Wednesday, September 4, 2013

Reflections on a Year with Cancer

You know those stories that people tell where somebody is described as “going weak in the knees,” or when there’s news that people have to “take sitting down?” Those had always seemed like exaggerated figures of speech to me. I mean, who really goes all noodle-legged in the face of bad news, after all? Certainly not I. 

I have never needed one of those Victorian fainting couches to catch my swooning form. I have no smelling salts in my medicine cabinet. And if you see tears welling up in my eyes, you can pretty rightly assume it’s from hay fever.  

My seemingly stoical DNA, you see, derives from a rather chilly blend of tight-lipped Englishmen, hard-headed Germans, windblown Scots, and the kind of  rugged, sunshine-is-for-sissies northern Europeans who chiseled out a living from the frozen fjords. Stout hearts and dry eyes—that’s us. As one author put it, “If I were commissioned to design the official crest for the descendents of emotionally muzzled Vikings everywhere, I would begin by looking up the Latin phrase for ‘No thanks, I’m fine.’” Exactly.

But on the evening of August 20, 2012, when my husband carried home the heavy news that our ten-year-old son, Jonah, had been diagnosed with leukemia, I crumpled onto the bottom step of our family’s stairway and sobbed.
All through that evening and for many of the days that followed I learned what it was to go weak in the knees in the most literal sense—no metaphor about it. Each time a doctor would bring new information, I had to take it sitting down. Every time the phone demanded to be answered, my chest felt squeezed in a vice that gripped tighter with every ring.
My child may die. My precious firstborn son may be taken from us. Everywhere I went, I seemed to feel an unbearable weight pressing down on my shoulders—a weight that I could not carry. We were given hefty stacks of informational books and brochures, but I could not open them. I could not allow my eyes to rest on phrases like “mortality rate” and “likelihood of relapse.” These were words too heavy for me to lift from the page.
My child may die. It continues to be a weight that I cannot carry. But I have learned that it is also a weight that I need not carry. That I do not carry. That is not mine to carry at all.

Words Made Alive

Two years ago, our church started a Sunday School class to teach the Heidelberg Catechism to the children. Week after week my kids would recite from memory the answer to that week’s question and would review the answers to the questions that preceded it. This means that week after week, the question would come back: “What is your only comfort in life and in death?”

Then a chorus of sing-song treble voices would reply:
“That I am not my own, but belong— body and soul, in life and in death—to my faithful Savior, Jesus Christ. He has fully paid for all my sins with his precious blood, and has set me free from the tyranny of the devil. He also watches over me in such a way that not a hair can fall from my head without the will of my Father in heaven; in fact, all things must work together for my salvation. Because I belong to him, Christ, by his Holy Spirit, assures me of eternal life and makes me wholeheartedly willing and ready from now on to live for him.”

In the frightening days that followed Jonah’s diagnosis, those familiar lines that had rattled around in my own head for so many years and that had echoed around the walls of the Sunday school classroom for so many weeks sputtered to life. That dusty paragraph began lighting up like the county fair at nightfall. I had seen those antique words before and believed them, but never quite so fully. Never quite so desperately. Never in such bright, neon colors.

Each night as I pleaded with God for Jonah, I pulled those words, like a lifeline, into my prayers: “Jonah is not his own. He is not my own. God Almighty, he is your child. And nothing can happen to a hair on his head or to a blood cell in his body apart from Your will.” And even in the praying of those words, that suffocating, crippling weight began to lift. Jonah belongs to his faithful savior. Body and soul. In life. And, yes, even in death.

Psalms, too, and hymns that I had sung for years and committed to memory—sometimes without much thought—were now surfacing in my head and heart and proving to be both priceless and indispensable. All those pictures of God as a refuge, as a fortress, as a rock, as a tower, as a physician, as a lover, as a friend now meant something far more concrete. Here was comfort beyond imagining. Here was peace beyond understanding.

