The treatment plan

On Monday, December 19, Audra and I met with Eva’s primary oncologist to go over her future treatment plan for leukemia.

The strategy for the first phase of treatment was to overwhelm the disease and drive it into remission. God blessed the strategy with success—Eva is in remission. The strategy for the second phase of treatment is to strike the disease in a variety of ways to keep it from returning. In fact, the entire second phase of treatment is better characterized as a series of distinct therapies instead of a homogenous block of treatment. It’s like a one-two punch followed by an uppercut to knock the disease out, God-willing, for good.

Eva’s roadmap includes four treatment plans that will span the next six to eight months:

  1. Consolidation
  2. Interim maintenance I
  3. Delayed intensification
  4. Interim maintenance II

Consolidation (28 days)

On Tuesday, December 20, Eva began the consolidationphase of her treatment. Consolidation began with an intravenous dose of chemotherapy (the drug is called vincristine). Eva received weekly doses of vincristine during induction, but she will receive only a single dose of vincristine during consolidation. That took place on Day 1 of consolidation.

In addition to the dose of vincristine, Eva also received an intrathecal (in the spine) dose of methotrexate on December 20. She will receive the same dosage for three consecutive weeks—December 20, December 27 (today), and January 3. The intrathecal procedures require general anesthesia, or the “sleeping medicine” as Eva calls it. This means an early start to the day (check-in is at 8:00am and we have a long morning commute) as well as no breakfast except jello. Eva and I bring of our favorite activities to the clinic to pass the time until roughly 11:00am when procedures begin in the clinic. Following each procedure Eva must lie on her back for 60 minutes. After she wakes she breaks her fast with a snack pack the clinic provides (things like cookies and crackers) while she watches a movie on my iPad. After the 60 minute waiting period we are discharged and free to go home. Since we miss lunch our tradition is to grab In-N-Out Burger on the way home. Eva’s tradition is a cheeseburger with “salad” (that’s lettuce) and extra pickles. Pink lemonade is her beverage of choice.

The final component of consolidation is a daily, oral chemotherapy drug called mercaptopurine. Eva takes this drug on an empty stomach right before bed. The administration of this drug includes some additional logistical concerns. Eva must not have eaten for two hours prior to receiving the drug, so we must work harder to get dinner on the table earlier so that Eva can get to bed at a decent time. Otherwise we would have to wake her up later in the night to administer the drug. We are also required to exercise some additional physical precautions with the drug. I wear gloves when handling it, and Eva does not touch it with her skin. We put her pill in a disposable medicine cup and she pops the pill that way. These are over-and-above precautions for chemotherapy in pill form, but we are happy to be careful with the drug. The work she did learning to swallow pills in the hospital is paying dividends now—oral chemotherapy in liquid suspension is apparently a much bigger chore.

Eva will continue to take an anti-pneumonial drug throughout her leukemia treatment. She receives those pills in the morning and evening on Saturday and Sunday.

Interim maintenance I (41 days)

Each subsequent phase of treatment will begin after an initial blood test to determine whether Eva’s blood counts are adequate to handle the next treatment. I am unsure how much time passes between each therapy—I think it’s about a week or so. We can’t peg every day of these treatments to a calendar day until each therapy has officially commenced. We can, however, get rough estimates in terms of weeks or months.

Interim maintenance I consists of an intravenous dose of vincristine once every ten days (Day 1, 11, 21, 31, 41) along with an intravenous dose of methotrexate on the same schedule—every ten days. Eva will have a single intrathecal dose of methotrexate on Day 31, thus requiring the “sleeping medicine” for the spinal tap.

Delayed intensification (42 days)

Delayed intensification therapy will likely be the most difficult part of the second phase of Eva’s treatment. Delayed intensification is similar to induction, just slightly less rigorous. The purpose of this delayed intensification is to catch any leukemia cells that may have been dormant during induction. The strategy is quite clever and is based on years of careful research on the characteristics of leukemia and its recurrence.

Chemotherapy relies on cell division to be effective. This is why cancers such as slow-growing tumors are so difficult to treat—they don’t respond to chemotherapy very well because the cells do not divide rapidly. This is biological bad news for many cancer patients, but for acute cancers like leukemia this is good news—leukemia responds so well to chemotherapy because the cancerous cells divide rapidly.

However, some of the leukemia cells in Eva’s system may have been dormant during induction, that is, they may not have been actively dividing. Dormant leukemia cells would have dodged the metaphorical bullet of chemotherapy and steroids during induction. Such cells inevitably become active again, bringing the disease back. Delayed intensification is designed to strike any such stragglers when they emerge.

