No more chemo for you

Monday was the last chemotherapy appointment of Eva’s two-plus year cycle of leukemia treatment. And because the doctors don’t need to administer chemotherapy through Eva’s port any longer, they’ll surgically remove it from her chest on Friday morning, January 11. And then on January 18 we won’t give Eva a morning dose of home-administered chemotherapy drugs. The whole phase of active treatment will be over. Monthly checkups will be on the calendar for a time, then bimonthly, then quarterly, then annual. The whole thing gradually fades into the rear view mirror.

I’ll admit to feeling a bit of anticlimax in the days and weeks leading up to Eva’s last chemotherapy appointment. The diagnosis of cancer was such a precipitous occasion it warranted the all-out effort any crisis deserves. But the conclusion of what had become a new normal hasn’t had quite the sense of bigness to it. The day seemed to be suddenly upon us and the moment we had been waiting for just came and went.

Audra took Eva to the clinic for her last appointment while I came a bit later with the rest of the kids in tow. Lily had prepared a large, hand-drawn sign for Eva that said, “Eva’s Done!” Theo and Clara “drew their names” on it as well. We got a big mylar balloon and then went to surprise Eva at the clinic.

Our plan was to surprise her during the end-of-chemo ritual at Rady Children’s Hospital in which a team of nurses sing “No More Chemo For You” to the “Happy Birthday” tune. The patient then rings a bell to signal their completion of the treatment protocol. But because the flu season restrictions were in place (no extra visitors allowed in the treatment area) and because some other patients had more urgent needs, the little ritual took place in a more subdued manner outside on the lovely clinic playground.

Four nurses came out and sang the song, Eva rang the bell. She received some gifts. One of the physicians congratulated us. Hugs were offered. Tears were shed. It was a nice moment.

Part of me felt as if such an occasion should have felt “bigger” or something, but upon further reflection I can see why it felt the way it did. Normalcy is supposed to feel, well, normal. Eva’s diagnosis was the sudden disruption; the treatment has been the gradual restoration — first achieving remission, then maintaining it, then moving on to the healing and growth the follows. More than two years of effort yielded not a sudden jolt but a soft, uneventful landing at the end. I suppose that’s the way you’d want it to end — with a warm hug.

A long time ago I wrote about the time Eva and I witnessed another cancer patient hearing the song, “No More Chemo For You.” At the time I called it a look into our future. Eva saw a girl whose body had been visibly affected by the treatment but whose face beamed with the smile of someone whose life had been saved and whose labor was now finished. On Monday that glimpse of the future finally came true for us, too.

Sometimes I wonder what the consummation of Christian hope will be like. The change will be dramatic, of course. Christians united to the death and resurrection of Jesus will themselves be resurrected to enter life that is different in quality and quantity. One can hardly imagine a more dramatic change.

But maybe it’ll all feel normal somehow? Won’t the resurrection, after all, be a restoration of how things were meant to be from the beginning? Perhaps when we enter the glory prepared for us it’ll be more like a soft landing than a sudden jolt. We have, in fact, seen this future in Jesus. After his resurrection he was recognizable to his friends and seemed to want nothing more than to sit with them, talk with them, and eat some fish.

I don’t know exactly what the resurrection will be like, but I do know it will happen. In Jesus Christ we have been given a glimpse of the future and all baptized Christians have received the Holy Spirit as the down payment of a future that will surely come true. Just as it came to pass with Eva as a foretaste, so it will come to pass in an ultimate way.

But for now we’ll be content to enjoy Eva’s positively bouncy mood. She knows that she completed a major milestone. She knows that a burden has been lifted. She knows that the load will get even lighter in the next few days. She’s happy and so are we.

Praise the Lord, my soul; all my inmost being, praise his holy name. Praise the Lord, my soul, and forget not all his benefits—who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion. (Psalm 103:1-4)

A double-trip to Rady Children’s Hospital

Another lengthy amount of time has gone by between updates about Eva. The reason is mainly this—there isn’t a whole lot to report except that Eva is going about a normal routine as a normal kid. She’s going to school. She’s playing at the park. She’s going on walks. She’s visiting the zoo. All normal things.

She also continues to take oral chemotherapy every day along with monthly visits to the clinic at Rady Children’s Hospital for a chemo infusion. This is our “new normal.”

Last Monday, February 5, was another one of those normal monthly visits to the clinic. I accompanied her that day. Everything went as expected, which is to say it went well. Good “counts” on her blood test: good immune system, strong hemoglobin, everything in order. She received her infusion and we headed home. Eva had a fun rest of the day and was as active as she would be any other day.

By the evening, though, she reported feeling not too well. Audra took her temperature and discovered she was quite suddenly running a fever of 101 degrees. You may recall that fevers are closely watched in oncology patients since they are an early sign of infectious disease. Infectious disease is particularly problematic for patients with any kind of compromised immune system. While Eva’s immune system is relatively strong in this phase of her treatment, mandatory protocol requires that we treat any fever with special attention. If her temperature reaches 101 or higher it is a required trip to the clinic (during business hours) or emergency room (outside business hours).

