September is Pediatric Cancer Awareness Month, and in honor of Princess Alexis, I wanted to help bring awareness by sharing some of her story. This photo session took place in August 2017, with the ripeness of summer warmth helping us celebrate her incredible new diagnosis: REMISSION. What a beautiful, wonderful, splendid word! I wanted to make her feel like a fairy tale princess, so I rented this spectacular Cinderella dress from Anna Triant Couture that Alexis picked out, and we drove out to The Village at Grand Traverse Commons, with it’s spires and golden brick castleish beauty before heading to the beach at Clinch Park and downtown Traverse City.
Alexis is a cancer warrior, but for this one night she wasn’t a little girl in remission, with surgery scars and an old soul, she was simply a princess, believing her dreams will all come true! I had grandiose ideas of poses and places, but honestly, I barely got a handful of images of her looking and smiling. She was in her own world, twirling and dancing, talking a mile a minute, running here and there with me trying to keep up. I finally gave in and just let her be a princess. Like she was always meant to be.
Alexis: “Did you know that EVERY year on Halloween, and I mean EVERY one of my EIGHT Halloweens, I have been Cinderella?!”
Girl, you don’t need a Prince Charming or a Fairy Godmother, you were BORN a Warrior Princess!
Every day, 43 kids are diagnosed with cancer. Despite the advances in research and treatment, those numbers continue to rise. More than 40,000 kids will undergo treatment for cancer this year. One out of 8 will not survive.
I don’t know about you, but I can’t even write those words without crying.
The average age of diagnosis is 6. Kindergarten age.
Alexis was 14 months when her parents found themselves in a nightmare that they couldn’t wake up from. Walking into the ER with a sick baby, it was then a whirlwind of tests, scans, and the sobering reality of stage 4 neuroblastoma. They didn’t go home for 44 days. And that was just the beginning.
If you’re like me you’re wondering, what can I do? How can I help? First, pray for these kids and their families. Second, get in touch with your nearest children’s hospital. I guarantee there is a link on the website to either donate or volunteer. Check it out. Ask yourself honestly what you can do to make things better with the resources you have. Get involved. GO now.
I’m hoping to bring awareness to childhood cancer. But the reality is that no amount of statistics and numbers can really reach you. It’s the stories. The faces. The families struggling to bring some sense of normal back to the lives of their children who are so sick. Hoping the nightmare will end. Praying the pain will stop because watching your child in agonizing pain is a special kind of hell.
In the beginning of the journey lots of people offer help, stop by, bringing food or gifts, trying to find ways to comfort, but often they grow discouraged or feel helpless when the fight drags on.
I remember when my son was diagnosed with a congenital heart defect and we went through the process of corrective heart surgery, tons of doctors appointments, driving all over, plus having an infant and toddler to care for felt overwhelming. It was nice when well-meaning people would ask me how they could help, or to “let them know” if I needed anything, but my mind would go absolutely blank. I couldn’t organize my thoughts into broad helpful ideas, much less concise instructions or particular needs. At times the burden of asking for help when I was such a mess was simply additional weight on my shoulders.
A family dealing with a child who is fighting cancer goes through something much more intense than what we experienced. With a much longer time frame of appointments, hospital stays, restrictions on visitors and an unforgiving need to prevent germs and infections.
Start by asking “How can I help you?” If you get the deer-in-the-headlight look, try more specific questions, like “Can I bring you a hot meal tomorrow for dinner or one to put in the freezer for later?”, or “Is there a day this week that I can come pick up the other kids and take them to the park or keep them all day so you can rest and focus?”
Think of what you know about their particular situation and possible difficulties and ask specific questions. Don’t feel bad if they don’t respond right away or not at all. It’s not personal. They’re just overwhelmed and trying to survive.
A few things that are ALWAYS helpful:
Gift Cards. Think Wal-Mart, grocery stores, and gas cards.
Home cooked meals.
Hospital life is not only emotionally exhausting, it’s expensive. It’s being away from home for weeks on end. The meals aren’t free and sometimes aren’t very good. Driving back and forth to take care of your responsibilities at home takes money for gas. And then there’s the time off work and the loss of pay. As if your child being sick isn’t devastating enough. Gift cards might feel too impersonal, but they relieve some of that very real financial burden.
If you do not know someone personally who is going through this, I hope these stories touch your heart and that you donate to organizations or take the time to volunteer!
Alexis was in the fight of her life for far too long, but is officially in remission since July 2017!
“We shall draw from the heart of suffering itself the means of inspiration and survival.” ~Winston Churchill
We balk at suffering. We hate it, turn away from it, close our eyes and refuse to see it, until it’s someone next to us. It makes us feel helpless and we seek comfort, peace, and safety so hard that it blinds us.
We’re terrified of suffering, and in our blindness we fail to see that suffering has power. It’s never wasted. From the ashes of their innocence these children rise up as warriors, full of hope, strength, purpose, and a passion for helping their fellow sufferers. Listen to their stories. Empower their dreams. Support the supporters.
“Alexis, what do you want to be when you grow up?”
“I. Have. OPTIONS.”
Tears sprang to my eyes with the fierceness in her voice as she said those words. The world in front of me blurred as I struggled to find my voice again. I couldn’t see through my viewfinder, so I set the camera down on my lap.
“What options are your favorite ones to think about right now?”
“Umm….let’s see…”, she pondered, expressive eyes looking all around. “I have SO many options! I could be a mountain climber, or an artist, or a swimming instructor, or a veterinarian! I love to paint! And actually…..I am already a mountain climber. I’ve climbed up Papa Mitch lots of times!”
Her words, spoken with such conviction, such hope…. left me speechless, my heart squeezing tightly as I watched her flutter off in her princess gown, back to her twirling.
Her life hung in the balance for so very long.
And I’m not just talking about the chemo, radiation, surgery, and immunotherapy that required every ounce of her energy to fight for her life daily for a over a year.
I’m talking about relapse. At the time of her diagnosis, the statistics were beyond grim. If she survived the initial horror of neuroblastoma and treatment, the rate of relapse was high.
“Approximately 50-60% of high-risk neuroblastoma patients will have a relapse. There is no cure for relapsed neuroblastoma.” *Journal of Medicine, 2010.
Yes, her life hung in the balance for far longer than just the treatment. Hope for a future is a very precious thing. Every time she went in for scans her family held their breath, praying, begging, daring to hope as each scan came back clean. When she entered into remission this summer they could finally speak of her future in terms of years instead of months. Hope! Sweet, wonderful hope.
Take hold of those dreams, Alexis, and NEVER let go! Keep reaching for those stars and climbing those mountains. We can’t wait to see how far you’ll go!
“A dream is a wish your heart makes
When you’re fast asleep
In dreams you will lose your heartaches
Whatever you wish for, you keep
Have faith in your dreams and someday
Your rainbow will come smiling through
No matter how your heart is grieving
If you keep on believing
The dream that you wish will come true”
“Can I please please please take some pictures?! I just want to see it. Is this how you do it?” I. Could. Not. Say. NO. To. Her. Until she started twirling with the camera. 😉
I want to say a special thank you to Alexis’s mom, who shared these precious pictures of what life with pediatric cancer looked like. She opened up about the many struggles and fears of that time, and I still can’t read those words without choking up. What I’ve shared here was just the tip of the iceberg for her family, she could write a book about all that they’ve been through! Just take a moment, please, and say a prayer for those families caught up in the fight for life against pediatric cancers. Reach out to one of the many organizations that support these families and find out how you can support someone who needs your help.