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Patient Stories

- Carlos's Story -

Carlos had been sick off and on all fall. He would get these low grade “phantom” fevers — they would come out of nowhere and then just disappear. Then one day he had a temperature of 102. We took him to the doctor and they said to just keep an eye on him — it seemed like a virus. Two days later his temperature was 105 and wouldn’t stay down even with Advil for more than two hours. I got very nervous, called our doctor at home, and she said to bring him in the next day. They did a quick blood test and called us at home that afternoon. The doctor said his counts were all very low and he needed to see a specialist first thing Monday morning. We didn’t need an appointment — just to go as soon as we got our other children on the bus to school. They’d be expecting us. The next morning, we drove almost an hour to the doctor’s office. We had been told he was a specialist in blood disorders but we didn’t know he was also an oncologist until we were sitting in the waiting room. All around the room were letters from grateful parents and messages of hope. I kept thinking, "This isn’t happening to us...he doesn’t have cancer. He’s such a baby. Just two years old and still in diapers. Cancer is something that happens to grown ups."

Everyone in the office was very gentle with us and explained everything very slowly and carefully. First, they did a blood test. Then, they did a bone marrow aspiration and spinal tap. Then, after what felt like hours, the doctor came back into the room and said, “I’m sorry. It is leukemia.” Our whole world came crashing down around us. By now it was two o'clock in the afternoon and we were an hour from home. Our girls, ages seven and eight at the time, would be getting home from school soon. Someone needed to meet the school bus. How would we explain this to them? We needed to go home and see the girls, pack some things for the hospital and call friends and family. After the longest day of our lives, everything was happening too fast.

Worst of all, during the difficult procedures Carlos had endured that day, we had promised him a ride in Daddy’s jeep for being such a good boy. We desperately wanted to keep that promise. But Dr. Joe told us we couldn’t go home. We couldn’t go pick up the girls and explain things to them. Carlos’s ride in the jeep would have to wait. We needed to go immediately to Yale New Haven Children’s hospital where he would be admitted. He needed blood transfusions and other medications to stabilize him immediately. He had to be prepped for surgery the next day. Then the doctor said we would probably be there for a week to 10 days. We were stunned.

And yet, after 132 weeks of chemotherapy, our son went from that hospital bed to becoming a thriving kindergartner. This January will mark his 14th year in remission. In some ways we are grateful for the experience — it made our family stronger.  It truly shaped and defined our lives. Everything comes instantly into focus — you learn quickly who are your true friends and unfortunately who are not. It was a long hard journey but Carlos was always so positive and smiling. We used to say we were going to put a sandwich board on him that said, “I’m a Chemotherapy Patient” and take him through the adult unit at the hospital. Carlos never waited to “feel great” to play...he just was happy with not feeling really lousy. He went to school when he could. Friends came to visit when he couldn’t go outside. He watched endless movies and learned to play video games. He ate ice cream for breakfast and waffles for dinner. He would tell us he feels lucky. Because he had cancer but he didn’t die. We felt lucky too, and still do.

Today Carlos is 21 and is in college. He is studying music and business, plays piano and enjoys life as a typical college student.  #grateful...

— Liz Salguero

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