and nothing (not even cancer) can stop her.
Marjorie is so much more than her cancer diagnosis. Marjorie is a daughter, a sister, a granddaughter, a great-granddaughter, a goddaughter, a niece (and a grandniece) and a friend. Marjorie shares my heart with her brother and dad.
All I know to do at this point is march on. We march on together in laughter and in tears. We embrace the results, as confusing as they are, and march on. We cry it out. We hug it out. We dance it out. We will survive and embrace life until the next scan. Whatever the next scan brings, we will continue to embrace life after that.
We will march on. But before we march, before we take a single step forward, we will be sad. And that’s OK. It is OK not to think happy thoughts. It is OK to be angry at the fact that cancer even entered our lives.
Today has brought a lot of tears and many memories of those first days after our initial cancer diagnosis. Marjorie and I spent much of today without TV or music on — and if you know me you know that is rare! I love my music and always have it on and blaring. Marjorie loves it, too. Today, I couldn’t bear noise. I didn’t have the energy to talk on the phone, and I knew that was OK. I needed to muddle through the sadness.
Today, I let the sadness slowly sink in. I absorbed the hurt like a sponge and processed through it. I laid in a puddle of tears on my floor, thankful that I had the ability to accept and embrace my feelings. I know that tomorrow will be a new day, but in this moment and on this day, I am sad. So if you need me, I’ll be sitting in sadness and muddling in this scan… and that is OK. I won’t be sad forever, and it doesn’t mean I am not beyond thankful her cancer isn’t growing. It just means I am sad today. Sadness doesn’t mean weakness. It doesn’t mean giving up. It doesn’t mean negativity. It just means sad. I get to be sad — and so do you.
A version of this post first appeared on McCallDempsey.com.
The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.