Eva’s first clinic day

It’s been a few days since my last update. I’m not sure the reason for the hiatus. I have two interpretations. On the one hand, the ups and downs of the emotional roller coaster seemed to have smoothed out a bit, relatively speaking. On the other hand, perhaps I just felt tired of revisiting the memories of each day and needed a break. I’m can’t say which is more accurate, but I can say that I have a lot of topics to reflect on between Thanksgiving Day and Eva’s birthday this past Sunday.

But first let’s get caught up on yesterday—Monday, November 28, 2016. For those of you counting, Monday was the 15th day of Eva’s 29-day “induction” phase of leukemia treatment. Day 15 included a trip to the outpatient clinic at Rady Children’s Hospital in San Diego. The appointment included a consultation with one of the physicians from the hematology/oncology team of physicians. We were instructed to check in 60 minutes before the scheduled consultation, which meant arriving at Rady Children’s at 12:30pm, which meant leaving Fallbrook at 11:30am. The lead-time for the consultation is intended to allow time for the nursing staff to provide access to Eva’s port.

We knew that Eva’s first outpatient port access process would be part of the visit, so Audra and I both attended to provide as much emotional support for one another and for Eva. Lily also asked to come along, which we permitted.

Eva becomes very anxious at the thought of new procedures, and port access was a new procedure to her. The anxiety crests at the start of each procedure. Her red-alert level of emotion leads to extreme reactions to even basic medical steps. For example, port access must be sterile, so everyone in the room wears a mask and hair net—everyone except me, of course. The nurses also clean the skin around the port site. Eva screamed in terror-filled agony when the nurse swabbed the area with alcohol wipes. You can guess, then, how she handled the “poke.”

Her anxiety is a challenge for us. First of all, we know that the physical experience isn’t as bad as she makes it to appear. We know that she is not really in much physical pain, if any. An alcohol swab on clean skin isn’t exactly a painful process. In the same way, her skin was numbed with a topical anesthetic, so the poke wasn’t so much poke as it was pressure. But, as I’ve explained to others, when she is that anxious you could pull a band-aid off her skin and she’d scream at the top of her lungs.

Another example of how the anxiety influences her behavior came when the nurses flushed the line to her port. The saline flush causes a chilly sensation internally as the room-temperature solution is pumped into her veins. Her dose of chemo on Monday began with a 30-second saline flush, followed by a 5-minute push of vincristine, and concluding with an identical 30-second flush. She rattled the windows with her scream at the start of the first flush. She complained of how cold it was, going as far as to suggest that it was hurting her. Yet she had calmed down before the flush was even finished. She patiently played a game on the iPad while the chemo was pumped and then—here’s the frustrating part—she didn’t notice anything as the final flush took place. Same procedure, one with screaming, one without even noticing it was happening.

While we know that the procedures are not causing her physical pain, the emotional pain is nevertheless real for her. It’s hard to separate the two. Skipping these procedures is not an option, but we also want to minimize her distress. It seems there isn’t much we can do to take it away except to be present with her to calm her, encourage her, and hold her tight. We do sense that she gets more comfortable with the procedures each time she repeats them, but this is not the kind of activity you want your children to become accustomed to. Yet we are proud of her continued bravery and cheerful spirits in the face of so much anxiety. I have to remember what she told me when she reenacted her “pokes” in the hospital. “It’s OK because my mom and dad were there.”

The consultation with the physician went well. Eva is handling her chemotherapy very well. Her side effects have been very manageable so far. She is not facing any serious nausea, nor is her nervous system suffering much from the chemo to this point. She has avoided everything on the list of “rare and serious” side effects. Her blood counts remain strong. She may only need one more transfusion between now and the end of the 29-day induction period. This is not to say that her body is suffering no ill effects, but to say that her body is handling the treatment with tremendous resilience. We are thankful for the strength of her young body.

By the time the chemo dosage and physician’s consultation were complete we had been at the clinic for more than two hours and were quite drained emotionally. Audra was drained from coaching Eva through the anxiety, I was drained from moderating Lily’s behavior.

Kids are consumed with fairness. “That’s not fair,” is the refrain of every childhood. But a healthy 7-year-old’s claim that something “isn’t fair” comes across as astonishingly grating when it’s verbalized in the chemotherapy room of a children’s cancer clinic. If Eva get’s a piece of candy to help her with the sensation of taste from an intravenous flush, Lily wants one, too. When I tell her no, that the stock of candy is part of Eva’s clinic kit, Lily complains. “It’s not fair.” It takes tremendous self-control not to blurt out, “I’ll tell you what’s not fair—a just-turned-six-year-old girl battling cancer.” It’s only because Eva’s illness has drawn our arms out in the shape of the cross that I have the patience to deal with Lily in these moments. And even then, I don’t actually want to show much patience. I’d rather tell exactly what I think.

Working with Lily has been hard. There are times she gets it. She’ll hear Eva scream in anxiety and within seconds Lily is on my lap and bawling tears of her own. She has said to me more than once, “I understand now, it’s not fun to be in the hospital.” On Monday I asked her, “Did you want to come to the clinic today so you could get candy and snacks and treats and play iPad?” She answered, “No, I came because I love Eva.” I believe her when she says that. And I know she’s coping with Eva’s illness in her own 7-year-old way. I explained to her, “I’m glad you came because you love Eva, but here’s how we show love to another person: we put them first. If you love Eva, it means you put down the iPad and give her your attention, even if she can’t give you attention in return. If you love Eva, it means you’re happy for her to get good things in the midst of getting all these bad things.”

Grown-ups need daily lessons of what love really is, so I’m not surprised children need them, too. We’re all growing up faster than we might be comfortable with. I only hope that I can be the guiding hand Lily needs while also remaining a fatherly picture of the Father’s grace to her.

