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.

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.

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.

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.

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.

My niece is one of the strongest young women I know. Having lost her mom to cancer, she herself was diagnosed with Ewing’s Sarcoma eight months later. My sister was a single mom, raising her daughter by herself. Her biggest concern after her own diagnosis was who would take care of my niece? Would she still be able to go on to college? She didn’t have to worry though. God has taken care of my niece through the loving care of family and friends. Our journey continues.

Our mother’s journey started in 1993 when she was diagnosed with PNET Sarcoma. As teenagers, we were told that she had 6 months to live. Our mother chose nontraditional treatment, seeking alternative and holistic medicine. Her intuition and strength carried her through many years. She worked with many physicians, some who were willing to work with her, some who would tell her she had no options.

She became her own “physician” in the sense that she revamped her intake of food. She would eat organic foods, drink massive amounts of water, intake plenty of vitamins, sought support from cancer support groups and her Higher Power.

She also found comfort in helping others through cancer research as she became involved with OncoNewsDigest and the Cancer Community Center in South Portland, Maine. Her natural ease of nurturing others in their time of need came easily for our mother and we believe it was in her destiny. It was a perfect fit.

Her journey took a turn as she felt a change in September of 2007. Her cancer continued growing but at an alarming rate. She found a doctor at Rhode Island Hospital who would treat her 10cm size tumor with cryroablation. This was successful, at first. Three months later it returned with a vengeance, metastasizing to her spine and into both lungs.

She told us that she felt all three of us had been dropped into a warzone.

The next 7 months were difficult for our mother. This new journey found her on a path of learning to “Let Go and Let God,” as she would say.

Sadly, our mother passed recently with us holding her hands as she took her last breath of life. We now carry on her memory as we share her story with the world.

Our whole world was shattered when our son was diagnosed with Ewing’s Sarcoma in July 2008. As we now have almost completed the process of chemo and radiation, we have found that ES has opened our eyes to a whole new world that needs attention, awareness and funding so that we may help find a cure for childhood cancer! As difficult as this experience has been, we have learned and grown so much (individually and as a family) from it that we wouldn’t change a thing! We have been completely amazed at the kindness and generosity of family, friends, our community and complete strangers.

Our son is almost finished with his treatments and we look forward to our “new” normal as we continue to fight this ugly thing called cancer. With this experience, we have finally found our “purpose” in life. And that is to truly make a difference in the childhood cancer arena by raising awareness and funding to support this incredibly difficult world of childhood cancer…and we will be making a difference!!!

I have many “sarcoma moments”, but I think the one that stands out the most in my mind is after I had my tumor removed and went in for the results. My family was with me. We had been told to prepare for more chemotherapy and radiation. The doctor looked at me, and shook his head in total bewilderment and says “Your tumor was 100% dead.” He said no more after that. He just shook his head like he couldn’t process that information. After he finally composed himself, he said he didn’t know or understand how that happened because he’s not seen but maybe one other case like mine. I smiled at him, told him it wasn’t for his understanding, but God understood and eventually so would he. It was in that moment that I truly felt like I had learned my lesson on why I was chosen to go through Ewing’s sarcoma. My children understood at that moment and I think the rest of my family had realized it to. While we were going through this journey together, we had more fun, more laughter, and more love than I can remember from the rest of my life. It was definitely a moment that I realized our family needed togetherness and we achieved that togetherness. Even through something as life altering as cancer. God Bless everyone.

I learned about the existence the cancer called sarcoma when I was 17. My first symptoms appeared in October 1995 when, after falling from a bicycle. I experienced a right leg injury. Until the correct diagnosis, I was treated with different types of ointments.

During the night, I started to feel pain in the right leg around the knee. In the morning, I went to the doctor and then to get an X-ray. The next day, I got a referral to the Center of Oncology in Warsaw.

In February 1996, I heard the words that changed my whole life, “Ewing’s sarcoma of bone, right fibula. You will stay in the hospital, today you will have biopsy and tomorrow get chemotherapy”.

I had only one unknown – can I fight it?

Helplessness, and the fight against emotional collapse, ran approximately one and a half months. The whole time I knew that I had strong support from my family, my friends, colleagues and teachers from school. This knowledge really gave me strength to fight. Patients with whom I was treated became friends and we started a team. The attitude of the doctors and nurses made the atmosphere more family than hospital.

The combination of all the events, my behavior and relationships with people has enabled me to win. I experienced 18 courses of chemotherapy, 3 months of radiotherapy, and I managed to avoid surgery.

From the hospital, I took what is most precious to me, my wife Aneta, who is a nurse. We have two wonderful children, a son Macius and a daughter Klaudia.

For people touched by sarcoma, I recognize the diagnosis, state of collapse, and phase of the struggle for life. I know what they experience and I wish them much endurance, strength and optimism, which is very important in the fight against this serious disease.

Kamil’s Moment in Polish
O istnieniu nowotworu o nazwie Mięsak dowiedziałem się, gdy miałem 17 lat. Pierwsze objawy choroby pojawiły się w pażdzierniku 1995 roku, gdy po upadku z roweru doznałem urazu prawej nogi. Prawidłową diagnozę postawiono dopiero kilka miesięcy póżniej. Do czasu rozpoznania byłem leczony różnego rodzaju maściami. Pewnej nocy zaczęła boleć mnie prawa noga w okolicy kolana. Ból był tak silny, że nie pozwalał mi zasnąć. Rano udałem się do lekarza a potem na zdjęcie RTG. Następnego dnia dostałem skierowanie do Centrum Onkologii w Warszawie. Drugiego lutego 1996 roku zostałem przyjęty przez pana docenta Rukę i usłyszałem słowa, które zmieniły całe moje życie. “Mięsak Ewinga kości strzałkowej prawej, zostajesz dzisiaj na oddziale będziesz miał biopsję jutro dostaniesz chemię”. Wtedy wszystko do mnie dotarło, miałem tylko jedną niewiadomą CZY MI SIĘ UDA? Stan bezradności, załamania i walki z emocjami trwał około półtora miesiąca. Cały czas wiedziałem, że jest ze mną moja rodzina, moi przyjaciele, koledzy i nauczyciele ze szkoły, ta myśl naprawdę dawała mi siłę do walki. Pacjenci, z którymi leżałem stali się przyjaciółmi i stanowiliśmy jeden TEAM. Lekarze i pielęgniarki swoją postawa wprowadzali atmosferę bardziej rodzinną niż szpitalną. Splot wszystkich wydarzeń, zachowań i relacji z ludźmi pozwolił mi wygrać. Przetrwałem 18 kursów chemioterapii, 3 miesiące radioterapii i udało mi się do dzisiaj uniknąć zabiegu chirurgicznego. Ze szpitala zabrałem coś, co jest dla mnie najcenniejsze, żonę Anetę, która jest pielęgniarką. Mamy dwójkę wspaniałych dzieci – synka Maciusia i córeczkę Klaudię. Większość chorych, którzy się ze mną kontakują jest w podobnej sytuacji jak ja 12 lat temu. Rozpoznany nowotwór, etap załamania i etap walki o życie. Wiem, co przeżywają i życzę im dużo wytrwałości, siły i optymizmu, który jest bardzo ważny w walce z tą ciężką chorobą.