Kristy-Ann was diagnosed with Ewing sarcoma in November of 2011. But her story begins much earlier than that. As we've read so many times with Ewing sarcoma, it started with soreness in her leg which we concluded was just muscle pain. But although it went away for a while, it reoccurred again but the pain was increasing and would last longer. This went on for 6 months. Doctors visits didn't help - they couldn't find the reason for all the pain. We pursued physiotherapy, and chiropractors who were convinced it was sciatica. After months of alternate therapy, and trips to emergency, they could not determine what was going on.
We desperately kept going back to our family doctor who was going to make some appointments with a neurologist and an arthritis specialist because her doctor couldn't figure it out. By now Kristy-Ann was only able to work half days because the pain was so bad and only a few days a week. She was a very talented hairstylist who had just gotten a job with a high end salon and was trying so hard to work and prove herself, but the pains were too great.
On November of 2011, almost 7 months after her pains began, we saw a rheumatologist. It was his suspicions that lead to more test, x-rays, a bone scan, and an MRI. We got the call the very next day to go to Mt. Sinai. We had an appointment with Dr. Ferguson but we were never really told what their suspicions were.
So there we were in Dr. Fergusons office and he asked us if we knew why we were there? So when he told us that he suspected it was a malignant tumor and it was Ewing sarcoma, we all collapsed, I felt sick to my stomach, and we all cried. This was our child. This was our baby, this is not possible, they must be wrong... They weren't.
Kristy-Ann went for her biopsy, and it was confirmed. The next meeting was to let us know the course of action. There would be 10 chemotherapy sessions, and around # 5 they would do surgery to remove her thigh bone from her hip socket to just above the knee and replace it with prosthetic bone. Pow, another kick to the stomach! Our world was turned upside down. Our "normal life "would never be "normal" again. So we picked ourselves up and prepared for the fight of our lives. Over the next few weeks she had test after test and the doctors had great news. There were no signs of cancer in her lungs or her bone marrow. The doctors told us her chances were great because the cancer was contained.
We took that good news and hung on to it for dear life in spite of the journey ahead. Over the next few months during her chemo rounds we really learned how much of a fighter our daughter was. She took this horrible situation and refused to bow down to it. She always said "I have cancer but it doesn't have me." We met a wonderful "fellow" surgeon who was here from the U.S to work under Dr. Ferguson. He was such a positive happy doctor. Kristy-Ann loved seeing him and he always made her feel so comfortable; he made a big difference in her life. And over the next few months she went through her battles with a quiet graceful courage that inspired all her friends, family, doctors and nurses. So after round 4, Kristy-Ann went for surgery and all went well. Old bone out, new bone in. She was our bionic woman, but she was safe. So chemo resumed but problems soon set in. The treatments were beating her down and soon we were back in Mt. Sinai for dehydration because her chemo made her so sick. Shortly after she contracted C difficile from all the antibiotics she was on. Through all this she had to do physiotherapy for her leg. But her determination never wavered. The only thing that mattered to this beautiful young woman was "will I have a limp". She accepted the whole ordeal, but she was only concerned about a limp. I swear she made us laugh.
Once again, after a short time we were back at Mt. Sinai. Her leg became infected at the site. This was a huge problem because if the infection reached the prosthetic nothing could be done to clear the infection and it would have to be removed - and that would be a major setback. Luckily it hadn't reached that far but a large amount of muscle mass had to be removed in order to clean the infection. Pow, another punch in the stomach. By now anyone who has gone through a cancer battle can also relate to the expenses involved between travel, gas, prescriptions, parking and food. We were at the hospital on average 15 days out of every month, and although money isn't a consideration when it's your child, some creative accounting needed to be done.
Around chemo # 8, Kristy-Ann started complaining of soreness around her hip. We quickly dismissed this as physio pains or even a groin pull, so we slowed it down a bit. We went to see Dr. Ferguson and explained her pains. But we told him the pains subside after chemo. Well he was suspicious and said that it might be Ewing sarcoma again. Well no way. We were not going to believe that, not after everything we went through and not after all the positive news we heard and especially not since we were still going through chemo... NOT POSSIBLE. How could it jump from her thigh to her hip? Nope. We refused to think that the possibility of the cancer returning. Even Dr. Blackstein thought it was not Ewing sarcoma. Another biopsy was done - so we waited. On her 10th and final chemo, her best friend was there with balloons to celebrate her "release" from her battle. We had to see Dr. Blackstein.