Although we were ready to go home, we still had one more task to complete at the clinic—just a meeting with Andie from the Child Life department to explain to Eva that she will lose her hair and won’t be going back to kindergarten this year.

What hard meeting. Audra and Lily rallied for it; I wilted. I sat silently fighting back tears as Andie, Audra, and Lily cheerfully explained the hard news that Eva would lose her beautiful hair. No more “Elsa braids” for a while, but not for good. Time for cute hats, maybe a wig. Eva seemed to have deduced that something like this was going to happen from seeing the bare heads in the oncology clinic. She took the news well, overall, and seemed to find some novelty in it, especially the thought of having different hair in the future. But her face screwed up in fears and tears when she asked, “I’m afraid other kids will make fun of me.” This had been Lily’s big-sister concern since we first explained hair loss to her a couple weeks ago, and this has been a parent’s nightmare, too. As I write this I can’t even remember what Andie, Audra, and Lily said in response. My heart just broke. We’ll keep reminding Eva that her identity is not her hair, that her value isn’t found in follicles. We’ve asked my sister-in-law, Jessica, to be Eva’s “personal hat shopper.” Jessica has always had an eye for cute hats, and we’ll put her eye for style to use for Eva.

Eva handled the news about school quite well, too. She understands why she needs to stay away from all the germs that live in a school. She also found some comfort in the tools provided to keep her connected to her class. We’ve received a backpack with a large, stuffed monkey in it. The monkey sits in her seat in school as long as Eva is absent as a reminder to her classmates. The backpack also included some other resources to keep the connection between Eva and her class alive. A small monkey backpack can travel to and from school and acts like a postal service between Eva and her classmates.

Eva and Lily attend an innovative charter school near Fallbrook called Coastal Academy. The program is built around two “workshop” days during which Lily and Eva attend what most people think of as a “normal” classroom. But the other three days Lily and Eva study at home. The school has been perfect for our family situation. Audra is a trained teacher with a degree in education, the school is tuition free, and the flexibility is a perfect fit for our personality, lifestyle, and Christian faith. Coastal Academy offers a vibrant arts program and pursues a classical style of education, both of which have been part of the Christian tradition of education for centuries. We conduct all our religious instruction at home, which is where religious instruction is the most effective. The school’s flexibility means that Eva won’t actually miss all that much in terms of education, either—only the experience of working with her classmates will be lost. Nevertheless, the teaching staff has already arranged for Eva to receive many of her art projects and other workshop assignments at home. They’re doing their best to make sure Eva gets the full program of her kindergarten year. There may even be days when Eva—with physician approval—can visit the classroom for a few hours with Audra or me at her side. She likes that idea.

With a dose of chemo in her system, a consultation with the doctor complete, and an emotional discussion with Andie finished, we piled into the car and started the drive home. We got some of the worst steroid-induced moods from Eva on the return trip. About 15 miles from Fallbrook there was a minor dispute in the back seat that resulted in major screaming from Eva. They said watching your child on steroids might be the toughest part of the induction phase. That ride home was hard.

Once we got home we put Eva down on the bed to rest for a while. Some nausea from the dose of vincristine was showing up, so Audra administered the anti-nausea drug and held Eva on the bed so Eva’s emotions could settle and the nausea pass. Before long Eva was having dinner with us and cheerfully playing with her siblings before bedtime. Just like that, the day was coming to an end on a happy note.

I’ve commented several times to people that the induction process has been going far better than I expected. I had imagined life being quite miserable during this time. I mentally prepped for a weekly, infection-induced hospitalization. I figured we’d be holding Eva’s hair back while she puked every day—at least until the hair was gone. I didn’t expect the worst, but I expected worse than we’ve had.

But as we’re halfway through this intense, month-long treatment, I’m struck by how well it has gone. But rather than rejoice at this good news I find ways to interpret it as bad news. I wonder if this means the medicine isn’t working. I fear this means we’re going to get worse things later. I start to wish I could suffer a bit more now as a down payment of sorts for some easier times later.

As a Lutheran Christian, these feelings do not surprise me. Lutherans have a nifty theological category (in Latin, of course) called the opinio legis, which means something like “legal attitude.” It’s a quick, two-word way of saying, “All people by nature live in the illusion that they can pay a price to get God’s grace and favor.” We want our good things to cost something. We want to pay for them.

Once you see this legal attitude, you can’t un-see it. It’s everywhere you look. For example, our culture loves hard-core fitness challenges because we want health to hurt. Cleanses and detoxes are both popular and expensive because we want purity and we want it to cost something. In fact, food, fitness, and health are just about the only areas of life today where it’s safe to speak in moral language. We “cheat” on our diet, we “cleanse” our lifestyle, and we “pay for” the sins of eating too much pie at Thanksgiving.

We want what theologians call “atonement.” We want to have something good but at tremendous cost, and deep down we want to pay.

This legal attitude may lead to some hard-fought physical fitness in this life, but it’s lethal poison for your eternal soul. Why? Because the God who created us also says that we cannot possibly pay—or “atone”—for the forfeited good that we crave to have restored to us. In fact, it’s the legal attitude itself that stands between us and God! If the Lord is a giver and everything from him is a gift, how do you think the relationship will be if the human recipients deep down don’t want gifts but wages? Not good, not good at all. In fact, when the Christian scriptures talk about hell, they don’t talk about a place where a mean God sends people for petty crimes, they talk about a place where everyone shares a common attitude—they don’t want to receive God’s greatest gift. It’s as C.S Lewis once said, “The doors of hell are locked on the inside.”