It was as if I, when I was feeling particularly wealthy, had stuffed a large roll of high-denomination dollar bills into my pockets without thinking and then forgot about them. But then, when hard times fell and I thought I was going broke, I put a hand into my pocket and discovered that I was still rich after all—and that I not only had all that I needed, but that what I did have had appreciated in value.

Here were these words, that had seemed at times—especially when I was young and tired of memorizing—to be so much gravel, tossed into my empty little head and tumbled around over the years. But now, here they were again, pouring back out all shining and precious and polished smooth—not gravel at all but rubies.

“God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains fall into the heart of the sea” (Psalm 46:1-2). I remembered those lines as a little ditty set to a tune for teenage voices and a solo guitar. But thanks to that melody, simple as it was, those words were epoxy-glued into the back pages of my mind such that I never lost them. But I had also never really deeply considered them.

It’s not that I had ever doubted the truth of those words, but I believed them, more or less, in the abstract. They existed somewhere in the clouds. Now, however, in the middle of my trouble, with my comfortable little world falling into the sea, those true words came down out of the ether and touched the very solid ground beneath my feet. God is a refuge—from fear and death. He is strength—when my knees buckle and I cannot stand. He is a very present help—a right-here-right-now help; a help mediated through comforting words and free babysitting and hot meals and carpool rides and peaceful sleep. He is a help in trouble—in cancer and confusion and grief. Therefore we will not fear. We will not be afraid of this. Not even if the world crumbles around us and cancer does its worst.

Mongering Fear

The more I’ve read about cancer, the more it seems that health publications (both mainstream and alternative) want everyone to be very afraid of cancer. Scroll through a hundred health blogs, and flip through a teetering stack of health magazines, and it seems that this is the endlessly repeated headline: “5 Foods that Fight Cancer.” “12 Secret Weapons Against Cancer.” “17 Strategies for Staying Cancer-Free.” Without the fear of cancer, I imagine that readership would plummet.

Believe me, I fully understand the desire to learn more about what causes cancer and what cures it. I had a cancer scare of my own not long ago, and I (like most people I know) have had friends and relatives who have died of various forms of cancer. It's a disease that touches the lives of just about everybody, so it's no surprise that we fear it. But it's also no surprise that there are people out there who are eager to prey on people's fears. 

I once read a post, shared by a well-meaning Facebook friend, that said, "Finally! Johns Hopkins Medical School reveals the truth about cancer!" The link offered a numbered list of generic tips (Stop eating sugar!) but also endorsed a number of health products—by brand name—that we should buy. This seemed more than a little fishy, so I checked the sources. It turned out to be a hoax; Johns Hopkins had shared no such thing and had devoted a whole page of its web site to dispelling the misinformation and outright lies. But by that time, the link had already been shared on Facebook upwards of 20,000 times.

The reason I think we are so eager to read all those cancer articles and to believe sketchy posts like the one I mentioned is that it can make us feel like we have the tools to get back in control of our lives. Cancer is scarier than most diseases because it is still, in spite of all that up-to-date information (and misinformation), shrouded in mystery. 

Why does one of our children get leukemia while the rest remain perfectly healthy? Why did one of my mom's siblings get cancer while none of the other 8 have? How is possible that a man who smoked his entire life never gets lung cancer, while a woman who never even touched a cigarette dies of the disease? The answer, from what I can tell, is: We don't know. Cancer is a bogy that seems to lurk around every corner, and we feel helpless against it.

A sense of helplessness, however, can give us a glimpse of something like Truth. And that kind of Truth can be terrifying. Our days are numbered, and not—contrary to to our hopes and wishes—by us. So it’s easy, even for Christians like us who should know better, to want to panic in the face of our helplessness and to grasp at some semblance of control. We could easily spend countless hours trying to keep up with the latest health advice—even when we know that latest health advice keeps changing on us again and again and again.

