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.”
8
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.”
“Still have a chance?” Matthew sensed the implication. He mustered the courage to ask the all-important question. “Still have a …? How’s my case doing?”
David, Donna, Sarie, and Matt’s physicians had made a bargain with him from the day of his diagnosis. No one would ever lie to him.
“Dad? My case?”
“Not so good. The surgeon couldn’t get it all.” David held back tears.
Matthew knew that his tumor was resistant to chemotherapy, that only once had any combination of chemicals caused a response, and even then only a partial one. To the best of his information, surgery had been his final hope.
“Then I’m … going to die?” Matt asked the question as if he didn’t understand the meaning of the words, as if they were gibberish or a foreign language. But all at once he did understand, and tears leaked from his eyes. “I’m going to die?”
A physician, who saw Matthew seldom and thus hadn’t established rapport with him, responded. “You have to face up to it. There’s a strong risk you might not survive.”
At the time, David thought the doctor’s response was so cruelly matter-of-fact that David wanted to grab the man, shake him, and curse him for his insensitivity.
But the physician, it turned out, had been forced to answer that ultimate question so many times in his career that he’d finally concluded that the only adequate response was to be direct and objective. An unemotional statement of the facts.
And the fact was that Matthew did have to be prepared. His chances of survival were narrowing. There was a likely possibility he would die.
“But”—Matthew sobbed—“I don’t want to die.”
“No one wants to die,” the physician said. “Everyone eventually does, though.”
“When they’re old, when they’ve lived their lives.”
“It doesn’t always happen that way.”
Matthew sobbed harder. “I’m just a kid.”
No pain, no catastrophe that David had ever endured compared with the heartbreak Matthew’s next sobbing statement caused.
“No one will remember me.”
David wanted to scream.
Instead he held Matthew’s hand and tried not to let him panic.
“If the worst does happen, I promise, son. You won’t be alone. And you will be remembered. But no one’s giving up. I told you, we’ve still got a chance.” David looked with hope toward the physician. “A bone marrow transplant.”
“Yes,” the physician said. “Provided your son meets the requirements.”
“Requirements?”
9
The start of another nightmare. During Matt’s operation, when the surgeons had explained the unforeseen complications of his tumor, when a decision had to be made within fifteen minutes, there hadn’t been time for the surgeons to discuss the conditions required for
a bone marrow transplant.
There were four.
First, the bone marrow transplant unit wouldn’t put Matthew through the extreme procedure unless there was a reasonable expectation that the treatment would succeed. To determine whether Matthew was a suitable candidate, the physicians had to know …
Second, whether the remnant of the tumor that the surgeon had been compelled to leave against Matt’s spine was as small as the surgeon had described.
Third, whether the tumor was growing on any other parts of Matthew’s body, on his legs and arms, for example, where Ewing’s sarcoma customarily struck.
Fourth, whether his bone marrow was free of any microscopic evidence of tumor spores.
If any or all of these latter three conditions gave cause for pessimism, “all bets are off,” the physician said.
Time was crucial. The sooner the answers were determined (provided they were encouraging), the sooner Matt could be given a bone marrow transplant. That quarter of an inch of tumor that for sure was still in his body, against his spine, would keep growing, and if it got much bigger, it might resist even the massive doses of chemotherapy with which the physicians would attempt to kill it.
Mentally, psychologically, emotionally, and physically, Matt had almost reached the limit of what a human being can suffer and withstand.
10
But the suffering persisted. Within forty-eight hours of Matt’s surgery, he was wheeled from floor to floor, from ward to ward. Each bump made him cringe in pain. Each time he was transferred from his bed to various examination tables, he groaned and sweated. But he never screamed. He never panicked. He had chest X rays, skeletal X rays, CAT scans, magnetic resonance images. Some of these procedures required him to remain immobile, stifling his agony, for an hour.
Then his bone marrow had to be tested. Lying on his good side, fighting the excruciating stress on his bad side, he gripped David’s hand with the force of a wrestler and endured the threaded point of a needle being screwed through each buttock and into each hip bone. The needle probed to the very center of each bone and extracted marrow.
David had no idea what marrow looked like. He imagined it resembled bone. But as the needle was unscrewed from each hip and its contents pushed onto a microscope slide, he saw that bone marrow looked like blood, the thickest, the darkest he’d ever seen.
The tests were completed. The waiting began.
Three days of unimaginably nerve-taut waiting while David, Donna, and Sarie worked every minute to make Matt as comfortable as possible and strained to alleviate his mental alarm.
“Hope, Matthew. Hope.”
11
A sleepless son to a sleepless parent at three o’clock in the morning.
“Is there an afterlife?”
How does a father answer such a question from a son in danger of death?
David sat up from the cot beside Matthew’s bed. He chose his words carefully, and each word tasted like salt. “Afterlife? I promised I’d never lie to you. The truth is, I don’t know. There’s no way to tell. I think there is. I want to believe there is. For sure, a lot of people do believe there is. But unless they get there, they’ll never know.”
“I’m pretty sure there’s something after death,” Matt said.
“You mean like heaven?”
“Sort of. I’m confused.”
“We’re all confused. So many theories. A lot of Eastern religions believe that we live many times and that when we die, we’re reborn in a brand-new body.”
