By Alice J. Wisler
In 1996 we had tickets for a three-week trip to Japan. As I packed for our trip, excitement filled me. I couldn’t wait to experience the reactions of my three kids as we flew to Japan where I grew up as a missionary kid. My picnic-plaid journal would record their words and their vacation memories.
My husband and I hoped three-year-old Daniel would be fully recovered from his surgery and back to his energetic self by the date of our June departure. It sure looked promising because the night of his surgery he did cartwheels in our grassy lawn, laughing with friends who stopped by to check in on him.
Right before Memorial Day when people were getting their coolers stocked for picnics, the pediatrician called with news. The lump on Daniel’s neck was not Cat Scratch Fever or TB as earlier presumed. The surgery from the previous day showed that my son had a mass that consisted of small round blue cells.
That weekend I became familiar with a childhood cancer called Neuroblastoma. At UNC Hospitals in Chapel Hill, NC, Daniel had another surgery, a Broviac catheter inserted through his body—into the right side of his neck and out his back— and the start of his first round of chemotherapy. The catheter was the line used to dispense his chemo. Nurses taught us how to flush the line, clean the area of skin it was near, and tape the catheter to his back for safety purposes. We also learned the names of chemo drugs and found out that the narrow cot placed alongside Daniel’s bed was not as comfortable as it looked. It didn’t really matter; hospitals are not known for places of rest, regardless of the type of bed provided.
Daniel’s prognosis looked good—for a kid with cancer. Over the months of week-long hospital stays, the tumor responded to the harsh medications. He lost his hair, he hated being bald. He made friends with the oncologists and nurses, teasing and laughing with them. He threw up and felt weak and tried to be brave. I recorded each day in my picnic-plaid journal.
In the hospital chapel he asked God to heal him. “Please God, take away my boo-boo.” He liked to hear how people around the world were praying for his health.
But on a balmy day in January after his chemo and radiation treatments ended, he felt weak. I took him to a scheduled check-up at the oncology clinic.
At nine his blood pressure was fine, but there was some concern about his blood counts. His hematocrit was dangerously low. The nurse was ready to take another blood sample to test again when Daniel complained of not being able to breathe. “I just wanna go home,” he told me. The doctor was called in; no pulse could be found.
Daniel was wheeled to the ER. He coded once he arrived, was resuscitated, and coded again. A staph infection was discovered to be the culprit.
Daniel lived on the ventilator in the PICU for five days. When the EEG showed he had no brain activity except for voluntary, I asked for another. But the second results matched the first, so we removed him from the ventilator, saying our good-byes. Yet Daniel’s heart and lungs continued to function.
Since the staff in the PICU could do nothing more for him, his oncologist asked that we consider moving him to a room on the cancer ward. “We want to take care of him and of you,” he said. “Daniel is our patient. We remember when he walked down the corridors swinging off his infusion pole.” I looked at my son, a calm figure with his eyes shut, morphine pumping into him. Surely, God would provide a miracle and Daniel would wake from his comatose state and jump on the bed as he had before.
When Daniel breathed his last in my arms on a cold night at the beginning of February, I was six months pregnant. My baby within kicked with life as my bloated and compromised child ceased to move.
I felt abandoned by God. I didn’t care to live. During the next days, I didn’t want another casserole or vase of flowers brought to my front door. I wanted my son back in my arms—a chance for him to live life outside hospital walls with a new crop of hair as he played with his siblings.
Instead, I would have to learn to survive his death. It would mold me, push me, shape me, and change me. I would feel God’s presence again. In time, I would walk with a new faith, one harbored within a broken heart.