Chris sat on the edge of the sofa in our family room, the summer sun filtering through the sliding glass door behind him. I could see the fingerprints on the glass. Those were the prints of a little boy whose greatest worry had been a lost homework paper or a squabble with his pesky little brother. Now, in an instant, that was changed forever. How I wished my only concern was to wipe away those prints. How I wished I could wipe away this nightmare. Chris had always been an intuitive child, and he immediately sensed the gravity of the situation. “Honey, we have to talk to you. You know how you’ve been feeling really tired lately? Well, the doctor called and told us what’s causing it. It’s a problem with some bad cells in your blood. They are going to give you some medicine to help you get better.” The conversation remained calm until we came to the “C” word, but it had to be said. I had been a schoolteacher for 16 years and had learned early on that children deserved to be told the truth. They are much better at spotting lies and cover-ups than we adults give them credit for. And I knew that Chris needed to hear that word first from us, not from a stranger. Tears welled up in his eyes, and I noticed how skinny and vulnerable he looked. “I have cancer! Am I going to die?” “No, the doctor said the kind of cancer you have-leukemia - is one of the easiest kinds to cure. You aren’t going to die.” Bob and I repeated that several times, as much to convince ourselves as to convince Chris. We were adamant that cancer did not equal death. So now we had to prepare to live with it. We arrived at the medical building across the street from the hospital just before 5:00 PM so we were spared a trip to the emergency room. I’ll never forget walking down that long carpeted hallway for the first time. There were prints of tropical fish that seemed out of place in the frigid air-conditioning. The Pediatric Oncology Clinic was the last office at the end, and it seemed like it took forever to find it. We had begun our very long journey into the strange and frightening world of childhood cancer. I had no idea how many hundreds and hundreds of times we would walk down that hallway over the next several years. At some point during the confusion and fear that day, I decided that it would be a good idea to write everything down. And that was the beginning of my journal. The entries would continue for four more years, almost to the day.
June 30th, 1997
...At 5:00 Chris was seen by oncologist, Dr. Rossbach, who confirmed the diagnosis of leukemia. Chris was immediately admitted to the Intensive Care Unit. There we met the head oncologist, Dr. Barbosa, the ICU doctor, Chaplin Paul, and other professionals and nurses. Bombarded with information! This is what I learned: ALL is acute lymphoblastic (sometimes referred to as lymphocytic) leukemia. Also learned about chemotherapy...
My first few entries were devoid of emotion. Sometimes they were mere lists of medications and chemotherapy drugs. They reflected my state of shock and disbelief. It felt as if we were actors in a very bad play. Also tantamount was the sense of helplessness, and the sudden loss of control over our lives. Being an educator, the only way I could gain any sense of power was to learn as much as I could as quickly as I could. It was like cramming for the worst final exam any student ever had, and the penalty for failure was death. Not my death, but my child’s death! That first day in the hospital we also met the nurse educator Tilly. She was a short, stout, no-nonsense type, but she was also compassionate. She was the one who handed us sheet after sheet of consent forms and drug information sheets. She was the one who had the time to sit and patiently answer our endless questions. She was my new best friend. From her we learned that ALL was the most common, and the most curable, form of childhood leukemia. The cure rate was currently between seventy-five and eighty percent. Bob and I clung to that statistic like a drowning man clings to a raft. Excerpt #2: Christopher’s Journey: Maribeth R. Ditmars
