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Sicily’s Story

Site created on August 24, 2008

Heaven is a happier  place!
^Angel^ Sicily Evelyn Zeka has arrived.
April 15, 2005 - March 21, 2010
www.youtube.com/watch?v=WWdHq5UDXbo&feature=related (http://www.youtube.com/watch?v=WWdHq5UDXbo&feature=related)



     Sicily Evelyn Zeka, our vibrant, precious  4-year-old daughter was diagnosed with bi-lateral Wilm's tumor, cancer of both kidneys, on Aug. 22, 2008, at the age of three.
     This all began when I took Sicily to a new pediatrician for a preschool physical in July 2008, after just moving to Broken Arrow, OK from Wellington, KS. The doctor found a mass on Sicily's right side as she performed a routine abdominal exam. It concerned her enough to send us for an x-ray and blood work, both of which were inconclusive. It was decided to treat Sicily for just being full of "poop." We went back again in two weeks but the doctor thought the mass was shrinking or moving and still assumed it to be a bowel situation. She decided to schedule Sicily for an appointment with a GI doctor, but wanted to do a barium enema first. I asked for an ultrasound, but was told the enema was the next step (the ultrasound would have helped to diagnose the actual situation). The tech who performed the enema flat out said this was nothing to do with Sicily's bowels. After six weeks of our doctor not being very pro-active, we were finally scheduled a CT scan...which delivered the worst and most unbearable news I thought my ears could ever hear. Our daughter has cancer of the kidneys. Not just one kidney, but both. Bi-lateral Wilm's tumor. We decided to seek treatment in Oklahoma City with a doctor who spent fourteen years at St. Jude's in solid tumors. Sicily is also being cared for by a wonderful team of doctors here in the Tulsa area so we can stay close to home whenever possible. *Update March 2009 - Found a new pediatrician.
     Sicily underwent ten weeks of pre-operative chemo to try and shrink the tumors before surgery. She had surgery on November 19, 2008 to remove both tumors.  The surgeons removed 1/2 of the right kidney and 1/3 of the left kidney. Tests performed on the tumors showed her right kidney contained diffuse anaplasia (unfavorable histology) which indicated it should be removed as soon as possible. On November 30th, they removed her entire remaining right kidney as well as removed part of her small bowel due to an interseseption and some of her peritoneum that had covered the pylorus valve in her stomach, which were complications her little body did to itself trying to recover from the first surgery. She spent a total of twenty-two consecutive days in the hospital on the surgery recovery floor and the PICU. The doctors are fairly confident she can function near normal with 2/3 of the left kidney; at least until her teenage years, when her body begins to possibly grow rapidly. Because of the diffuse anaplasia, Sicily underwent 11 radiation treatments and will be on a 6-months protocol of chemotherapy. Every third week of chemo will require a 3-to-5 day hospital stay to receive treatment. She has done remarkably well with her chemo and we hope this will continue!
    Sicily has completed her chemo treatment on Regimen i on June 6th.  First OT (off treatment) scans scheduled for Tuesday, July 7th.  Pray for NED (No Evidence of Disease)! 
First OT scans in July produced a NED!!!
Next scans - Friday, October 9, 2009
Recurrance to right kidney bed on 10/12/09.
     On October 28, 2009, Sicily had her fourth surgery and the new tumor growth was removed.  She is not cancer free as a small amount was left on the vena cava as it was not possible to surgically remove it.  Pathology came back anaplastic Wilm's, again.  We will soon be making plans for her treatment and continue to ask for prayers for her and her family!
     Feb. 25, 2010 Sicily's cancer has metastisized to liver, lungs and intestines.
     March 21, 2010 Sicily passed away in her mommy's arms.

Please help us support pediatric cancer research by making a donation to the Pablove Foundation www.pablove.org (http://www.pablove.org)  Under special notes write, "In Honor of Sicily Zeka."  Thank you!

Newest Update

Journal entry by Kerry Zeka

As this September comes to an end I find myself watching, lamenting and finally sobbing over all those St. Jude’s commercials that inundate my telly during this period (Childhood Cancer Awareness Month) and I’m taking a moment to do a speckle of reflection. Who am I kidding…I’m always in the midst of pondering some aspect of what was and what could have been when it correlates to Sicily. Time does not seem to cease this unintentional and semi-conscious mental drill. I tried to halt it years ago to no avail, concerned it may be affecting my mental and emotional wellbeing. But alas, I just accept it as part of my life and it’s become the norm.  No worries…it’s not like an obsessive activity that takes away from the day to day aspects of living my life to the fullest and the acceptance of my reality, but there will always be a nagging “wondering” that will hover over me, especially during the milestones of life that Sicily is absent from experiencing. For instance, high school graduation. I silently celebrated all my friends who had a high schooler graduating this past spring. Surprisingly, there were many from my own graduating class. I’m curious how we managed to overlook that boom (Alison, Shelly, Scott, Julia, Shelle, Dustin…). What was going on back in 2004-2005? Must’ve been something in the water.  

One of the more challenging thoughts that has haunted my mind and has been difficult to overcome as the years have passed is the concept of what Sicily would look like as an eighteen-year-old young lady! My heart needed the vision. My mind craved the image. My soul petitioned for that apparition. 
One day back in May, Patrick approached me holding out his phone with the screen facing my direction. He was quiet so I made the assumption I was to look at whatever it was he had displayed. I saw a black and white photo of a young lady…a beautiful young lady that I felt in my heart I should know, but for some reason could not for the life of me think of who she was and how I might know her. She was so familiar to me yet a stranger at the same juncture. Such a weird and confusing sensation.  I don’t recall ever seeing her face before even though those twinkling eyes and that infectious smile told me otherwise. Then I gasped and the breath was literally sucked out of my lungs for a second.  My hand instinctively flew up over my mouth in shock. I looked up to Patrick’s face for confirmation and he smiled as he verified my own facial expressions. When I finally found my voice that was temporarily frozen in the astonishment, I whispered, “It’s Sicily!” It wasn’t a question, it was a statement. I couldn’t believe it. There she was, smiling at me as if someone had just snapped a picture of her that very day. I can’t even find the words to illustrate the profoundness of that unexpected moment. Unbeknownst to me, Patrick had asked his incredibly talented artist nephew to attempt an age progression of Sicily to see what she might look like now. He used pictures of her siblings during their high school years as influence to gracefully age her four-year-old face into one of a blossoming young woman. It was her! It was Sicily. This was what I had been dreaming about for years. He nailed it! Having this picture to gaze upon means everything. I gawked at it teary eyed for days back in May. Now I look at it with such a warmth in my heart and a gratification that fulfills all those needs, cravings and petitions. 
I’ve hoarded this photo since May, only sharing it with some family and friends… not sure if or when to put it out there into the world. There is no rhyme or reason for my spontaneous actions. I finally felt the urge strike me so I  hopped on my phone and started pecking away at the tiny keyboard trying my best to explain something so surreal it’s hard to recount into written word. I’m calling this photo “Sicily’s senior picture!” Thank you Samson Ledesma, we will be forever grateful.  I wonder no more for now I know…and so do the rest of you that loved Sicily Evelyn Zeka!

 

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