As part of her treatment for Ewing’s Sarcoma of the brain, my then six-year-old daughter Delaney was required to undergo painful G-CSF (Neupogen) injections to help her battered immune system recover from the day after she finished chemotherapy until 0-14 days after treatment.
The first time I approached her with the intent of injecting her thigh with the medication, this tiny girl erupted in to a blaze on anger and betrayal, knocking the syringe out of my hand.
This is not fair!” she screamed. “I have cancer, Mom! I don’t like to eat anymore, I’m sick all the time, I am bald and I can’t go to school. And now you expect to give me these shots every night that hurt my legs and make me sore?!”
I turned and walked out of the room – defeated – knowing that I was going to have to push the issue and inflict pain on her to help her to recover – to live.
I refilled the syringe with the $200 injection and walked back to her room. When I entered, I saw a frail little girl with a look of complete serenity on her face. She wasn’t smiling, but she was intent.
“I’m sorry Mom,” she said. “I want to live, and I know you want me to live. I won’t fight this anymore – we’ll fight this cancer together.” She then extended her leg to take the injection.
In the 14 months that followed, I never again heard her complain about her medicine or her treatment. She made the decision to fight and to live that day – and by the grace of God she is still here with me today.
Please support International Sarcoma Awareness Week: July 18-26, 2009. Events have already been announced in Australia, Canada, Denmark, and Washington, DC, with more to come.
It was almost 3 years ago that my friend was diagnosed with Ewing’s Sarcoma. She was a fun-loving wife, mother, daughter and friend to many. We often talked about how she was fighting this hideous cancer and her next triumph. Then one day in a phone conversation she said to me, “Hey, don’t ever forget me.” I vowed, and will, never forget her.
I was deeply touched by Christie’s will to keep fighting and fighting every obstacle this disease put in front of her. She spent many hours writing letters to her children through scrapbooking; she was very proud of her daughter and son. They were very young at this time.
One of the last times I saw her was at an auction to benefit her daughter’s grade school. As treasurer she was there in her wig, smiling as if she hadn’t a care in the world, but anyone who knew her knew the pain she was suffering. As we were enjoying the festivities she kept bidding on a very festive winter basket filled with all kinds of goodies. I was surprised by her doing this because she and her mother had made this basket. When she won the bid she turned to me and said, “This is for you. I want to thank you for being my friend.”
I never wanted to believe that it could be the last time I saw her. Christie will be forever in my heart. We shared many wonderful moments as friends.
Please support International Sarcoma Awareness Week: July 18-26, 2009. A Team Sarcoma Event in New Jersey has just been announced.
My daughter was 5 months old when we found a lump on her neck. It was Ewing’s sarcoma, PNET. The pediatrician missed it 3 times. My daughter was pulling on her ear on that side for months! After almost a year on chemotherapy and a surgery, she is a healthy 17 month old. She is as tough as nails and is a complete warrior!! The whole year was a horrific experience for our family, including our 7 year old son, who learned how to flush his baby sister’s central line, watched a surgeon remove his sister’s central line, etc. He now says he is going to be a pediatric oncologist when he grows up! I am currently enrolled in pre-nursing courses part-time to be a pediatric oncology nurse. Sarcomas stink!!!!!!!!
Colorado Springs, Colorado
I am embarrassed to admit that I hadn’t thought about cancer all that much. I hated to even say the word. Maybe I thought that if I never said it, my life wouldn’t be touched by it, that it would just go away.
Last year my nephew was diagnosed with Ewing’s Sarcoma (PNET). I was completely devastated. I immediately got online to find out about this type of cancer. I never knew it existed and could hardly believe what I was reading and how it reminded me of the devil himself.
My nephew had surgery in February 2008 and went through the grueling chemo and then radiation until, to our elation, he was cancer free. Last October it returned – in his lungs – with a vengeance. He got into a clinical trial and had one chemo treatment, and seemed to be feeling better. Then he took a turn for the worse.
Last Thanksgiving was the last we spent with him as a family. He came to the table, ate dinner and played a game with us, but then had to go rest. I am the eternal optimist and just knew that he would be OK again; this ugly cancer would go away.
Then we got that dreaded call: he wasn’t expected to live through the night. We dressed and went to the hospital to whisper our love to him and to pray; he lived for another three days. When he passed away my heart was absolutely broken. I made a decision that I never wanted anyone else to have to go through what he did or what our family experienced. It feels like I have a big hole right in the middle of my body and my heart, still aching for my precious nephew. I hate this disease and will do everything in my power to help find a cure.
My sister, Pat, put up an amazing fight against Ewing Sarcoma. It started in 1975 and, sadly, ended January 7, 2009. She was a model of courage, compassion and strength. There was no single defining moment — there were myriad small moments of strength and joy and sorrow and despair. Her presence and spirit are sorely missed.
During a Rugby match in college I incurred a left knee injury that ultimately led to knee reconstruction surgery. Three months later I began to experience a new symptom down my right leg. An MRI yielded a diagnosis of Ewing’s Sarcoma in September 2005. A tumor the size of a grapefruit was located in my right illio-sacral joint.
The night I was admitted to Wesley Hospital I met two young girls who had also been diagnosed with sarcomas: synovial and Ewing’s. So much believing it to be rare. One of the girls, Hannah, later became my wife. My chemo- and radio-therapy treatments took nine months during which our relationship continued to grow. Hannah had relapsed with synovial sarcoma and had to undertake even stronger treatments.
In the following, mixed emotional two years I dare say we experienced more joy than most could possibly expect in a lifetime. After finishing my treatment, Hannah and I moved into a little cottage whilst she continued hers. We tried all different medical options, both natural and drug based. In only three months Hannah organized our wedding which was to take place October 14, 2007. It did not go to plan. Instead we married on October 1 2007 in Wesley Hospital. Hannah passed in the early morning hours of October 2, 2007.
I continue to be in remission whilst pursuing our passion, a foundation in memory of Hannah, Hannah’s Chance Foundation. Our dog’s name is Chance. My story has been an experience from both sides of the fence and I know I have grown into a better person because of it. Despite only being 21 years old, I feel 40 … no offence of course.