Her faith and determination helped her son battle cancer
Posted in , Sep 30, 2008
Something was wrong with my son David. He was a big kid, eight years old, 150 pounds, but he had lost his appetite. He'd stopped telling jokes, too, stopped being his usual happy-go-lucky self. His jaw hurt for no discernible reason. He began throwing up.
We thought David was suffering side effects from his medication for attention-deficit disorder. Then he threw up in the car on the way to his favorite restaurant, and the pediatrician told us to get him to a hospital immediately.
The emergency-room doctor was young, a resident. He checked David over, shined a light down his throat. He was so shocked by what he saw, he uttered something I can't repeat in polite company. The doctor apologized and said, "We need an MRI immediately."
I noticed the nurse crying. What did she know that I didn't? Hours later, at 2 a.m., I found out. The diagnosis was still imprecise, but David was being admitted. To the oncology ward. "A massive growth is pushing into your son's throat," the doctor said
"Mommy, what's wrong with me?" David asked.
"You're going to be okay, sweetheart."
"You'll make it go away, right, Mommy?"
"Of course I will."
They gave David pain medication and he soon fell asleep. My husband, Bryn, and I lay on the floor. The room had a recliner chair, but neither of us could figure out how to work it.
My mother-in-law had already taken our two older boys, Matthew and Keith, home. In the dark I tried to pray. But all that came at first were memories.
David was our youngest child, our baby. I loved him more than I knew it was possible to love anyone. We had a goodnight ritual we went through no matter what kind of day it had been. I would say, "You." He would say, "Me." And together we would say, "Forever. Sleep with the angels, roses on the pillow, sleep with Jesus."
You, me, forever. Lying on that cold hospital floor, I felt fear and anger build. Twice before David I had gotten pregnant only to lose the baby. God, you didn't give me David just to take him away, did you? A piece of medical equipment beeped. Can you at least give me some kind of answer? Some reassurance? Silence. I waited in that silence a long time. No answer came. Fine, I finally decided. I'll do it myself. David was going to live. No power on earth would take my boy from me.
David did have cancer, in one of the worst places possible, at the base of his skull. His particular cancer was called rhabdomyosarcoma, an aggressive tumor spreading across much of the left side of his face and pressing on his carotid artery and optical nerve. It was why his jaw had hurt and he had felt so sick. It also explained his mood swings.
The tumor was right next to his brain. So close, in fact, that surgery was out of the question. David's only chance was intensive chemotherapy and radiation. Even then, only half of kids diagnosed with his kind of cancer survived five years.
Those odds didn't daunt me. I was determined to will David back to health. Bryn and I both worked for a computer software company—I handled finances, Bryn managed the warehouse—and our bosses generously allowed us to take time off and work odd shifts to spend as many days and nights with David as possible.
We became his nurses, his coaches, his constant companions. He had an IV line inserted in his chest. We learned how to clean it and check for infection. His eyes developed nystagmus from the pressure on the optical nerve. We made certain his patch stayed in place. When he had trouble breathing, we held the oxygen mask to his mouth.
As David's treatment advanced, doctors told Bryn and me that his chances were even worse than most kids'. The cancer was too deeply entrenched. I refused to be discouraged. Although the chemotherapy left David skinny and weak, I urged him out of bed every day to walk down the hall.
We reached our insurance company's $1 million coverage cap in 11 months. After that, we faced bills up to $1,400 a week. Not going to stop us, I thought. I began selling off clothes and other things around the house.
Much later, when we learned that only an expensive experimental surgery had a chance of saving David, I even went on eBay and put up for auction one of the "Frank Must Die" bumper stickers Bryn had made—"Frank" was our family nickname for David's cancer, short for Frankenstein. I told potential bidders I was trying to raise money for my son's cancer care. Amazingly, we got some media coverage—a reporter at our small hometown paper happened to know someone at the Washington Post—and money came in. The support was wonderful. Still, David wasn't getting any better.
One night in the hospital he sat up in bed and said, "Mom, the angels came to talk to me. It's time for me to go."
I peered at him through the dimness, fighting to stay calm. Was he dreaming? "You saw angels, David?"
"They're here with me now, Mom. It's time to go. I'm tired."
I struggled to control my voice. "Sweetheart, I know you're tired. But you're not ready to go. Fight. Stay with me. Just stay with me a little while longer."
I rushed out of the room and told the nurses, then called Bryn and asked him to gather everyone. I was about to start praying when a nurse came up to me. "Tiffini, I'm sorry. David's vital signs are very low. This could be the end. We've done everything we can for him. His little body is worn out."
I went back to David's room and sat in a chair in the dark. Again, my fear surged and I felt it form into words. I started to pray, then stopped. Something pressed on me, some resistance. God? Or just my own exhaustion? I was deeply tired. Tired of fighting. Tired of fruitless hope. Why, God? Why? He's mine. You can't take him!
Again the pressure, the resistance. Only this time it had a shape, almost like a blanket settling over me. A calmness, a sense of release. I heard words: David is a gift. Love him. Don't own him.
The calmness deepened and I found myself repeating that word, "gift." I had been trying so hard, throwing every ounce of strength into David's life. What if that life wasn't mine to have, to direct according to my will? What if the best thing I could do for David was give him to God? Lord, David's life is a gift from you, not me. Let your will be done.
I looked up. Our entire family was there. They kissed David and said goodbye. When they left, Bryn and I sat together in the room, holding each other, crying and praying. We didn't stop until 7 a.m., when David suddenly sat up. We looked at the monitors. His vital signs were normal.
"What are you guys doing?" he asked.
"David? Are you all right?" I asked.
"Can you remember anything at all about last night?"
David cocked his head. "You mean about Jesus? Sure. He told me I could stay awhile longer. There's more for me to do."
"You...talked to Jesus? Did you actually see him?"
David made a face. "Mom, come on. He was too bright. I could only see the angels. They were gold."
"But you feel okay?" I asked.
"Yes, I feel fine."
Today David is a challenging 13-year-old. The road has not been easy. Radiation and chemotherapy did not rid him of cancer. We ended up taking him to Los Angeles for an experimental surgery that removed nearly all of his tumor.
Sometimes I think of the anger I felt that awful first night in the emergency room, my fist-shaking on the cold hospital floor. I don't blame myself for it. I'm a mother, after all. And I suppose I needed to pass through that anger to learn the lesson of my son's illness.
As is common with kids who survive cancer, David lives with side effects from radiation and surgery. He has good days and bad days. Yet he and I both know that each and every day is a gift. And that it is a blessing to say each night, "You, me, forever."