Chapter 7: The Decision

It did not take. The Chemo did not do its job, so the disease is still there and no one knows for sure exactly why that is. Or what to do. It’s as if the Chemo actually made the Leukemia stronger. The moment we had been waiting for–the day we knew we would toast as the first of many on the road to recovery–was snatched from our grasp. We all thought we had it. We were so sure. Even Rau seemed more optimistic. Instead of planning therapy steps, we’re back at square one all over again–we’re worse than square one. Dad has all the symptoms we thought he had left behind in the CCU–and now he’s got a mystery infection that has baffled doctors and nurses for days. They take him down to the x-ray room, pump him full of three different types of antibiotics, and feed him Tylenol through a tube. But the temperature comes back, along with the rapid pulse, the inability to talk or to move.
One thing is obvious: Conventional means of treatment will not work any longer. Rau is left with one option–he wants to turn him on his back and inject pure chemo into his spinal cord.

“We have to make a decision on what Rau wants to do,” Mom tells us one morning. “It’s highly risky, but Rau feels that it’s worth the chance because he feels it is simply the only route left for Dad to take.”

“How risky is it?” Sheila asks after a long, long moment of silence.
“There’s a chance he might not make it through the procedure. Rau doesn’t like to do it because he says it’s too risky, but he see it as our only choice. He’s left it up to us, but I have to tell him as soon as possible. He wants to do it today.”
“Well, what choice do we have?” Carole is focused on the only thing that really matters–bringing Dad back. “What about a bone marrow transplant?”
“Rau said that a bone marrow transplant, at his age, would do more harm than good.”
“Well, Dad sure wouldn’t want to be sitting like he is right now–I don’t see that we have an alternative.”
“I agree. I’ll go up and tell Rau right now.”

And so it was that the family held its collective breath and took a chance on one last method of treatment. In a way, it was this decision that put us solidly behind Rau. Though he had never had any trouble with us, this decision made us support him completely. Perhaps it was because he was also taking a chance–conducting a risky procedure that could be fatal to a younger, healthier man in a last gasp effort to make headway against the disease. His choice showed us that Rau was willing to try anything to save Dad. He had committed his professional reputation, so we lined up to support him.

The idea behind a spinal tap is to put a strong dose of Chemo right at the source of the problem. With a little luck, it will overpower the Leukemia without completely destroying what was left of Dad’s functioning organs. The hope is that it will attack the “blasted” white cells in the spinal cord directly, going straight to the source to destroy the Leukemia. If it works, and if Dad’s body was strong enough after t he treatment, he would start regenerating healthy white cells–and we’d be on our way toward that long-awaited recovery.

The miracle was that it worked. The tap into the spine-seemed to improve things immediately, and Dad was able to recover and start therapy again. We all waited breathlessly for the word we knew would be good–this time, we just knew that Dad’s body had sent the Leukemia packing. We could see it in the way he began to regain movement on his right side, in his whispers and especially in his smile. He even began feeding himself. As the family slowly began to relax, we threw ourselves into the routine of recovery. Masks and freshly scrubbed hands for everyone in the room. Make sure Dad gets plenty of the custard treat he so looked forward to every night. Move his legs and arms to help him regain his ability to move on his own. That was the best of all–with the start therapy, Dad really began to thrive.

The spinal tap was our savior, so when Rau grew a little bolder and decided to try another–and another–we were completely in support. It was simply the only thing that brought good news back to the room, so we tolerated the horrible nature of the treatment and worked to keep his spirits up and fighting.

It’s amazing what damage bed rest can do to a person. Here was a robust man, thirty pounds over his ideal weight–just two weeks stuck in a bed had turned him into a withered old man. We had to help him begin to get his form back. We noticed the change in the doctors and nurses again–the same kind of change that happened at the CCU when he began his unlikely recovery. They began talking about the future, telling us how what we did today would make it easier for him when he was released.

Did they ever have plans. It was if the entire ward picked up its spirits. The nurses told us that once the Leukemia was in remission, he would be released–but never forgotten. Cancer patients have a permanent lifeline to their resident Oncology ward, for the simple reason that nurses and doctors are always eager to make sure recovering cancer patients stay in remission. For at least the first year, he would be due back at the hospital for a week of observation and treatment. And though the talk had turned to remission and release dates, we would not have Dad home with us for quite a while. The disease has done its damage–and if he does, indeed, make it out of the Oncology ward, he’ll be headed straight for a therapy home. At 63, Dad will be learning everything over again: how to tie his shoes, to eat with knife and fork, even to walk. Perhaps one day he would be able to drive a car, but that was probably hoping for too much. For Dad, fighting something as nasty as Leukemia was not a weekly thing, or even a yearly program. The fight was on for life. That was fine with us. We thought helping Dad through a therapy home would be easy, considering what we had already been through at the hospital. We were ready for anything.

