“I thought I had had my share of ‘oh sh*t’ moments. You know, the one where it feels like your stomach is in your throat while possibly falling out of your bottom at the same time. But nothing would or ever will compare to September 13, 2014—the day I heard the words my 1-year-old baby, whose birthday we had just celebrated a couple of weeks earlier, has a spinal cord tumor.
Izzy’s our only child. We celebrated her first birthday with all the hopes and dreams of every parent: the walking, the talking, and just seeing her grow into toddlerhood. But instead, every one of those dreams was dashed and replaced with questioning whether she would see her second birthday. It didn’t make sense. I felt as though I was having an out-of-body experience for the next few days. From there, our little one was quickly admitted into the hospital where she would endure a 10-hour open biopsy on her tiny spinal cord—through her milky soft back, her still-soft tender muscles, through her vertebrae, and right into her fragile spinal cord.
After 10 hours, her neurosurgeon came to see us and let us know the surgery went well. He closed her up as soon as he lost all signal to the right side of her body, but he was able to resect enough of the tumor safely to obtain a pathology report and determine the next steps. As soon as we were allowed to see her in the PICU, we walked into a room of alarming bells and were immediately escorted out of the room as a team of nurses rushed in. Turns out, our 1-year-old decided after very serious surgery, she was well enough to not need intubation any longer. I overheard nurses saying she was definitely a fighter. I still had no idea how true this would be.
That night, once all had settled, we had the neurosurgeon’s team coming in every couple of hours to poke Izzy’s feet to see if they could get any type of reaction. When her right foot finally wiggled the next morning, both my husband and I could sense the heaviness lifting from the surgical team. From there, it seemed like everything moved quickly and slowly at the same time. Our typically developing baby, who wasn’t yet crawling but was doing this adorable butt scoot, was now basically a rag-doll who couldn’t even sit up on her own. She couldn’t even eat solid foods yet because she couldn’t sit up without pain, so I would still make her baby food.
Izzy began her chemo protocol on November 7, 2014—42 infusions that took place over the course of 14 months, and she began physical and occupational therapies as well. By the time she was well enough to sit up on her own, chemo had so ravaged her gastrointestinal tract she still needed to eat baby food because she wouldn’t eat on her own. My husband and I would literally have to dance and sing to distract her while the other put small spoonfuls in her mouth in hopes she wouldn’t throw up. She needed her nutrition, we needed her to grow and make it through the grueling 14 months as healthfully as possible.
We held on to so much hope, though we often felt alone. Izzy’s tumor and its location are one in 30 million, so there wasn’t really a chance for us to find someone who had been through what we were going through and see what the future might look like. I felt so lost in motherhood, but I Googled a lot to try to find somewhere to expand on the hope. Her prognosis was not bleak and perhaps there was some willful blindness to what life would look like for her, so we latched onto hope and I found strength in sharing and letting others know they’re not alone.
Maybe our journeys are not identical, but we know what it’s like to see our children endure the harshest of medical treatments. I’ve battled depression and anxiety for as long as I can remember now, so this feeling of loneliness is not new to me. I felt, and still do, if I could just help one person not feel so lost on a similar path as mine, I could turn tragedy into triumph. I also wanted Izzy to grow up seeing her parents act on inspiration and know her own story is not about sadness, but rather about a little girl who is determined to live life to the fullest and without limits.
That year, my husband and I picked up running to raise awareness for childhood cancer and funds for research. We ran our first 5k in November of 2015 for Alex’s Lemonade Stand Foundation and raised more than $12,000. We shared Izzy’s story on their heroes pages, and we shared how incongruous funding for childhood cancer is compared to most other cancers. We felt angry our daughter and so many other kiddos have to endure poisonous chemotherapy and/or radiation because there is no alternative; we felt angry these treatments leave more than 2/3 of childhood cancer survivors with lasting late effects. And so, we felt more than proud to raise awareness in honor of Izzy and so many children and friends we’ve made along the way.
