Friday, June 27, 2014

Jonah's Wish Trip to Oahu

After nearly two years of battling leukemia, Jonah was granted his wish to swim with dolphins in Hawaii. Through the Make-A-Wish Foundation, the whole family flew to Oahu and stayed for six days, in a beautiful suite overlooking the Pacific (complete with wild sea turtles!), at the Sheraton Waikiki.


During Jonah's trip, we visited Pearl Harbor, met Kaleo the dolphin at Sea Life Park, enjoyed local food and entertainment at a luau, tried surfing for the first time, went snorkeling, swam, swam, swam, built sand castles, soaked up the tropical sunshine, toured the Dole Pineapple Plantation, checked out the food trucks and shave ice on the North Shore, spotted wild dolphins during a sailing excursion on a catamaran, enjoyed beautiful scenery–including daily rainbows, saw some old friends, and met several other Make-A-Wish families. We were treated like royalty, and will carry happy memories from this trip for the rest of our lives. THANK YOU, MAKE-A-WISH, for giving Jonah the vacation of a lifetime!


Here's a video slideshow of our trip. Or, if you prefer, click here for an online gallery where you can see the photos individually.


Jonah's Make-A-Wish Trip to Hawaii from Hannah G on Vimeo.

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.

Monday, December 31, 2012

Many, Many, Many Thanks

Now that this year has drawn to a close, I realize that I don't really want to write the typical end-of-year letter summarizing all the various activities and interests of each member of our family. I would almost have to write two letters—one describing the cheery pre-cancer first half of our year and one describing the crazier post-cancer second half of 2012. But if you've been reading this blog, you already know most of what I would tell you, and you certainly know that Jonah's battle with leukemia has been the headline story that has nearly eclipsed everything else. In the midst of that struggle, however, we have seen more clearly that the goodness of God extends to even the smallest details of our lives.

A couple of months ago, for example, I asked our friends and family to pray for a mild winter this year because of all the driving we would be doing between here and Spokane. It seemed like a big request, and it's the kind of prayer that, I think, many of us fully expect God to ignore. But three days later I laid open the front page of the local newspaper to discover this headline: "Crews anticipate mild winter." "Mild winter"—that's the very phrase I had used. Well, I thought, that was a quick answer. Then, a few days before Christmas, as Jayson and Jonah made their way home from the hospital along dry roads and between muddy fields, and imagining a wet, green Christmas, they prayed for snow. The next evening, Jayson opened the curtains, noticing that it was unusually light outside, and started to laugh. Lo and behold, snow was falling in fat, graceful, grace-full clusters of flakes, perfect for fort building and snowmen.

Was all this sent for us, just because we asked? Is it arrogant to think so? It's not unusual for snow to fall this time of year, after all. Mild winters come and go, certainly. And yet "Elijah was a man just like us. He prayed earnestly that it would not rain, and it did not rain on the land for three and a half years." (James 5:17) Stranger things, you see, have happened. Bigger prayers than ours have been answered. And Jonah is now at a class sledding party, making full use of that chilly answer to prayer—and of an accidental scheduling error that kept him from going to the hospital today. Grace upon grace.

Numerous people have told us they prayed that Jonah could be home for Christmas, and we are extremely grateful to report that he was able to spend all of the past week and a half at home and has enjoyed a relatively easy phase of treatment during the month of December, with only a few bad days of nausea. Jonah has even begun to look forward to his hospital visits lately, since he has started to develop friendships with some of the patients and has felt well enough to take advantage of the crafts and other activities available to the kids there.

This less intense phase of treatment will continue until late January, when he is scheduled to begin "delayed intensification." For that stage of his treatment, Jonah will again be required to spend most of his time close to the hospital. We are extremely thankful for the generosity of some friends of my aunt and uncle who, without ever having met us, offered their condo as a place for him to stay during those two months while they spend the winter in the Arizona sunshine. We are, once again, overwhelmed by the kindness not only of friends and family, but of complete strangers. You all have been the answer to many, many of our prayers.

