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.

Guess Who's Home!

There's no place like home!

After a very long month away from his home, his friends, and his family, Jonah is finally going to be sleeping in his own bed tonight. God has certainly been keeping us on our toes and teaching us to hold our plans very loosely, but after all of the unexpected changes during these past several weeks, we are praying that this week at home will be refreshingly mundane. Jonah is incredibly happy just to have the privilege of setting his feet on familiar ground, and we are so thankful to simply be together as a family again.

Look at Liam's face in that picture. A happy reunion, if there ever was one. Liam and Jonah have seen each other for a grand total of about thirty minutes during the last four weeks. We tried—twice—to get the whole family together at the lake house, but both times our two littlest got sick and couldn't be around Jonah, so tonight was  our first family meal since August 19th. It's a joyous occasion, but still bittersweet, since we know that he has to leave again on Monday. However, we hope to make these six days as sweet as possible for him—and for all of us.

Jayson and his mom and I have been driving back and forth between home and the hospital and the lake house, sharing the load of caring for a household divided by distance. This has made our schedule rather hectic, but it has also allowed each of us to have time with kids in both places. It's been difficult, but it's been livable. However, there's nothing that compares to being all together in our own home. So wonderful. Never underestimate the value of normalcy.

But then again, never underestimate the value of trials. Sometimes the deepest, richest grace comes wrapped in the most unappealing packages. I have discovered flashes of glory in the most unlikely settings. I was loading groceries into my car after a little shopping trip in Coeur d'Alene last week, and, noticing something moving out of the corner of my eye, looked up to see this bright bird of paradise hopping around inside the weathered cab of a dilapidated yellow pickup truck. Sometimes grace is like that: beautiful, glorious, and surprising—and all the more so because we find it within the ugliest situations.

These weeks have been a wild and unpredictable ride. I have tried multiple times this week to sit down and document it, but blogging without a proper computer has been more difficult than I thought. I hope to get a laptop soon so that I can keep you updated more easily. Now that I'm home, I'll try to fill you in on what we've been up to these last several days:

While I was home last week, I was able to do a few fun things with my other boys, including joining Paul's and Asaph's classes at the county fair. But most of my week was spent away from home with Jonah.

The Friday before last was quite the preposterous series of events. After a long day at the hospital for a clinic appointment, Jonah and I returned to the lake house only to discover that we had locked ourselves out. My keys were on the kitchen counter, and the other set of keys was ninety miles away. Thankfully Jayson and the family were already planning to come up to see us that evening, so they hurried to the van and got there as soon as they could. In the meantime we met a few of our sweet neighbors—including another ten-year-old boy who has been on cancer drugs himself for a kidney disorder—and enjoyed a lovely afternoon by the water, eating grapes and reading aloud while we waited.

Once Jayson arrived, we breathed a brief sigh of relief. And then chaos ensued. We were halfway through unloading the van while the big boys ran through the house shouting excitedly to each other as they discovered each new room, when Liam threw up on the hearth, Asaph started coughing, Jayson and I  scrambled to quarantine and disinfect, and Grannie M buckled both little boys back into the car and drove them the whole 90 miles back home for the weekend. The remaining boys tore into a huge box of gifts from Jonah's baseball team, I followed them around picking up bits of wrapping paper, and then the spaghetti boiled over. Surprisingly (no doubt because so many people have been praying for us) we all managed to keep our sanity and sense of humor through the whole ridiculous scene. And we were still able to enjoy a beautiful Saturday on the lake the next day with my brother's family and both my parents. My dad rented a boat, and we all—even Jonah—spent several pleasant hours enjoying the water and the warm weather to celebrate my dad's 60th.

In addition to a few regularly scheduled visits to the hospital, Jonah also managed to visit the Emergency Room. Twice. Last Wednesday morning I took him in after he couldn't stop vomiting, and then on Friday evening, right after Paul and Jude came to stay the weekend, I had to take him back to the ER for severe abdominal pain. That night was particularly rough; I've never seen him in such agony. The pain turned out to be simply the result of a slowed digestive system on account of the drugs he's on, but that didn't make it any less miserable. After a few doses of morphine, an X-ray, and a CT scan to rule out more serious problems, he was admitted, and we spent the rest of night in the hospital—by which I mean, we got to bed at 5:30 in the morning and slept until 9:00. Yaaaawn. But later that day, after a good nap, Jonah was back on his feet and doing this:

We've had our difficult moments, to be sure, but Jonah has been remarkably brave and has maintained good spirits and steadfast faith during some very challenging times. Please pray that he continues to pass this monumental test. We are thankful to know that Jonah is done with the first phase ("induction") of his 3 1/2-year treatment. Jonah's hair is just now starting to fall out slowly, but today he was able to quit taking his steroid, which means the puffiness in his face should start to subside over the next few weeks. This morning he also had a spinal tap and a bone marrow aspirate. The results of his bone marrow sample will determine how aggressive the next phase of treatment must be, so please pray for the tests to come back negative, with no cancer cells.

