Thursday, May 16, 2013
Thursday, February 28, 2013
|Jonah on our walk this morning, with a view of downtown Spokane.|
Monday, December 31, 2012
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.
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.
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
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."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.
"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.
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
|Birthday surprises from my favorite people.|
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.|
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.|
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
Friday, October 12, 2012
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.
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.
will revive me again;
from the depths of the earth
you will bring me up again.
and comfort me again.
for your faithfulness, O my God.
Saturday, September 29, 2012
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.
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.