Fireflies (8 page)

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!”

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.

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 Intensive 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.

When Matthew’s gurney had been wheeled down from Intensive Care, the nurses in the Pediatrics Ward had raised the bed in his room, gripped the sheet beneath him, and gently pulled him across from the gurney onto the bed. That bed, from which David had helped Matt to stand, had not yet been lowered. The mattress was as high as David’s chest and Matthew’s shoulders. Matt couldn’t set his hips on the bed and lean back to rest.

Matt wavered, close to falling. David clutched Matt’s left shoulder, released the IV stand, and reached for a button to summon a nurse.

But the button was too far away, David couldn’t reach the button unless he let go of Matt. The IV stand started wobbling. David grabbed for it. Matt wavered so fiercely that David couldn’t possibly expect him to try to edge toward the button that would summon a nurse.

The oxygen prongs fell out of Matt’s nostrils. The tube that drained blood from Matt’s huge incision stretched taught as Matt wobbled.

“Matt, I don’t have the strength to hold your IV stand with one hand and use my other hand to lift you onto the bed.”

“I can’t stand any longer.”

Why did I let myself listen to him? Twenty-four hours out of major surgery, and he’s out of bed, clutching me, the two of us wavering like two drunks trying to dance. How could I have been so stupid?

“Dad, that chair.”

“I don’t understand.”

“Can you reach the chair?”

“But
why?
”

“Do it.” Matthew wheezed. “Pull it over here. I think if I can stand on it …”

That’s when David knew he wasn’t as smart as his son.

“Yes!”

David frantically released his hold on the IV stand. He grabbed the chair, jerked it toward him, and desperately regrabbed the IV stand just before it toppled, all the while using his left hand to hold up Matt.

“Do you really think you …?”

“Just keep holding me, Dad.”

Matt strained. Gasping, he raised a foot to the chair. David eased him up.

With a greater gasp, Matthew raised his other foot to the chair. David eased him higher.

Matt’s hips were now level with the bed. He sat, clutched David’s shoulders, and with the most terrible groan David had ever heard, lay back in bed.

David quickly reattached the oxygen prongs to Matthew’s nostrils.

“So cold,” Matthew said.

At that moment, as David pulled a sheet and blanket over his shivering son, the door to the room swung open. The surgeon stepped in, followed by Donna, Sarie, and a nurse.

“The call I had to return wasn’t important,” the surgeon said. “But your mother and sister and I had a good chance to talk. As I was saying, Matt, I hate to do this. Nonetheless, I need to keep being tough on you. As soon as you’re able, in a day or so, you’ve got to get out of bed. More important, you’ve got to make your bladder work.”

Through his pain, Matt grinned. “It’s already taken care of.”

“What?”

“Here,” David said. He stooped and handed the surgeon the plastic bottle of urine.

The surgeon looked baffled. “But how did you …?”

“Well”—David glanced with love toward Matthew—“you might say we went dancing. I think the bed could be a little lower.”

“Wait a second. You don’t mean …?”

“You wanted him on his feet as soon as possible.” David directed another loving glance toward Matthew, who kept grinning through his pain. “I promised you. My son’s as tough as any patient you ever had.”

Tough doesn’t describe it. What do you say to a fifteen-year-old boy, who stood only five-feet tall and weighed only a hundred pounds and was totally hairless, whose cancer and chemotherapy had made his skin translucent … what do you say when he recovers from his mind-disorienting sedation after major surgery and realizes the extent of what’s been done to him?

“Four ribs? A third of my lung?” Matt’s eyes became panicked. His next question, though, so avoided the crucial issue that David’s breath escaped him, pushed out by pity.

“Then I won’t be able to play the guitar again?” Matt’s voice broke. “I won’t be able to keep up my—”

“Music?” David said. “The surgeon took some muscle tissue from your back and grafted in onto your chest where your ribs used to be. With some physical therapy, you ought to be able to have the strength to hold your guitar. Later, when you’ve stopped growing”—
if
, David thought,
if you get the chance to be old enough to stop growing
—“you’ll have another operation, not as serious, to put a support brace into your chest, to replace the ribs you lost. You won’t have a gap there. No deformity. You’ll stand straight. As far as your lung’s concerned, if you’d lost it completely, you wouldn’t be able to breathe sufficiently to play on stage with a band. But you only lost a
third
of your lung. You won’t run any hundred-yard dashes. You won’t charge up a dozen flights of stairs. But you’ll be able to walk as easily, with as little effort, as you did before. If you don’t try to be Bruce Springsteen and sprint around the stage, you still have a chance to be a musician.”