Eva will take steroids again, but not daily for 29 days—just for two weeks in a one-week-on/one-week-off pattern. She will receive intravenous vincristine on a weekly basis (Day 1, 8, 15) and intravenous doxorubicin on a weekly basis (Day 1, 8, 15). She’ll have a single intravenous dose of pegasparagase on Day 4. This is the dose that carries the higher risk of anaphylactic reaction. She’ll have a single intravenous dose of cyclophosphamide on Day 29. She’ll take an oral chemotherapy drug called thioguanine on Days 29–42. Intrathecal methotrexate will be administered on Day 1 and 29. Finally, she will receive two courses of daily intravenous chemotherapy called cytabarine on Days 29–32 and Days 36–39. If possible, Rady Children’s Hospital will send a home-care nurse to Fallbrook each of those days to administer the drug at our house. Eva will have her port accessed at the start of each course and it will remain in her body so that she doesn’t need a daily poke.

If that sounds like a lot that’s because it is. This period of treatment will cause Eva to lose the rest of her hair. She’s likely to need a transfusion during this time. She will also be at a much higher risk for infection, so hospitalizations are always a possibility. This treatment window will also take place during the Christian seasons of Lent and Easter. Nevertheless, this delayed intensification is a vital part of Eva’s path to a cure. We are glad for the effective treatment strategy developed through work with countless other cancer patients over the last few decades.

Interim maintenance II (41 days)

As the name implies, this phase is a repeat of interim maintenance I. See above.


If everything goes according to plan, Eva will finish her second phase of treatment and begin the third—maintenance. We don’t know much about the third period of treatment except that it lasts about two years and will have minimal impact on our life compared to the first nine months of Eva’s treatment. Her hair will grow back. She’ll go back to school. We can travel again. Eva will have monthly chemotherapy, and that will be very light. The maintenance phase is another part of the strategy to keep the leukemia from ever returning. Our life’s routines will be much like they were before Eva was diagnosed with leukemia.

Cancer treatment takes a long time, even the “fast” treatments like the one for leukemia, but the victory we enjoy as Christians will be delivered in an instant, in the twinkling of an eye (1 Corinthians 15:52). That doesn’t mean, though, that the victory was cheap or easy—it cost the Lord Jesus his life. Jesus is Immanuel, “God with us,” and he assumed for himself a true human nature at Christmas for our eternal good. The “Word became flesh” (John 1:14) that he might be approachable—even vulnerable to the death that plagues mankind. He took on the weakness of death that we, his fellow human beings, might receive his incorruptibility in exchange. This took place in time and space—in a manger at Bethlehem, on a cross in Jerusalem, and outside an empty tomb on Easter—but it was planned before time began. It is in this everlasting instant that we have our hope for a coming real time and physical place where all who hope in the Lord will live with the Lord “dwelling among us” forever.

Gifts and grace

We have received a mountain of gifts from far and wide ever since Eva was diagnosed with leukemia. Gifts are nice, especially at Christmas, but gifts present a spiritual challenge. Deep down we like getting things—that much is true, but deep down we don’t appreciate receiving gifts.

I want to earn or deserve what I get, not receive what are gifts of pure grace. I want things to come my way because I’ve been a good son, a loving husband, a faithful pastor—the grown up version of hoping the elf on the shelf has seen what a good little boy I’ve been.

So when my family and I receive gifts for no reason except that a cross-shaped trial has come into our life, I’m forced to grapple with the spiritual challenge of a true gift of grace. Not only have we done nothing to deserve such gifts (if we contribute anything it is only our weakness), but the suffering that has prompted them is a necessary part of Christian formation. Through our trial God has continued to empty us of ourselves that he might fill us with Christ, shaping us in his image and fitting us for our heavenly home.

To be shaped in the likeness of our Lord in his suffering would be gift enough, but we have also benefited through our suffering from the gifts of love and concern that have come from all manner of people far and wide. This is grace upon grace.

We bear a cross, yes, but we do not bear the cross alone. Only one person was required to bear the cross alone, and that was our Lord Jesus Christ. When he suffered, the darkness of evil was his closest friend (Psalm 88:18). The result is that we never bear the cross alone. When we suffer, we have innumerable friends supporting us and an all-powerful Friend sustaining us.

This surpassing gift is ours because of the gift given in the Bethlehem manger on Christmas long ago. Jesus Christ is the truest gift of grace—a Savior who rescues his enemies, a Counselor who suffers for us, a Prince who rules in mercy, a God who aches to dole out grace.