On January 14, 2015, the day before her last of 42 infusions, Izzy took her first eighteen independent steps during a physical therapy session. She lives with the tumor in her spinal cord, but it has remained stable since January 15, 2015, meaning it hasn’t grown or changed since. She’s endured countless hours of therapies, MRIs, hospital visits, and interventions. She lives with constant pain, and most recently in June 2019, she was admitted into the hospital for a procedure called halo gravity traction therapy to help straighten her spine. After the hospital, she wore a cast, like the one you would wear when you break an arm, for almost 6 months.
Just when life was getting better and she had her cast removed, the world went into COVID turmoil and everything, including school, was shut down. And yet she always finds reason to smile, celebrate, and see the best in the world and those around her. Izzy lights me up every day, and honestly, I think she lights up anyone who knows her. Her beautiful energy fills any room she enters, and I’m not sure how she does it with all she continues to face. She has muscle weakness on the left side of her body and the surgery left her with spinal deformity. Just recently, she used the word ‘disability’ for the first time. We’ve really tiptoed around labels in hopes she would find her own way of expressing what she goes through.
I asked her how she feels about that word and if it’s the word she really wants to use, and at 7 years old and with much confidence, she said it doesn’t really make a difference in who she is; it’s just a word to describe something. She inspires me so much, I feel like I need to offer her something in return. I feel I have a torch to carry for her; to light a path toward demolishing obstacles, and so I’ve found ways to emulate this for her. We founded Izzy’s Infantry in her honor to raise funds for childhood cancer research and provide families with emotional support and financial support to obtain mobility devices, such as walkers and wheelchairs. Our fundraising efforts are on hiatus now through COVID, but we continue spreading awareness.
Additionally, somewhere along the line I discovered running as a way to meditate on all the happenings in our lives, to become better each day, and to raise awareness for these causes so close to us. We’ve run several 5Ks for childhood cancer research, and in 2019 we put together a team to run the New Jersey Half Marathon for Children’s Specialized Hospital to raise funds in order to help families obtain mobility devices. I think if I can push my self-imposed limits, then Izzy can see we all have the strength we didn’t even know we had, and so I show her through being consistent in running and training. I tell Izzy often our stories because she is the owner of her cancer story, are so intertwined.
I don’t know parenting a child without disabilities or medical complexities. I don’t know what it’s like to mom without also being a sort of physical and occupational therapist. But I also don’t know I would have found the confidence in myself if it weren’t for this journey. It’s not a confidence that makes me feel infallible, but rather one that allows me to embrace my flaws in hopes of growing and being better each day, and that often comes in the form of pushing through tough miles and most recently, training for my first marathon. I’ve been working on this marathon for a while now it’s been postponed due to COVID since April 2020, but whether in-person or virtually, I’m running the New Jersey Marathon on October 17th, 2021, and of course raising funds for childhood cancer research.
I think I’ve read somewhere that seeing a child battling cancer will change your life, and it’s absolutely true. I’ve watched Izzy at 16 months old vomit all over herself because she felt so terrible from chemo, and then go back to smiling and playing as soon as we cleaned her up. Maybe it’s some strange metaphor for how messy life is: clean it up and get back to what makes you happy. I carry all of this with me all day every day, but especially mile after mile while running. There’s this sort of sadness that never leaves me, it’s always deep in my belly. But what’s in my heart is gratitude, inspiration, strength, and an abundance of optimism I can get through anything. I hope Izzy will see this and realize she can always do the same, and when she feels she can’t, she has so much love and support around her to carry her when her burden is too heavy.
It’s almost 7 years later since that day in the hospital hearing those words, and as I’m writing this and reliving the moment, it still hurts as fresh as it ever did. I often try to imagine life without childhood cancer being a part of it, but I honestly can’t see it. I think that’s kind of the beauty of gratitude and optimism in the face of adversity. There’s no time to focus on what-ifs, because you risk missing out on celebrating all these beautiful big and small wins, not to mention all the wonderful people we’ve met along the way who wouldn’t be spun into the fabric of our story otherwise. So, with sadness in my belly and gratitude in my heart, I run on in hope of building awareness, sparking change, and inspiring anyone who questions whether they can defy self-imposed limitations.”
This story was submitted to Love What Matters by Sonia Rita of New Jersey. You can follow their journey on Instagram, here and here, Facebook, and their podcast, “Running on Optimism,” available on all podcast streaming apps. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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