His arms and legs now tingled so severely it seemed as if electricity stung him. The band around his chest squeezed tighter. His forehead felt cold, yet sweaty.
At the third floor, the elevator door opened. He lurched out, turned left down another corridor, and compelled himself not to waver. He even managed to quicken his pace.
Passing patients’ rooms, he reached a nurses’ station whose design seemed primitive compared to the type he’d seen in his nightmare.
“Mr. Morrell, how good of you to come back.” A blond nurse smiled.
David remembered her, and yet it didn’t seem from recent conversations, instead from long ago. “Come back?”
“We were hoping you’d give us a visit. How’s Matt doing?”
“What do you mean? That’s what I’m here to find out.”
“But you know he isn’t here. He left a week ago. He’s up in Bone Marrow.”
Oh, my God, David thought. I reached the wrong floor. I went to where Matt always used to get his treatment: the Pediatrics Ward.
From a child’s room, he heard the distinctive sound of a nurse gently paddling her hands on the chest of a cystic fibrosis patient, clearing fluid, helping constricted lungs to breathe.
“Of course,” David said. “I must have … Bone Marrow. I made a mistake.”
“I know what you mean. Matt’s been on this ward so often, I can see how you’d come back by habit.”
Disoriented, David surveyed the rooms along the corridor. It seemed that Matthew had stayed in every one of them at various times. In the last six months (forty years ago?), this ward had become a second home.
In one room, he recognized (again as if through a haze) a ten-year-old girl bald from chemotherapy. When first diagnosed, she’d been riddled with tumors, but treatment had managed to cure her. Nonetheless, the patient’s mother, unable to control her revulsion, had disowned her daughter, never once visiting, eventually divorcing her husband.
In another room, David saw an eight-year-old boy whose parents had considered his cancer an inconvenience to their routine. Every three weeks, on a Friday, they drove him to the front door of the hospital, let him out, and left while he found his way up to the Pediatrics Ward for chemotherapy. He stayed for the weekend, vomiting, the fear and loneliness in his eyes enough to make David want to strangle the parents, who drove back to the hospital on Monday and waited while a nurse brought the boy in a wheelchair down to the hospital entrance, where she helped him into the car.
But not us, David thought. Not us! Donna, Sarie, and I stayed with Matthew always, never letting him give up hope, never allowing him to feel lonely or succumb to despair. Taking shifts, and sometimes all three staying with him at once, they’d bolstered his spirits and let him know how much he was loved. They were his companions at all hours for his six months of treatment. Donna and David had probably seen Matt more than most parents saw their children, in snatches, an hour in the morning, an hour at night, for a lifetime.
Early in Matthew’s treatment, a doctor had asked about David’s work. “How’s your fiction going? Any new books?”
Restraining his frustration, because the doctor was trying to be friendly, David had answered, “My work? Since Matt got sick, I’ve stopped writing. Right now, as long as it takes, my job is my son.”
3
“Yes,” David said to the nurse. “I made a mistake. I’d better get up to the Bone Marrow Ward.”
“But you didn’t answer my question. How’s Matt doing? Is he okay?”
“The answer’s too complicated. It depends.”
“On …?”
“If you look forward or back.”
“What?”
“Right now, he’s doing well.”
“He’s one of our favorite patients, you know. He’s so brave. We love his sense of humor.”
“So do I. Believe me, so do I. For what it’s worth, I think you and the rest of the staff did a wonderful job.”
“Keep us posted.”
Yeah, David thought, but I hope the message isn’t the disaster of my nightmare.
“I’ll let you know. Right now I’d better get up to where I belong.”
To the Bone Marrow Ward.
Toward what David was becoming more convinced was a desperate chance for salvation.
4
The Bone Marrow Ward. Logical, simple, ingenious, and if your case isn’t in the right statistics, terrifying. You don’t go there to be treated unless there’s nowhere else to go.
Tumors are perversely fascinating in their capacity for evil. They may be the only organic substance that left unharmed and given nourishment lives forever. In laboratory conditions, they survive and survive. With Matt, the initial combination of chemical agents (each combination is called a protocol) proved ineffective. After several administrations of it, a second protocol was tried, and that too proved ineffective. Matt’s tumor became classified as resistant, an especially malignant life force. The third protocol showed results, however. The mass shrank 50 percent, and surgery (which would formerly have killed Matt, so large was the mass to start with) now became possible.
The surgeon explained that the operation would take eight hours. Matt would lose the diseased rib and maybe one rib to the top and bottom, depending on what the surgeon found. The principal risk was that the tumor had grown so close to the spine that in removing the tumor the surgeon might accidentally cut a nerve—or else the artery that supplies blood to the spinal cord—and Matt would be paralyzed.
“What are Matt’s chances of that happening?” Fear made the question a whisper.
“Chances?” the surgeon had responded. “I do my best. I can’t give odds. What happens to each patient happens to him one hundred percent.”
So Matt, with utter calmness, allowed himself to be prepared for surgery. The nurse who took his heartbeat and blood pressure readings was astonished by how relaxed Matt’s vital statistics made him seem. David, Donna, and Sarie walked beside Matt’s bed as he was wheeled toward the surgical area. Then the family was told to go to a waiting room.
