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"Mom, I think there's something wrong."
I'd just been nagging my son. "Pick up your room, do your homework, turn off the TV." Was it the expression on his face or the tone of his voice? I knew instantly that something was, indeed, wrong. He then made a request that changed our world: would I take a look at his testicle? Michael is 16 years old.
The next two weeks were surreal. Tests, surgery, sperm banking, and a diagnosis of testicular cancer that would require a rigorous cycle of chemotherapy. Michael was matter-of-fact about it all. He and my husband, Tim, searched the Web and listened intently to the doctors. Our daughter, Hayley, was quiet. I felt unglued.
Our first full day at Dana-Farber was busy. When we walked into the lobby it seemed very different from Boston Children's Hospital, where our first visit had taken place. No fish tank, no bustle. I'm certain I didn't draw a full breath during the whole ride up to the 11th floor, where he would meet with his doctor. We knew where to go and what to do, but it wasn't until a volunteer came over to tell us we were not alone that I felt comfortable. I remember being touched that someone sought us out so quickly.
Our oncologists spent considerable time with us, answering every question, repeating anything we needed to hear. I didn't know then how much we'd grow to like them as people.
On the 10th floor, where Michael would begin his chemotherapy, I expected a quiet, dark place where staff spoke in whispers and patients were visibly ill. But after his vital signs were taken, I was surprised to see a smiling volunteer pushing a cart loaded with snacks. Patients were reaching for sandwiches and drinks - with IVs in their arms! I allowed myself to relax a little. How bad could things be if people were eating?
Our primary nurse kindly explained chemotherapy to us in such detail that we had no questions. She treated our son like the young adult he is, and kept the focus on him, where it belonged. The nurses understood how important it was to allow him to be his own person and speak for himself.
Many people made our journey less painful. We were always greeted with a smile when we checked in. My request to schedule every single appointment for the upcoming nine weeks was granted by the incredibly patient staff on both the 10th and 11th floors. Administrators, social workers, volunteers, other patients, and families sought us out to offer support. At home, two volunteers from Dana-Farber who happened to be from our town personally delivered special "goody bags" to our home.
Words cannot convey all that our family members and close friends did for us. At Michael's high school, his guidance counselor became a guardian angel, keeping his teachers, his sister's teachers, and the principal informed.
How did this experience affect us as a family? As you might expect, we each reacted differently. Michael viewed it all as something he could handle - and he did. He shared his story with friends, gave a presentation to his science class, and was very open with a group of 7th graders who had written to him. He knew when to sleep and when to stay active, and kept up with schoolwork and other activities at a pace we all found amazing. Of course, chemotherapy took its toll: he experienced extreme fatigue, lost his hair and eyebrows, and felt unsettled.
Hayley was determined to keep things as normal as possible. Before Michael lost his hair, she told her cousin that it was hard to think of her brother as having cancer. He looked the same, and was living his life. She hates hospitals and especially needles, so she was most comfortable dealing with things from the safety of home.
Tim was the researcher. He chased down information that helped demystify the disease. He's a quiet person, so I wasn't always certain that his optimistic exterior reflected how he truly felt. When I showed him the first draft of this article, he shared something with me that he hadn't mentioned before. Apparently, he'd been fairly convinced that our son's prognosis was good until we began coming regularly to Dana-Farber. Seeing all the cancer information made him realize the seriousness of our situation.
And, finally, the impact on me was devastating. The organizer in me scheduled each day, met each challenge, and kept in touch with family and friends. But I was crushed. I will never say "hair grows back" to a mother who has had to sweep her child's hair off the floor. Even as I write this, knowing our son has been given a clean bill of health, my heart is broken and I believe that my family has been forever altered by this experience. I find great comfort, however, in knowing that the four of us are surrounded by such love and support that no matter what life hand