So off Eva and I went down the highway to Rady Children’s Hospital for the second time in one day. It was outside business hours so we were heading to the ER. When we first told Eva she had a fever she cried (the prospect of visiting the hospital is never fun, especially when it carries a chance of admission overnight). We reassured her of the reason for the trip to the ER and explained that her fever was not her fault. Audra put her in the warm shower so she’d be clean and comfortable in the ER. During her shower, Evas cheerfully asked us to call the doctors to tell them that the shower was making her feel much better and perhaps she could stay home. I had to tell her the hard fact that no matter how well she felt, what mattered was the reading on the thermometer.

We walked into the ER and virtually every seat in the waiting area was packed with parents and small children wearing masks. It’s the height of flu season these days. (Indeed, several young people in the area have tragically died of flu complications this season.) Thankfully, oncology patients are triaged immediately to a smaller, more secluded waiting area. We waited probably a little more than 30 minutes before being seen.

The first step was to access Eva’s port again—another poke on the same day. The ER nurses have plenty of experience with the process, but they don’t have the daily habit that the clinic nurses do. Unfortunately the two nurses helping us failed to get a good access the first time. They spent several minutes trying to get the needle they poked into the port to “return” properly, that is, to allow blood flow out and fluid flow in. Poor Eva was already exhausted and this pushed her over the top. She cried out again and again, “I want to go home! I don’t want to be here! I can’t do this anymore!” It broke my heart, but I had to hold her in my lap until the nurses decided to try a second time.

I also felt for the two kind nurses. They were probably as distraught as Eva was, but they were utterly professional about it. The nurses at our children’s hospital are consistently amazing. They were quite upset at themselves for not having gotten a good access the first time. And, truth be told, this happened once even in the main clinic where the nurses have daily practice with accessing a port.

The second time was the charm, but by this time the numbing cream we had applied to Eva before leaving Fallbrook had mostly worn off. The topical cream stays on her port area for the entire drive down, but the nurses wipe it away when starting the port access procedure. Once the ointment has been removed the effects begin to wear off. So, by the time the first attempt had run its course and the second poke landed, Eva screamed and said it was the worst it had ever hurt. Clearly the pain level was higher than she was accustomed to.

Once she was settled in after the troublesome port access she was able to relax. We both composed ourselves with a long hug. She watched some TV shows and played some games. I read a book. The doctor visited and gave her a quick physical examination. They administered an intravenous antibiotic and some Tylenol. Eva’s heart rate was elevated so they gave her some intravenous fluids as well. After more than an hour of waiting for drugs to drip into her system Eva asked me to read her a story, which I did. Within minutes she had fallen asleep. About 45 minutes later the doctor had given us the all-clear to head home. We had arrived to the hospital at about 8:00pm. We left at about 12:00am. As I buckled her into the back of my car, Eva smiled at me sleepily and said, “Thank you, daddy, for taking me to the hospital.”

The fever did not return the next day, and her blood test results came back negative. Whatever caused the fever was in and out of her system within hours.

The trip was another rude reminder of Eva’s not-so-normal health status. We’re glad for the due diligence and agree completely with the protocol, but an unplanned trip like this one brings back the sense of helplessness that so characterized the early days of Eva’s diagnosis. This can only ever drive us back to the arms of the one who rules over all things—including this trouble—the Lord Jesus Christ. He is Eva’s redeemer in both body and soul. The maladies that seem to define Eva’s life do not rule over her. There is no tyranny in the kingdom of Christ, only mercy and a gracious reworking of all things for a good that transcends all things. This is our source now and our end forever.

A year later

It’s kind of hard for me to pin down an “anniversary” day for Eva’s leukemia. Is it the day she went to the hospital? The day they first warned us what they thought it was? Or the day she was officially diagnosed?

For me it’s about remembering different phases of the whole month. I want to write more about those experiences now that a year has passed. I want to remember them so I can regain the benefits of those days.

For Audra it was really about November 10, 2016. So I’m sharing something really nice that she wrote and posted to Facebook yesterday.

It’s November 10th. A day full of memories. It’s an anniversary of a different sort. Not the kind you celebrate with a babysitter for your kids and a glorious date night. But also not the kind where you clear your calendar and curl up on the bathroom floor sobbing. I don’t know how to honor this day. Celebrate it? Ignore it? Carry on with a nod to it, affirming it’s here? That it came? That it passed? That life continues? I really am not sure what’s best. Truth be told we are flying by the seat of our pants on this journey.

And so I write. Because my heart is full and I don’t know what I am supposed to do about this day. However, I can tell you just about every detail of what my day looked like one year ago – on November 10, 2016.