This brings me again to the main point of this post: gratitude. One thing that I have failed to adequately express to all of you is how tremendously grateful we are for the help and prayers and support that we have received during the last four months. You may be familiar with the phrase, "To whom much is given, much is required." It's true. But we have found that the inverse has been true as well: To whom much is required, much is given. We have been given far more than I can possibly list here.

We tried feebly at first to keep up with the thank-you notes, but within weeks it became clear that the task was beyond us. In spite of our good intentions, the acts of kindness poured in at a rate that exceeded our card-writing capabilities. So please forgive our lack of written response to your outpouring of love and generosity. Dozens of you chose to remain anonymous, and dozens more sent sweet, hand-written notes and generous checks and encouraging cards letting us know that you've been thinking of us and praying for us. But whether we know you by name or have no idea who you are, I want you to be aware of how grateful we are to you for carrying us through this tremendous trial. We could not possibly have done this on our own. So I apologize if the rest of this post reads more like an acceptance speech at the Oscars than a Christmas letter, but a long list of acknowlegements is in order.

First, the care packages for Jonah have been a great encouragement to him during difficult days. The gifts themselves were delightful and often provided a welcome distraction from his loneliness and discomfort. But he also was cheered by the knowledge that so many people continue to remember and care about him during this long illness. The piles of get-well cards have been and continue to be a boost to Jonah's morale. Thank you.

The little gifts for the rest of the boys have also helped them to feel loved while everyone's attention is focused on Jonah. The surprise toys and treats for the siblings have been especially wonderful during those long weeks when our family has had to be apart. Our four younger boys have had to suffer an upheaval in their lives as well, so thank you for remembering them.

Likewise, the gift cards and monetary gifts for our family have blessed us enormously as we have had to cover the expenses of traveling, eating on the road, setting up house in a new location, buying expensive medications, and much more. It is such a blessing to know that when each new expense arises we have the means to pay for it. Thank you.

To our church we owe a huge debt of gratitude for covering the biggest expenses we have incurred. It was through our church that we were able to get a second car—something we simply could not manage without during this stage of our lives. It was because of our church friends that we had a beautiful home away from home to live in on lake Coeur d'Alene during the first few months of Jonah's treatment. And it has been through our church that our most daunting medical bills have been paid for. Whenever I think of the ways that our church has helped us, it brings tears to my eyes. You, our church family, have loved us as true brothers and sisters. Thank you.

In addition, our local church community has taken on the massive task of providing meals and treats for our family during our months of topsy-turvy schedule. In the past, we have had a taste of your culinary skills here and there, but I think we have now sampled something from more of your kitchens than perhaps anybody else has. And we have not been disappointed. You are an astoundingly talented bunch of cooks. Thank you for sharing your culinary skills with us.

I cannot possibly list the names of all the people who have gone out of their way to serve our family in our hour of need, but I would be horribly remiss if I didn't mention at least these two by name: my dear friend Annie, and my mother-in-law, Marilynn. As soon as they heard the news of Jonah's diagnosis both these women immediately went into action to provide us with help.

Annie suddenly became my personal secretary and activities coordinator, organizing all those meals and rides and school lunches and house cleanings, and much more. I hate to think what we would have done without her. She has been the truest and most loyal of friends. She has blessed us all more than words can express, and I love her like a sister.

And Marilynn. I cannot sing her praises highly enough. She is currently enjoying a well-deserved break back in Arizona during these easier weeks of Jonah's treatment. But she got on a plane almost as soon as she learned of Jonah's cancer, and she plans to come back again to help us through the harder months ahead. Throughout these difficult times, she has been like a ministering angel to us, changing diapers, taking library trips, washing mountains of laundry, playing games, mopping floors, and providing love and constancy for us all when we needed it most. She seems to have infinite reserves of patience, and she has kept this household running smoothly while Jayson and I have been living out of suitcases and taking turns sleeping in hospital rooms. And, because we have no guest room, she has done all this while sharing Jude's bunk bed in Jonah's absence and sleeping on the couch when Jonah's been home. My mother-in-law is truly a saint and I love her dearly. The debt of gratitude we owe her can never be repaid.