The light of Christ be with you all this Christmas.

Eva is in remission

This morning right before lunch Audra received a voicemail from our case manager, Mary, at Rady Children’s Hospital asking that we call back—the results of Eva’s second biopsy had come back from the lab in Seattle.

I returned the call to the case manager—heart pounding, adrenaline pumping—and got Mary’s voicemail. Ugh.

Thankfully, case managers stay right on top of things. Ours returned the call within five minutes. I stepped into the play room and closed the door behind me. “Thanks for calling me back so fast,” I said. The rest of the conversation went quickly. Mary said she had good news. The leukemia cells are gone from Eva’s bone marrow and her “minimum residual disease” number came back at 0%. The induction phase of Eva’s treatment was successful. She is in remission.

I choked out a couple monosyllabic words like, “yep,” “kay” and ”thanks” before ending the brief phone call. I opened the door to find Audra and Eva standing there. Tears in my eyes and a lump in my throat I just nodded my head, embraced my wife, and blurted something—I can’t remember what—to indicate that the news was good. After a brief moment we assured Eva that we were crying because the news was good. I got to my knees and looked her in the eyes to tell her that the leukemia was gone from her bones and blood—the medicine she worked so hard to take every day for 29 days had worked. She smiled a proud little smile. We all embraced.

The standard first course of treatment (induction) for acute lymphoblastic leukemia most commonly yields remission after 29 days. We had been hopeful for this outcome. We knew that this was the most likely scenario. We are glad to have our hope become reality. We are thankful for the work of physicians and cancer researchers over the last several decades that has produced such a rapidly effective treatment. That we are able to gain such unmerited benefit through the innumerable hours of study and practice invested in the medical vocation is a testimony to the grace of God. He uses human vocations as his instruments of mercy.

We are thankful that Eva is in remission, but remission does not mean she is “cured.” Remission means that there are no visible leukemia cells in her bone marrow and that the disease is not actively multiplying inside Eva’s body. Remission is awesome news, but Eva must still pursue the second (consolidation) and third (maintenance) phase of her treatment over the next two years. If we stopped now the disease would certainly return. Up next is consolidation, which will include frequent chemotherapy infusions for the next six to eight months. We don’t know what that treatment plan looks like yet; Eva’s physician will show us the roadmap at our consultation on Monday. There is still a lot of difficult chemotherapy in the future, the rest of Eva’s hair will fall out, and there is always the higher risk for dangerous infection and subsequent hospitalizations. Nevertheless, news that the induction treatment was successful is an important, positive step. Eva will remain at “standard risk” instead of going to “high risk” or ”very high risk.” We have some much-needed good news to carry us through the rest of the treatment. Things are looking up.

For now we will live between the “already” and ”not yet” that characterizes the Christian life. We already have the good news that Eva’s treatment has been effective to this point. But we are not yet able to enjoy the full results of this good news. That will take many years, and there remains a chance we will never enjoy the good news of a full cure for leukemia. We just don’t know yet.

In the same way—and more so—our Lord Jesus has already achieved the victory over death that animates the distinctively Christian value of life. But our Lord Jesus has not yet permanently inaugurated the eternal kingdom that he has promised will come. We know that death has already been defeated, but the time has not yet come for Jesus to wipe every tear from our eye. We live between the “already” and the “not yet.”

But this is not a bad place to be. The accomplished fact of the “already” makes even the “not yet” into genuine joy as God’s gifts of faith, hope, and love circulate in our lives already now.

Waiting for the future to come

Monday was the 29th and final day of Eva’s “induction” phase of leukemia treatment. On the agenda for the weekly clinic visit was an intrathecal (in the spine) dose of chemotherapy and a follow-up bone marrow biopsy. Both procedures were done at the same time under relatively light, general anesthesia.

I had been bracing myself for this day because Eva has been any procedure that requires anesthesia includes certain food and drink limitations. Eva had been on twice-daily steroids for 29 days, the primary side effects of which were a constant, ravenous hunger combined with volatile mood swings. The morning routine on day 29 includes no food from 5am until the procedure (sometime after 11am). We would have no way to alleviate the pains and expected that the moods would be extremely difficult as a result. In reality, Eva did a tremendous job. In fact, Monday’s procedure day was her most patient and well-regulated trip to the clinic yet.