Eva and I had spent the night before at Rady’s for the first time together. I remember waking up and thinking about the last time we had spent the night together in a hospital room — the day she was born. I remember thinking how the two visits were so different.

I remember we had a shared room that first night on the third floor at Rady’s. Her roommate was a girl who had an emergency appendectomy. I remember the girl’s mother asking me around 8:30AM how Eva was doing and what was wrong with her. I remember having an uneasy feeling in my stomach when I smiled politely told her we still didn’t know.

I remember how morning rounds were at 9:22 that Thursday morning. I remember looking at the clock and inwardly giggling and feeling like Grey’s Anatomy when a team of doctors, residents, fellows and an attending came and crowded around Eva’s bed. I remember being embarrassed because I had slept in my clothes. I hadn’t showered or even brushed my teeth. I hadn’t even gotten to take my contacts out. Because we weren’t supposed to be there. It wasn’t supposed to be an overnight stay.

I remember that there were 9 of them – her medical team that morning. I remember counting. They told me that they really couldn’t say what was wrong with Eva. They knew that her leg hurting was not a bone infection. The day before they had done an ultrasound. A CT. An MRI. A massive panel of labs. All showed no bone infection. They told me they it was mysterious. They thought it was just a strange response to an infection her body was still fighting off from a fever she had had in late October. They told us they were discharging us and we were going home before lunch.

I remember how Caleb came with the other kids around 9:45. I remember how crazy it was in that tiny room with so many people – but how it also felt like a fun little memory. Home before we knew it. I remember a sweet friend send balloons and a little craft from the gift store. I remember taking the twins on walks to get them out of the room so it wasn’t crazy for Eva’s roommate.

I remember coming back from one of the walks and turning into Eva’s room. I saw Eva’s doctor and the resident that had been assigned to her case. They were at the nurses station right by our room. I overheard them say “That’s mom” as they looked in my direction. And I knew they were talking about me because I was the only one in the hall. I remember how the night before I had asked the resident if they had ruled out everything ‘scary’. Like cancer. I remember how the night before she told me they had.

I remember that at 11:07 that same doctor, her fellow and the resident came into our room. They brought with them a volunteer who they said would watch all of our kids for us while they talked to us about taking Eva home. As we walked to one of the sitting rooms, another lady joined us. The 3 of them were chatting with us – just chit chat. Normal. The room overlooked the playground at Rady’s. Caleb and I were seated so we could face out – look at the view of the city. You can see airplanes landing. Cars. There are multiple freeways that converge near Rady’s – it’s a busy area. But beautiful. The tops of the eucalyptus trees – and everyone is moving. Life is bustling around you as you look out those windows. I remember what I was wearing.

I remember glancing as the clock as they closed the door. It was 11:10 when the doctor started talking and she told us they thought Eva had leukemia. That she had blasts in 76% of her bloodwork. That while they couldn’t be certain medically speaking until after they had done a bone marrow draw – that they were going to request that bone marrow draw to verify what the were pretty certain of. And that they wanted to schedule to have a port placed in Eva’s chest. The other lady that wasn’t a doctor was a social worker. I now know if a social worker ever joins you in a meeting with a doctor… it’s going to be hard.

I remember it being a fairly quick meeting. I remember them being kind. I remember holding Caleb’s hand. I remember crying, but not sobbing. I remember thinking that these rooms should really have legit Kleenex and not scratchy hospital tissues. That they should really splurge for those private rooms that they reserve for the worst news. I remember them leaving and telling us to take our time. I remember sobbing then. I remember what we did when they left. What we said. I remember the world outside that window – below us still moving. I remember us understanding that our news wasn’t certain, but I remember it already being certain for us. We knew. I remember us needing to still take care of our 3 healthy kids who were going to need lunch and their parents in about 5 minutes.

I remember them moving Eva immediately to her own room. Still on the third floor (not the oncology floor). But her own room since in their eyes she was already an oncology patient who needed no germs. I remember calling a friend and asking her to watch the twins for the rest of the day. I remember meeting Eva’s oncologist that afternoon. I remember making a plan of how we were going to tell family. Friends. How we were going to tell Lily. And how we were going to going to tell Eva. When. I remember when it was my turn to call my parents. My friends. I remember instructing every nurse. Every doctor. To not say cancer. Or leukemia. Because we hadn’t told Eva yet why she was not going home.

I remember all of the details that make up this day. And I can tell you that this year as October has waned and faded into November, my heart has been a mix of heavy and joyful. The oddest mix. An anniversary I both want to celebrate and can’t bring myself to. Why would you celebrate the hardest day of your life? But then again, why wouldn’t you? We are here. We are one year on the flip side. I did not see us here last year at this time. But yet I knew we would be here.

I wasn’t really sure what to do about today when I woke up this morning. I knew thinking of November 10, 2016 would be painful yet wonderful. That acknowledging those memories would bring healing in their own way. That seeing it all written out staring me in my face would also be therapeutic. Getting my feelings off of my heart. Putting words to the emotions. Reflecting. Reliving. Crying. Praying. Moving forward.