“I’ve heard about that. What’s it called? No, I remember. Reincarnation.”
“I’m surprised you know that.”
“I’ve been reading. I want more time. There’s so much I want to learn about.”
“You’ve learned quite a lot already.”
“Not enough.”
David forced himself to keep talking. “Those Eastern religions believe that eventually, after several lives, we die one last time and go to God.”
“I remember. But …”
“What is it, son?”
“Am I good enough for God?”
That was one question David could answer without a doubt. “You’re the finest person I know, the most honest, the most fair, the most decent. By all means, you’re good enough, more than good enough for God.”
“I love you, Dad.”
“Matt, I can’t express how much I love you.”
12
The waiting finally ended. The results of the tests came back. Three physicians and a nurse surrounded Matthew on his bed, while David, Donna, and Sarie waited anxiously in the background. This was it. The day of judgment. And the physicians had such blank faces it was impossible to predict what they would report.
Hurry! For God’s sake, tell us! David thought. With so many people crowding the room, he felt smothered.
“Matt, your bone marrow’s clean. There’s no sign of Ewing’s sarcoma anywhere else in your body. The remnant of tumor on your spine is so small we can’t see it on X rays. That and the fact that you recovered so strongly from your surgery makes us very much determined to go ahead with the transplant.”
The room became silent. David couldn’t believe he’d heard correctly.
But Matt showed no reaction.
“Matt, don’t you understand? You’ve got a chance!” David kissed Matt’s forehead.
A doctor started grinning. “And there’s something else. The pathology results on the tumor showed it was necrotic.”
“What?”
“Necrotic,” another doctor said. “The tumor was partially dead. That’s why it shrank after the investigational protocol.”
“But then it started growing again,” Sarie said.
“Because it got used to those chemicals. We’ve said all along the tumor’s resistant to treatment. But the fact that some of it was dead proves it can respond. It’s not completely resistant. Before, the tumor was huge, and the chemicals were given in non-life-threatening amounts. But now with such a small segment left inside and with the massive doses of chemicals we’ll be giving you, we’ve got reason to hope we can kill it.”
“Yeah.” Matt started to grin.
13
But his suffering still continued. Another operation was required—to remove a pint of marrow from his hip bones, then to implant a tube in the right upper chamber of his heart (a match to the one that months ago had been inserted in his left chest) for the purpose of making it easier to administer the chemicals.
“In the long run, it’s more painless,” a physician said. “With the tubes in place, we won’t have to keep sticking IVs into your veins.”
David interrupted. “We understood that in January—when you put in the first tube. That first tube did its job well. But why this second tube? Why so many tubes?”
The doctor’s answer seemed vague. “Well, sometimes a bone marrow transplant gets complicated.” The doctor rubbed his neck. “Sometimes we need a few more ways to gain quick access to a patient’s veins.”
With so much good news, David didn’t pause to consider this hint about possible disaster. His son had a chance. That was all he cared about.
14
Bone marrow is the substance within bones that produces blood. If a patient has a resistant disease (leukemia, for example) that attacks the marrow, the treatment consists of extremely high doses of chemotherapy, accompanied by full-body radiation. The effect of this treatment is, in theory, full destruction of the disease within the marrow.
Nonetheless, without healthy marrow to produce healthy blood, the patient will die. So healthy marrow has to be inserted into the body. This procedure is accomplished by, first, finding a donor (usually a brother or a sister) whose marrow is compatible with the patient’s white blood cells. Marrow is then extracted from the donor and introduced into the patient. If everything works as it should, the donated marrow grows within the patient, produces healthy blood, and the patient is cured. Sometimes the patient’s body rejects the marrow, and the
patient is given marrow from yet another compatible donor. If the patient continues to reject donated marrow, there’s no way to save that patient from the lethal effects of the massive chemotherapy. But more often than not, David learned, the treatment works.
The miraculous part of the procedure is that, while the marrow has to be extracted surgically from a donor, it’s introduced into the patient’s body through the simple means of pumping it through an IV tube. Because bone marrow, like a homing pigeon, somehow knows where to go. It enters a vein and flows toward its proper destination, the center of bones, where, marvel that it is, it feels at home and, God willing, multiplies.
A wonder of nature.
In Matthew’s case, his marrow was not diseased, so he needed no other donor than himself. The pint of marrow that had been surgically extracted from him was combined with a chemical preservative, placed in a plastic bag, flattened in a metal tray, and frozen much below zero in a liquid nitrogen container that resembled a conventional freezer. The advantage of being a self-donor, of returning his own marrow to his own body, was that Matt didn’t risk complications due to biological rejection of foreign marrow. What’s more, since his cancer was localized, he didn’t have to undergo full-body radiation as well as the chemotherapy. That was the good part.
But no matter if other-donated or self-donated, the marrow couldn’t enter the body until the blood-destroying treatment was completed.
And that was the bad part. When you receive what a physician calls “humongous” doses of chemotherapy, your blood becomes worthless. It has no platelets to enable it to clot if you’re injured and start to bleed. It has no white blood cells to combat infection. It has no red cells to carry oxygen.
Fireflies: A Father's Classic Tale of Love and Loss Page 7