Lastly, we are, of course, thankful to God, who has provided us so richly with all that we have needed and far, far more. He has been our rock, our fortress, and our deliverer. He is our strength and our song. And His grace continues to fill our lives, flowing into every corner, and falling on us daily, as pure and as lovely as Christmas snow.

There. That is what most needed to be said as this year winds down to a close. We are overwhelmingly grateful. Thank you all.

Wednesday, November 21, 2012

Giving Thanks for the Fleas


Three whole weeks somehow managed to slide quietly past without my producing so much as a howdy on this blog. So I suppose it's time to make an appearance and assure you that we are all, in fact, still alive. And that, in case it sounds like a small thing, is truly a remarkable gift.

In fact, if you stop long enough to think about it, there really are no "small" things. Even the mundane becomes marvelous when seen in the right light. Every square inch of creation should make your jaw drop simply for the mere fact that it is. And, as if merely being isn't enough to stagger the mind, then think about what it is. From wet grass to whirling galaxies, from subatomic particles to glowing supergiants, we are completely surrounded with reasons to go positively weak-kneed with gratitude. I forget it sometimes. And when circumstances get difficult, it can be easy to lose sight of even the most obvious blessings. But when I'm tempted to start griping, the best—and perhaps the only—way to keep from slowly transforming into a bipedal Eeyore is to start looking franticly around for reasons to be thankful. It always sounds impossible at first. But once I start, I never have to look very hard or very long. One glance at the five fingers on my hand or the solid roof over my head, and I'm off to a good start.

And on several occasions when my situation has seemed particularly devoid of reasons to be grateful, this passage from a book called The Hiding Place creeps into my consciousness and smacks me right between the eyebrows. In it two young Dutch sisters, Corrie (the author) and Betsie, are imprisoned in a Nazi concentration camp and  wondering what the best answer is to their latest difficulty—an infestation of fleas in their bunk house:
"That's it, Corrie! That's [God's] answer. 'Give thanks in all circumstances!' That's what we can do. We can start right now to thank God for every single thing about this new barracks!" I stared at her; then around me at the dark, foul-aired room.

"Such as?" I said.

"Such as being assigned here together."

I bit my lip. "Oh yes, Lord Jesus!"
"Such as what you're holding in your hands." I looked down at the Bible.

"Yes! Thank You, dear Lord, that there was no inspection when we entered here! Thank You for all these women, here in this room, who will meet You in these pages."

"Yes," said Betsie, "Thank You for the very crowding here. Since we're packed so close, that many more will hear!" She looked at me expectantly. "Corrie!" she prodded.

"Oh, all right. Thank You for the jammed, crammed, stuffed, packed suffocating crowds."

"Thank You," Betsie went on serenely, "for the fleas and for—"
The fleas! This was too much. "Betsie, there's no way even God can make me grateful for a flea."

"Give thanks in all circumstances," she quoted. "It doesn't say, 'in pleasant circumstances.' Fleas are part of this place where God has put us."

And so we stood between tiers of bunks and gave thanks for fleas. But this time I was sure Betsie was wrong.
Seriously? There they are—starved, miserable, and trapped in some of the worst living conditions imaginable—and yet they start giving thanks? For the fleas? Now that, folks, is just plain Bible-weirdo crazy. Sometimes Betsie is the kind of pious church girl that might drive any normal person nuts. She certainly drove her sister Corrie nuts at times. And in all honesty, I'm not entirely sure whether the Bible passage they were reading means that we must give thanks for the fleas or to give thanks in the midst of the fleas—or even in spite of the fleas. But in any case, they give thanks for the fleas. And, as it turns out, they later learn that the only reason they had been left alone and been allowed to talk openly with the other women in their barracks was because their merciless guards refused to enter their flea-infested quarters. The fleas had been the reason for their only moments of freedom to develop friendships and practice their faith.

