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

*Also posted on Facebook

     So...where to even begin. This is the day. The day I have no need to circle on my March calendar or write a little reminder in the tiny white box with the number twenty-one stamped in the corner. That day. The day we lovingly like to refer to as Sicily’s Angelversary. But today seems so much different than the last decade of March 21st. Hard to believe ten years have passed. Harder to believe, for me, is where we are today. If you would’ve asked me ten years ago what I thought I might be doing on March 21, 2020, my response would’ve probably been something simple...reflecting on life and it’s many blessings and remembering the sweet little soul that we got to call our daughter for less than five short years. I’m still going to do that. Though so much is changing everyday in what is rapidly becoming our new normal, nothing nor nobody can take away from me the beauty of what this day means to me. Yes, it is a beautiful day. 
     I could write all day long about the incredible experiences we have had and the priceless memories that were made during Sicily’s cancer journey, and then after, but I want to focus more on the here and now. I practically do the former everyday anyway in my heart and in my head. I will admit that I am living with an anxious soul for what we all are dealing with. The fears of the unknown. The wanting to have answers and solutions and remedies to fix things but having to sit on my hands because those things take time. Reminiscent of what we were feeling back in August of 2008 when Sicily was diagnosed. What did those feelings teach me? To take a slow big deep breath and gradually exhale it. Repeat as needed. It’s going to be okay. Now I don’t say that lightly. The term “okay” does not mean that things are going to turn out as you want them. It means that you will get through whatever is put in your path. It means you possess a reservoir of internal strength that you most likely haven’t even tapped into yet. You have no idea how strong you are and how much you can persevere...until you are truly tested. 
     Ten years ago this afternoon, I knelt down on the floor by the living room couch were Sicily laid stretched out upon. She was groggy from morphine, but still amazingly coherent and present most of the time. I got in trouble with her for just sitting there and staring at her face, memorizing every tiny feature that was already embedded in my brain. She would open her eyes and catch my gaze and demand that I “stop starring at her!” I couldn’t help but smile as she closed her eyes again and probably knew full well that I would continue. I bowed my head and closed my eyes and prayed the deepest most profoundly heartfelt prayer I could muster from my soul and shamelessly begged God for a miracle. I petitioned and ardently pleaded God to heal Sicily and spare her from pain. I left it at that. I didn’t give Him instructions or directions on how I wanted it done. I just put it in His hands. I had blindly confessed months earlier while writing a CaringBridge post during one of Sicily’s impatient chemo stays that I would, and I quote, “accept God’s will, no matter what It is!” Now I was going to be put to the test and see if I could be true to my word. Later that evening, God performed His miracle, on His terms. Sicily was cured of cancer and was completely pain free. Just as I had solicited of Him. Again, as He deemed necessary. I firmly believe that to be a miracle. We had been told by Sicily’s hospice nurse just days prior that her vitals were all good and that children are just so strong that she may continue on for another week or so. But here she was, at 10:45 at night exhaling her last earthly breath. “Thy Will be done, on earth as it is in Heaven.” Miracles. They’re real!
     I have peace. I am full of peace when it comes to thinking about Sicily and her precious life and her untimely death. I still
miss her with every single breath I take! I am heavily tugging on my stockpile of peace right now to stay calm in today’s current events, but I am determined. We, as human beings, can do this. It’s going to be hard! Very VERY hard at times. But I pray that we all end up doing what we need to do.  Take care of one another. Pause for awhile and let the world reset itself. Believe in miracles. 
     Ten years ago this afternoon I was blessed to be introduced to Kari Jobe’s amazing voice. I played her CD, that had been given to us by a friend, throughout the day and into the evening. It became the theme music to Sicily’s blast off to heaven. Yesterday I heard for the first time one of Kari’s new songs, a duet with her husband. It’s called “The Blessing.” As of last night it was #1 on iTunes. Listen to it if you wish. Perfect for finding your peace in these uncertain times!
     Godspeed everyone. If you are reading this, you are loved by me...forever! 🥰 PS...Sicily, tell Jesus “Hi” for me!
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