And so I wrote today. I see you November 10, 2016. I acknowledge what you were and what you mean. And November 10, 2017? You are completely normal. You are getting donuts + hot chocolate and watching planes together on a Friday morning before a morning full of normal-we-aren’t-in-the-hospital-errands. And planning a fancier than normal family dinner tonight. Because we can.

November 10th. It’s been 365 days. A full year. A year full of grace. A year of being on the flip side. 

The problem of liver enzymes

Eva is in a monthly pattern of maintenance chemotherapy now. This phase is what we pray will be the final phase of her treatment before she goes to what they appropriately call, “off treatment.” Barring any complications, maintenance chemotherapy will continue until January 2019.

The maintenance pattern revolves around a monthly visit for a chemotherapy infusion, but that’s not the only chemotherapy she receives. She also takes a daily chemotherapy pill, plus an additional weekly chemotherapy pill of a different drug. This pattern of long-term treatment is part of the regimen designed to keep leukemia from recurring.

But there can be challenges, and for a while it looked as if we might be on a collision course with one. At Eva’s August and September visits her blood work came back good overall, but showed troubling increases in liver enzymes. Without going into all the details, it’s enough to explain that her daily chemotherapy can put a strain on the liver as it does its job of detoxification. Eva’s physicians monitor signs that the liver is either being damaged or is somehow falling too far behind in its job of processing the toxins inherent with chemotherapy. Eva’s August numbers were high enough to get the attention of the physicians. Then Eva’s September numbers increased dramatically—more than 60% along the way toward the upper limit at which point the doctors would order a temporary suspension of her chemotherapy regimen. Needless to say, stopping chemotherapy would decrease the effectiveness of Eva’s treatment.

The now-monthly pattern of blood checks meant that the anxiety over how her liver enzymes were progressing was stretched out over weeks, not days. We were anxious for her October visit, which happened to also be on the same day that we were leaving for a much-needed family vacation. Audra and I were bracing ourselves for the possibility that our vacation would kick off with troubling news, but thankfully Eva’s numbers came back much, much better. The most troubling count had dropped significantly, so that now instead of being 60% toward the limit, Eva’s numbers are sitting at about 10% of the limit—a more than manageable figure.

That October visit was also another “procedure day,” which is the day she requires anesthesia (a.k.a. “sleepy medicine”) for a spinal chemotherapy injection. This, again, entails fasting the morning of, leaving the house at about 6am, and waiting patiently until procedures begin at 11am, and then waiting patiently until its her turn, then recovering for an hour, then driving all the way back home. Yet Eva did wonderfully the entire visit. She was calm and in control during the “poke” in her port—something we have been working on with her and a child counselor. Even during the administration of the “sleepy medicine” she was far more calm. She acted as if she was bracing herself for a shot, but she did not burst into tears or scream as she had often done in the past.

Her handling of the appointment struck me as a moment where I felt both proud and saddened. I was proud of the progress she’s made in emotional health during these tough months, but I was saddened at the thought that she even has to learn how to handle things like port access and intrathecal procedures. We’re fast approaching the one-year anniversary of when Audra first took Eva in to the hospital and that nightmarish November began. Eva’s been at this for a year now, and still has more than a year left.

This Sunday at my congregation we’re considering the Reformation theme, “Christ Alone.” Of course, one important aspect of that Reformation truth now proclaimed in the Lutheran church is that we have nothing to offer God that could possibly bring us closer to peace with him. There’s no point in us that can serve as the spiritual fulcrum of a lever meant to lift us higher. It is on account of Christ alone that we can approach God in repentance and faith and produce the fruits of peace and love.

But another aspect of “Christ Alone” has become clearer to me in the past year. When it comes to finding strength in the face of suffering, it is Christ alone who offers it. The death and resurrection of Jesus Christ is unique in all the world’s ideas and events. In Jesus we have more than a God who is powerful but aloof, on the contrary, we have a Lord who himself met us in our suffering so that by his death he could heal us who were doomed to death. He’s been where every sufferer has been—and beyond, so that one day for all who believe in him the days of suffering will be over.

I run to Christ when torn by grief
And find abundant peace.
“I too had tears,” He gently speaks;
Thus joy and sorrow meet.

Text by Chris Anderson

Starting Maintenance

It’s been a long time since I’ve written about Eva. So many people have told me in person how much they enjoy the updates that I do feel quite bad for failing to keep the news moving. I can’t quite say for sure the reason behind the hiatus, but I’m glad to end it.

The big news for Eva is that on Thursday, June 29 Eva had the last clinic visit of her frontline treatment. We were looking forward to a non-eventful period of time leading up to her starting the long-term maintenance phase of her treatment on Monday, July 17. But, we had a couple of bumps along the road.