Thank you all for praying for us and for providing us with meals, cards, gifts, rides, donations, and encouragement throughout this first difficult month. We know that the grace of God has upheld us and met our many needs, and we know that much of that grace has come through your hands. Thank you. Please rejoice with us in Jonah's homecoming, and please continue to remember us all in your prayers as we move on to the next phases of Jonah's battle with leukemia. We sure do love that boy.

Out of the hospital!

So, the big news is that Jonah was released from the hospital yesterday evening. His doctor was not terribly concerned about his ANC so long as he stays away from public places and sick people for the time being. He has an appointment with his oncologist on Friday, so we will find out then if he is safe to go out a bit. We are enjoying Jonah's first day out of the hospital at a beautiful home on Lake Couer d'Alene owned by some friends from our church. What a huge blessing this place is. It will be hard to go home after being spoiled like this! The view and the house are both lovely. Jonah was nervous about leaving the reassuring safety of the hospital, but as soon as we arrived here he forgot all about his fears and started excitedly exploring every room.

Jonah was able to walk down to the dock this morning and dangle his feet in the lake. No swimming for him until his PICC line is replaced by a port at the end of the month, but the fresh air and the proximity to the water have had him smiling. And, as some wise man once said, "A merry heart doeth good like a medicine." From where I am sitting I can see the lights of Coeur d'Alene and the resort in the distance, and we are sharing the neighborhood with deer and and red winged blackbirds and blue herons. 

Jonah, who loves to spend time in the kitchen, got to help me make some beef stir fry for dinner tonight--another big boost to his spirits. While we are stuck so far from home, he might as well hone his culinary skills, right? By the end of this ordeal, I hope to have a fully fledged sous-chef around the house.

Next, we will need to bring our piano keyboard up here so that he can start practicing again, and I need to learn a thing or two about being a homeschool mom. In a place like this it will be all too easy to feel like we're on vacation and to forget that this boy has some work to do!

So far Jonah has felt fine today in spite of yesterday's dose of chemo. This is great news, since I have not had to give him any anti-nausea or pain medications at all since we left the hospital. I am more than happy to eliminate any unnecessary drugs from his medication-saturated body, so I would be grateful for your prayers that this will continue. And please keep praying for his ANC to recover. My dad is turning 60 next week, so, although some of our other kids have had colds,  we'd love to be able to have the whole family together to celebrate. We have much to celebrate already.

Some of you have asked how you can help from a distance. We have had countless immediate needs already met by many of you, so thank you. But if you are looking for addtional info, a friend of ours has created a web site for us that should have all the pertinent news about Jonah and links to additional ways to help: www.helpjonah.com. We are grateful for all your ongoing prayers and support. 

Jonah, 9/4/12

I am sitting here by the window at Sacred Heart Children's Hospital wondering what today will bring. Last week Jonah's oncologist said she expected him to be released from the hospital on Tuesday. That would be today, for those of you who are keeping track. But so far it looks like Jonah's ANC is still too low (55. Normal is around 2-3000.) for him to leave the safe and sanitary environment of the hospital without serious risk of infection. The slower his ANC is to recover after a dose of chemo, the more time he will have to spend away from home, so please continue to pray that his numbers will climb back quickly each time.

Two of Jonah's good friends came to visit this weekend which boosted his spirits and helped the time pass much more pleasantly. He really misses being at school and church and seeing his friends regularly, so these short visits are a very welcome change to the hospital routine.

Jonah has been feeling fairly good, but he is now starting to get some mouth sores, a common side effect of the chemo drugs. They are designed to kill fast growing cells, which includes cancer cells but also includes the cells of the mouth/GI lining and hair follicles, so mouth sores and hair loss are almost inevitable. No hair has fallen out yet, but we expect it to happen sometime this week or next. And the steroids he is on are also making him look a little puffy in the face--also a common side effect.

Just to make life a little more exciting, I woke up yesterday with abdominal pain that was so severe I thought it might be appendicitis. But thankfully that gradually subsided, although it took all day. I suspect that it had a lot to do with stress and my less than optimal eating habits lately. Anyway, thanks to those of you who were praying for that. I would hate to put the rest of my family through having two of us in the hospital right now--although it would no doubt make for some funny stories to tell later. (My grandma had her appendix out at the same time that she was supposed to be taking care of things at home while her mom was in the hospital, so they both ended up in recovery together. Crazy times. It's an anecdote that makes us laugh when she tells it now.)