Since bathroom humor seems to run deep in our family Chris came by it naturally. Thus Chris’s remote control fart machine was a great source of entertainment for us. The machine was simply a battery-powered speaker with prerecorded flatulence noises that were controlled by a small remote. Both the speaker and the remote control were small enough to hide easily. I remember one of those hospital days when Chris hadn’t been out of bed for a while and I was trying hard to convince him to get up and walk around. Finally, he agreed to do so only if I would put the fart machine in my back pocket, with him at the controls. (Ah the things we do for our children!) So off we went to have some fun in the elevator. We got on and Chris stood innocently in the back of the elevator, one hand on his IV pole, the other hand discreetly covering the remote. As more people stepped onto the elevator he allowed them to stand between us. Then, just as it filled with folks shoulder to shoulder, and the doors shut, he pressed the button. I tried not to laugh as the raspberry sounds blasted from my back pocket. Oh my, how polite people can be when they pretend not to hear! They seemed to be in quite a hurry to get off as the doors reopened! After a while I grew bolder and would let out a sigh of relief or a nice “Ahhhhh” after each blast. It was funniest when other children got onto the elevator. They would be unable to suppress their giggles and comments, “Mommy, did you hear that?” “Shhhh, be quiet, honey.” The poor parent would be just as embarrassed as if she were the perpetrator. Chris and I would tumble out into the hallway howling with laughter before hopping onto the next elevator. But we finally met our match when riding along with this one particular woman. She was a neatly dressed, elderly lady, barely over five feet tall. The three of us were alone in the elevator so the fart sounds seemed to reverberate off of the walls. Chris had really let it rip, and just as the doors opened for her to get off she paused momentarily and gently laid her hand on my arm. “Well, my dear, I bet you feel so much better now.” Chris’s conversation with Nurse Jen was the best of all. Jennifer was what Chris referred to as a “fox.”
June 29, 2001 cont’d
...“Jennifer,” Chris said, “when I die you are going to be so heartbroken that you’ll want to kill yourself. It will be just like Romeo and Juliet. So I think that you should hurry up and marry me before it’s too late.” Jennifer smiled and agreed that she would start referring to Chris as her ‘husband.’ Chris’s new name for her would be ‘babe.’ After that Jen started calling me ‘mom’... I laughed and cried at the same time. Only Chris could find the humor and the irony in the fact that he would never marry, never present me with a sweet young women to call me ‘mom’ and bear our grandchildren. Chris had connected with each nurse in a unique and special way, and he was saying goodbye to each in the same individual way. Petite little Maria, the same nurse that we had victimized on April Fool’s Day with the colored urine, was there that week also. Dark-haired and doe-eyed, she moved in and out of the room almost noiselessly, taking pains not to disturb Chris when he was sleeping. Chris called her “the reindeer,’ and it suited her. Not long beforehand Chris had found out that she was from Miami. So every time she came into the room Chris made her dance a few steps and sing a few bars from the song “Welcome to Miami.” The patients had all decided that cute, bubbly Denise resembled a ‘Smurf’ cartoon character when she donned the plastic blue gowns that the nurses were required to wear when hanging chemo. So that last time Chris saw her he simply said, “Bye Smurf, I love you.” Tall, blonde Vanessa from Canada had been Chris’s Nintendo buddy during the months that she had worked the night shift. While the floor was quiet, and everyone else was sleeping Vanessa had played video games with Chris in the wee hours of the morning. Chris had enjoyed teasing her about her Canadian accent and her ugly orange suede sneakers. He told her that he wanted her to wrap them up and give them to Nurse Nancy for Christmas. But it was when I returned from a short break, thinking that Chris was asleep, that I saw him in all of his glory. He was holding court at the nurses’ station, seated in one of the rolling office chairs, surrounded by Nancy and the others. They were all laughing and playing an electronic trivia game. Chris was telling Nancy that she wouldn’t know any of the answers because she was blonde. So I sat down with them and lived in the moment. It was the most beautiful moment of my life. As I glanced around I noticed that Chris had changed the screen saver on their computer so that it scrolled the words “Chris loves Jennifer” I think almost anyone who has lived to middle age or beyond can recall some personal days of glory, whether it is making a game-winning touchdown on the high school grid iron, watching the birth of your child, getting that big promotion, or proudly escorting your children around in their home-made Halloween costumes. It’s those days of our lives when we can look back and say, “I made a difference. I achieved something.” I believe that Friday afternoon in June was a great day of glory for Chris. Instead of retreating in sorrow he connected with everyone as if to say, “I love you all, and I am loved. I am Chris. Remember me.”
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