On Monday, July 3, Eva was running a fever of 101 degrees by late afternoon. The medical policy for oncology patients like Eva is that any fever of 101 or higher requires a mandatory precautionary visit to Rady Children’s Hospital. If the oncology clinic is open they will see you there, otherwise you have to go to the emergency room for observation.

To make matters a little worse, I was in a car accident literally at the same time when Eva needed to head to the hospital. The accident was relatively minor. I was the only one driving when a commercial van pulled out of a residential driveway and struck me in the moving minivan. I was unharmed, but the minivan had to be towed to a body shop for extensive repairs. The minivan is our only vehicle, so I took an Uber ride home and called a member of our congregation who quickly provided us with a vehicle. Audra left for the hospital as quickly as she would have even if I had not been involved in an accident.

The first visit to the ER involved observation and lots of questions. The trip concluded with a dose of antibiotics and instructions for Eva to get rest. Audra got home that night at 1:00am. The next morning Eva had no fever so we concluded that whatever was making her sick must have passed. But as the day went on her fever returned until it crossed the 101 threshold again by dark. That night I drove Eva down the ER. Everyone was disappointed to miss our family visit to see the fireworks, but Eva got to see a number of fireworks displays out the car window as we drove through the Escondido and San Diego suburbs.

The second visit to the ER involved further test, including blood work, a nasal swab, and a urine culture. The goal of these precautionary visits is to progressively test to determine what exactly is causing the fever. If it’s normal, run-of-the-mill stuff, they can send the patient home. But if it is something more serious, such as pneumonia or a central line infection, the medical team wants to know as quickly as possible. This is the sound rationale behind the 101 degree policy.

After all those tests were taken they sent Eva and me home again. We returned to our house at about 1:00am again. Eva slept in quite a lot the next day and her fever never returned. We got word that day also that Eva had been diagnosed with RSV, a fairly common virus that causes moderate cold symptoms—including fever. We were glad to hear that the problem was nothing she couldn’t tackle on her own with rest and time.

We were frustrated, though, with our reaction to the whole thing. Audra and I became very anxious very quickly and we didn’t treat each other with much patience or empathy. It had been such a long time since any sort of setback, and this was also the first time Eva had to go down for a fever check during her entire frontline treatment. I think we were frustrated that this little issue came up precisely when we thought we were starting the home stretch. I think we were also scared because these setbacks inevitably bring all of our previous fears to the surface. It’s shockingly easy to imagine the worst.

Eva remains in great health, though. Her blood counts are consistently strong and her energy levels are completely normal. She’s been taking swimming lessons, going to our church sports camp, hitting the beach with her friends and siblings, and much more. All is quite well.

She also crossed a major milestone on Monday, July 17. She had her first treatment of the long-term maintenance phase. The almost-weekly pace of chemotherapy has become a once-per-month visit. Virtually all of her medically-imposed limitations have been lifted. She can go about her life almost as normally as she could before leukemia. We’ll still maintain extra vigilance, but she is allowed to swim, fly in airplanes, spend time around other kids, and do most normal “kid things” again. It’s a great sense of freedom after so many months of staying close to home, avoiding crowds, and saying “no” to tons of fun ideas. We even got a vacation on the calendar for October. We really need one!

Maintenance is all about a monthly rhythm. “Day 1” of the month is her regularly scheduled monthly visit. (She’ll have a “Day 1” each month.) On that day she’ll receive some sort of chemotherapy treatment—usually an infusion of some kind. Every three months she’ll also have a “sleepy medicine” procedure, which is the intrathecal (in the spine) injection. On the evening of Day 1 each month she’ll start taking a daily steroid pill, but only for five days (not daily for a month like during induction, or for most of a month like during consolidation). She’ll also have a daily chemo pill to take at home through the entire maintenance phase. We even have an “end of treatment” date on the calendar: January 18, 2019

Eva’s anxiety levels can still be high, especially at certain points of her visits. We anticipate that the sharply reduced frequency of visits will help her regain some sense of calm and control. We have also scheduled regular visits for Eva with one of the child psychologists at Rady Children’s Hospital. She’ll work with Eva through play therapy to build a rapport and help Eva to address some of her anxiety. We’re also dialing back the “be careful” language in our house. Eva’s genuine interest in keeping clean and healthy sometimes appears to cross into fear and obsession. We’re having to remind her that she doesn’t have to be as careful as she used to now that her immune system is not under the same duress it was during the past half-year or so.

At this point our biggest fear is relapse. Although the likelihood is relatively small, there is always a chance that the leukemia could return. It’s hard to even mention it because the thought of slipping back to the days of a fresh leukemia diagnosis is terrible. Nevertheless, we cannot live in fear—nor should we. Eva has received excellent treatment with tremendous results. She has demonstrated resilience throughout the process. Our family worked hard to support her health as much as possible. God has blessed our efforts beyond even our hopes.

