Bath, England, UK
A Moment of Thanks
I’m surviving sarcoma first and foremost because of fellow sarcoma survivors. When diagnosed with rhabdomyosarcoma in the head and lungs at age 26, a dear friend mine, and survivor of osteosarcoma, guided me through the beginning steps of treatment. Suggesting what doctors to see and what measures to take, my friend gave me the initial tools to fight my battle, including a few tricks to enduring the hell of chemotherapy. Websites like the Sarcoma Initiative and list-serves like ACOR’s Rhabdo list gave me the medical resources and information to further educate myself on the best options available.
Sarcoma, because it is so rare, can be an extremely isolating disease, so finding others in similar battles was very important to me. Their courage added to mine. Their successes gave me hope. They wanted me to learn from their mistakes and their triumphs. I joined a virtual army with a very real enemy. We know we can’t win every battle, but we plan to eventually win the war.
Recently, I met a scared young man who had just been diagnosed with rhabdomyosarcoma. I took off my blue sarcoma bracelet, handed it to him, and was able to proudly say, “You are not alone.”
Detroit, Michigan
I remember the moment when I realized that we had entered the cancer realm, which no one enters voluntarily. The doctors had ruled out our initial suspicion that my son had an inflamed appendix. Instead they had confirmed that he had a stage 3 or 4 rhabdomyosarcoma. We were told that a course of radiation and chemotherapy would be prescribed, and that this treatment would in all likelihood have a negative impact on my son’s reproductive fertility. It was recommended that he “bank” a sperm specimen in the event that his treatment rendered him sterile. We were referred to a sperm bank near our house.
At the appointed time we pulled into the neighborhood where the facility was located, parked our car, and located the office on the upper floor of a two story building. While my son was filling out forms I walked to the window overlooking the street below. Across the street was a luxury hotel. A professional basketball team from the NBA was staying at the hotel and a line of about a dozen boys, close to my son’s age, had formed on the sidewalk outside the hotel’s entrance. These boys were waiting to intercept some of the players and plead for them to autograph their basketballs.
I suddenly had the feeling that I was looking at a world that we previously inhabited, but no longer do inhabit. I was looking at that world from a new one that we had suddenly and reluctantly been inducted into. The window separated these very different worlds, and we would probably never again be part of that other world.
Kernersville, North Carolina
A woman was sitting in the surgical waiting room while my son was having an MRI. We thought the Plastic Surgeon had made a mistake and nicked an artery in the last cleft surgery. I cried and this woman reached out and said, “My daughter is here having back surgery. She has cancer.” “Poor woman,” I thought, “at least my son is not that bad.”
Ten minutes later, we were exchanging numbers, bonding. My son was that bad. Rhabdomyosarcoma — a word we could not pronounce. One we had never heard before. A word for a 7 cm tumor that could kill my son. This woman became my rock, my best friend, my world on my ward.
I could tell you about the 11 month rollercoaster journey through chemo and radiation. I could tell you about the children throwing up, screaming, and begging the pokes to stop. It all has been said before. That crushing feeling when your world is stopped completely. A life that was secure suddenly seems hopeless. The feeling of not knowing if your baby will live or die. This woman’s daughter did pass away, and my son was saved, now cancer free.
Instead, I will tell you about the moment you realize that you have become part of a world you can never fully leave, where you bond with parents on the ward despite race or status. You fall in love with strangers; you share great scans, devastation, elation and death. A friend dies and your son lives and even though both are extremes at opposite ends of the spectrum, neither parent will ever leave the cancer world nor return to normal. You end up fighting until all the little faces become recognized, until there is hope and through hope, you save the fate of one more child.
Milwaukee, Wisconsin
My daughter was diagnosed with Embroyal/Boytriod Rhabdomyosarcoma in the vagina at the age of 9 months. When she was first diagnosed we learned the rhabdo cells had traveled to her bone marrow and she progressed from stage 1 to stage 4 in a matter of days. We chose a 54-week chemo treatment that included 5-6 different chemo agents. She also underwent 6 surgeries and 20 radiation treatments. She completed her treatments Thanksgiving week 2008 and is currently NED (no evidence of disease). We are optimistic and hope this beast never returns to her life and ours. She is our daughter, grand-daughter, niece, godchild, cousin, and friend and, to many, stranger. But Madison has touched the lives of thousands. She has reached so many people’s hearts and I am so proud of her. Sarcoma will always be a part of us but it no longer controls us. We command our own future!
Madrid, Spain
When I look at my son Daniel (now 6), I constantly remember some of the feelings I went through during his treatment. A mature and warm nurse told me the first day in hospital that Daniel (then two) would live his illness just the way he would feel we were living it, and that it was crucial that we were happy and relaxed in front of him. That was good and a timely advice!
During those first weeks, when we were hardly given any hope, we learned to keep the fear, the pain, the tears and the desperation in the shower or in bed, but when facing sweet Daniel, we devoted the best of ourselves to him. It was heartbreaking to see him, and yet we were happy and extra-loving. All these mixed feelings often come to my mind. I must say that Daniel was a wonderful patient. He was always in good mood, relaxed and would not even cry with injections. Some nurses said they had never seen anything like that. A line his father used to repeat back then was “I wish he weren’t so wonderful, it would make things easier.”
Special moments in all this process were the first time we were given real hope (when he undertook surgery after three months of chemo) and all the tests that have followed the end of the treatment. It is funny that, despite all the suffering, we have also lived our moments of biggest euphoria and happiness when hearing the magic words “clear scans” or “now, we do think he has a good chance.” Daniel has been lucky, he is completely happy, and we hope he will stay that way. I just can’t imagine what other less lucky families have gone through.
Elena’s moment in Spanish
Cuando observo a mi hijo Daniel (que ahora tiene 6 años), con frecuencia recuerdo sentimientos vividos durante su tratamiento. Una enfermera madura y cálida nos dijo el primer día que pasamos en el hospital que Daniel (que entonces tenía dos años) viviría su enfermedad tal y como percibiera que la vivíamos nosotros y que, por lo tanto, era fundamental que nos mostráramos alegres y relajados delante de él. Un consejo que resultó verdaderamente bueno y oportuno.
Durante esas primeras semanas, cuando apenas nos daban ninguna esperanza, aprendimos a esconder el miedo, el dolor, las lágrimas y la desesperación en la ducha o en la cama pero, a nuestro dulce Daniel, supimos darle lo mejor de nosotros. Era desgarrador verle pero nos mostramos más alegres y cariñosos que nunca. La mezcla de sentimientos vividos entonces viene a mí recurrentemente. Debo decir que Daniel fue un paciente maravilloso, siempre de buen humor y relajado. Ni siquiera lloraba con las inyecciones. El personal de enfermería decía que nunca había visto nada igual. Una frase que su padre repetía mucho por entonces era “ojala Daniel no fuera tan maravilloso, esto no sería tan doloroso”.
Algunos momentos especiales a lo largo de este proceso fueron la primera vez que nos dieron esperanzas fundadas (tras la operación a la que le sometieron después de tres meses de quimioterapia) y todas las pruebas posteriores al tratamiento. Es curioso que, a pesar del sufrimiento, también hayamos vivido en este camino los momentos de mayor euforia y felicidad al escuchar las palabras mágicas “no se ve nada en las placas” o “ahora sí creemos que tiene muchas posibilidades de salir adelante”. Daniel ha sido afortunado, es un niño absolutamente feliz y esperamos que siga así. No puedo ni imaginar lo que deben pasar otras familias menos afortunadas. Nuestro apoyo para ellas.