First we're told to hide from the sun to avoid cancer. And then we find out that our sun boycott is causing Vitamin D deficiency, which can cause cancer. So we start chugging fish oil for the Vitamin D. But then we are told that the fish oil can be tainted with mercury, which is linked to cancer. We work hard to provide our families with good nutrition that will fight cancer. But then it turns out that kids who have better nutrition are also more likely to be tall, which puts them at greater risk for cancer. And then when we finally do get cancer, we fight it with radiation and toxic drugs that can cause cancer. Cancer, like Shakespeare’s fool Touchstone, chases us around the world-stage, shouting, “I will kill thee a hundred and fifty ways!” 

I don't think it’s simply a fool's errand to try to steer clear of this threat to our health. Especially not after all that we've been through with Jonah. But at the same time, I think we have to be careful. There does come a point when concern for health becomes obsession with health—when prudence crosses the line into panic and we lose sight of God's promises and providence. 

Whence Comes My Help?

Sitting by Jonah’s sickbed for countless hours has provided me with plenty of time to meditate on our own helplessness—on our own lack of control over so many of the details of our lives. And what’s odd is that our helplessness, while it might seem frightening to some, has actually provided a very real sense comfort because we know that “our help comes from the Lord who made heaven and earth.” 

Who is more helpless than a small child? And yet who in the world is more carefree? That is because a young child is not burdened with a sense of self-sufficiency or a compulsion to pull himself up by his own bootie straps. He is free to rest and play because he knows that somebody else takes care of his needs.

If our lives are ultimately in our own hands, however, then we can never rest, never turn our backs, never loosen our white-knuckle grip for a moment. But if our lives are ultimately in God’s hands, then we are free, like that child, to keep our own hands open—both to give and to receive a thousand other joys. 

As we have dealt with Jonah’s cancer, our helplessness has deepened our dependence on God. And dependence on God, paradoxically, has brought independence—a sweet freedom from all the other cares and worries that can so easily take over.

Even as a Christian, it’s easy to be swayed by the messages of every health article under the sun. But as I’ve read the Bible this year, I’ve noticed that there are an astonishing number of promises from God (you know—the One who made our bodies in the first place?) that have to do with health and strength and long life. And yet I haven’t come across a single one of those promises that hinges on nutrition or exercise or any of the usual concerns. 
I still believe that those concerns are means that God routinely uses to sustain our lives. But if I were trying to compile a list of “Biblical Tips for Better Health,” I think it would have a whole lot less to do with consuming organic produce and joining the gym, and a whole lot more to do with fearing God, honoring parents, befriending Lady Wisdom, and seeking first the Kingdom of God and His righteousness.

Not a hair can fall from our heads—or a cancer cell form in our bodies—without the will of our Father in heaven. He knows what we need before we ask, which means I don't have to keep tying myself into awkward knots in attempt to keep up with all the latest cancer-dodging advice. Resting in God's care allows me to take a step back from the fears of the moment and to gain some perspective on this salutary game of Twister—and to laugh a little. And a merry heart, after all, "doeth good like a medicine."  

Ultimately, our lives are not in our hands. And that truth, instead of scaring us, should allow us to  loosen our kung-fu death grip on health, to step away from all those hot-off-the-presses articles about the latest cancer scare, and to quit worrying. Seriously. Quit. Worrying is bad for our health. And which of us by worrying can add a single day to his life? Rather, “Fear the Lord and depart from evil. It will be health to your flesh and marrow to your bones” (Proverbs 3:7b-8). 

That right there is a ruby to keep in your pocket.

The Belly of the Whale

Just last week my husband took all the kids to a local nursing home to bring a little joy to the lonely and afflicted. And the next day Asaph, who is five years old, said to me, “Mom? You know that place where people go to live until they die? I saw an old lady there who was sitting in a wheelchair. And her teeth were out, so she pushed them back into her mouth. I said hi to her, but she didn’t hear me.”

