Since Atia’s cancer diagnosis in April 2009, life had been somewhat slow. Though we were always getting blindsided by one tricky side-effect or another, the truth is our entire lives were focused solely on her treatment, comfort and care. Most of the time, even Asher had to get in line behind her – I know that sounds absolutely horrible – don’t get me wrong, his needs were always met, but he was an infant and didn’t require as much pampering as Atia. We wish we could have showered him with as much attention as Atia had gotten at his age, but under the circumstances that was impossible.
It wasn’t until December 2010 that the pace really picked up in our lives...
That month my first published article, “Four Little Words – Your Child Has Cancer – and What Happens Next” appeared in Chicago Parent Magazine. I could hardly believe that I was a published author. Even after all my blogs, I still found it difficult to say I was a writer - not because I didn’t want to be, but because I remember being told by my English teacher in junior high school that my writing skills were subpar. It was then that I lost all my confidence in writing. To this day, her words still haunt me.
A week later, the Chicago Tribune voted Steve’s iPhone App, Wychlist, one of the best grocery shopping apps available. Being awarded that honor was bigger for us than simply being recognized as a great app. It was validation that Steve’s commitment and passion for developing software to help folks save money had been successful. He’d begun developing Wychlist prior to Atia’s cancer diagnosis, and wasn’t sure he’d ever be able to push it out to the public. It was his “never give up” attitude that had motivated him to get it done, and it was a gem!
On the 13th, at her monthly appointment, Atia received an extra dose of chemo. She was so brave – she had truly become accustomed to having her port accessed – and I was in awe. Even when undergoing my own cancer battle, I’d never been as brave as her. She certainly taught me a thing or two about gracefully accepting that which you cannot change.
As you’ve learned, Atia’s chemo pushes always left us wondering whether or not the days following would be gentle or grueling, tolerable or arduous. Those days tested our patience and often brought us to tears (all of us). That particular week, for the sake of her comfort and my schedule, I hoped that Atia’s side effects were minimal.
You see, three days after Atia’s treatment one of the most exciting things to come out of Atia’s diagnosis was about to happen – we were launching Atia’s Project Ladybug Fund, Chicago’s chapter of Project Ladybug, a nonprofit organization dedicated to easing the struggles of childhood cancer. Dina Manzo, the charity's founder, even flew in from New Jersey.
December 16th & 17th were a whirlwind, complete with a WGN-TV interview , a ceremony at The University of Chicago Comer Children’s Hospital, a celebratory dinner, and a public launch party at The Hyatt Regency downtown . It was such an experience – more than I could have ever hoped. Atia was with me almost every step of the way. She was smiling, laughing, playing and enjoying the attention.
Atia getting her lapel microphone
Charity Launch Ceremony at the Hospital
She loved every moment of it. I loved every moment of it. Steve loved every moment of it. If it wasn't for all the medication Atia had to take morning and night, we could have easily forgotten she was battling cancer. We got swept up in the glorious, unparalleled joy of it all until...
She got sick.
Nine days after her chemo push, six days after the charity's launch, two days after completing steroid treatment, Atia was back at the hospital with a temperature well over 100.5 (a number that required immediate medical attention) - it was December 22nd – three days before Christmas. We were supposed to drive down to Springfield, IL the next day. Our hopes of doing that were shattered as Atia sat in the hospital bed with flushed cheeks.
Atia Holding Her Blood Culture Sample
The extended exposure to strangers and loved ones had gotten the best of her, and her weak immune system couldn’t keep up. Atia had contracted a virus. She knew that Christmas was only days away and though she was so weak she could hardly sit up, she summoned enough energy to ask, “Will Santa know where I’m at if I stay in the hospital?”
Atia Afraid Santa Wouldn't Know Where She Was
That moment - that very moment - broke our hearts, and we became acutely aware that although this precious little girl could deal with the pain of getting her port accessed and receiving chemo, the hardship of falling ill just because she'd been in contact with strangers, and all the frightening things associated with the hospital, what she could not handle was the thought of Santa not knowing where she was. She was stripped of her brave facade, revealing a fragile little 3 year old girl desperate to know that Santa wouldn't forget her - that cancer wouldn't take from her the joy of receiving the presents of her heart's desire.
She was simply a toddler holding the Christmas Spirit close to her heart, clinging to the idea of Santa's magic. There were no chimney's in the hospital, no trees (that she could see). How could the tale play out without the basic artifacts necessary to create the story?
The truth is, we didn’t know if Santa would find her in the hospital. I mean, of course something would be done, but many of her presents had already been shipped to Springfield. And with her in the hospital, we would be unable to get all the Christmas trimmings ready on time.
We prayed with all our might that she’d be deemed well enough to be released. We held onto one another in hopes of summoning a miraculous recovery. The clock on the wall terrorized us with each passing second. Tick, tick, tick.
Finally, the blood test results were in. Atia definitely had a virus, but surprisingly her counts were above the neutrapenic threshold. She was released and we got to go home. Relief and joy - that’s what we felt that night.
The experience left a lasting imprint on our hearts. It was our first taste of what spending Christmas in the hospital would have been like. It eventually became the inspiration for the incredibly successful toy drive the following Christmas. We wanted to make sure that everyone had access to a variety of Christmas presents in the event their children were admitted long term or mere days and hours before Christmas. No child at Comer would be forgotten by Santa. We made sure of it!
December 2011 - Atia, 4 years old
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