So, well, thank God for the fleas. We've all got 'em, in some form or other.

• • • • • •

With Thanksgiving just a few hours over the horizon, it's a perfect time to remember that even in our direst circumstances, even when you're a ten-year-old with cancer, there is always something to be thankful for. Always. Betsie understood that. And she and Corrie learned that sometimes the dire circumstances themselves turn into unexpected blessings—not just in the distant future or in the hereafter, but in the here and now. It's a hard lesson, but even we, stiff-necked and thick-headed as we sometimes are, are beginning to learn it, too.

For example, Jonah was scheduled to spend Monday through Wednesday or Thursday of this week in the hospital, beginning the next two-month phase of his treatment for leukemia. But on Monday morning his white blood cell counts were still too low for him to safely receive his chemo, so the oncologist sent him back home. Yes, home. Ordinarily this would be a disappointing setback, but when the setback means that he gets to stay home with his brothers all week while they are on Thanksgiving break, we are grateful for the delay. Three cheers for untimely immunosuppression! Today I am grateful for a low ANC. Today, we are thanking God for the fleas.

In truth, we have a lot to be grateful for, even without the fleas. Plenty has happened since my last post, but you know what they say about "no news." And in this case, they are mostly right.

During the last few weeks, Jonah's nausea has remained much milder, and he has been able to gain back some of the weight he lost. Although he sometimes struggles to work up an appetite, he has, for the most part, been able to keep his food down. Sudden waves of nausea do still take him off guard from time to time, but they are far less frequent, which is a very welcome change. Having a kid on chemo is remarkably like having a pregnant woman around the house—badly timed cravings for bizarre foods that suddenly become unappetizing to him the minute we return, rain soaked and freezing, with the takeout boxes in tow. It's a good thing leftover curry tastes even better the next day.

Jonah just completed phase two of his treatment, so we were able to move out of our friends' lake house last Tuesday, and Jonah has been here at home since then. He even felt well enough to attend his first full day of school this year, to go fishing with his dad and brothers, and to spend part of the day at a friend's house. We should be able to spend Thanksgiving Day at my parents' house as well and to enjoy the remainder of the break together as a family.

Then, probably next Monday— or as soon as his white cell counts recover—Jonah will begin phase three of his treatment. This stage will last about two months and should consist of a three-day hospital stay every two weeks. The drugs they will give him are strong and require monitoring and "rescue medication" afterward. But between those hospital stays, his doctors expect him to be able to come all the way home. That this easier phase of his treatment falls right smack in the middle of the Thanksgiving and Christmas holidays is a blessing that, as you can imagine, isn't lost on us. Our prayer is that Jonah will feel well during this phase and be able to participate in as many of the Christmas festivities as possible.

After this next two-month phase of treatment is complete, Jonah will begin another two-month phase called "delayed intensification," which should be just about as pleasant as it sounds. For those two months, we will need to live in or around Spokane to be near to the hospital in case of emergency. But the good news is that this will be the final difficult stretch before entering the much milder "maintenance" phase that will continue for roughly three years but be spent almost entirely at home. At that time we expect that he will be able to return to a relatively normal routine of school and sports and piano lessons.

I can hardly express how inviting the phrase "normal routine" sounds. At about this time two years ago, I wrote a post called "The Glorious Status Quo" in which I was, ironically, rejoicing in the discovery that I didn't have cancer. I was delighting in the fact that normal life could go on as planned. Even then, I was learning to recognize the joy of just being allowed to live a common, unremarkable sort of life. But now? Nothing in the world sounds sweeter than a boring ol' month of laundry and school and diapers and mop water.