God’s greatest gift has been and always will be the sending of his Son to take human flesh and join us in our suffering. God’s greatest gift is that the Son, Jesus Christ, was both willing and able to pay the price we wish we could pay. He overcame the corruption of our legal attitude by actually doing what we could only dream of doing—he lived a morally, spiritually, and legally perfect life, upholding every perfect command of the Father in our place. And then, the man who had earned nothing but reward willingly suffered nothing but retribution—not for sins he had committed, but for my sins and yours. By transferring your guilt to himself, Jesus paid what you could never pay, and in so doing has offered to you a gift you could never begin to imagine on your own: ultimate fulfillment in relationship with the source of all being.

God’s greatest gift overcomes our legal attitude, because God’s greatest gift has been accomplished apart from any payment of our own. I may want to pay for the good things he gives, but my payment is not needed. In fact, the more I try to pay for God’s gifts the less I find them. Payment has already been rendered in the Son of God, and that is all the payment I need.


Revisiting another time, another place

Yet another relatively “normal” day has come and gone. Eva remains in good health—no signs of oncoming infection so far. We’ve stationed hand sanitizer pumps throughout the house. The fridge is spotless, the dishwasher has been sanitized, and the garage…well, that’s a project for another day.

We’re finding some therapy in cleaning, organizing, and processing. The emotional chaos surrounding Eva’s diagnosis seems to have magnified the seeming chaos of a lived-in home, so putting things back in their place feels good and checking things off a lists is strangely satisfying.

Nana Bassett is putting in lots of time playing with the four kids—games of Trouble with Lily and Eva, tower-building with Theo and Clara. During some of that playtime Audra and I took a couple hours together to think through our growing list of topics and tasks. We’re going to start taking time each day to organize and act on jobs to be done.

Audra and Nana Bassett did some day-before preparations for Thanksgiving dinner. Eva helped to prepare the crust for our traditional pecan pie. The shared experience of holiday cooking is one of those traditions passed on from generation to generation. I overheard Eva speculating on what her “babies” will be like one day, and how she will teach them to cook. She wants to have twins. Those little conversations are always heartwarming; in Eva’s context they are even more meaningful.

I overheard all this because I was at the desk in the next room catching up on the last two weeks of expense tracking and budgeting. You wouldn’t expect it, but one of the most common expenses I logged and categorized was for parking. There’s no free parking at city hospitals, and for the first several days of Eva’s hospitalization we had a daily parking fee. I worked backwards through my transactions from the most recent to the older ones until I found a parking fee not from Rady Children’s but from Oceanside Pier—about the same price for parking, but from a foreign time and place.

Each Sunday during the school year I try to take Lily and Eva for a little outing in the afternoon while Theo and Clara sleep. Audra uses the time to plan for the week ahead, especially her share of the hybrid classroom/homeschool program where Lily and Eva attend class. That weekend it had been particularly sunny and mild, so I suggested we visit the beach. As Lily, Eva, and I talked it over, Audra chimed in, “Why don’t we all go?”

You see, I was leaving the next morning for meetings in Milwaukee, WI and was scheduled to be gone the whole week. There were also some scheduled days off of school the same week. That weekly planning session didn’t feel as important, and starting the long week off with some time together seemed like the right thing to do. We even stretched ourselves to try something we had found to be impossible ever since the twins were born: we stocked a chest with everything we needed for a little hot dog picnic on the seashore. We drove to Oceanside Pier, paid for parking, and set up our little spot on the beach.

There are certain pleasures in life, and one of them is visiting the beach in November. First of all, the calendar says November and we’re at the beach! Only the grizzled old-timers are out surfing the waves; most of the big groups have stayed home. An occasional couple strolls by barefoot and blue collar workers from town park to eat dinner from the driver’s seat of their trusty pickup. The air is a fresh as it gets. The sun sets earlier and the temperature is cooler, but the mild weather is a welcome break from the long, hot summer. The sand stays warm for a while, but soon the cool breeze sends chilly children retreating to warm laps. Hot dogs right from the grill topped with ketchup and sand go down easy, then—surprise!—dad sneaked some Oreos along. We chase away the scavenging gulls claiming everything as “mine! mine!” Dump the ashes, watch the sun set, rinse off, drive home, carry sleeping children to bed.

I don’t think it’s hindsight coloring my impression of that day when I say it was perfect. It felt as if, for the first time in a long time, we were able to do something—all six of us—without having to also pull of a logistical miracle in the process. We could do it—finally—and happily looked forward to doing it again soon.

Three days later Eva was in the emergency room and I was catching the last flight home from Milwaukee. Six days later doctors were explaining leukemia to us. A week later Audra was finally folding the laundry from that day at the beach, including the Eva-sized swimming suit buried in the bottom of the basket.

It’s unsettling to think that as Eva ran around in the sand that night her bone marrow was spiraling out of control. It’s unnerving to realize how something so dangerous could be hidden behind something so beautiful. We had no idea what was coming.

I revisited the memory of that night frequently for the first few nights I stayed in the hospital. I couldn’t stop thinking about that leg of Eva’s about to explode with the first painful symptoms of the cancer in her bones. It was there the whole time, that evil lurking just out of sight and still out of mind. The memory felt misaligned and discolored by the evil that we later realized had been with us.

I have since come to realize, though, that on that night it was God’s providential goodness that was with us. The Lord obscured hidden evil with overt beauty and love—from the stunning beauty of the setting sun to the refreshing blast of the ocean breeze; from the laughing children to the faithful spouse. It was all there in one way or another, a little bit of virtually every earthly gift God has given and continues to give my family. The cancer that has taken center stage in our life could not steal the show that night. On that day it was the evil of cancer that sulked in the shadows cast by God’s glorious goodness, not the other way around.