It’s shocking, isn’t it, son? It’s shocking that we crumble until our legs cannot hold us. Until our teeth fall out of our mouths. Until our ears grow numb to the voices of children yelling “Hi!” six inches from our heads. But what’s more shocking is that we forget this about ourselves. Here in this university town of ours, where the beautiful and the invincible spill out of every coffee shop and swarm the halls of the shopping malls, we find that the fresh supply of youth never dries up. We spend our days in the house of feasting, toasting each other’s health, and checking each other’s sexy curves. Meanwhile, life’s epilogue is lived out behind closed doors, along sterile hallways under fluorescent lights, so that the rest of us can forget the final pages of our story.

But not my children. My own Jonah has slept within the black innards of the whale. He has looked death straight in the mouth and smelled its foul breath. My own little blue-eyed five-year-old has navigated through those urine-scented hallways in the house of mourning and learned some wisdom. He has seen our latter end. 

The truth is that we are all in that place where we will live until we die. But while I will try to push that final day back as long as I can, I never want to spend so much time simply staying alive that I forget to live. As one author friend put it, “Life is meant to be spent.” And not just, I might add, on ourselves. 

Long life can be a great blessing, but what good is a long shelf life if our contents are never used up before we reach our expiration date? Better to be a cheap plastic jug of grape juice cocktail—or a boring old cup of cold water, for that matter—that is poured out to quench someone's thirst, than to be a bottle of the finest Ch√Ęteauneuf-du-Pape that is kept safely corked on a shelf for decades until its contents turn to vinegar. 

My grandfather (who died of cancer) did not live as long as many of his peers, but he also lived more within those years than many of his peers. He learned to speak English, served in a war, raised nine children, was faithful to his wife, ran a dairy farm, felled trees (as well as a few of his fingers), worked in the church, owned a retirement home, excelled at bowling, and poured love on his dozens of grandchildren. 

When I was about Asaph’s age, my grandfather used to do a trick in which he brushed his teeth and whistled at the same time. I thought it was hilarious—him holding his dentures and toothbrush in his mangled fingers, while a merry tune played on his wrinkled lips. 

When my own teeth fall out, I hope it will make my little grandchildren laugh. And I hope to be laughing with them. 

Manna in the Wilderness

In the early days of Jonah's treatment, I parked in the Children's hospital garage next to an SUV that had the words "CHILDHOOD CANCER SUCKS!" scrawled in gold paint across the back windows. And I don't disagree. 

I have watched my son vomiting for hours, writhing in pain while his hair falls out and his wide eyes plead for a relief that is far from coming. But for the record, you need to know that cancer is not the worst thing that can happen to you. In fact, we have gained so much from this experience already that we may one day look back and see that cancer was the actually one of the best things that ever happened to us. And even in the hardest stages of his treatment, Jonah has discovered that a life-threatening illness is not without its perks.

Just last weekend, Jonah was invited to throw the first pitch at a Spokane Indians baseball game, escorted onto the field by Super Bowl MVP Mark Rypien. Jonah has been in the dugout and on the field to shake hands with Seattle Mariners. He’s had a movie star come to visit him. He has heaps of books and toys and crafts and cards and even an iPad thanks to the kindness of those who heard of his plight. And now, through the Make-A-Wish foundation, he’s in the process of planning a dream vacation to Hawaii—something we could never afford to do with him otherwise. So much love, joy, peace, and just plain fun have come his way on account of his cancer that one of our other boys once said, “Aw, man! I wish I had cancer.” 

The Children’s Hospital has also done such a great job of creating a welcoming environment for these sick kids that all our boys clamor for the chance to go along with Jonah for his appointments. Jonah himself sometimes laments that his days of staying overnight at the hospital are over. He loves all the nurses and the one-on-one attention from parents and grandparents. His memories of cancer have been so well seasoned with blessings that he has more than once told us he wishes he could start his treatment all over again. And he is no masochist. This was simply the best-worst year of his life. 