As Christians, we often find it hard to grapple with Biblical concepts like “heaven” or “eternity.” We can only really describe these things by pointing out what they are not. I used to feel that such an explanatory method was inadequate, but I think that has changed. I now know what it’s like to have genuine, deep-seated fear. Those fears surface time and time again, especially when a temperature runs over 101 degrees.

It’s impossible for me to grasp the kind of fear that the Lord Jesus endured on the cross. The terror he faced in bearing my sin (and the sin of the world) cannot be described except to say that it was equally infinite and real. It was that terror that brought a new reality for me and all believers in him—he has consumed every fear so that in his kingdom there is no fear. Relapse cannot terrify us because relapse will not have the last say—the death and resurrection of Jesus Christ does. He is making all things new, including us, including Eva. Jesus didn’t die to let something like cancer win the day, he didn’t rise to let something like fear govern our hearts.

Hats for Eva

Now that Delayed Intensification is well underway, Eva has received her next three doses of a drug called doxorubicin. This is the drug that will cause the rest of Eva’s hair to fall out. In fact, yesterday we started to notice more and more clumps of hair coming off her scalp.

I had mistakenly expected that Eva’s hair would come out pretty quickly after she began chemotherapy in November. Therefore I had immediately asked my sister-in-law, Jessica, to prepare an wish list of cute hats for Eva. Jessica has always had a good eye for kids hats. However, as it became clear that Eva’s hair would not fall out until much later in the treatment, I set aside Jessica’s list for future use.

I think now’s a good time to share it.

Several people have sent hats already over the past few months—thank you. Those hats have been well-loved and will be used even more often in the weeks to come. To be clear—we don’t need hats, but receiving hats in the mail is a fun way for Eva to cope with the loss of her hair. If you would like to send her a hat, please take a look at the Amazon wish list. If you have questions, please contact either me or Audra (you can try Facebook, or use our email address).

We will continually remind Eva that her hair (and her hats) are not the source of her value, identity, and beauty. Her hair (and her hats) are but gifts of love from a God who values Eva with his own life, who has identified Eva as his own child, and who has endowed Eva with the beauty of God’s image. And most of all, we will continually remind Eva that the promise and purpose of her Lord is to restore not just her hair, but her whole being in the new heaven and new earth Jesus has promised: “Behold, I am making all things new.”

Hats for Eva wish list →

Delayed Intensification

Eva has begun the cycle of chemotherapy called “Delayed Intensification.” I outlined the various cycles of treatment in a previous blog post, but I can offer a bit more detail about delayed intensification now that we are in the midst of it.

The purpose of delayed intensification is, as the name implies, to intensify the chemotherapy after a set period of time following remission. Since the goal of Eva’s treatment is curative, that is, is to prevent the leukemia from ever returning, the treatment plan is designed to eradicate any and all leukemia cells that may be lurking within Eva’s body. The current phase is meant to ambush any straggling leukemia cells that may have started to multiply again after the initial induction treatment and achievement of remission.

It seems that there are differing opinions on how this cycle compares to the intensity of induction in terms of difficulty for the patient and her family. We know that this phase is intense for a number of reasons: Steroids resume, new drugs will be administered, and there are certainly a lot more appointments on the calendar. However, Eva will take far fewer doses of steroids than she did during induction, she will not be required to spend a week and a half in the hospital as she was during induction, not to mention the fact that she is in remission during this cycle while she was not during induction.

Perhaps what makes Delayed Intensification challenging is more the delay and not the intensity. During Consolidation and Interim Maintenance I we had settled into a pretty nice routine again. With Eva handling chemotherapy so well overall we had been able to take a few day trips outdoors to enjoy the beautiful spring scenery in Southern California. We took walks in the mountains, in the desert, and along mountain rivers far from crowds but surrounded by fresh air and a spring bloom. Now—suddenly but not unexpectedly—we are back to greater intensity and more limits. Even though the phase is forward progress in treatment, it feels a little bit like going back to the stressful and fearful days of induction.

We also know that this phase brings a greater likelihood of hospitalization for Eva. The treatment in this cycle will proceed regardless of her blood counts. This means that Eva’s immune system will not only be weakened, they won’t stop treatment if it gets too weak. While not necessarily likely, a hospitalization for a fever during this phase is not uncommon. She may need a blood transfusion again, too.

The treatment began on Monday, March 20 with a fairly standard clinic appointment for intravenous chemotherapy. Eva received another dose of a drug she has received several times before—vincristine, a common chemotherapy agent. She also received her first dose of a drug called doxorubicin. Eva has still not yet become seriously nauseous after her chemotherapy infusions; she only complains of mild stomach discomfort on the days of her treatments. We administer Zofran and the symptoms go away promptly.

The fourth day of the cycle called for Eva’s second overall dose of a drug called pegaspargase, or “peg.” She had received her first dose of peg while still in the hospital. We knew that the dose carried with it a greater likelihood of anaphylactic allergic reaction. Patients usually handle the first dose well, but the subsequent doses often cause a reaction. Eva handled the first dose well—there were no signs of allergic reaction. Her second dose, however, on March 24, caused an anaphylactic reaction.