The day started with an early departure from the house (about 7:00am) for the 8:00am check-in at Rady Children’s Hospital. Traffic was difficult that morning so we arrived a bit late, but not so late that it had any impact on the day’s schedule. By 9:00am Eva had her port access complete and blood drawn for lab tests. Then it was time to wait. Procedures begin at 11:00am, so we had a least two hours of time to pass with games and crafts while we watched Monsters University on the iPad. As I said, Eva worked patiently through her hunger and was in very cheerful spirits virtually the entire time. The day before the procedure she had told me, “I’m nervous about the sleeping medicine tomorrow, but for some reason I’m also excited.” She knew that this was a milestone and an accomplishment. I think she was looking forward to getting through the day as well as she could and being “done” with the first phase of her treatment.

Her procedure went quickly and before long she was back in our little “infusion suite” waking up from the anesthesia. Patients who receive intrathecal chemotherapy are required to lie flat for 60 minutes after waking up to prevent the common side effect of headache. The 60-minute rest is about the only treatment needed to mitigate the side effects of intrathecal chemotherapy. She munched on the snack bag they give after each anesthesia procedure and watched one of her favorite movies again, Ratatouille.

She was able to sit up again at 12:30pm and by that time the nursing staff had briefed me on Eva’s blood numbers and what to expect in the coming week or two.

The bone marrow biopsy they took on Monday will be tested to determine whether Eva is yet in remission or not. The current diagnosis on her chart is “acute lymphoblastic leukemia not having achieved remission.” We want the diagnosis updated to “acute lymphoblastic leukemia having achieved remission.” The results of the biopsy will help to determine the course of Eva’s future treatment. If she is in remission, which is the most likely scenario, she will continue on the treatment protocol for “standard risk” patients. If she is not in remission, she will begin a treatment plan for “high risk” or “very high risk” patients.

We will most likely have to wait until next Monday, December 19, to learn the results of Eva’s biopsy. It seems there are two reasons for this length of time to determine the results. First, only part of the test is done at the local lab in San Diego. The results that the local lab can rapidly determine indicate if someone has leukemia (thus they can diagnose the disease from these quicker tests), but the result that can accurately determine remission status requires more time to physically process, prepare, and interpret. Second, the marrow is shipped overnight to a lab in Seattle for that part of the test, adding a shipment day to the timeline. Nevertheless, there remains a small chance that they will have the results back by Friday, in which case we have asked that Eva’s managing physician call us with the results. Audra and I differed on that decision. I preferred to learn the results at a set date and time (Monday, December 19 at 2:00pm is the appointment), while Audra wanted the option to know as quickly as possible. We agreed to accommodate her preference on the matter. Now we wait, we watch, and we pray for the results of Eva’s biopsy and, more importantly, for the old order of things to pass away.

You see, on Monday Eva and I got to see the future. We caught a glimpse of what it will be like in the future, how it will be when the old order of things passes away. As we waited for Eva’s procedure there came laughter and singing to interrupt our anxiety. Down the hallway stood a bare-headed little girl surrounded by smiling faces—her family and most of the clinic’s nursing staff grinned ear to ear as they sang new words to the familiar “Happy Birthday” melody:

No more chemo for you,
No more chemo for you,
No more chemo, dear name
No more chemo for you!

Eva and I happened to be in the hallway at that moment heading to the restroom, so she saw the whole thing. And she most definitely put two and two together. She knows what the bare-headed kids mean. She is well aware that will soon be her new look. But she also knows why that girl was smiling at the end of the hallway—she was finished with her tough medicine, ready to start growing her hair back, and about to get her life back again. All the whispers of assurance she had heard in the last year had just come true.

That little girl is Eva’s future.

We know this because the Lord Jesus has already made it known. In Revelation 21 the Lord Jesus says from his throne that “he will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

Moments like the celebration in the clinic on Monday are the light of future glory bursting through the cracks of this fallen world. These glimpses of God’s healing providence are the rumors of truth rippling through reality from the throne room of the ascended Jesus himself. Once you see them you can’t unsee them, once you hear them you can’t let them go—they are everywhere, and like the stars in heaven these healing deeds of the Lord are meant to proclaim his glory and point you somewhere.

These glimpses of light and rumors of truth do not point you to your own seemingly good life or the seemingly good lives of others. Even the greatest stories of virtue and the most moving accounts of healing come from human beings irrevocably corrupted by sin. I realize that there is nothing very popular about the biblical teaching of sin—who wants to be told they are corrupt, broken, and doomed? But can we come to any other conclusion? Especially if we are weighing the evidence responsibly? So far it seems to me that every human alive today will one day be dead. And while we live each of us fails to do the good we wish we could do and continue to do the evil things we wish we could avoid. Something is not right. It seems to me that the ones who are really bringing the bad news are not the ones who accurately diagnose the problem of sin, but the ones who deny the mountain of evidence in front of us that proves we are sinners, and therefore we sin, and therefore we die.