But that was only possible because there had been a time when evil overshadowed even God’s glory. The Lord Jesus Christ—God in human flesh—willingly gave up the enjoyment of his divine glory to be obscured by the overpowering evil of our sin. Evil darkened everything from the sky of God’s marvelous creation to the eyes of God’s own Son. Jesus died from your sin and mine, but he rose again to restore joy and gladness to God’s creatures. He rose so that the unsettling reality of sin lurking within might be done away with now and forever. And he rose to make days like Sunday, November 6 possible for us.

In every moment of this life, God’s goodness is on display more than this world’s evil. Even in the face of evil we find reasons to rejoice. Evil cannot keep center stage. Sin cannot govern our memories. Evil is coursing through our veins at all times, but in the life of the baptized Christian righteousness covers it all.

The love of Christ that covers all sin magnify the beauty of every moment today and always.

Waiting and watching

We woke to the familiar sounds of two toddlers making a ruckus in their room. They tore all the clothes out of their dresser again. We’re definitely home.

Nana Bassett cooked up breakfast for this morning—fried eggs for everyone, made to order. When we have eggs for breakfast, Eva usually eats just one. Today she started by eating two, requested a third, then ate an apple, and topped it all off with an English muffin. The steroids are definitely active in her little body.

The entire morning was quite hectic, it seemed. We have a thousand little details to handle and no routine to impose order on it all. Medications to administer, people to call, letters to write, errands to run, work to do. Oh, and our house is overflowing with a mountain of generous gifts! Every day since Eva was hospitalized seems to have been a not-so-miniature version of Christmas in terms of gifts received. The mail carrier brings good tidings every day. We will personally thank everyone who sent a gift, but for now we’ll issue a blanket, “Thanks for filling our home with fun things for Eva and her siblings!”

I ran a few errands mid-morning before driving Grandma Davis to the San Diego Airport for her flight back home. We are so thankful that she was able to fly across the country to assist us in the difficult early days of Eva’s illness. As a cancer survivor herself, she brought a unique kind of empathy for Eva.

Audra and Lily did some grocery shopping in the afternoon while Theo and Clara took their nap. The return to some relatively normal routines was therapeutic. It doesn’t seem possible that Thanksgiving is only a couple days away. We have much to be thankful for, even if we just bought (and therefore started thawing) our turkey today.

Eva used the quieter afternoon hours to rest in bed. Her back is still a little sore from the lumbar puncture yesterday. Nana Bassett used the time to do some thorough cleaning of our fridge. Food safety is one of the important components of keeping an oncology patient healthy, and while I can’t say our fridge is sterile, it’s definitely close to godliness.

Eva received some visitors from church this afternoon who stopped by to drop off a delicious supper and say hi. Watching Eva happily talk to others brings such a joy. At one point I had this fear that she’d change somehow, like the leukemia in her bones would alter who she is. But now I see what plenty of people told me that I’d discover—she’s the same little girl we know and love.

Truth be told, today was strangely normal. There were errands, baths, and dishes mixed with tricycles, toys, and Pixar. All we’re really doing now is waiting and watching. We wait for the next appointment at the clinic, we watch for signs of infection. We prepare for emergency visits to the hospital. We look forward anxiously to Day 29—judgment day, the day that will determine what the future holds.

It’s only fitting, I suppose, that the Lord is shaping us in the ancient pattern of the Christian calendar. Sunday, November 27 is the first Sunday of Advent, the time when liturgical Christians around the globe take time to wait and watch for the coming of the Lord Jesus Christ.

The Scriptural record is clear: Within the mystery of the Holy Trinity the Father has entrusted all judgment to the Son. Our sense of justice in the world—that wrongs be punished and rights be rewarded—is a smoldering wick compared to the white-hot radiance of God’s holiness. Alone and without any defense, each of us should wait and watch for the Lord like villagers watching the hills for a conquering army—without hope. To a culture more interested in a moldable, malleable, “moral teacher” Jesus, the prospect of facing the music of his divine justice for our personal sin is repugnant. We like the idea of righting wrongs, we just can’t imagine a universe in which we’re the wrong God needs to right.

Make no mistake: the Judge we wait for comes to balance the scales, the Lord we watch for comes to bring justice. And what do we see? The Judge descends from his seat of authority and mounts a cross instead. He pardons the accused by standing accused in their place. He raises sinners to life by dying in their sin. He deports himself to outer darkness that we might become citizens of his realm. He becomes the man of sorrows that we become the people of delight. He balances the scales by putting the full weight of his righteousness in our account. “God made him who had no sin to be sin for us, so that in him we might become the righteousness of God” (2 Corinthians 5:21).

There’s no middle ground when it comes to waiting and watching for the Lord—his coming brings either dread or delight. Dread if in sin you’re still dead, delight if you’re righteous in his sight. You can ignore him, you can despise him, but then you can’t survive him. Or you can find him, you can trust him, and therefore thrive in him.

We wait and watch for Day 29. On that day we may rejoice at news of remission, or we will suffer a setback and move to Plan B. We just don’t know yet. But whether that day is good or bad, that day will not define us. We Christians wait and watch for the Last Day. On that day we will rejoice, not despair, for on that day the Lord Jesus will return as promised—suddenly, unexpectedly, bringing salvation with him for all who believe and are baptized into the holy name and atoning death of the Judge who suffered the sentence. I believe and am baptized. Audra believes and is baptized. Lily believes and is baptized. Theo believes and is baptized. Clara believes and is baptized. Eva believes and is baptized.

We’re all waiting, we’re all watching, and we all know what’s coming. We confess it aloud week in and week out in the liturgy. We believe in the forgiveness of sins. We watch for the resurrection of the body. We wait for the life everlasting.