Many of my friends have been posting an item or two each day for the month of November of things for which they are thankful. It's a terrific exercise. I have never done it myself, but I imagine I'll give it a whirl at some point. But one thing these last few months have taught me is that there is far more that is joyous and lovely in this world than I have tended to recognize. So I am making more of an effort to keep my eyes open. I have taken hundreds of photos in recent weeks of whatever I find that strikes me as true, good, and beautiful, and it's been a helpful activity for cultivating gratitude. I am by no means an expert photographer, and most of my photos have been snapped on my cell phone camera. But that doesn't really matter. The point is to not allow the blessings of life, both great and small, to go by unnoticed. Taking pictures lately has been a simple way of tuning my senses to the goodness of all that God has given us—from cabbages to crayons, from ice formations to eyelashes.

And Jonah has also begun to know, deep down in his bones, that just to fall asleep in your own bed each night is a gift without parallel. He recognizes, better than any ten-year-old I've met, that there is glory in the little things because for him the "little" things are anything but. Think about it: When was the last time you thanked God for the privilege of setting foot in a grocery store or a classroom or a church? When have you ever thought to be grateful for the simple fact that you have an appetite? For blood cells that function properly? For seeing your messy, noisy family everyday at breakfast?

Open your eyes to what you have. These are gifts. These are reasons to give thanks. Take the time to notice, and you will always have cause to be grateful—even, perhaps, for the fleas.

Friday, October 26, 2012

Cirque du Today

If there's one skill that our whole family has been honing lately it is flexibility. Every time Jonah's situation changes—and it changes frequently—we have to be ready on a moment's notice to swivel and twist and turn our plans upside-down. Some days I feel like I belong to a troupe of those gravity-defying Chinese acrobats, dangling precariously from a wildly swaying trapeze, my limbs looped all around like a human pretzel. How did I end up here? Why did I agree to this? It feels like madness. It probably looks like madness, too. But in reality it's the only sane thing to do. If I were to remain stiff and still—if I stubbornly refused to take part in this swirling circus act—I would simply be knocked flat on my back by the force of the action around me. We all must either bend or break. The show must go on, whether I participate willingly or not.

I am willing. I truly am. But I am awfully sore.

Before Jonah's diagnosis, we tended to be creatures of ossified habit, who usually made plans that required little elasticity, little variation from our comfortable, predictable routines. But on one startling day in August, all of our carefully constructed plans were spontaneously gutted and remodeled, and now our days consist more of vague expectations than of well-marked schedules.

Birthday surprises from my favorite people.
We avoid making time-sensitive promises. We RSVP with a caveat. When we celebrated my birthday last week, we were uncertain how Jonah would be doing over the weekend, so we waited until the last minute to make a decision about where to go. I was supposed to sign up for a specific date and time for parent-teacher conferences, but I didn't because, well, I have no idea what I'll be doing two hours from now let alone next Thursday afternoon. With the help of my mother-in-law and many friends, we do try to stick to a schedule for the rest of the family, and our other kids are adjusting to the “new normal,” but Jonah's situation is a constant question mark looming over each day's activities, and we all sometimes feel stretched a little thin.

I have grown a little weary of answering the seemingly simple question, “So, what are your plans for today/tomorrow/this week?” I just never know. I have been reminded over and over of what the apostle James says: “You do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, ‘If the Lord wills, we will live and do this or that.’” This has always been true, but it's never seemed more obvious. More times than I can count, as soon I tell someone our “plans” some unforeseen situation arises to change them. If I inform you that Jonah's going to get a blood transfusion today, he doesn't. If I tell you that Jonah is likely to have a good week, then he spends the whole week in bed sleeping or puking. And if I tell you that I expect him to feel terrible after his chemo, then sure enough, he'll be cheerfully sitting up, enthusiastically watching the World Series and eating heaps of spicy Thai curry. So who am I to tell anybody my plans? I am not writing this story. I am simply living it. And living it well means living it in faith. Living it flexibly.

