Los Angeles, California
Kathy Eldrid, RN, was my online friend. We first met online on a sarcoma list in 1999, and we first met in person in 2001 when she came to California to visit her children for her 50th birthday, and Kathy participated with our LA area sarcoma support group. Kathy was originally diagnosed with PNET (Primitive Neuroectodermal Tumor) in 1993 after several months of misdiagnoses, and survived for 16 years after diagnosis. Kathy adamantly researched for ‘innovative’ treatment options for herself. She once participated in an experimental immunotherapy trial (cancer vaccine) run by Dr. James McCoy (and responded), but Dr. McCoy died suddenly in 2000 and the trial was abandoned. Kathy felt this trial gave her additional years of survival.
As to a ‘Sarcoma Moment’, I don’t know, there are so many. Kathy and I regularly corresponded with each other after we connected. Once someone sent out a link to a cancer vaccine site in Argentina, and Kathy mentioned that even though she spent the summer of 1969 at the University of Salamanca in Spain, her Spanish was rusty. I also spent the summer of 1969 at the Univ of Salamanca in Spain and wrote her about this. We found that we were each at the University of Salamanca. We weren’t able to get together (in person) to talk about this until April 2008 when I visited with her in Maine and brought my pictures from 1969. And we reminisced…
I mention this because sometimes ‘diversions’ from sarcoma treatment are also helpful. Kathy was a very ’special’ individual and a very motivated person, and I’m sure she was also special to others. I will certainly miss her.
Phoenix, Arizona
My most wonderful daughter Annie was in college. She was 21. She felt some back pain while lifting boxes. We thought she had pulled a muscle. She finished school and drove home with a friend. She prepared to drive to North Carolina. Annie complained that her back nagged at her, and we thought we should have an MRI before she left to rule out a disc problem. She had her MRI, then off she went. We were called and told to get her back as cancer was suspected. She needed a biopsy, and we were praying for one kind of cancer over another. It turned out to be the worst kind, Ewing’s Sarcoma. When my husband, a doctor, saw the scans, he literally fainted, exclaiming, “Our lives will never be the same”.
The oncologist told us that our daughter was going to die. We had never before met him. We were also told that she would have 6 months and that the treatment was so rough she could choose no treatment. Annie had to be told. As her mother, I didn’t want this, but as an adult, I had to tell her. She looked the doctor right in the eye, and she said, “I’ll probably outlast you. Your negativity is going to get you. You should really work on that!” Annie did her research and decided on a plan of action. She fought like hell and wasn’t scared to die if something good could come out of this horrific experience.
Now, many more people know about sarcoma as we continue to fight her battle, raising awareness and money and supporting other families. We always called Annie “The Force”. She will continue to guide us until we find a cure.
Tigard, Oregon
Is it worth it?
As my five year old son, Joshua, lay in his hospital bed hooked up to various machines in the Pediatric Intensive Care Unit (PICU), my husband and I huddled around him, thrilled as he attempted to smile. We had just finished a grueling year of intense treatments of chemotherapy and radiation in order to kill the invading monster, Ewing’s Sarcoma, which had been discovered in his neck vertebra. End-of-treatment should have been a time of celebration, but we had now found serious damage.
Radiation had dangerously injured his airway, throat and thyroid. We were forced to give Joshua a tracheotomy (the making of an incision through the neck into the trachea to assist breathing when the upper airways are blocked). He had just had the surgery and now we were adjusting to this new medical intervention.
At that moment, our pediatric oncologist walked into our room and we watched her face closely. It registered the sadness of the situation and she began to apologize. “I am so sorry you have to go through this. In my job we have to use many harsh therapies in order to try to save the life of a child with cancer. Unfortunately, there are countless brutal side effects as a result.” She finished with, “Only you will be able to tell me, down the road, if it was all worth it.” And she quietly exited the room.
I’ve pondered her words many times over the last three and one half years.
Joshua still lives with a tracheotomy and has endured numerous other procedures besides. But as I watch him, with his bright smile, run across the field during school recess, I know the answer.
Yes, it was all worth it. But we need to find a better way.
Santa Monica, California
My girlfriend, Suzie, asked me to pray for a little boy who was fighting a really tough cancer. I followed the boy and his family for almost a year when I got a call from my brother, Kevin. Kevin had a small bulge on his shoulder that they couldn’t explain. He just found out what it was, Ewing’s Sarcoma. We were devastated.
I called my girlfriend, Suzie, to tell her the news. Suzie stopped me and said, “Kelly that is what Carter has.” Carter was the little boy that I had been following for almost a year. Even following him, I hadn’t paid too much attention to what he was fighting. I didn’t have to. I was only praying for him and I wasn’t familiar with the type of cancer he had. Now, my world was spinning! Kevin, my thirty-two year old brother was fighting the same cancer as Carter, age 7.
It dawned on me that day, that sarcoma has no predestined boundaries. It can affect so many people of so many ages. It dawned on me that this cancer is something we all need to fight.
Trenton, Georgia
My “one moment” was my son’s first meeting with his doctor at the National Cancer Institute (NCI) after he was diagnosed with Ewing’s sarcoma. The doctor offered him the option of a Phase III Clinical Trial and explained this particular protocol included the best known standard treatment available, but in addition he could receive an unproven, experimental drug that might, or might not, improve his outcome. She explained that even though he personally might not benefit, in the future others could benefit from what the researchers would learn.
Our son didn’t hesitate. “If I have to do this anyway, I want them to figure this cancer out and find a cure so nobody else has to go through this.” He told us he felt cheated but wanted his “life to count for something.” We assured him it already had in more ways he would ever know.
In the end the outcome was not successful, but we (his family and friends) intend to carry on his fight against sarcoma by participating in “The Team Sarcoma Initiative” July 18-26, 2009.