Power Made Perfect in Weakness

This has, without question, been the most difficult year of our lives. My son has life-threatening disease. But do I wish this had never happened? Do I wish I could erase the last twelve months and start them fresh and clean and cancer-free? I hesitate. But strange as it sounds, I don't.

I have had people tell me that they just don’t think they could do what we’ve done; that they couldn’t handle facing childhood cancer; that it would simply be too hard. And I suppose the expected reply would be, "Oh, no, of course you could! You're a strong person. You could handle it if you had to." Well, maybe it's that stiff-upper-lip DNA of mine, but I'm not always a good cheerleader. In fact, what I generally say is, “Yeah you’re right. It is too hard. You couldn’t do it.” 

The reason I say that, however, is that I can’t do it either. I can’t handle it. Not me. Not our family carrying all this trouble on our own strength. We didn’t do it. We didn’t handle it—at least not in some kind of stoical, self-sufficient, inner-strength, “No thanks, I’m fine” kind of way. 

Rather, we were helpless. We were weak in the knees. We had to take it sitting down. But God was our strength. We were neck-deep in trouble. But He is a very present help in trouble. We were faced with the fear of death. But our comfort is that we belong, even in death, to our faithful savior, Jesus Christ. This year was God’s work. This year was also—through all that our friends and family and churches did to carry our burden—your work. And having seen with my own eyes the unfailing mercy and goodness of God, I am no longer afraid.

It’s been one year since Jonah's diagnosis—when the battle for his life began—and we have seen our prayers answered again and again. After a summer full of baseball and swimming and bike riding and lacrosse, he started school with his class last week, and he visits the hospital only once a month. His hair, his color, and his laughter are back. But the fight for his life is not over; we are facing the Last Enemy, even now. My child may die. Even after a year, I still can hardly bring myself to say those words aloud, and my throat aches if I try. 

This has been a year of testing, but this has also been a year in which all those abstract truths that we have always believed truly put on flesh. God's power is made perfect in our weakness. God is our refuge and strength. This is why my knees are steady. This is why that terrible weight is gone.

You have dealt well with your servant,
    O Lord, according to your word.
Teach me good judgment and knowledge,
    for I believe in your commandments.
 Before I was afflicted I went astray,
    but now I keep your word.
You are good and do good;
    teach me your statutes. (Ps 119:65-68)

Thursday, May 16, 2013

Spinal Tap

It's Tuesday morning when I first sit down to write this post, and the sunshine is blazing through the massive eastern windows of the waiting room in the children's hospital oncology clinic. Brilliant light glares through the ten-foot-high wall of glass with an intensity that seems overzealous for so early in the season. It flashes off of glossy magazine covers and sparkles cheerily through the saline fluid in Jonah's IV bollus. It warms the back of my shoulders to the point of discomfort and renders the feeble, electronic glow of my laptop screen almost useless. 

It's hard to believe that only one week earlier, I was snapping photos of snow falling on my flower garden. This sudden explosion of summery heat has set me—and my spring tulips—into a kind of squinty-eyed shock. Pale, winterized north Idaho inhabitants like me generally require a more gradual change of season. I'm used to waiting through drizzly May days for the occasional break in the clouds when a patch of promising sunlight will rest on the rug just long enough to lend it a hint of lingering warmth. I am used to keeping the winter coats ready on their hooks, just in case, until sometime in July. I am used to sending my kids to their first morning swimming lessons of the summer when the outdoor thermometer still reads 48°. But this? I am not used to this. This is true water park weather, and it's only the first week of May. 

Jonah is sprawled out horizontally across one of the small armless waiting room couches. It's safe to say that he is basking, soaking his skinny limbs in the warm tide of sunshine that washes over him. All he needs is a beach towel and a pair of trunks. And yet, here he is, several floors above the street, on a hill overlooking Spokane, waiting not for a for trip down the waterslide into the pool but for a trip down the hallway into a windowless procedure room lit by fluorescent tubes, for an early-morning spinal tap and a dose of toxic drugs. 