The view from our hospital room after Tuesday's storm.
Just writing these updates can be a difficult exercise. I delete more than I publish, wondering what tone to take, what details to share. Dwell too long on the struggles and heartaches, and it sounds like an ungrateful pity party. Spend too long giving glowing reports of happy moments, and it reads—at least to me—like a cheap veneer. The fact is, both sides of this story exist simultaneously. Dark clouds and sunshine share the same sky.

On the one hand, Jonah appears to be moving steadily toward recovery, God is helping us to grow and mature, and we have a small army of friends and loved ones praying for us, holding us up, catching us when we're falling, and helping us to untangle from these acrobatic knots we're tied in. We are blessed beyond measure. But on the other hand, we have a child missing his friends, missing his routine, missing his health, missing out on school, and fighting a life-threatening disease. We exist in a state of constant flux and sudden change, perpetually living out of suitcases in a no-man's land between hospital, lake house, and home. We have to stay on our toes as much as any prima ballerina, and we are being stretched far beyond our comfort zones. I can definitely feel the burn. 

Right now, we are in the hospital with Jonah, hoping we can discover a solution to his ongoing malaise. He's been tired and dizzy and prone to random fevers and daily bouts of nausea. And now he is also receiving four consecutive days of IV chemo—the variety that usually makes him feel intensely sick. While we did arrive here with a loose set of expectations, we were hardly surprised when the plans changed. 

Jonah working on a little Latin in the hospital.
First, Jonah was dehydrated after a weekend of illness, so he couldn't receive his chemo until he was fully hydrated, which took many hours longer than we had expected. He was also supposed to receive blood after his first dose of chemo, but he ran a fever again, and the transfusion had to be postponed nearly twenty-four hours. And yet, so far Jonah has tolerated the chemo far better than we anticipated. He was able to eat a real breakfast even after his chemo, and then ate a big, spicy lunch and dinner. This, too, was unexpected—and very welcome. But then the nausea medication started to make him so dizzy he could hardly walk and so loopy he couldn't finish a coherent sentence or remember what he'd done five minutes earlier. Then he started having abdominal pains. Or bladder spasms. Or both. He can't face the sight of a muffin, and yet he craves Panang curry. One minute he's smiling and doing craft projects, and the next he's flat on his back moaning and clutching his belly. I never know whether it's best to make him nap or eat or study Latin or take a walk.

Yesterday the oncologist was expected to check in with us first thing in morning, but she got so busy that we didn't see her until early in the evening. We are hoping that Jonah will be discharged this afternoon, but we know that this is also subject to numerous factors outside our control. We wanted the family to spend the weekend together, but when Asaph started throwing up last night, we realized that, in order to protect Jonah, a family gathering is not going to happen. Plans may change and change and change again. And if so, we must remain flexible; we must be ready to spin and bend. 

I like to think that in years to come we will spend a lot of time laughing over some of the crazy contortions we found ourselves performing during this three-ring circus. With a little distance, a series of mishaps that once seemed like a miserable crisis may seem more like a well-timed comedy sketch, and we will be able to appreciate the intricate series of plot twists that formed this chapter of our story.

What makes these moments tolerable is knowing that while we may have lost control of a particular scene, our God hasn't. He is writing this story, and He writes well. He writes well even during the suspenseful chapters. Especially during the suspenseful chapters. This particular chapter has been a real nail-biter, and I confess that I am one of those folks who prefers to inhabit the tamer plot lines—more Austen and less Tolkien for me, thanks. When I reach the tense, frightening chapters of a novel I almost always skip to the last page, just to make sure that everything turns out all right in the end before I want to keep reading. Weak, perhaps, but it's the spoilers that keep me going. And it's no different in this real-life cliffhanger. 

While I may not know many of the intervening details, I can take courage because I already know that this story ultimately ends well. I can step out from the wings to grab hold of the swaying trapeze, to bend with every plot twist in this particular suspense story, because I know the Author; because I know the Author is good; because I know His promises are true; because I know with a deep, unswerving confidence that, although I might not yet see how, all things—all things—are working together for good.
“In all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” —Romans 8:37-39 

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