Audra was with Eva for the appointment, and while we knew a reaction was common in up to 40% of patients, the reaction itself was very unsettling. Families with food allergies would understand well what anaphylactic reaction is like. Eva reported a strange feeling on her skin and in her throat, which quickly progressed to difficulty breathing. Eva began crying out, “I don’t want to die! I don’t want to die!”

While Eva perceived mortal danger and the scene was disturbing, she was not in genuine peril. The clinic prepares in advance for allergic reaction before all doses of pegaspargase. Countermeasures are always at hand and at least one nurse stays with the patient through the entire dose. Eva received immediate treatment, and the doctor calmly said to Eva, “You are not going to die.” Audra comforted Eva throughout the process. Within minutes the physical symptoms of the reaction had dissipated. After a period of rest, Eva came back home for the day, but without her dose of pegaspargase.

Some have asked why the clinic would administer a drug that carries such a high incidence of allergic reaction. There are several good reasons why.

First, the drug is effective at destroying leukemia cells. Pegaspargase stops cancer cells from leaching a vital enzyme from their neighboring, healthy cells. Without the enzyme, the cancerous cells perish. For this process to be effective, the effects of the drug must persist in the body over the course of approximately two weeks.

Thus the second reason the drug is used: the formulation of peg that patients receive first uses a molecule structure that causes the medicine to have dissipate in the body over a full two weeks. It is the same useful molecule structure, however, that also leads to a high rate of allergic reaction.

The alternative version of peg does not stay in the human body for two weeks; it remains for only about two days. This means that patients who react to the preferred formulation of peg must receive a total of six replacement injections over the course of two weeks. Furthermore, those injections involve two large, painful shots in the legs.

Thus the third reason the drug is used: the main formulation of peg avoids six additional injections, and therefore avoids additional pain as well as six additional chances for a treatment to be missed. In fact, Audra suffered a flat tire on the way to the second replacement dose! Thankfully we got her on the road again quickly with a second vehicle so she was able to make it to the clinic in time for treatment. (Eva also said, “I always wanted to see a flat tire, and now I have!”)

So, the lingering effects of Eva’s allergic reaction are mainly in our schedule (a clinic day on Monday, Wednesday, and Friday for this week and next) and in Eva’s emotions. She has been afraid at bedtime that she might have another reaction while she sleeps. Overall her mood is quite good, but she had to work through more frequent bouts of anxiety. Getting two painful shots in the leg three times a week for two weeks wore her down. Remarkably, though, she came home from each appointment in a pretty good mood and got right to playing with her brother and sisters.

Yesterday we finished those two weeks of additional appointments and now Eva has about a week off with only lab checks, no chemotherapy. She’ll resume after Easter.

On one occasion in the life of Jesus he and his disciples came upon a man who had been born blind. The disciples of Jesus asked a question we all ask when we come face-to-face with suffering—why? Of course, when you read the account of their words in John chapter 9 you find that they thought they knew the answer already—someone had done something wrong to deserve it.

Jesus answer is not the neat and tidy answer that we often seek—we either want it to be God’s fault or our fault. Instead, Jesus said, “This simply means God has work to do.” Then he restored the man’s sight with what seems to have been a deliberate reenactment of God’s creation in Genesis: he made new eyes for the man out of dust.

The miracles of Jesus have taken on a new character for me since Eva was diagnosed with leukemia. Jesus’ miracles do more than offer evidence of his claim to deity. The recipients of his miracles were far more than people who caught a lucky break. Jesus’ miracles were recorded, as the apostle John says, that we should believe that Jesus of Nazareth is the Son of God, and that by believing in him we might have life in his name.

Suffering in this life show us God has work to do, and the miracles of Jesus show us what God’s work is all about—he makes all things new. The promise foreshadowed by his miracles is that no ailment in this life can outlast the creative power of Jesus. Why? Because the sin that causes all this corruption has been decisively defeated by Jesus. Suffering is defeated by suffering, death is undone by death, and new life, new creation, and reliable hope are the happy results for all who believe.

A Minor Setback

Eva continues to proceed through the treatment cycle called Interim Maintenance I. The plan calls for doses every ten days instead of the weekly treatments she has had since the beginning. We have enjoyed the slower pace of this cycle. Eva didn’t have to go to the clinic at all last week, and her blood counts numbers at her most recent clinic were so good that the nurse commented we could probably get outside with her if we wanted to. We took advantage of the opportunity and during the week we paid a visit to Joshua Tree National Park for a nature walk and the San Diego Botanic Gardens for some more exploring. It was a nice week and felt like a welcome return to normalcy.