The glimpses of light and rumors of truth are meant to point you somewhere outside your own story, because your story ends in death. They are meant to point us to the one who is and who was and who is to come—God in flesh, Jesus Christ. the one whose story ends in life and who wishes to bring you into the same story.

It was he who came at Christmas not to be the cute and cuddly reason for the season, but to be the stand-in for every sinful human being. He who had no sin—he was God, of course—became sin for us. Every corruption of your sin was laid on him and it lead where we know sin always leads—to death.

But death could not hold him because death has no power over him. It’s quite the opposite, really. Christ burst the chains of death and showed hundreds of eyewitnesses what it looks like when the old order of things passes away, when he wipes away every tear from every eye, when human bodies pass through the grave clinging to Christ by faith. And he has assured every Christian—in writing, no less—that he who has passed from death to life is the only way to do the same.

Eva will pass from death to life no matter how her leukemia treatment ends. Her future is found in Christ and Christ alone. Her future is the future we know awaits all who hope in the Lord. And the sound it makes is the sound of parents laughing and nurses singing. It’s more than that, even, it’s the sound of divine joy as the Lord himself announces on the last day:

No more crying for you
No more crying for you
No more dying, dear Christian,
No more dying for you.

The sick are getting better again

Yesterday was Eva’s latest visit to the clinic in San Diego. The nursing team handled accessing her port quite quickly. Eva was anxious about it, but not nearly as much as the first time we had an outpatient port access. Last week was pretty brutal; this week she just let out one, sharp, surprised scream when they poked it in and then she was done. No real crying other than the one shout.

The rest of the visit was spent mostly waiting. The normal procedure is to draw blood right away and send it to the lab for testing. The lab at Rady Children’s Hospital can produce results quite rapidly—usually within an hour. They’re awesome. But, an hour in an exam bay is still an hour in an exam bay. The physician or nurse practitioner (NP) won’t authorize the chemo dose until the blood work is back and they have had a chance to consult with the patient and her caregiver.

On Monday the NP was running late by about 45 minutes on Monday, so by the time the chemo dose came we had been in the clinic for about two hours, not including the hourlong commute. Eva was out of emotional patience by this point, so she screamed quite loudly at the “flush” process, even though it’s quite easy relative to the port access she had just handled so well. But, before long the chemo dose was finished and we were packing up and heading home.

Eva didn’t feel all that nauseous that afternoon and evening, but she still took a brief nap on the couch and took it pretty easy the rest of the day. She’s been in a fine mood overall, but we can tell how the steroids are taking their toll on her even as they destroy the leukemia cells inside her body. Eva has gained a noticeable amount of weight as a side effect of the steroids. She’s also bloated and looks generally uncomfortable. You can sense that moving around is more difficult for her. I’m not even sure she knows why, just that her body doesn’t seem to move the same as it used to. While this side effect was predicted, we’re glad to be in the final week of induction, the final week of twice-daily steroids.

Next Monday, December 12, is the final day of induction and the day of a pivotal bone marrow biopsy. The biopsy on that day will tell us whether Eva is in remission. We are, of course, praying fervently that we receive news of remission that week. The results of that bone marrow biopsy will determine the course of the second phase of Eva’s treatment, called “consolidation.” We haven’t gotten many hints about what consolidation looks like except that it lasts about six to eight months, depending on how the patient handles the chemotherapy. We know that Eva will not be on regular steroids during that time, so her weight will begin to return to her pre-induction levels. We also know that her immune system will be much stronger, so we will be able to go to public places with her again. She’ll be able to get out of the house and become more active again.

To be honest, though, all these details matter very little to me at this time. Knowing what treatment is coming doesn’t help me at all. I’m fixated on hearing the results of that bone marrow biopsy.

I’ve compared the emotional process of Eva’s leukemia treatment to those big buckets you see at water parks, you know, the ones that slowly fill with water until—whoosh—a thousand gallons of water come crashing down. Audra and I each have emotional buckets that slowly fill until—whoosh—a thousand gallons of pent-up weight comes crashing out. We’re trying to get a sense of the pattern of these emotional breakdowns, like measuring the time between contractions or something, but for the most part the big blasts have been relatively unpredictable. We just know that they come from time to time. We try to talk through them. We react as best we can.

