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.