This week was to start with a Monday dose of vincristine and methotrexate. Audra took Eva to the clinic instead of me because of my travel plans for an upcoming meeting. The clinic didn’t go as planned. Eva’s ANC (a number that reflects the strength of her body’s ability to provide an initial fight against infection) was about 480—the lowest we have yet seen it, and below the threshold required for her to receive her prescribed dosage. Not only that, since she is below 500 any fever would require mandatory hospitalization as a precaution.

As Audra kept me posted on the news via iMessage the old fears came rushing back along with the angry sense of uncertainty. This is the emotional whiplash other cancer survivors have told us about. One day the condition suffocates, the next it pierces—either way it’s uncomfortable. I’m actually writing this post on a flight east. The last time I made this trip I had to rush home to discover my daughter had leukemia. This time I will anxiously watch and pray that Eva’s immune system stays strong.

The doctors and nurses assured us that nothing about Eva’s numbers are a genuine concern to them. They see this all the time, especially when children start receiving methotrexate. Apparently that particular drug hits ANC counts pretty hard. The plan is to have Eva lay low and let her body recover a bit before another clinic appointment on Thursday. If her counts are still low they will administer only the vincristine and delay the methotrexate further.

I’ve titled this post “A Minor Setback,” because that’s what it seems to be. Her leukemia is not back, nothing like that at all. This is part and parcel of chemotherapy. Eva’s body has so far handled treatment so well that I had forgotten just how rigorous chemotherapy is. Today was a jolting reminder that what Eva’s doing isn’t easy, even if the whole process is starting to feel routine.

In the end, I’m glad for this little reminder. It’s a gentle prod from God to keep in mind the values that have short half-lives when life goes well. Gentleness, kindness, patience, love—these gifts radiate when we bear the cross, but when the weight of the cross is lifted they seem to dissipate. Tempers flare, patience runs thins, love that reconciles is replaced with anger that nurses grudges.

Thanks be to God for the cross of Christ! The Son of God stretched out his hands to die for the sins of the world and remove from all who believe in him and him alone the genuine threat of an eternity worse than annihilation—an eternity of existence without no gentleness, with no kindness, no patience, no love. Jesus was roughly beaten that we might have God’s gentleness, Jesus was roundly insulted that we might have God’s praise, Jesus was rushed to injustice that we might have God’s righteousness forever, Jesus sank into a hellish sea of hate that we might sail on the winds of his love.

His cross has pardoned me for my flaring temper, my thin patience, my grudging anger—for all my sins. Now the cross that sets me free also shapes me. He presses it into my life by the work of the Holy Spirit. His gifts radiate once more. He loves me. He loves my family. He loves Eva. And if he has done so much to bring us these gifts then he will surely not fail to bring them to everlasting fulfillment.

Considering our circumstances

Tonight concluded the “Consolidation” phase of Eva’s leukemia treatment when she swallowed her final dose of oral chemotherapy. Tomorrow I will take her down to the clinic at Rady Children’s Hospital for a routine draw of blood. If her blood counts look good (and we expect they will), she will begin the next phase of her treatment on Wednesday, January 18. That phase is called ”Interim Maintenance I.” I have described the nature of these therapies in a previous post.

People ask how we’ve been doing during these last few weeks. My answer is usually something like, “We’re doing alright, considering the circumstances.” That reply doesn’t really say much because there doesn’t seem much to say. The immediate crisis of a life-threatening diagnosis has been replaced with what seems banal by contrast—changing diapers, cutting pills, and mediating arguments. To borrow biblical language, things are neither hot nor cold, but lukewarm—spitting temperature.

Each phase of Eva’s treatment has begun with a doctor handing us a list of drugs and their most common side effects. We are thankful that Eva has been spared virtually everything on those lists, but we are learning about the side effects you can’t quite quantify on paper.

Perhaps it has been cabin fever from the frequent rain (which we need), or perhaps it has been the frustration from my stubborn cold (which we don’t need), but for whatever the reason there has been a certain pall over us lately. We’re tied pretty tightly to the house, disallowed for medical reasons from the places we once frequented. Things that were always “yes” have turned to “no.” Tactics that formerly turned the tide of a day breaking bad are either impossible or ineffective. The generous amount of patience that the crisis had generated in me has all but dissipated and I don’t like the way that feels. Bad days often tally into worse weeks. These days there is no single setback, no definitive burden that defines our story, just the background noise of daily cares. We’re in “maintenance,” which is about as boring a category there is. We’re stuck in the middle—not in danger, but not out of it either.

I trust this is what it’s like to climb out of the valley of the shadow of death. Things are warming up, but the chill remains. The crest is ahead, but there’s still a good piece left to travel. And walking ahead of us is a Shepherd. In his hands are the rod that guides and the staff that comforts. In his hands are the nail–scars that testify to the truth that he has walked this path before us and did so for our eternal benefit. We fix our eyes on him. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. We consider him who endured…so that we will not grow weary and lose heart (Hebrews 12:2-3).

So, considering our circumstances, we’re doing alright. But considering our Savior, we couldn’t be better.

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.