We’re back home

Today was a long day, but it ended with Eva sleeping under our roof again.

The morning started early, as usual. Eva was awake at about 5:45am, having woken up to go potty for, I think, the sixth or seventh time since she went to bed the night before. I don’t think either of us slept for more than 90 minutes straight all night.

Eva was on food restrictions in the morning because of her scheduled intrathecal (in the spine) chemotherapy, which meant no breakfast. She nibbled instead on jello and sipped apple juice. She continued to prefer lounging in bed to the couch. She worked diligently on her Play-Doh creations most of the morning while we waited for Audra to arrive.

Once Audra had arrived (bearing Starbucks) we enjoyed a nice visit with a couple of doctor’s from Eva’s team of physicians. They answered more of our questions and told us that Eva looked like she could go home today after the day’s procedures.

First on the agenda was Eva’s intrathecal chemotherapy. This is the drug injected into her spinal fluid. I previously reported that Eva had no signs of leukemia cells in her spinal fluid, but that fact does not stop the intrathecal chemo doses. All leukemia patients receive three such doses as a part of the standard treatment plan, but Eva’s clean spinal fluid means she doesn’t have to receive additional intrathecal doses.

Any intrathecal dose requires light anesthesia, and thus requires no food or beverage for several hours before the procedure. The staff took Eva down to the chemo clinic at 10:30am. Eva wanted to take the wheelchair for convenience, but we made her walk to keep her limbs moving. We hit a snag in the clinic because the nursing staff needed to draw extra blood for an additional lab screening. We were initially confused about the draw and thought that perhaps it was a clumsy mistake that threatened to delay Eva’s procedure. However, once everyone had exchanged information we learned that Eva’s morning lab work had come back with some strange readings in her sodium levels. The medical team was concerned that something might either have been wrong with the morning draw (the likely scenario) or that Eva was going through some serious side effects (the rare scenario). A second test was needed to clear up the confusion, which lead the nurse practitioner in charge to wait until she could determine it was safe for Eva to proceed with her intrathecal dosage. Eva got bumped from third in line to, well, much later. Eva’s anxiety over the procedure and the hunger made for one discouraged little girl (and a quite anxious mama). After a lengthier wait than anticipated, the nurse practitioner in charge of the clinic finally decided it was safe to take Eva back for her procedure. She received her “sleeping medicine” and was out like a light.

The procedure went quickly. Within minutes of her falling asleep she was back in the holding area slowly waking up from the drug-induced sleep. She snacked while we waited the required 60 minutes before moving back up to her hospital room. By this time it was 1:40pm and everyone was hungry. Audra and I were also anxious about the blood work. If Eva’s labs had become unstable we would have to stay in the hospital longer. The hope that Eva might get to go home on the first eligible day started to dwindle, and as the hope dwindled the frustration mounted.

In my case, I began to jump to the worst possible conclusions. By the time we finally got news that her labs were all fine—the morning lab had been improperly taken—I had pretty much convinced myself that every horrible scenario was coming true. I knew what my mind was doing, yet I was powerless to stop it.

We were relieved to hear that the labs would not keep us home and began to work on further steps toward discharge. Eva received her intravenous dose of vincristine and we reviewed our big bag of prescription medication with the nurse. She quizzed us on their administration and gave us a nice medication checklist to use at home. We received another visit from Andie, the Child Life specialist. She brought a mountain of parting gifts for Eva. While she talked to Audra, I began the first of three preliminary trips to the car with all of Eva’s gifts and projects. We had been taking some home every day, but we could never move faster than the influx of new games, stuffed animals, and other gifts. People have been overwhelmingly generous to little Eva. We filled the entire rear row of a large SUV with bags and boxes!

As I prepared the last haul to the car, the nurse took Eva’s temperature and found that she was a bit warm. Since fever is a serious problem for oncology patients, this meant waiting a precautionary 30 minutes to check her temperature again. If her temp continued to rise she’d probably have to stay the night again. So, another anxious 30 minutes dragged by until the thermometer told us Eva was finally clear to go home.

The last thing we did before leaving was the painful work of removing the dressing around Eva’s port access apparatus. It took some time, but Eva bravely held her own with minimal screaming while we took it out. The nurses told us after the fact that they often have to restrain children for the process. We were glad Eva did relatively well.

Then it was out to the car in a wheelchair. Minutes after Eva got in the car, Nana Bassett arrived via Uber from the airport—perfect timing! We threw her bags in the back with the mountains of other stuff and happily drove home. Traffic was light and before supper on November 21 Eva was back home. She hugged her happy sisters and brother. She sat down for a nice meal with all of us. And before long she and Lily were locked in their room visiting together. We opened a few more of her gifts before putting her and Lily to bed for the night. Lily really wanted a “sleepover,” which in our house means Lily and Eva sharing a bed while they watch a movie. We had to tell them no, mainly for the sake of Eva getting sufficient rest. Lily was frustrated, but then asked, “Can we just look at each other and talk?” She is so glad to be reunited with her little sister. We are glad to have Eva home.

We are well aware how richly God has blessed us. As I was loading up our wagon with all of Eva’s loot, Audra and I met a mother walking the hallway with her little girl. Hazel just turned two years old and is suffering from acute myeloid leukemia, or AML—the kind of leukemia that is much harder to treat and far more life-threatening. Hazel has had a recurrence of her leukemia even after a bone marrow transplant. When she comes to the hospital she usually stays for a month. Hazel didn’t go home today.

As happy as we are to see progress in Eva’s treatment, we can’t seem to forget all the other children sleeping tonight on the second floor of the acute care pavilion of Rady Children’s Hospital. We are filled with a mixture of anger and sadness at how completely sin has corrupted everything about God’s creation. This isn’t the way it’s supposed to be.