5
The waiting room. A horror in itself. Plenty of televisions and magazines, but everyone stares at the floor.
An eight-hour operation, and the major risk is paralysis, but the surgeon is optimistic and says he’s going for total cure. So you know when three hours into the operation you get a message to meet with the surgeon, something’s horribly wrong—and when not one surgeon but three of them join you in a consultation room, you know that whatever’s wrong, it’s worse than you can imagine.
“We ran into troubles,” the first surgeon said.
“You don’t mean he’s paralyzed!” Donna said.
The second surgeon shook his head. “Not that at all.”
“Then …?”
The surgeons didn’t respond.
“For God’s sake, tell us.”
“The tumor may be inoperable.”
“What?”
“It metastasized,” the third surgeon said. “It’s not just on his rib.”
Metastasized. When David later repeated that word to friends and business associates, he was amazed by how many didn’t understand what metastasized meant. To spread. The tumor had sprouted seeds. Roots were growing throughout Matthew’s lung.
“No!”
“The metastases are so close to the spine I don’t think I can get them all,” the first surgeon said. “I’ll probably have to take several more ribs than I hoped.” The surgeon exhaled. “And all of his lung.”
David ached.
“The point is, if I don’t get every offshoot from the tumor, several other tumors will start to grow, and in areas where I can’t operate without killing him.”
“He’s going to die?”
The second surgeon nodded. “I’m sorry. You have to be prepared for that possibility.”
“But isn’t there anything we can do?”
The surgeons glanced at each other.
“The tumor’s be
en resistant to chemotherapy,” the third surgeon said. “The only thing I can think of is to really give it a dose, I mean a humongous dose, of chemicals. To go for a bone marrow transplant.”
David vaguely recalled having heard the term before, but he had no idea what it meant.
“It’ll take too long to explain right now,” the second surgeon said. “The treatment’s severe, much worse than the chemotherapy your son’s already received. It’s risky, but in many cases, especially leukemia patients, it’s been known to work.”
“But you’ve got to make a decision,” the first surgeon said. “As soon as I opened Matt and saw what I was dealing with, I put him on hold. Don’t worry about him for now. The respirator and the other machines are keeping him alive. But I can’t leave him like that very long. You’ve got a decision to make.”
What’s the worst thing that ever happened to you? How about the worst question you ever faced?
“The options are this,” the first surgeon said. “I can leave the tumor as it is. I can close Matt up. The tumor will continue to grow. But Matt will be able to have a more or less tolerable summer, provided he gets enough pain medication. He will be dead by the fall.”
Donna’s face streamed with tears.
“And the alternative?” David breathed.
“I can go ahead with the surgery, take several more ribs than I hoped, probably all of his lung, leave the parts of the tumor I can’t get at, close him up, and hope that chemotherapy combined with a bone marrow transplant kills the rest.”
“But remember, the tumor’s especially resistant,” the second surgeon said. “The bone marrow treatment might not work.”
“And the treatment’s extremely severe, worse than anything he’s already been through. He could die from it,” the third surgeon said. “He might not even have the tolerable summer he’d have if we took the first option and stopped the operation right now.”
“I can’t keep Matt on hold up there forever,” the first surgeon said. “I’ve either got to stop the procedure or get on with it. Soon.”
“How soon are you talking about?”
“You’ve got fifteen minutes to make up your mind. And this is a one-time-only decision. You can’t change your mind tomorrow or next week. Matt couldn’t survive another exploratory operation of this scope. And if the tumor gets any bigger, I’d have to leave much more of it inside him, which means the bone marrow treatment would have a great deal less chance of being effective.”
“Fifteen minutes?” David’s voice rasped as if his throat were packed with broken glass. “If you just sew him up right now, he’ll die for sure?”
“Sometime in the fall.”
“And if you take out what you can and go for the bone marrow transplant …?”
“He still might die, and you’d be denying him a tolerable summer. With the transplant, his summer would be a distress, to put it mildly.”
Donna kept weeping. Sarie seemed about to faint.
“Fifteen minutes?”
“Less than that now,” the first surgeon said.
“And a one-time-only decision?”
“Correct.”
“Tell me what to do!”
“I can’t. That’s why I came down here to speak with you. The situation’s too complicated. It’s up to you to make the choice.”
“I can’t”—David gasped for breath—“face Matt when he wakes up and tell him we did nothing. I couldn’t bear the look in his eyes. I couldn’t bear telling him that he doesn’t have a chance—that he’s going to die.”
David looked for agreement from Donna and Sarie. Cheeks raw with tears, they nodded.
“Go ahead and cut the sucker out,” David said. “Get as much as you can. We won’t give up. Matthew’s strong. He’s proved it before. He’ll prove it again.”
“Just so we understand each other,” the second surgeon said. “Whatever happens, it’s extremely important to your mental health that you never second-guess this decision. You made it in good faith. Never reconsider it.”
“Cut!” David said. “Get as much of that bastard tumor as you can!”
