Waging war on cancer.
Battling leukemia.
Bravery in battle.
It's a popular metaphor: cancer as an enemy to be vanquished by a genius strategy devised by oncologist-generals, an arsenal of the most powerful and deadly weapons and poisons, a skilled army of foot soldiers in the form of nurses and techs, and most of all the valor of our star little soldier.
Sometimes it's a sports analogy instead. It's a "team" around the star player. Coaches and cheerleaders. The opposing team is the enemy: unsportsmanlike, doesn't play fair, needs to be taught a lesson.
Sometimes it's a sports analogy instead. It's a "team" around the star player. Coaches and cheerleaders. The opposing team is the enemy: unsportsmanlike, doesn't play fair, needs to be taught a lesson.
There's nothing inherently wrong with any of this. It's just a way to make sense of the senseless. It gives us all roles to play - supporters, reinforcements, prayer warriors, many good guys and one bad guy. But for some reason I can't quite put my finger on, these analogies bug me. In their sunny dispositions and tough talk, the complexity of this experience gets smoothed away into the well-worn paths of these metaphors. Teams and combatants win or lose. They engage the enemy and one comes out on top. But the reality is messier than that.
Maybe I don't want to make sense of Hope having leukemia. I want to cling to the belief that it doesn't make sense in any simple way. She had a mutation, one more likely because of her extra 21st chromosome. It led to a wild cancerous growth of white blood cells. Our discovery of those events still feels random, lucky, head-scratching. We have engaged an incredible set of medical professionals at an amazing hospital to execute the current research protocol to kill those cancerous cells. There are a million ways it could go wrong - infection, short term side effects, long term damage, and the seldom-spoken but ever-present fear of relapse. Along the way we see grace everywhere we look - in the dedication of nurses and doctors and medical techs, in the support of strangers who have traveled this road before and foundations constructed in the wake of the unspeakable loss of a child, in the simple acts of friendship and love when texts and voice mails check on our progress, in the steadfast love of our families. And most of all as we watch Hope grow into a person who astounds us at every turn - her humor and intelligence, her empathy and curiosity, her enthusiasm and insistence on a full life in every moment.
Maybe I don't want to make sense of Hope having leukemia. I want to cling to the belief that it doesn't make sense in any simple way. She had a mutation, one more likely because of her extra 21st chromosome. It led to a wild cancerous growth of white blood cells. Our discovery of those events still feels random, lucky, head-scratching. We have engaged an incredible set of medical professionals at an amazing hospital to execute the current research protocol to kill those cancerous cells. There are a million ways it could go wrong - infection, short term side effects, long term damage, and the seldom-spoken but ever-present fear of relapse. Along the way we see grace everywhere we look - in the dedication of nurses and doctors and medical techs, in the support of strangers who have traveled this road before and foundations constructed in the wake of the unspeakable loss of a child, in the simple acts of friendship and love when texts and voice mails check on our progress, in the steadfast love of our families. And most of all as we watch Hope grow into a person who astounds us at every turn - her humor and intelligence, her empathy and curiosity, her enthusiasm and insistence on a full life in every moment.
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Every night at around 11, I put on my nitrile gloves load up a syringe and head into Hope's room. I whisper to her that I need to give her medicine and she groggily sits up, takes her med, sips some water and lays back down. Routine. No problem.
A couple of nights ago Hope sat up and said sleepily, "No medicine." Shaking her head, lips pursed, and a more forceful, "I no want my medicine." I had to do a little cajoling before she gave in.
Two years of needle sticks and tubes. Chemo and anesthesia, anti-nausea meds and steroids. Sore bellies and aching legs. Interrupted sleep and long periods of confinement. She almost never complains. She tells us how she feels but she accepts what needs to be done. Two years.
Two years of new words and new skills. When this started she was still speaking in at most 2-word phrases and signing a lot. Now she never. stops. talking. Unless she's singing. Jokes and idioms, stories and memories. Within a month of starting treatment, she wasn't walking or standing up. Now she's running, climbing, jumping. When this started she couldn't be away from me at all. Now she leaps out of the car at school and calls goodbye over her shoulder; she stays home with her big sister while I run errands; she has her therapies at the elementary school where she sits at the table and does every task until it's done. Two years.
Almost done. 121 days and counting.
____
My parents came to visit this weekend. Two years ago at 7:30 pm on Valentine's Day I called and told them to get in the car and come right away. By 9, Greg, Hope and I were on our way into the ER. My parents made the next eight months possible, dropping everything to sit in clinic with us, drive the big kids everywhere, shop and cook, and just be with us, witnessing the very worst days. This weekend we made new memories. Same cast of characters but very different times indeed.
Two years of new words and new skills. When this started she was still speaking in at most 2-word phrases and signing a lot. Now she never. stops. talking. Unless she's singing. Jokes and idioms, stories and memories. Within a month of starting treatment, she wasn't walking or standing up. Now she's running, climbing, jumping. When this started she couldn't be away from me at all. Now she leaps out of the car at school and calls goodbye over her shoulder; she stays home with her big sister while I run errands; she has her therapies at the elementary school where she sits at the table and does every task until it's done. Two years.
Almost done. 121 days and counting.
____
My parents came to visit this weekend. Two years ago at 7:30 pm on Valentine's Day I called and told them to get in the car and come right away. By 9, Greg, Hope and I were on our way into the ER. My parents made the next eight months possible, dropping everything to sit in clinic with us, drive the big kids everywhere, shop and cook, and just be with us, witnessing the very worst days. This weekend we made new memories. Same cast of characters but very different times indeed.
