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.

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.

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.

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.

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 

Joys and Trials, Tears and Smiles

I know, I know, I know. It's been too long since I gave you an update on this here blog. I had grand plans to try writing some kind of profound and meditative post this week, but after scrapping a few false starts, I gave up and decided that you'd probably prefer to just read a newsy update anyway. So here goes:

Jonah got out of the hospital for a couple of days after his long week of nausea, and his doctor surprised us by saying his ANC was high enough for him to come all the way home again. So we let it be a surprise for everyone at home, too, when he walked in the door. Such a happy moment! Jonah was able to stay with us for Sunday and Monday, and we enjoyed a restful time as a family, although he was still feeling quite weak after so many days of being unable to eat more than a Cheerio or two.

Then Tuesday he was back in the hospital for his weekly spinal tap and the start of his next round of daily chemo. This time, at least, I came prepared with packed bags in case his nausea kept him in the hospital. Accessing his new port went beautifully, and the spinal tap went smoothly as well. Then he went down the hall for his dose of chemo, and seemed to tolerate it well enough afterward to leave the hospital and return to Coeur d'Alene.

Well, within five minutes of reaching the car, Jonah was turning green, and by the time I merged onto the freeway, he was vomiting into his pink standard-issue hospital bucket. Every two minutes. All the way to Coeur d'Alene. Then it continued every two minutes for more than an hour at the house there, after which the doctor told us to return to the hospital. And then it went on every two minutes all the way back to the hospital and for a good half hour after we arrived. Four straight hours of unrelenting misery. Sorry for the unpleasant details, but I have never seen anybody that wretchedly sick in my life. Quite honestly I didn't think the human body was capable of heaving so many times and for so long without a reprieve. Perfectly horrid.

Jonah finally wore himself out and fell asleep in his hospital bed—even before receiving any nausea meds, and managed to sleep straight through the night. (Thank you to all who were praying for that!) To help Jonah's nausea, the doctor decided to try placing a motion sickness patch behind his ear, and he woke up feeling much better. Although Jonah was not able to bring himself to eat more than a few bites for the next four days, he was still significantly more comfortable than he had been the week before without the patch, so we will keep those handy for when he receives this same nasty chemo drug (Ara-C) next time around, two weeks from now.

By Friday afternoon, most of the chemo was working its way out of his system, and  Jonah was feeling well enough to eat again. The best news was that Jonah was released from the hospital just in time for the family to come up for the weekend—the first time that has worked out since Jonah's treatments began. And what made it even more delightful was that Jonah's uncle Brandon and cousin Branson arrived from Arizona the following day.

My mother-in-law commented a couple of times that it almost felt like Christmas being there together. Having all that family around boosted Jonah's morale more than anything that's happened yet, so we let the other boys skip a day of school on Monday in order to be together a little longer. It was definitely worth the extra homework. We had beautiful weather for the weekend, Jonah felt energized and ready to play (and eat!), and we were able to go to church, spend time at the park, hit some wiffle balls, dig in the sand, paddle in the canoe, splash in the hot tub, and eat some terrific homemade meals. Branson and Jonah cooked an outstanding chicken dinner together on Sunday, and then Jayson and Brandon took over the next night, grilling some spectacular hamburgers for all of us.

On Monday night Jayson's mom and I drove back home with the rest of the boys while Jayson, Jonah, Brandon, and Branson stayed in Coeur d'Alene. Jonah had his weekly spinal tap again on Tuesday morning, but this time Branson, who hopes to become a brain surgeon, was able to go with Jonah to watch the procedure. Not many high school students would choose to do something like that on their four-day weekend!

Jonah's nausea threatened to return in the car on the way back from the hospital, so the guys pulled over on the side of the road to pray for him before they reached the house. Once they arrived, Jayson also gave him his new patch and some of his nausea meds, and Jonah's appetite gradually improved as the evening wore on. By Wednesday Jonah had no nausea at all and was able to enjoy an outing in the canoe on his last morning together with Branson and Brandon before their return to Arizona.

That Jonah is feeling so well so soon after Tuesday's chemo and spinal tap is a huge blessing. It means that we can fairly accurately attribute Jonah's severe nausea to that one specific chemo drug, which in turn means that we can expect him to be free from nausea for the next two weeks until he starts receiving that drug again.

Jonah is now home for the weekend. He is tired and anemic, and his ANC is on the low side, so he isn't allowed to go out in public because of his weak immune system. But we are grateful to have him home whenever we can, even if he's just lying in bed reading a book or watching baseball on his iPad. We are also grateful to have a couple of weeks of relief from the extreme queasiness. Jonah does have a cold right now, so please pray that he would get over that and that his body would remain free from any serious infections, and that the rest of us would stay healthy throughout this cold and flu season so that our family can be together without putting Jonah at risk. Please pray as well that Jonah's nausea would be less severe during his upcoming rounds of chemo and that any other side effects would be minimal. Chemo is vicious stuff, so pray with us that it's doing the job it's meant to do, namely to cure Jonah of cancer—for good.

You who have made me see many troubles and calamities
    will revive me again;
from the depths of the earth
    you will bring me up again.

You will increase my greatness
    and comfort me again.

I will also praise you with the harp
    for your faithfulness, O my God.

—Psalm 71:20-22

Back in the Thick of It

As a much-needed respite during these months of difficult cancer treatments, Jonah was able to spend nearly a week at home. He was grateful just to be back among his people again, seeing his brothers everyday, sleeping in his own bed, and sharing meals with the family.