6
Another waiting room, this one outside Intensive Care. Matt’s operation, as predicted, took eight hours. The chief of the surgical team came into the crowded room and found a place to sit across from David, Donna, and Sarie. His eyes were red with exhaustion. He was scheduled to perform another operation within an hour.
“How bad?” David asked.
There must have been forty people in the room, all afraid for their own friends or relatives. Eavesdropping unabashedly, they waited for the surgeon’s answer. There are no secrets—privacy is impossible—in the waiting room for Intensive Care.
“Actually it went better than I expected.” The surgeon rubbed his raw eyes.
David straightened.
“I only had to take four of his ribs and a third of his lung.”
Only? When it comes to your son, and you were told he’d probably have a quarter of his body cut away, you actually feel a bizarre relief when you learn it was only a fifth.
“Then the roots of the tumor hadn’t spread as far as …”
“Not as extensively as I feared,” the surgeon said.
“Then”—David took a breath, afraid to ask—“you actually got it all?”
The surgeon bit his lip. “No. There’s a growth—it isn’t big, the size of the tip of my little finger—that I had to leave against his spine. It wasn’t just a matter of risking paralysis if I took it. I’d have killed him.”
The other people waiting apprehensively to hear about their friends or relatives listened more intently.
“Oh …” David’s voice dropped. He’d been warned not to hope, and yet he had hoped, and now he suffered the despairing consequences.
“As I told you, no matter how well the procedure went, I knew I wouldn’t get what I wanted: total surgical cure.”
“Then we go to bone marrow,” David said.
7
Matthew was strong. David had promised the surgeons that, and the degree of Matt’s strength was about to be proven. Matt’s surgery had been so severe—“The most painful there is to recover from,” the surgeon explained—that Matt had been scheduled for two days of intensive care instead of the usual one.
Nonetheless, twenty-four hours later, Matt’s tortured body had so responded to postoperative treatment that he could be moved back to his room on the Pediatrics Ward.
“You were right. You son’s constitution is remarkable,” the surgeon said. Then turning to Matt, who was conscious though groggy from pain medication, he added, “But Matt, I’m afraid I’m going to have to keep being tough on you. I can’t let you rest. I can’t let fluids accumulate in your system. You’re going to have to stand as soon as possible. You’re going to have to make your bladder work.”
Matt groaned. “Stand?”
“As soon as you’re able. The important thing is you have to pee. I don’t want to have to put a catheter back into your penis.”
Matt groaned again.
The surgeon’s pager made a beeping sound. From the small black box on his hip, a voice announced a telephone number for him to call.
“I’ll be right back,” the surgeon said.
Donna, Sarie, and a nurse followed the surgeon out, leaving David and Matthew alone.
David hesitated. “How are you doing, son?”
“I hurt.”
“I bet.”
Another pause.
“Well, let’s get it over with,” Matt murmured.
“What?”
“If I have to stand”—Matt groaned—“and pee, let’s do it now so I can sleep.”
God’s honest truth. That’s what he said. And don’t be surprised that he could talk, much less be able to move. Maybe in the movies, patients are unconscious for days after serious surgery, while the actors have meaningful conversations at the bedside. But in real life, the physicians want you alert as soon as possible. In In
tensive Care, Matt had been conscious enough and alert enough to write notes (his mouth had been blocked by a tube driving oxygen into his lungs) two hours out of surgery.
“The pain’ll just keep on,” Matt murmured. “He told me to stand. Let’s do it. Help me.”
Somehow, despite the oxygen prongs attached to Matt’s nostrils … and the IV tube leading into his arm … and the tubes draining blood from an incision that curved from Matt’s right shoulder blade down to his waist, then around his waist and up to his right nipple … somehow David and Matthew got Matthew out of bed.
Matt gingerly placed his bare feet on the floor. He gasped and wavered, while David held him up and at the same time held the IV stand.
David groped for a plastic urine bottle and supported it under Matt’s penis.
David waited, it seemed forever.
Matt’s knees began to buckle. David gripped his left shoulder more firmly.
“Hurry, Matt.”
“I’m trying!” The force in Matt’s voice must have been agonizing to him. “It doesn’t want to come!”
“Then we’ll try another time.”
“No!” Matt almost sobbed. “I don’t want another catheter! I don’t want any more pain!”
Dribble.
The sound, so commonplace, made David’s heart break.
Dribble.
David felt the warmth of the urine through the plastic bottle he held. That warmth was the most intimate sensation he’d ever known.
Dribble.
Thank God!
The dribbles stopped.
No!
Matthew’s face contorted with strain. “That’s it. Can’t … make myself go anymore … tired … have to … get back in bed.”
“Twenty-four hours out of major surgery and you’re standing, peeing? You’re the strongest, bravest person I’ve ever known. I’m proud of you.”
“Have to get back in …”
“Bed? I know, son. Just a minute, and you can rest.”
David set the urine bottle on the floor, eased Matt toward the bed, and that’s when they discovered the huge mistake they’d made.
Fireflies: A Father's Classic Tale of Love and Loss Page 6