I can remember that day and that meeting with Dr. Blackstein so clearly. It was the meeting that forever changed our lives. It was the day that ended our "family". The cancer was back, and it was Ewing sarcoma and it was metastatic and it was in her pelvis and it was inoperable. Unless you've heard those words, you cannot imagine the deep dark empty pit that you fall into. He told us that they could change the chemo to try to manage it, but it was only for management. I asked him, "How long do we have? One year, two years?" He told us "That would be optimistic". Pow, pow, pow- God, how could you let this happen? Didn't I pray enough? Weren't we good enough? Hadn't we been through enough? But no answers came!
Kristy-Ann did a few rounds of the new chemo but it was stopped because more Ewing sarcoma was found in her good leg and in her spine. It was deemed ineffective. After that we felt we were being avoided and when we went in for appointments, it was taking longer and longer to see us. We knew we were not getting the same attention as before with some trips waiting 4 hours to see our oncologist. He told us about radiation which seemed to work well with this particular cancer, so we did it because at this point, whatever kept our baby with us was all that mattered. To make a long story short, the radiation worked well for a while but the cancer was very aggressive and the radiation was becoming ineffective as well. She was in more and more pain as the weeks went on. We met a wonderful palliative doctor who really tried to help with all kinds of pain management but told us, "With bone cancer it's such a deep pain that we really don't have pain relief adequate enough to reach it."
We watched as our daughter lost her ability to walk and needed to be carried wherever she needed to go. We stayed with her 24 hours a day in her room as she had become bedridden. We were 100% dedicated to her and along the way, although unintentional, neglected our other two children. They had to fend for themselves more and more and it was so hard with so much of our time spent with Kristy-Ann. The time came when her tank was empty and we could see she was slipping away. We were gathered around her bed and she told us that she was ready to go. She'd had enough and didn't want to do this anymore. She told us not to be sad; she just wanted to run through the flowers. To go to the beach and squish her toes in the sand and enjoy the sunshine. She told her brother and sister she would always keep an eye on them. We sang to her favorite song. On February 1, 2013, Kristy-Ann passed away in her room where she wanted to be, fifteen months after she was diagnosed. We were and still are at a complete loss.
She taught us about strength, courage, grace, love, gratitude, and humility. Never did we see any self-pity or complaining. She touched so many people. And if you were so fortunate to be her friend, you knew how genuine and beautiful she was. One of her friends wrote:
"The next time you think cancer has had enough of your money, and there's enough research, think again. Because I'm so tired and so angry at this world that keeps failing so many, and has failed two of my best friends. It will never be enough in my eyes-until I can save my friends and their babies it will never be enough."
I will never understand why the toughest, unfair battles are given to the most beautiful people. Kristy-Ann was never able to find that peace she so desperately sought. All she wanted was to get on with her life. But I tell you this, she taught us how to live and to cherish everything you have, and all who are important in your life TODAY. She taught us perspective above all. To see her deal with cancer and the battle she endured taught us what courage really was. And our everyday aches and pains which seem so monumental to us at the time are nothing compared to what she went through. I know this. If you feel regret, then fix it. If your priorities are messed up, then change them. If you think you are settling, then you probably are. If you continually hear "you only live once" then it's time to listen. This journey has tested everything we are and everything we believe in, our faith and what we stand for. The pain is unbearable and nobody should ever go through losing the most important part of your life. The only people who could possibly relate to this is another parent whose child has had cancer. We are so thankful for the strength and love of our other children but they are struggling too.
We realize we will never have that son-in-law we were looking forward to, nor the grandchildren we wanted dearly, nor all her life's struggles or achievements. Her brother and sister lost a best friend and a mentor. She won't be at her sisters' graduation, picking dresses nor doing her makeup. Her brother lost a big sister who was always looking after him in times of trouble, always putting them first above herself.
I am so grateful in finding The Ewings Cancer Foundation and especially Tina's guidance and understanding through the dark moments. This foundation is the most important charity we've chosen to stand behind. It is the only cancer that never makes the headlines, but in my opinion the most devastating to a family, and not as rare as they have us believe. Although the Canadian Cancer Society is very important in the work they do, this is my story, and the Ewings Cancer Foundation targets more specific cancers.
We need to find a cure. That continues to be our goal. This is a disease that completely destroys a family and their future happiness. We don't think time will heal this wound. We will learn to manage it, and put it to the side for a while. But we know it will always rear its ugly head and the tears will always be there.
"It ain't fair you died too young like a story that had just begun, then death tore the pages all away. God knows how I miss you, all the hell that I've been through. No one could take your place. Sometimes I wonder, who you'd be today". Kenny Chesney
-The Dini Family
Bill, Bonnie, Kristy-Ann, Kyle, Carissa