We would, in fact, love to have none of us in the hospital soon. Jonah has always enjoyed being outdoors, and the closest he can get right now is a third floor hospital balcony overlooking the city. The view is fun, but it isn't the same as having his feet in the grass. So please keep praying for his immune system to bounce back rapidly so that he can leave sometime in the next couple days. He will have to be back here again every so often, but we would love to maximize his time away from the pediatric oncology ward. I will keep you all updated when we find out when Jonah can be released. Thanks for praying.

The latest on Jonah, 9/1/12

September? Wow. August 20 seems like an age ago. Did finding missing socks and paying library late fees ever seem remotely important to me? Two weeks ago would I have believed that I would now know how to flush a PICC line with saline and would have words like "Daunorubicin" and "lymphoblastic" rolling off the tip of my tongue? I cannot imagine living through such a sudden and spectacular transformation without knowing that we are upheld by the God who does not change.

After he endured a very long week full of nausea and weakness, Jonah's doctor adjusted some of his medications, and he seems to have finally turned a corner. His appetite, thanks to the steroids he's been on, is now back with a vengeance. He wakes up in the night wanting a snack, and he called me on Friday asking me to bring him some popcorn, two homemade two-egg omelets (because the hospital ones taste like damp dish sponges), and a bag of Buffalo Bleu Kettle Chips, all of which he ate in short order. Since then he's managed to consume remarkable amounts of food—strawberries, peaches, yogurt, bacon, sausage, pepperoni pizza, cheeseburgers, chicken couscous,  root beer, cranberry juice, and so on. After he lost several pounds, we are thankful that he's eating again and keeping it all down. And at this rate he looks like he's going to gain that weight back sooner than later.

Jonah is also the most cheery and talkative we have seen him in weeks. This weekend of seeing him acting more like himself again has been an emotional boost for all of us. We know he will continue to have ups and downs over the course of his treatment, but it is such a joy to have Jonah up and about, smiling, cracking jokes, and with some pink color back in his cheeks after a month of looking pale and tired all the time.

We were able to meet with Jonah's oncologist yesterday, and, as long as he continues on his present course, she is planning to release Jonah from the hospital as early as next week. His blood count is near its nadir, meaning that his immune system is at rock bottom, leaving him at high risk for infections, but as long as his numbers start to come back up as anticipated and he stays free of infection, they would allow him to leave the hospital on Tuesday. This does not mean that he can come home yet; we live too far away for that, but it would still be a welcome change. Thank you for your continued prayers to that end.

We also learned that Jonah will probably be allowed to come all the way home (and sleep in his own bunk bed!) for short intervals much sooner than we thought. This is also a huge relief, since earlier this week another oncologist told us she thought he might not be able to come home at all for six to nine months. That is still a possibility if his blood count is slow to recover after each dose of chemo. But over the next nine months Jonah will very likely be able to come home for varying periods of time in between his stays in the Spokane area. He may even be able to join his class at school for part of that time. So please pray for his body to recover quickly from his treatments and that he (and the rest of us) will remain infection-free  so that we can be together in Moscow as much as possible. We would all—obviously—love to have Jonah home again.

In the meantime, we have found a place to stay, at least for the next couple of months before snow comes, that is within the one-hour allowable driving distance from the hospital. Some church friends have offered the use of their vacation home on Lake Coeur d'Alene, and who could say no to that? This is a huge blessing which is going to make the prospect of living away from home much sweeter for Jonah. The boys may even get to enjoy some autumn fishing together before the weather turns.

We continue to be humbled and astonished by the kindness and love shown us by our Christian brothers and sisters both here and around the world. Hopkins was right: "Christ plays in ten thousand places, / Lovely in limbs, and lovely in eyes not his / To the Father through the features of men's faces." Every time we turn around, Christ is there, and He is unspeakably lovely. Every hot meal, every generous gift, every kind note, every offer of help, every hug, every prayer on our behalf has been Christ to us during these long two weeks. And we are grateful.

UPDATE: Just in the time since I sat down to write this, Jonah's nausea already started to return, and his temperature is now slightly elevated. Please pray that the nausea and fever would subside quickly and that he would still be able to leave on Tuesday.

This gives you some idea of how each day goes for Jonah right now. By the time I start to write one update, the situation changes so that my "update" is already out of date before I hit "publish". We are certainly being kept on our toes, so thank you for praying, even when we don't know what to ask for from moment to moment. God knows our needs even before we do.