Hardly a summer holiday. 

I glance up from my over-bright screen and make brief eye contact with another mom who is sipping hospital coffee from a white styrofoam cup. The sunlight sets curlicues of steam aglow between her face and mine. I very nearly say hello, but she quickly turns her puffy, sleep-starved eyes away toward the window. I follow her gaze to where the tops of the pine trees are lost in the brightness of the sunrise.

Next to her, a dark-haired boy, about Jonah's age, is also waiting, slouched low in his chair. His eyes are closed, and his crossed arms rest across his belly. They are by far the hairiest arms I have ever seen on a child. I try not to stare, wondering if this kid is getting the same chemo as my son. Jonah's own hair held out against the drugs for a long time—much longer than for most cancer patients—but now he hardly even has hair on his head, let alone on his extremities. Even his eyebrows and eyelashes have thinned.

I turn my attention toward him. His feet are propped on a lime-green ottoman, and he is reading—or pretending to read—his paperback. "You want anything?" I ask. Then I remember. "Oh, nevermind. I forgot you can't have anything until after your LP." 

He looks at me from over the top of his book and slowly shakes his head. "Nope." He punctuates the word with a soft pop of his lips on the 'P'. The other mom glances back toward me for just an instant, and then again back to the window, half-closing her eyes against the brightness.

I wonder about trying to meet these people, about asking this other boy his story, maybe make a new hospital friend for Jonah. But asking those sooo-what-brings-you-here conversation starters can be painful and distressing when they are asked in a children's oncology ward. ("Oh, brain radiation. And you?") Sometimes small talk seems, well, too small in the shadow of the enormous, cancerous elephant in the room. So I decide to keep quiet and return to my typing. Besides, I think to myself, it's early, and we are all so sleepy and ridiculously warm in here anyway. 

• • • • • •

The day before, Jonah and I had driven to Riverfront Park to eat a late lunch following a checkup, and we came unprepared for the weather. The afternoon heat slowly baked into Jonah's black jeans and long-sleeved T-shirt, while the May sunlight threatened to burn his bald head. My dark hair absorbed the heat like a cast iron skillet. We moved to some semi-shade and ate our sandwiches on a dusty, metal-grid picnic table. Nearby, a half-dozen flip-flopped moms with squealing children splashed—some of them fully dressed—in the park fountain. No men among them, and not a wedding ring to be seen reflecting the sparkle of afternoon light. At least two of the moms displayed tattooed cleavage above the squeeze of their strapless sundresses as they bent low to lift their dripping toddlers. Every mom is wearing shades. This, I noted, appears to be the year of the gold-rimmed aviator sunglasses. 

Jonah eyes, fortunately, were transfixed by the colorful rise and fall of merry-go-round horses on their gilded poles. He was listening intently to the carousel music and asked if the tunes were played live on a real organ—an instrument he hopes to learn to someday. Maybe he was considering future summer jobs—organ gigs at carousels and baseball parks.

"No, I don't think so. Just a recording. But I bet there used to be an organ in there at one time," I said. 

"Oh," he said, disappointed. He slowly dragged a limp french fry back and forth through a puddle of ketchup and then set it back down. "Ugh. I am roasting."

This is the kind of unseasonable heat that makes politicians climb onto their climate-change soapboxes and panicked consumers trade in their Hummers for pocket-sized electric cars. It is also the kind of weather that sends flabby humans of northern European descent out in herds to overwhelm the city streets and public parks with vast displays of blindingly pale flesh. Human dignity, it seems, cannot compete with the promise of a spring sunburn. Too-tight shorts and too-short tube tops parade unabashedly across the lush lawns while well-fed seagulls hop and flap eagerly after them, hoping a few bits of that muffin-top whiteness will drop in Wonder Bread crumbs to the ground. 