He joined his class for a half day at school last Wednesday, which, while it may not have been the "first day of school" we had anticipated, was still a welcome opportunity to catch up with his friends and feel a little bit normal, if only for a while. Jonah also got to see his class play on Friday morning. We look forward to the day when he'll be up there on the stage performing with them again.

He also spent some time outdoors swinging his new bat and trying out his new batting gloves. We even went out for dinner one night, to church on Sunday, and to my parents' house for Sunday dinner. But all his activities had to be brief and bookended with rest. His body is still quite weak, and going off the massive doses of steroids he's been on was rather painful. In spite of a handful of little outings, Jonah spent most of the week in bed with a splitting headache and lots of body aches. 

Steroid withdrawals by themselve are no fun, but we now think that he was also suffering from anemia at the same time, because after a blood transfusion on Monday he felt much, much better. Some kids are more sensitive to anemia than others, and we think that may have been behind the severity and duration of his headaches. One more thing to keep an eye on in the future.

The good news is that Jonah's bone marrow test revealed excellent results. His MRD numbers are right where his doctors had hoped—in remission. This sounds fabulous, which it is, but what it means is that here were no detectible cancer cells, not that he is cured. The doctors know from decades of treating kids with leukemia that the cancer will almost certainly return unless chemotherapy treatment continues. However, these good results do mean that Jonah's prognosis is as good as it could be and that we can stay on his present course of treatment instead of requiring an additional eight-week round of intensive chemotherapy. But now begins the first of three eight-week-long phases of chemo, two of which will require Jonah to be away from home. If all goes well, he will likely be able to come home periodically for about eight weeks in between the first and third rounds. Please pray that everything goes as well as—or even better than—his oncologist anticipates it will. 

Now we are back at the hospital, and for longer than we had expected. Jonah had surgery Tuesday morning to remove the PICC line from his arm and install a subcutaneous port in his chest. Since the port is under the skin, it will allow Jonah to enjoy more normal activities when he's feeling well, and we won't have to keep flushing the lines or protecting them from water. It will improve his quality of life once the incision heals. The recovery, however, is not going as smoothly as we had hoped. We anticipated that he would be able to leave the hospital on Wednesday, but he has not been well enough yet to leave because of side effects from a new chemo drug.

While he was sedated for surgery, Jonah also received yet another spinal tap, plus three additional kinds of chemo throughout the afternoon. Nothing like a quad-shot of toxic chemicals to brighten your day. Jonah has been suffering from fevers, headaches, soreness, and nausea ever since he came out of surgery, and the meds he's taking to combat the side effects make him feel punch drunk and spacey. He's mostly miserable, in a zombie-like trance, or asleep. For a few hours a day he's lucid enough for TV. And we got a few smiles out of him today.

We are working with his oncologist and the nurses to try to find some solution to the multiple side effects, but so far there's been no magic remedy. Tylenol, oxycodone, and morphine have kept his pain somewhat under control. But even after seven different nausea medications—including one marijuana derivative—acupressure wrist bands, ginger gum, a ginger supplement, and some pleasantly fruity aromatherapy, he is still living with a constant malaise and no appetite at all. It's all I can do to force him to take a sip from a juice box or eat a single Cheerio.

Sometimes it's hard to believe that all this pain and poison is designed to help and heal. In the last fifty years the survival rate for leukemia patients has gone from nearly zero to close to 90%. Huge strides have been made in this field of medicine. But still. If these pills are so toxic that the nurses have to wear nylon gloves just to touch them, how can I bring myself to watch him swallow them? Every day? For months? It takes a tremendous amount of trust, both in God and in our doctors, to believe that all these things are working together for Jonah's ultimate good.

Sitting here far away from my family helplessly watching Jonah go through this trauma has certainly put both my joy and patience to the test. It can be tempting to sit here staring at my pale, miserable son and throw myself a little pity party to the soundtrack of the beeping IV pump. But spending a week or two on the Pediatric Oncology floor does provide an eye-opening change in perspective.

We are surrounded here by children who are suffering much greater trials than Jonah is. Walking down the hall to the ice machine, I alternate between feelings of horror and gratitude when I come face-to-face with examples of how much worse off Jonah's situation could be.

I've seen kids with feeding tubes and oxygen masks and missing limbs and massive head scars from brain surgery. I have met mothers who have lost their kids to cancer, and I have met others whose kids are facing multiple surgeries and dangerous radiation and developmental delays and very bleak prognoses. So who are we to complain? Jonah's in remission, for pity's sake. His prognosis is good. We're facing more than three years of chemotherapy to keep those undetectable rogue cancer cells from rearing their ugly heads again, but we have good reason to expect that we will not have to see Jonah crippled, maimed, or, God forbid, buried. Among the folks on this floor of the hospital, we're the ones who got a break. We have it easy. Our kid just has high risk acute lymphoblastic leukemia, that's all. Others may envy us.

A good friend of mine who is an oncology nurse told me that when she heard Jonah had leukemia, she prayed, "Please God, let it be ALL." I would never have known to pray for such a thing, but she did. And after talking to a mom a few doors down the hall whose 13-year-old son has AML, I find myself praying, "Thank you, Lord, for letting my son have ALL instead." ALL. What a relief. Thank God.

No, really. Thank God. And please keep praying for Jonah and for all of us. We are on a long road, and we will need your prayers the whole way.