I feel as if there has been an even bigger bucket filling this entire month, and it’s going to crash some time next week when the doctors phone us with the results of Eva’s biopsy. I almost want to ask that they not tell us until we sit down with them for our scheduled “consolidation” consultation on December 19. We realize that even if Eva is not in remission after induction it does not mean she won’t still recover. To be quite honest, we don’t actually know what it would mean for her treatment if she’s not in remission yet, just that the physicians would react accordingly. I just want to hear that she’s in remission. I just want to hear that everything is going to be ok. The big bucket’s going to dump and I want a thousand gallons of relief.

On Sunday I’m preaching on Matthew 11. John the Baptist had sent word to Jesus to ask, “Are you the one who is to come, or should we expect someone else?” John was yearning for some good news in the midst of his trial. He needed a salve for the wounds of doubt. He wanted relief. His lips had faithfully proclaimed the good news to others, now he needed to hear the good news on the lips of others. The Lord provided.

Jesus said, “Go back and report to John what you hear and see: The blind receive sight, the lame walk, those who have leprosy are cleansed, the deaf hear, the dead are raised, and the good news is proclaimed to the poor.”

Jesus didn’t direct John to his intuition. Jesus didn’t ask, “What does your heart tell you?” No burning of the bosom or quiver in the liver is going to help John. John craves something real, something tangible—he needs to know that God keeps his promises. So Jesus told John how God was keeping his promises.

That the blind would see, that the lame would walk, that the lepers would be clean—these were the promised signs that God had said through the prophet Isaiah would signal that the long-expected relief had arrived. Immanuel, God with us—finally!

John asked, “Are you the one?” Jesus answered, “I am.” And John could know for sure because—look!—sick people are getting better again. Just like God promised.

Jesus plowed through the rough seas of a dying world and left waves of healing in his wake. His spit could make mud powerful enough to restore sight to the blind—no wonder his apostles testified that in him dwelt all the fullness of deity in bodily form. This was by design. Jesus demonstrated convincingly that he was, in fact, who he claimed to be: God in human flesh, the Lord and Savior of all, the One who is to come.

Jesus left no doubt about his deity and divine power by himself dying and rising from the dead again. But this was no parlor trick to impress the easily impressed. No, he died to do in full what he had done in part through his miracles. On the cross he swapped places with sinful mankind—with you—to raise us from our spiritual death and restore our religious sight. He died to make sick people better again, just like God had promised for generations.

Jesus has already demonstrated his power over disease and death. Reliable eyewitnesses have written it down for us. We need no more signs to confirm our faith in him. We have enough to know that he is, in fact, the One to come. He is ours and we are his. Eva is the sick one who will be better forever. Of this there can be no doubt.

But, God, we would love for you to share a little taste of that healing now to tide us over until the feast to come.

Eva’s identity

Yesterday we had Eva’s hair cut short. Really short. This was the first step toward losing all her hair. There’s no easy way for this to happen, but they say the shorter hair means less big clumps of hair on the pillow in the morning or in the drain after a shower. It’s supposed to make a hard thing easier.

A member of our congregation, Carmen, provided the haircut. Carmen is a stylist and a cancer survivor herself. She can relate to the emotional distress of a woman (or girl) losing her hair. Audra went alone with Eva to have the hair cut while I stayed home. I watched Eva closely before she left. She seemed eager to go to the salon, but not in the “I’m excited for this” sense, rather it was the “let’s get this over with” sense.

Normally a trip to the big chair at the fancy salon is a treat for a little girl. This time Eva just cried. Carmen had to gather her emotions before she could make the big snip on Eva’s long pony tail, the one braided so often into an “Elsa braid.” Audra choked back tears. Carmen made the cut. Eva screamed. Everyone cried for the rest of the haircut.

The haircut is an adorable little bob. It’s seriously cute, and it looks great on Eva. But it’s not how things are supposed to be. Within a few weeks we anticipate that all or most of her hair will be gone.

In a very real sense this haircut wasn’t really a haircut, it was another procedure, another poke—not to the skin but to Eva’s sense of identity.

Identity is a tough topic. Who we are, our “identity,” really matters. Now, most of the thinking about identity today uses the first person singular: “I identify as…” Then you fill in the blank. For the 21st century American, identity has become something you pick for yourself and image is something you preen before snapping a selfie. We’re curved in on ourselves—not only figuratively, but quite literally. Just check Instagram.