• • • • • •

The cool air of early morning is sweet when we walk to the car the next day, but as we pull onto the interstate to return to the hospital for Jonah's spinal tap, the sun is already poised to dominate the day—not so much as a hint of a cloud to interrupt the faintly blue expanse above us. Watching the drivers in the east-bound lane flipping down their visors and shielding their eyes with their hands against the rising glare, I am glad to be driving west.

Jonah tilts his seat back and snoozes on the way. I enjoy his company, but when he sleeps, I savor the silence—or rather, the steady hum and whoosh of the highway—instead. The rare luxury of uninterrupted thought makes me feel all glowingly poetic inside. I have a habit of trying to compose witty similes or apt metaphors while I'm driving in a quiet car. I imagine catchy first lines for short stories that I will never attempt to write. Often, I use the time to pray. This morning, however, I am thinking of styles of sunglasses, and how they seem to forge the way for styles of regular glasses, and how they serve better than carbon-14 for calculating the dates of old photos. (Ah, yes, 1982. The year of the saucer-sized frames with the graduated pink-tinted lenses.) This is deep stuff. 

The brilliance of my thoughts is interrupted by the sudden dimness of the hospital parking garage. Jonah sits up and looks around. He sighs, and his shoulders slump when he remembers where he is. 

• • • • • •

At last, the nurse steps into the waiting room and says Jonah's name. He sighs audibly again. He does have his favorite hospital activities that he looks forward to—especially when the music therapist is there. But on spinal tap days, he dreads the hospital because he knows how he will feel afterward. "You ready, buddy?" the nurse asks in that too-chipper, slightly condescending sing-song tone that he hates. He shakes his head firmly but stands up anyway, shoving his book into his backpack with unnecessary force. "O.K! Let's go!" she says, flashing coffee-stained teeth between freshly glossed lips. She takes brisk steps, but Jonah shuffles, and she has to turn and wait for him to catch up. The IV pole squeaks and rattles along the linoleum tiles, and I hold the IV line up to keep it from getting tangled in the wheels or caught underfoot.

In the procedure room, several nurses are waiting, and one of them attaches Jonah to several monitors—heart rate, blood pressure, oxygen levels. Then the anesthesiologist arrives to ask the usual list of questions. He's young and blond and wearing jeans and a massive silver ring and a silver bracelet below his rolled-up shirt sleeves. Very hip. He cracks a few jokes, makes small talk about sports, and manages to get a smile or two out of Jonah while filling syringes with milky-white propofol. "Milk of amnesia" he calls it.

At last the doctor arrives, all five-foot-aught of her, with her mass of brown corkscrew curls. Probably the world's cutest oncologist. The oxygen starts, then the proposal, and then Jonah's eyelids flutter closed. He's out. The doctor preps his back with iodine, and moments later Jonah's spinal fluid begins to drip slowly into a clear vial. A nurse walks quickly by us to prepare for the next patient's procedure, and her elbow knocks a vial of propofol onto the floor. It shatters, leaving a spray of glass shards and white liquid on the floor. The nurse gasps with dismay. "Oh, no need to cry over spilled propofol," I say dryly, and the whole room of doctors and nurses erupts into laughter. 

We're all still smiling as the oncologist injects a syringe full of acid-green methotrexate into Jonah's spinal fluid. And with that, the procedure's done. All that's left is to wait for him to sleep off the anesthesia. For most kids, this takes a matter of minutes. For Jonah, it can take hours for him to come around, and more often than not, he wakes up sick. This time, they wheel him into an infusion room where they let him recover by himself in a more comfortable bed. I turn down the lights and sit with him in the darkness for a few minutes, just to make sure he's resting quietly. Someone down the hall is carrying on a one-sided conversation in hurried Spanish. 

When I open the door to the hallway, my eyes take a moment to adjust. I return to the playroom to chat with the music therapist who has taught Jonah to play a few simple chords on the ukulele during previous visits. The room is hot and summer-bright. As she asks how Jonah's doing, I see the same mother and son from the waiting walk past the doorway and down the hall. 