The evil of cancer in two-year toddlers and cuddly little kindergarteners can’t be swept under the rug. There are no easy answers. “Spiritual but not religious” won’t come close to cutting it. Talk of the “circle of life” is only offensive. Sin and its cruel results are a deep, dark abyss. Stare into the darkness and you’ll go mad.

All I know is that God knows the darkness, he rushed headlong into it. He didn’t rationalize suffering, he drew closer through it. He assumed human flesh, became one of us in every way, and marched resolutely to the darkness. He was terrified. He prayed for a way out, but none came. The evil of sin can’t be swept under the rug. There is no easy answer. There is only death—your death, caused by your sin. And Jesus died it for you.

The cross of Christ is no easy answer, no practical solution—it’s the only way we can live. The suffering Savior is no role model, no life coach—he’s the only way we can survive. God-in-flesh is no theological trick, no metaphysical maneuver—the incarnation is the defeat of death itself. God redeemed sinners by becoming their sin for them. God overwhelmed suffering by suffering of his own. God defeated death by dying himself. Every human being has an ally and Savior in Jesus Christ.

And now he lives. He lives that all may live. So stare into the abyss, gaze into the darkness, look at little Hazel’s eyes and hear what the Lord Jesus says:

Do not be afraid. I am the First and the Last. I am the Living One; I was dead, and now look, I am alive for ever and ever! And I hold the keys of death and hell.

Lord Jesus, right all wrongs, dispel all darkness, and save your people.

Lord, have mercy.

Someone who understands

Today was fairly uneventful, as far as hospital stays go. Audra spent the night with Eva last night. I came down to Rady Children’s late this morning with sandwiches and pickles in the car this time. Audra, Eva, and I enjoyed lunch together before I sat for my “test” on home care. Eva actually fell asleep on the bed while a nurse walked me through all the questions. When Eva awoke she asked, “Did you pass your test?” She grinned ear to ear when I said yes. She knew the parent test was, to this point, the only unfinished part of the discharge process.

Things have progressed so steadily that the team will try to discharge us on the first day we are eligible, which is Day 8 of induction, Monday, November 21—tomorrow! When we first started induction the physicians told us that the hospital stay was a minimum of eight days of induction (plus the days leading up to the diagnosis), but they also cautioned us to expect a hospitalization that surpassed the minimum stay. We had privately hoped to be home before Thanksgiving, and if not then, perhaps by Eva’s birthday on November 27. We are thankful that Eva has handled the initial doses of chemotherapy well enough to go home on the first eligible day. She has learned to take her daily medications, she has eaten well, her nausea and pain are under control, her labs are stable, and she has no fever. All this adds up to discharge.

Of course, we won’t be sure about this until we have the discharge papers signed by one of her doctors, but the nursing team has been making every effort to prepare us for a likely discharge tomorrow. We’re excited to go home, but also a bit nervous. We’ll be right back here at Rady Children’s if Eva gets an infection of any kind. It’s hard not to imagine all the bad bugs out there. I have never been a germaphobe, but I might dabble in it for a while.

Audra went home in the early afternoon and I took over with Eva for the next 18 hours or so. Eva took it pretty easy today. She napped during an afternoon rain shower. She worked on activities in bed. Some irritation resulting from the constipation made sitting in bed more comfortable for her. We took a happy shower in the late afternoon. I brought my swimming suit so she could spray me with the hand-held shower head. She has been asking me to do this all week. She got a lot of laughs from soaking me in the warm water.

Shower was followed by dinner and a movie—Mary Poppins was in the DVD player tonight. Now Eva is sleeping and I’m wrapping up the day.

These days of induction are starting to feel like our “new normal.” I have mixed feelings about that. On the one hand, it’s nice to feel like we have some firm ground beneath us again. There are fewer unanswered questions. We grasp more fully what to expect in the coming weeks. We understand more how Eva’s leukemia will change our lives. But on the other hand, I miss the old normal. We had well-known routines. We had some family trips on the calendar. School was going well. That’s all changed now.

In the same way, I have mixed feelings about being in this new “club” of people who have faced cancer in their lives. On the one hand, I’m now able to understand better the kind of pain, fear, and doubts others have gone through. But on the other hand, I feel like an imposter of sorts. I regret not having understood so fully before. And I also know that what we are facing is not nearly as threatening as what others have faced in their families.

I suppose this comes from our natural tendency to measure and compare. The Scriptures say that all have fallen short, but we like to compare who has fallen the furthest. The Scriptures say that we are all under the curse of death, but we like to measure who has felt it the most. I want to measure up, even in terms of how much I bear the cross. I want to save myself more than anything, and if my suffering can help me on that path, then let’s take some measurements so I get full credit.

This law-based perspective leads nowhere good—pride on the one hand for having known much suffering, guilt on the other for knowing not enough. And neither path leads to the salvation I desperately need.

There is a better way. And it’s a way we’ve seen modeled for us already.

In recent days we have heard from many people who have gone through similar challenges as ours. They have reached us with gifts, cards, and messages of encouragement. Some of these have come from seemingly nowhere—total strangers have heard about Eva and now help us in ways they know best because they, too, have been where we are. Maybe they had it worse, maybe not. But it doesn’t matter. They understand what we understand, and there is no comparison game, no measuring and weighing, no suffering points to tally at the end of it all, just the kind of love that comes from suffering.

So also in the days when Caesar Augustus was the Roman emperor and a bureaucrat named Quirinius governed Judea, angels announced that the God of the universe had been born in our own human flesh. In Jesus Christ, God is more than a transcendent being floating in total, detached control of the world, he is deity united with a human nature as real and personal as your own. The God who knows of evil also understands it from experience. And the God who understands evil from experience also defeated it by drinking its cup to the last drop on the cross.