While today’s vocabulary about identity is something novel, there’s nothing really new to humanity about finding identity in one of your traits. “So, what do you do?” is our casual conversation starter because in our culture a person is defined by their career. We signal our status by the car we drive or the clothes we wear. Which school your kids attend says something about who you are and what you have accomplished. And, of course, men and women are also defined by their outward appearance (and it does seem that the pressure in our culture is greater on women).

So, what does that mean for Eva? Why does she keep asking, “What if kids make fun of me because of my hair?” She asks that question because mankind has fallen from its true identity and definition. She asks that question because ever since Adam and Eve fell into sin mankind has been consumed with finding identity in anything and everything but God. Now our altar is the mirror and our sacraments are in the makeup drawer; style is salvation and youthful looks are the closest thing we have to eternal life. Eva’s in-born religion is being weighed in the balance and found wanting.

She, like all of us, are are caught in a paradox—we are simultaneously told to identify ourselves by some trait inherent to us while also refusing to be defined by some trait inherent to us. One minute we’re told to embrace who we are—loud and proud, baby!—and the next we’re told to throw off the shackles of identity—stick it to the man!

What can we say to people caught in this trap? What can we do for people pulled back and forth in our culture’s schizoid philosophy of identity? Specifically, how can we teach Eva something important about who she is through her loss of hair?

Audra can say, “Your hair doesn’t make you who you are,” but Eva will still see Audra putting all sorts of time and energy into her hair morning—the very thing she said doesn’t make someone who they are. In the same way, just saying, “Don’t worry, it will grow back,” is nothing all that special—not really, anyway. Mere replacement of what’s lost doesn’t alleviate the emotional pain. (And, side note, pointing out that daddy is bald doesn’t help either. Eva just laughs and says, “That’s normal for boys.”) Ultimately, what needs replacing is not Eva’s head of hair, but her heart’s desire. She needs to remember that her identity isn’t something that comes from her, but from God. And that’s what we told her yesterday.

We told her about inner beauty, the kind that doesn’t come from “outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes” (1 Peter 3:3). But even more than that, we told her where that kind of perspective comes from. We reminded her of her baptism.

Jesus and his apostles taught something remarkable about baptism. Baptism is not just an outward sign of how committed you are to God, it’s an effective means by which God demonstrates how committed he is to you. The apostolic writings are quite clear: baptism “saves you by the resurrection of Jesus” (1 Peter 3:21). Baptism is, for the sacramental Christian, our very identity. It is at our baptism that God named us and claimed us, not the other way around. Baptism is how we live at all. The apostle Paul testifies, “We were therefore buried with Jesus through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life” (Romans 6:4).

That is Eva’s identity—she is in Christ, she is God’s own child. And even when Eva hardly had any hair (she was only a few days old) God adopted her as his own child through baptism. Eva the newly born became newly dead in Christ so that one day she will be newly resurrected to eternal life. God named Eva as his own that day and she has been precious in his sight ever since. And she always will be—hair or no hair. Her story is not really her own anymore. Her identity is not in her traits, but in God’s faithfulness. God curved her away from herself and toward him instead. She belongs to her Savior now, and her Savior shed his blood so this could be true. I have no fear that God would abandon anyone for whom he paid such a price.

Hear our prayer

Eva had lab work done today at Rady Children’s Hospital in San Diego. Eva’s blood draws have usually been done through the arm, wrist, or hand—today was no different. She wasn’t happy about the poke, but she also didn’t cry all that much at the poke. The process is actually quite rapid. The nurses work quickly and before long Eva has a band-aid on her arm. Then we wait for the lab to analyze the blood. Rady Children’s Hospital has a lab on-site that can deliver results rapidly. It took about 45 minutes of waiting (while doing crafts and watching Ratatouille) for me to get word that Eva’s blood counts did not require a blood transfusion. We were free then to pack up and head home.

It was about 12:30pm when we left the hospital, which meant we needed to get lunch. Back when Audra first took Eva to the emergency department at Rady Children’s Hospital she had promised Eva that they could get In-N-Out Burger on the way home. Eva’s been asking for that trip to In-N-Out ever since. She asked again today. So we pulled through the drive through. Eva got her usual—a cheeseburger with lettuce (which she calls “salad”) and extra pickles.

Tonight after dinner we took time to get caught up on opening care packages. We had received so many care packages at such a hectic time that we had a backlog of close to a dozen boxes and large envelopes of gifts. I have been writing and sending thank-you notes as promptly as I can, but I probably still have four or five dozen cards left to write. That is not a complaint. All these gifts have revealed to us how far and wide our network of friends and family extends. God has knit us together with all of you in ways we didn’t know before Eva’s leukemia diagnosis.

We are particularly moved by how many people are praying regularly for Eva. Prayer is a frequently misunderstood and often debated topic among Christians. People wonder, “Does prayer really work?” How do you define prayer that “works”? Some say prayer works when you can say, “God gave me what I asked for.” I’m not so sure that’s right, though.

I’ve found John Kleinig’s distinctively Lutheran perspective on prayer to be quite valuable. In his book, “Grace Upon Grace,” Kleinig emphasizes that Christian prayer is primarily receptive in quality, that is, prayer is ultimately not our work but God’s work. He points out that many Christian prayer books emphasize our effort to become victorious prayer warriors at the expense of Christ and his work on our behalf. Kleinig points out that, ultimately, prayer is not exerting our own power, but “borrowing” the power of the King himself, power that Christ offers to share with us. We cannot offer any hope or healing on our own, so we “borrow” from the Father and offer it up in prayer. In that sense, nothing could be more effective than Christian prayer because Christian prayer reflects the relationship we have by faith in Christ. We are given the status of son because we are in the Son.

In spite of these heady truths, prayer remains difficult—especially in trials. It has been hard for me to pray about Eva, not because I don’t want to or because I don’t think it’s worth doing, but because prayer naturally brings my deepest longings and fears to the surface. Prayer empties me of my own strength so I can “borrow” the Lord’s strength.

This last Sunday I returned to the pulpit at my Lutheran congregation in Fallbrook. I was glad to preach again and happy to see the faces of so many people who have persevered with this congregation through some difficult years. I had assumed I would become emotional during Sunday’s service at some point, but I figured it would be during the sermon. I was wrong.

Our prayer on Sunday involved a series of petitions covering various topics. I stood at the altar and read the few sentences of each petition, concluding each one with the phrase, “Lord, in your mercy.” The congregation behind me answered in unison, “Hear our prayer.” We prayed for Word-wrought guidance in life. We prayed for peace and life. We prayed for healthy Advent spirituality. We prayed for contrite hearts and joyful forgiveness. We prayed for our daily vocation. We prayed for right use of our money and time. We prayed for opportunities to proclaim the good news. We prayed for life after death. Each time I bid, “Lord, in your mercy,” each time the congregation replied, “hear our prayer.”

We also prayed for the sick and suffering. This is when I broke.

“Merciful Lord, comfort those in pain of body or spirit.” I had to stop because I had barely choked out the words. I can’t believe this prayer is about my family. I fought for what felt like an eternity until the clenching in my chest let up. Then I resumed.

“Relieve those who suffer, and give healing to all in need.” I stopped again, because this prayer included a fill-in-the-blank exercise. “Relieve those who suffer, and give healing to all in need, especially _________.” I’ve filled that blank with dozens of names in the past, but now I have to fill the blank with Eva’s name. I clenched my hands to compose myself—again, for what seemed like forever—before blurting out the name.

“Especially Eva Bassett, and those whom we name in our hearts. According to your gracious will, answer the prayers of your people who cry to you for answers, sustain them in the day of trouble and grant them patience in their afflictions.” Another full stop, because now I’m asking for myself. I cry to the Lord for answers; I want to know how this will end. I need you to sustain me. I need patience in my affliction. Thus continued another pause pregnant with grief until I could blurt out in trembling voice, “Lord, in your mercy…”

I had collapsed across the finish line of that single, anguish-filled petition, but the congregation of believers picked me up. They cried in unison, “Hear our prayer!”

I can’t say I was fully composed from that point on, but I finished the rest of the prayer in the strength of those voices that echoed my petition and carried me through to the end. My prayer was theirs and theirs was mine. One of our own is sick, we want to know how it ends, and we need the Lord to sustain us.

This unity of spirit found in congregational prayer was but a tiny glimpse of the sublime reality underneath it that day. As fervently as we may pray, the Lord Jesus intercedes for us even more so. In fact, he has been interceding for us—for Eva, even—since before the world began. He is with us at all times, lifting us up in prayer—not amplifying our own spiritual strength, but giving us a share of his mighty power as Son and heir of the kingdom. He paid for this privilege with his own blood on the cross, he has made us partakers of this power by the work of the Holy Spirit that he has sent, and he connects us then to the Father who directs all things toward blessing for his children. We receive from him, we “borrow” his power and ask that he support Eva and all of us with it. And because we are his blood-bought children, we know he will answer in mercy when he hears our prayer.

So, Lord, in your mercy, hear our prayer.