Yorba Linda, California
My daughter, Sammy was diagnosed with rhabdomyosarcoma Sept. 29th, 2006 (no one ever forgets the exact date, do they?) at just 8 years old. She has been off treatment and in remission since Aug. of 2007. Thank you, God!
I am sending you a wonderful moment that I experienced during the first 28-day hospital stay of Sammy’s diagnosis. It is something I will never forget from our difficult journey. It tells of the sensitivity of hospital staff who, day in and day out, see kids in pain or stress yet still treat every one of them as special. At least that was how I felt after this. Here is an excerpt from my diary:
“Last story to relate tonight…About a week ago after Sammy had been in the hospital about 3 days, Sammy had to go take yet another test. However, it was across the street, and rather than wheeling a gurney across a busy boulevard, they had her transferred via ambulance. It was a lot of “to do” for a short trip, but the ambulance drivers and technicians were so much fun, teasing her and her teasing back. What was so cool though…as they wheeled her outside to put her in the back of the ambulance, they noticed her wistful intake of fresh air as they emerged outside. She’d been cooped up in a hospital room for 3 days. They looked at each other and, rather than putting her directly in the back of the ambulance, pushed her away from it and out into the sunlight. She had the most beatific smile on her face, as she closed her eyes and just took in the warm rays of the sun and took a few deep breaths. The techs looked at me, and I was feeling a bit tearful but thanked them so much for that little gift to Sammy. From there on out, when they took her out of the ambulance and returned her to it, they paused for a bit to let her enjoy some much needed fresh air and sunshine.
These are the kind of people that we are blessed to be associated with here at CHOC and St. Joseph’s.”
Knoxville, Tennessee
On January 23, 2007, our 6 year-old-daughter Emily was diagnosed with a malignant tumor called rhabdomyosarcoma. It was in her left kidney and also involved her pancreas, diaphragm and spleen. The surgeons were able to remove all visible pieces, but during that procedure parts of the tumor ruptured and some malignant cells were released into her abdominal cavity. After recovering from the trauma of surgery, Emily began 42 weeks of chemo, during which she also received 4 weeks of radiation therapy.
We celebrated Emily’s last chemo treatment, we thought, on November 12, 2007.
Then, we rushed Emily back to the hospital with breathing problems on May 3, 2008. The tumor was back; it had collapsed her left lung. Despite several rounds of chemo and radiation therapy, the tumor continued to grow: our only option was surgery.
Tragically, the tumor was the size of a football, and the surgery was more than her little body could handle. Emily never woke up after surgery. She died just one week later on June 24, 2008. There are no words for the pain a parent feels after losing a child; there will always be emptiness in our lives. Emily’s brief life and death have inspired our family to make it our mission to work toward the day, hopefully in our lifetime, when there is a cure for the cancer that took our sweet little girl from us far too soon.
Layton, Utah
My 18 year-old son was diagnosed with stage 4 alveolar rhabdomyosarcoma. He has received many spiritual blessings ranging from actual laying of hands on his head by church leaders to a prayer circle of over 50 people dedicating an entire hour of prayerful visualization for his healing. Not only did our church dedicate an entire day of fasting for him, but hundreds of our youth carried the fast on through the evening. He received a prayer shawl and a prayer quilt. Several denominations have included him in their church prayers and prayer chains; a few people we know, thousands we don’t know.
But the strongest moment we experienced in the power of prayer came during one of his most difficult nights. He had severe sores in his mouth, throat and nose. Due to the mucositis, he couldn’t swallow or talk and was on a feeding tube. My 6′3″ son weighed only 125 lbs. He was home sleeping on the couch, too weak to go to his own bed. He slept with his prayer quilt and shawl wrapped around him. As I walked by, checking on him, he woke up and whispered, “Mom, would you pray with me?” For the first time in many years, he let me hold him in my arms as I softly prayed with the prayer quilt absorbing our tears. We were blessed with the amazing relationship between mother and son and the comfort that He is with us and everything is going to be ok.
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.
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!
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.
