Learning to pray on the pediatric oncology ward
I have always prayed at night. I always felt like God could hear me the best just before bed, in the stillness before falling asleep. When I was younger it was formulaic prayers (as many as possible, to cover all of my bases), and as I got older prayer became looser, more personal. I would have a conversation with God about my day, about people I knew who needed help, about my own needs. In the darkness, God felt close and attentive.
The hospital was different. Sometimes, the words would not come. I would lie there on the vinyl-cushioned seat by the window, my daughter’s heart rate monitor pinging in the background, and try to conjure up some peace. But peace was hard to come by.
On those nights, my prayer became simple; just one word, repeated over and over.
For the five months my daughter Rose received chemotherapy treatments for a brain tumor, I felt as alone and distant from God as I ever have. It was also a time when I realized my dependence on God most clearly.
For the five months my daughter Rose received chemotherapy treatments for a brain tumor, I felt as distant from God as I ever have.
My daughter Rose was diagnosed with a brain tumor at eight months old—Medulloblastoma, the most common form of childhood brain cancer. Our neurosurgeon assured us that they remove these tumors all the time. How strange it felt that something as earth-shattering as your child having a brain tumor could be routine for someone else. Strange, yet comforting.
Surgery was the easy part. Afterwards, they placed a temporary shunt in her head to drain off excess brain fluid: a tube that slithered out from beneath a bandage on her scalp, up to a plastic bag on her IV tree. We had to call a nurse to clamp the line before we could pick her up. My daughter was sick and hurting, and I could not even hold her without someone else’s help. As a parent, you want to protect your child more than anything. You will use all your power to do so. But this showed me how powerless I was, how dependent I was on people more skilled and knowledgeable. I was getting used to feeling scared; I had not realized that I would feel so helpless.
I asked for support in the ways I knew best. Like a good millennial, I posted about Rose’s diagnosis on Facebook. And like a good Catholic, I asked for prayers.
Like a good millennial, I posted about Rose’s diagnosis on Facebook. And like a good Catholic, I asked for prayers.
The assurances came flooding in: “Praying for you and little Rosie;” “Prayers for healing;” “Storming the heavens!” Word was passed to extended family and friends. My students found out when Rose was included in our class’s morning prayer, and soon I was getting emails from their parents, offering their own prayers. One friend, a Catholic youth minister, had members of one of his teen retreats make spiritual bouquets for us. As my father-in-law said at one point: “There are maybe five people in the Western Hemisphere who aren’t praying for Rose yet, and they just haven’t checked their email yet.”
My own prayers still did not come quite so easily, if they came at all. As a high school campus minister, this was difficult to admit. Usually I am the one counseling people through crises of faith, not wrestling with one. But wrestle I did.
Of all things, healing was the hardest for me to ask for. I was afraid of false hope.
I struggled to decide what I should pray for. I know the obvious answer was healing. But of all things, this was the hardest for me to ask for. I was afraid of false hope. I believe that God answers prayers, but I also believe that those answers are not always exactly what we are expecting. I often have found this mystery to be beautiful. But it is easier to believe that in the abstract or in the small things. It is fine for God to move in mysterious ways when you are praying over which job offer to take. When your daughter is lying in a hospital bed, these mysterious ways are terrifying and frustrating. When your daughter has brain cancer, you want God to be more straightforward.
I was afraid of asking God for anything that seemed like a long shot. Perhaps that shows a lack of faith on my part, or at least a lack of hope. But hope seemed distant and abstract when there were so many hard, immediate fears. Suffering has a way of giving you tunnel vision, anchoring you to the present, painful moment.
I was afraid of asking God for anything that seemed like a long shot.
For better or worse, this was my emotional reality. I was grateful when others would pray for healing but found myself unable to join them. Instead, I floundered, searching for a prayer that felt true. I believe that God knows our hearts better than we do, and when I could not find the words I put the ball in God’s court, hoping God knew what I needed better than I did:
Eventually Rose received a permanent shunt. Our social, happy baby became quiet and lethargic, weighed down by painkillers and exhaustion. I was ecstatic the first time she laughed, overjoyed and overwhelmed with relief. This was after we were discharged, after several days of her slowly coming back to herself. I felt, at last, that it was over.
We were back in the hospital within a week. First an emergency room visit for a fever. Then a short stay because of a virus. And then another because she could not keep any food down. We began to realize that “over” was not even on the horizon.
I was grateful when others would pray for healing but found myself unable to join them.
We started chemotherapy a month after her diagnosis. Chemo is everything you have heard it is. Rose lost her hair, lost a lot of weight. She started refusing food, so we eventually had to insert a feeding tube into her nostril. Often she would throw up her liquid meals; sometimes she would throw up the tube itself.
The treatments made her irritable, and she needed to be held most of the time that she was awake. Even then, it was difficult to really comfort her. Sometimes we had to give her small doses of morphine so that she (and we) could sleep.
For those five months, the Pediatric Hematology/Oncology ward became our home. We slept there every night. We would alternate leaving for work, unless one of our parents’ could stay at the hospital for the day, and hurry back immediately after. We did our laundry there, kept our work clothes there, got very familiar with all of the nearby delivery places.
I still was not sure how God might answer my prayers, but I also knew that I could not do this alone.
And I found a way to pray. I still was not sure how God might answer my prayers, but I also knew that I could not do this alone. I began to pray before falling asleep, as I had for years. You are never really alone in a hospital, and that presented some challenges. My prayers were often interrupted by nurses coming in to check Rose’s vital signs or to replace an IV infusion. But it was my only option, so I would squeeze my eyes shut and try to center myself.
Unable to find a perfect prayer, I would just speak my needs. I would pray for Rose, for my wife, for myself. I would pray for the nurses and doctors, grateful for their knowledge and experience. I would pray for strength and patience and whatever extra grace there was that could help us through the coming day. These prayers went out into the darkness, and for the first time in a long time, I wondered if they were heard.
Then, the next day, we would somehow find the patience we needed; friends would call or stop by; someone would make us laugh or buy us dinner or watch Rose so we could steal away for an hour. I never regarded any of these things as the miracles they were. That is how it has often worked, in my life: My prayers are answered, and I almost do not notice.
That is how it has often worked, in my life: My prayers are answered, and I almost do not notice.
All told, Rose weathered a tumor resection, shunt placement, four rounds of chemotherapy and a stem cell transplant, along with various feeding tube insertions, X-rays, M.R.I.s, scans and other tests. When we were discharged for the final time, all three of us were entirely spent.
But inevitably, she began to smile and laugh again. She got used to sleeping through the night, to moving around freely, unencumbered by IVs. My wife and I got used to thinking of the future in increments longer than the next couple of hours. We started making plans again, started hoping. We have not had a hospital stay longer than a couple of hours for months. For now, at least, it is over.
Looking back, I am profoundly aware of the ways that God gave us the strength and patience we needed to make it through every day. I recognize how much we were supported by others—friends, family, even strangers—how they helped us carry loads that we could never have managed alone.
And that leads me to my final and most important prayer. It is the prayer I say every night, the only prayer that can encompass this experience and what we learned from it. Like the best prayers it is simple and honest: