On New Year’s Eve 2014, we were welcoming the New Year at a mountain cabin in Vermont. Henry, his brother Luke, and our good friend John had spent the last day of the year on the slopes at Killington. After dinner and a make-shift dance party, we were collapsed around the living room talking about our resolutions and what lay ahead in 2015. Our friends who owned the cabin were moving back to the U.S. from Dubai. Luke would finish his first year of college in May. Henry was working out with a new coach to improve his tennis game for the spring season at his high school, and he was already looking forward to his summer trip to Africa.
Now, halfway through 2015, our friends have settled in Chicago. Luke has finished his first year of college. Henry, however, was admitted to Children’s National Medical Center on January 15th and has spent most of his nights in the hospital. At 16, Henry was diagnosed with an aggressive form of Leukemia. He would go through three rounds of chemo and was admitted for bone marrow transplant (BMT) on April 19th. Due to complications, Henry remains on the BMT unit today. This is not the year Henry, or any of us, imagined.
When daily decisions affect the life of your child, it is easy to get so focused on the big picture that everything else fades away in importance. When Henry would question how he would handle his school work, I told him not to worry at all about that, “it just wasn’t that important.” When Henry would comment on his changing looks as his hair fell out and his lean body inflated with steroids, I would brush it aside assuring him he was perfect. I thought minimizing his concerns would help alleviate any anxiety. I was wrong. As a teenager, his life was all about school, friends and tennis. In trying to minimize the impact Henry’s diagnosis and hospitalization had on Henry’s life, I was actually downgrading the very activities that made Henry’s life full; that made his life “normal.”
It has been over six months since Henry was diagnosed, and we have all learned so much about Leukemia, bone marrow transplant, and most importantly about ourselves. I cannot shield Henry from the negative impact that cancer has had and will continue to have on his life. We are learning to acknowledge the losses, grieve, and then find a way to move on. Cancer took away 11th grade, his tennis season, time with his girlfriend and friends at home, and his volunteer trip to Uganda. These are the pieces that made Henry’s life full. His life does not resemble the 2015 imagined on New Year’s Eve, but cancer has positive effects as well.
Once your life is affected by cancer, it is impossible to take anything for granted. Every day is a gift. Sharing a smile, conversation, or even a tear with a friend is special. The norms taken for granted become special moments. Henry may not be able to spend time with his friends at home, but he has made some lasting friendships with staff at the hospital. His nurses, doctors, and other patients make Henry’s world special. Allie, the Ulman Cancer Fund Patient Navigator at Children’s, stepped into Henry’s life the day after he was admitted, and she has held his hand, danced, laughed, listened and cried right along with Henry throughout his journey. Henry has not been able to pick up a book since January, but the outpouring of support from his high school counselor, teachers, and the CNMC Education Specialist, Rose, help him know he can do it and he will graduate with his high school class in June 2016. Henry cannot take his girlfriend on a date, but the time they have shared in the hospital has brought them closer. He told me one night that she made him feel handsome and loved. What a gift for a teenage boy!
These snippets of “normal,” time with his girlfriend or sharing a laugh with a friend, keep Henry going, help him stay strong. The Ulman Cancer Fund wanted Henry to experience that rite of passage, the Prom. Due to his compromised immune system, Henry could not be in a crowd, he could not eat a regular diet, and he would not have the energy for a night out. So, Ulman brought the Prom to Henry. On June 5th, 12 volunteers transformed a room in our house to a candlelit ballroom complete with dining room and dance floor. A tux, flowers (artificial, as he cannot be in contact with fresh plants), private chef and picture booth were sent in for the evening. Henry’s girlfriend arrived like a dream, as beautiful as ever. For that one night, Henry was just an 11th grader, dancing with his girlfriend at the Prom.
That night became all the more special when Henry was readmitted to the hospital two days later with complications from his transplant. He knows that any plans for summer will have to wait until next year and that his senior year will include many days in the hospital. Henry will continue to revel in the norm of teenage life. That “normal,” may not be what he expected as he looked ahead on new year’s eve, but it is a “normal,” Henry is learning to embrace.