My suffering does not have to compare to his, and neither does yours, because our suffering doesn’t save us—only his does. There is no comparison game between us and God any longer, no measuring and weighing, no suffering points to tally at the end of it all—we’d lose that little game. In Christ all that remains is the perfect love that comes from a perfect Savior whose suffering embodied the kind of love that restores the fallen forever.

Ready to go home

Audra and I went through a pretty normal morning routine with Lily, Clara, and Theo—got dressed, had breakfast, brushed teeth, and loaded up in the minivan. The five of us drove down to Rady Children’s Hospital to get a visit with all the kids. Eva really loves to see her little brother and sister, but it’s hard to bring them down much because two-year-old twins don’t exactly like to sit still anywhere, let alone in a hospital room. Nevertheless, they did quite well this visit. They were excited to see Eva and said so by calling out her name excitedly. Eva got her “kiss kiss” and hug from each one before they became distracted with the Play-Doh that Eva was working with. Theo and Clara actually lasted a whole 30 minutes before we had to pack them up and go. I took the two of them back to Fallbrook while Audra, Lily, and Grandma Davis spent the rest of the morning and early afternoon with Eva.

Grandma Davis reported that Eva had received her first blood transfusion overnight. Apparently during the transfusion, which lasts four hours, Eva had to use the restroom. As she sat on the potty she looked up at her IV pole and saw the big bag of blood and asked, “Are they taking blood out of me?” Grandma responded, “No, they’re putting blood into you.” Eva replied, “Is that good or bad?” Grandma answered, “It’s good.” Eva accepted the news with a casual, “OK” and then went back to bed.

Audra spent time today working especially hard with Eva to coach her through her constipation. We’re happy to report that Eva has made good progress with that uncomfortable side effect. Suffice it to say things are working much better now. I’m thankful for how patiently Audra coaches Eva in difficult times.

Eva opened more gifts. We have a back-log of gifts and bring a couple of them down each day to the hospital. She and Lily watched Netflix, colored, crafted, and took time to connect as sisters while Audra studied the home care manual. We are trying to take Eva home at the earliest available date, which is Monday, November 21. There are certain criteria that Eva must pass to be discharged, and her overall condition so far meets the requirements. She can take her pills, she has no fever, and she’s managing side effects very well. There are also certain criteria that parents must pass for Eva to be discharged. The nurses test us on our knowledge of the home care protocols that we will need to know to provide safe and attentive care to Eva in our home. For example, any temperature of 101º or higher is a fever and thus an emergency. Our main job is to monitor for signs of infection and react accordingly. I’m happy to report that Audra passed her test in the afternoon. Now I just have to take mine on Sunday and the parent side of things will be clear for a discharge.

Grandma Davis brought Lily back home to Fallbrook in mid-afternoon. I ran some errands and prepped to head back down to the hospital for just a few hours so I could have supper with Eva and Audra (who was going to spend the night). Eva had been requesting sandwiches from our favorite sandwich shop in Fallbrook, Dominicks, so I grabbed some for her and the rest of the family. I brought the sandwiches home for Lily, Clara, and Theo and grabbed a few necessities for the hospital room and got on the road to Rady Children’s Hospital. 45 minutes later I parked at the hospital and realized I had left the sandwiches at home. I was so frustrated because Eva was expecting the sandwiches and was really looking forward to them—and the big deli pickle she loves so much. I felt awful and apologized profusely. She graciously smiled and said, “It’s OK.”

We ate something else instead and had a nice little time together. She took her pills and then bathed in the shower. She likes to take the hand-held shower head and spray me in the face with it. Her mood continues to fluctuate during the showers, but this time I got two face-sprays, which means she was having a fun time. She has requested that I bring a swimming suit so she can spray me even more, and I’m happy to oblige.

By about 7:30pm Eva asked to go to bed. She hadn’t napped that day because of all the time spent with family, so her request wasn’t anything out of the ordinary. Pastor Aaron Boehm, the San Diego Circuit pastor, stopped by at 8pm to visit with me individually and then Audra and me together. We appreciated the chance to talk and hear further comfort from the Scripture we hold so dear. After the devotion I drove back home to Fallbrook while Audra spent the night with Eva.

Before I left Audra told me a little story about Eva’s day. Every couple days a woman comes by and helps the children to move their limbs, stretch their muscles, and take deep breaths. The woman coached Eva to closer her eyes and flap her wings like a butterfly. Eva happily flapped. Next the woman said, “Now imagine you can fly anywhere you want, where would you fly?” Eva answered simply, “Home.”

One of the hymns in our Lutheran hymnal is, “I’m But a Stranger Here.” It goes like this:

I’m but a stranger here, / Heaven is my home;
Earth is a desert drear; / Heaven is my home:
Danger and sorrow stand / Round me on every hand;
Heaven is my fatherland, / Heaven is my home.

Eva clearly recognizes that the hospital is not her home. It’s a place she needs to be, but it’s not where she lives. The walls protect, but they are foreign. The food sustains, but it’s not homemade. The toys are hers, but the setting is not. We all want to go home, because it’s a better place.

I must admit that I don’t often think of my true home as the one Jesus has promised. As I get into the routines and rituals of life, it becomes easy to think of this place as our true home. The truth is that routines and rituals, house and home are good gifts of God, but they are meant to direct our hearts to a greater home he has promised to give us. Eva’s illness has made us long to be home in Fallbrook, but more than that, is has driven us to the hope of our greater home.