A little girl walks in and immediately sits down to play with a large plastic dollhouse. Her mother has buzzed her own salt-and-pepper hair close to the scalp in order to, I assume, show her solidarity with her balding child. I've seen a few other parents who have done the same. Above her head is a computer printout on the wall depicting the complete pantheon of Disney princesses with egg-bald heads. Snow White on chemo. Sweet, I guess. 

When Jonah finally wakes up, it's well past noon, and he is woozy and nauseated, but I manage to help him to sit up and drink a sip of orange soda—the only thing that sounds palatable to him—before we head out the clinic doors. He carries a pink emesis bucket with him, just in case. Minutes later, we are back on the highway, driving home through miles and miles of velvety-green hills under a brilliant blue, cloudless sky. I am wearing last year's sunglasses. Soon we will be home. And Jonah is already talking of playing baseball.

Thursday, February 28, 2013

Update on Jonah, 2/28/13

Jonah on our walk this morning, with a view of downtown Spokane. 

The last couple of months have been, on the whole, a period of rest and restoration for Jonah. His most recent treatments have not hit him quite as hard as many others have in the past. Delayed Intensification, his current eight-week phase of treatment, began three weeks ago, and we fully expected that he would need to live in Spokane during most of that time. His body, however, tolerated the chemo well enough that he was able to go home in between his treatments. We are very grateful for that unexpected time together away from the hospital. 

Tuesday night was the first one we have had to spend in Spokane during this phase, and, ironically, it was the first Tuesday of this phase of treatment that Jonah did not receive chemo—but also the worst night of suffering he has endured in months. This week is supposed to be a brief respite from the drugs before the doctors administer a series of very powerful (and toxic) drugs next week. This "week off," however, has turned out to be the most difficult week of Delayed Intensification that he's had yet.

Jonah had suffered through a few days of digestive troubles and abdominal pain due, his doctor believes, to overgrowth of yeast in his system, and she wants him to stay in town to make sure it clears up sufficiently. If his counts are high enough, and his gut is doing better, Jonah may be able to go home for the weekend. But in the meantime, he has been dealing with some new trouble—sudden hair loss and severe withdrawal pains from going off of a potent steroid he was taking last week. Not only was Jonah's hair coming off in handfuls on his pillow—a distressing (and itchy) experience—but Jonah's legs were in such pain that he was unable to sleep most of the night Tuesday night, and yesterday he was unable to rest comfortably throughout most of the day. Today, however, the hair loss has slowed down just a bit, the pain has lessened dramatically, and Jonah was downstairs making pancakes before I was even out of bed and wanted to go out for a walk through the neighborhood right after breakfast. 

While we are grateful for a better day today, we are also anticipating a rough time for Jonah in the two weeks that lie immediately ahead. One of the drugs he will be receiving was, in the past, responsible for his very worst bouts of nausea, and he will also be given another truly nasty drug that can result in longer-lasting (and more serious) side effects. Some of these side effects may not appear until years later, which makes the prospect even more daunting. None of us, as you can imagine, are looking forward to these treatments, but we are grateful to know that we are being held up by all of your love, help, and prayers. And we have not forgotten that we pray to a God who, Himself, knows what it is to suffer. 

As we anticipate a difficult few weeks ahead of us, we'd very much appreciate your prayers for our entire family—for Jayson and me as we try to give all of our children, including Jonah, the love and attention they need; for our other boys as they live with the disruption created by our separated family; for my mother-in-law as she takes care of the house and kids while Jayson and I are away; and, of course, for Jonah. Pray that his courage, his faith, his patience, and his body will remain strong. And, as always, please pray that these difficult treatments would result in a long, healthy, and fruitful life for him. Our hope is that the present trials will result in deeper wisdom and grace that will remain with him, and with all of us, for many, many years to come.

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