—

In helping Dad fight for his life, we have learned a thing or two about ourselves. We learned that the family would fight for each other, sacrifice for each other if that’s what had to be done. We discovered that as grown ups we actually began to like each other. Most of all, though Dad had always stayed in the background behind Mom, we found out how much we relied on his silent strength and guidance. So quiet was his influence that it had to be taken away before we realized how much we needed the support.

Now we pray that the silent strength we have always relied on will pull him through this final stretch run to recovery–the impossible dream is alive and well, if barely. That faint pulse of a chance feels great. The talk is of the possibility of Christmas with Dad out of the hospital and on his way to a nursing home for therapy.
It is the only Christmas present the family wants.

Rau, of course, is skeptical. His focus is on the thermometer that never leaves Dad’s side, on the signs of possible break downs, heart attacks and strokes. Talking and movement is fine, but what Rau is looking for–what signals to Rau that we really are on our way–is one tiny, healthy white blood cell. So far he hasn’t seen one. And until he does, the illusion of Dad’s improvement will eventually fade into the reality of defeat..

“Your father is old, and though he’s healthy for his age, his body has taken a beating over the past two weeks,” Rau warned us. “Anything could happen–we’re not out of the woods yet.”

We don’t listen. We never listen to Rau when he warns us, because he just doesn’t understand the old man’s fighting spirit. Here is a man who, as a child, had every bone broken in an automobile accident–a man who had repeatedly demonstrated his ability to withstand anything and come out on top. Rau doesn’t understand that we’ve got the advantage now–all we needed was the one chance the spinal taps have provided to crush that nasty disease and win the day.

It is we who do not understand. We don’t understand about the infection that never really went away. We don’t understand the fact that his temperature, held at bay by massive doses of antibiotics, would inevitably come back, just as long as the infection was still there. It had always been there, just hidden–the reason for the temperature, the stroke, the inability to talk. There was an infection that the doctors and nurses all thought was gone, only to be surprised and shaken when it came back with a vengeance.

We do not understand how it could happen this way.
There is no more talk of therapy homes or release dates now–just debates on finding a way to rid his fading body of the infection that’s killing him. Using traditional methods would undoubtedly do more harm than good–he’s just not strong enough to go through all the pricks, pokes and tests. So all they can do is pump more medicine into his veins, and hope that does the trick while the chemo does its job. If it is controlled, we have something to work on and build on toward recovery.

Rau has decided to administer another spinal tap.
The next thing we know he’s decided to do another one. With each one comes a transfusion of blood–and with the blood comes platelets and red cells, all completely clean. The red cells are replacing what the Chemo destroys, and the platelets keep bleeding down to an almost non-existent level. Things are turning serious again, and this time all we can do is rally around him and hope for the best.

For me, I have taken to looking out the window that dominates the left side of Dad’s room. Every night, I pray that the view I see is one that he will soon be able to appreciate, along with the decorations and expressions of faith and good wishes that have gathered throughout the room. Along the counter that serves as a desk for nurses, Mom has carefully arranged family photos, trinkets, memorabilia. There’s even a stuffed toy that looks the image of the family dog. On the wall directly opposite the bed, we’ve stuck the cards and notes from well-wishers, hoping that he can see the terms of endearment and that it will inspire him to try a little harder. I have plastered the remaining walls with newspaper accounts of the Liverpool Football Club. It’s part of the routine: Every night, I put a new one up on the wall after I read the story of soccer glory aloud to him. I come in when he’s sleeping and say the rosary until he awakens. Then I read the story and help him with his therapy. Usually, halfway through he loses interest and gets a look as though he is persevering through it for my sake.

It’s a look I’ve seen a million times before. We hold hands as I move his arm back and forth, back and forth, trying to build a little muscle in his arm with motion, and in his spirit with words of encouragement. This we do off and on until he dozes off again and I go out for a smoke.

Tonight, however, is different. As I’m reading the paper, Dad gets restless, and I realize that he’s not enjoying listening to this nearly as much as I’m enjoying reading it. As I put away the newspaper, I ask him if he’s tired, and if he wants to sleep. He nods his head emphatically–for a while now, head nods and hand squeezes are the only form of communication. As I turn out the light, I realize that perhaps he doesn’t want to do anything–just relax. So I sit in the dark, and wonder–what’s going through his mind? How does he feel? I look at him and ask him. “Dad, you and I are going to whip this, right?” He turns his head toward me ever so slightly and whispers his reply.

“I hope you appreciate these moments with your old fella.”

 

Chapter 8