During the 40 days after Jesus rose from the dead to seal his victory over death he appeared to many eyewitnesses so that all generations would have the historical assurance that God himself became flesh and undid the curse of sin and death. But then Jesus ascended visibly to sit in power and authority in the heavenly realms, from where he now rules and guides the world toward its promised conclusion: when he returns to make a new heaven and a new earth, and restores our dead bodies to life everlasting.

We are strangers here, yes, and we look forward to going home one day. But the home in which we will live forever won’t seem so strange. Each of these moments of embodied joy we taste today is a partial glimpse of our heavenly home. Heaven won’t just be a place where spirits float in the sky, it will be a place with gardens and a swing set, a warm fireplace and a place to eat. The people will have twinkling blue eyes and freckles on their noses, toothy grins and shoulders to hug.

This morning felt like some of the darkness of the last week had passed. We’re ready to go home.

Taking time

I spent the night at the hospital on Thursday night into Friday morning. As I wrote yesterday, we expected that a blood transfusion would be likely overnight. I kept waking up throughout the night and checking the clock to see if the transfusion time had come, but I never saw them working on it. Turns out she didn’t need the transfusion just yet. The nurses told me that the doctors love it when the first transfusion is as late as possible, mainly because it makes the blood boost come closer to the date of discharge.

Speaking of going home, the physician on rounds the last two days has spoken quite optimistically about the possibility of Eva going home on Monday already. Monday is Day 8 of induction and the first day that patients are generally eligible to return home. Since Eva’s labs continue to look good and her side effects are not devastating, going home next week is real possibility. We’d love to have her home before Thanksgiving, and we’d especially love to have her home before her birthday on the 27th. We’re cautious with our optimism, but at this rate we may be home early next week.

I talked with Eva about going home today and explained what it takes to go home. She doesn’t groan, “I want to go home,” anymore, but that’s because she seems to have accepted that she is sick enough to require all the care they can give to her in the hospital. She knows she needs to stay as long as it takes, but is happy to think of going home now in terms of counting down the days.

Audra came down in the morning very early to spend time with Eva. Once again Eva loved heading over to the play room and working on art projects. This girl loves to paint! She also had a craving for our favorite Italian sandwich shop in Fallbrook, Dominick’s Delicatessen. She started asking about it first thing in the morning. Instead I got her a sandwich at an Italian deli in San Diego. It wasn’t the same, but it was nice to see her smile at the nice change of pace from the hospital food.

Her spirits remain good overall, in spite of the occasional mood swings. The moods usually come around tasks that she doesn’t want to do—like swallowing her pills. She can swallow them fine, she just doesn’t want to be bothered with it. We just calmly coach her through the process and wait for her grin after the pills are popped.

The biggest challenge Eva is facing right now in terms of side effects is constipation, which is a common side effect of the vincristine drug that she received on Day 1. (She will receive more vincristine each Monday of induction for a total of four doses.) She’s quite frustrated by it, and there’s some level of discomfort involved.

In spite of this, the doctors do not seem all too concerned about any one area of her reaction to the treatment. We’re staying the course and glad that side effects have been manageable overall. If Eva can get a little relief from the constipation soon then we’d have to admit she’s handling the chemotherapy as well as we could have reasonably hoped at this point.

Grandma Davis is spending the night with Eva again this evening and into tomorrow morning. We scheduled a babysitter for the afternoon so that she could have some overlap time with Audra and me at the hospital. I used the time to study up for my “test.” One of the prerequisites for taking Eva home is that the parents be able to pass a test on the basic care instructions and protocols. Ask me sometime what the common indicators of infection are and I’ll tell you.

After Audra and I left the hospital we stopped at one of our favorite places in San Diego to relax for an hour or so. We got a bite to eat and used the time alone to talk, decompress, and think through the coming days. I felt guilty about it at first. How could we take any time to enjoy a few moments when Eva and so many others need our attention? But I also know (and have been encouraged by friends and family) that we need to find a bit of time to ourselves to process everything. And that’s what we did. We explored the emotional impact of the last week. We remembered how we felt when we first started hearing bad words like “biopsy.” We took stock of how far we’ve come already. We marveled at the number of blessings we have received.

We’ve been dealing with fear of death this week—the kind you think of when you hear the phrase, “fear of death.” We’re literally afraid at the thought of losing a loved one. But we also recognize that the fear of death has been with us every day of our life, even before Eva was diagnosed with leukemia. We have often been afraid that we’re “behind on life” because we don’t have a certain amount of money, a certain standard of living, a certain measure of success. We have often been afraid that our children aren’t “on the right track” because they aren’t talking yet or they don’t read well enough or they don’t enjoy everything kids could possibly enjoy. We have often been afraid that we’re missing out on memorable trips, important memories, and other “quality time.”

What is that except the fear of death? How is that anything but the fear that our time is short? The fear we fear today is the same fear we’ve always feared, only magnified and intensified to the point where we finally realize we’ve been carrying that burden all along.

Time to lighten the load. The Lord Jesus has already conquered death forever by bearing our sin in his divine body and swallowing death’s power forever in the yawning depths of his suffering. Eva is baptized into Christ’s resurrection, which means death cannot hold Eva—or any Christian—any more than it could hold Jesus. Therefore we do not fear that our time is short, in fact, we’re quite certain that we will miss nothing. We will enjoy to an infinite degree the good our Father wants us to enjoy together, in fact, we will enjoy more than we could ever scrounge up in a single lifetime. We don’t pray that God give us more time, because the Father has given us all time by the saving ministry of Jesus Christ.

The concept of “forever” used to scare me. I found the thought of something that never ended to be a little unnerving. I think that changed for the first time in my life only five days ago. Now I can’t wait, because if these precious days are just a foretaste of the wedding supper of the Lamb, I’ll never want the real banquet to end.