Today I have to throw away the snowman.

For 5 years, we’ve had a snowman standing sentinel in our front yard. For 5 years, his lights have delighted our children and marked our home on cold, dark December nights. He’s made one more with us across town and survived being shoved in the shed and garage 5 times over. But two weeks ago, his head stopped working. The lights are going out. So it’s time to throw him away and move on.

Not such a big deal, right? Not for us – we throw away stuff all the time. But the snowman feels different.

I bought the snowman 5 years ago, 2 months after our little boy was diagnosed with leukemia. We bought him in the midst of being in and out of the hospital after we knew that we wouldn’t be traveling to see family at Christmas. We bought him because we thought it might be a small way to bring joy to a little boy who was in almost constant pain. And we put him right outside our big front windows so that Joshua, when he was too weak to walk up the stairs, might sit under a blanket and see him all lit up.

And he stayed lit up that year, every single night. We would bundle up and go for a walk around the neighborhood and my son would smile when we came home. He would point at the snowman and laugh.

Then the next year, when the treatments were still ongoing but had subsided somewhat, he was excited to get him out again. And we put him up, and there he stood for another year.

As I lay in bed last night thinking about everything that had to be done today to clean up after Christmas, my eyes got a little watery when I thought about the snowman. The snowman that had seen so much. The snowman who had brought our family joy in the worst of days. I thought about how much life has changed over these five years, and how even this year, with two more kids added to the mix and a cancer free little boy, they were still smiling as they picked out the place where he would go in the front yard.

There’s no big resolution at the end of this post; no big revelation that the snowman has brought me. Just a nostalgic feeling of thankfulness for small, common graces like the laughter of a child that has been brought about these 5 years by some pipe cleaners and wire hammered into the ground. And thankfulness for the ability to tell the story again to our kids of why we, for the first time 5 years ago, went to the trouble of decorating the outside of our house for Christmas.

Funny enough, I was filming some teaching for the Bible study version of the book about our son, our family, faith, and cancer on the anniversary of Joshua’s diagnosis. In fact, it wasn’t until mid-afternoon when someone reminded me that it was October 18th.

Funny how time flies. Or maybe not so funny. I can’t decide which. But I do think that now, 5 years on the other side of the diagnosis, it is a matter of God’s grace that the anniversary crept up on us. We were busy with swim team, barbque’s, riding bikes, and… living I guess.

This year, I’ve decided that instead of writing a post of brief reflections, I would just post an excerpt from the book that is releasing soon. Along with that, here are some links to the previous year’s posts.

Year 1

Year 2

Year 3

Year 4

It’s not that difficult to tell when someone has something they need to tell you but really don’t want to—you can almost always sense the news coming. It’s the same
feeling you have right before a news broadcaster interrupts the regularly scheduled programming for a special message. Or when your spouse is talking on the telephone to someone in grave, hushed tones, only to hang up and invite you to “Have a seat. I have something to tell you.” It’s that feeling where you hold your breath without knowing it and you feel your heart beating inside of your head.
Dr. Collins had ordered a blood test after examining Joshua; while the blood test came and went I tried to keep a 2-year-old preoccupied in the prison-cell sized examination room. We played with trucks. Then we played with a lot of medical instruments that I’m sure we weren’t supposed to touch. Joshua ate one strip of his sandwich. Then the doctor came back. He sat across from me. Looking at him, I subconsciously held my breath. My heart started beating in my head. Why was I nervous? We had been to the doctor before. But something was different this time. Then he started saying words that I never expected to hear: “hematology”; “children’s hospital”; “call your wife”. Then he said the word that would become part of our everyday vocabulary at heart-breaking speed: “leukemia.”
What do you do with a word like that? How do you respond? What questions do you ask? I didn’t know; I still don’t know. But I think I do know that there are some words in our vocabulary that are heavier than others. They are the kind of words that linger in the air long after they are said. They echo in your mind and pierce your heart over and over again, and when they are first spoken, they drop to the pit of your stomach like lead. Leukemia.
Two hours later Joshua was still playing with his trucks, but he was playing with them on the floor of an examination room at Vanderbilt Children’s Hospital. My wife had joined us and we were waiting for the results of a secondary blood test they had done. We didn’t speak. We didn’t cry – much. We hoped, we tried to pray, we wanted to believe. And then we had another “sit down” moment.
Amidst Joshua’s truck sound effects and laughter, we heard the confirmation that our 2 and a half-year-old boy had a childhood cancer of the blood. And it felt as if someone had punched me as hard as they could in the gut. Leukemia. There was that word again, and there was the lead-heavy residue in the air. It echoed in my heart.
Over and over again the words punched. The emotion welled behind my eyes until I thought my head would explode. How could 82% of his blood cells be affected? He’s playing with trucks! How could he have cancer? I made him a sandwich this morning! And it wasn’t just the emotion that throbbed; it was the questions. So many questions that I didn’t even know where to begin.
There were the questions you’d expect:

“Is Joshua going to die?”

“How can he be sick? He looks fine!”

“Isn’t it just a rash?”

“How do you treat leukemia?”

“What does this mean about the future?”

But then there were the other questions:

“Why this little boy, God?”

“How could You let this happen?”

“Is this punishment for something we have done?”

“Are You even real?”

Joshua finished his sandwich, and I started to cry. I cried because there he was, eating his strips of PB and J the same way he had hundreds of times before. And while he ate, I wondered how many more times he would…

Preorder your copy of Wednesdays Were Pretty Normal here.

If you’ve hung around the blog for very long, you’ll know that our son, Joshua, was diagnosed with leukemia at age 2 and underwent 3 and 1/2 years of chemotherapy. The book is part memoir, part reflection on the nature of faith in the midst of suffering. Here’s the first few paragraphs from chapter 1:

My son likes his peanut butter and jelly sandwiches cut into long, thin strips. It’s a little extra effort, but every time I make him a sandwich I spread a thick layer of peanut butter on one piece of bread and an equally thick layer of jelly on the other. Then I mash the two onto each other, bringing together the classic blend of sweet and salty, and I cut off the crusts. I think that I read somewhere that the crust is good for you, like the skin of potatoes, but Joshua doesn’t like them. At 6 years old, he hasn’t grasped the need for nutrition yet, and sometimes I count it a moral victory that he’s getting in his fruit group from the jelly side, so I don’t press the crust issue. Then I cut the sandwich into 4 long, thin pieces.

His name is Joshua Michael Kelley—not very original, I know.  When he was born in 2004, “Joshua” was the third most popular name for boys in the United States; “Michael” was second most popular. No points to us for creativity.

But we didn’t consult the lists for trendy names during those days. We named our first-born child “Joshua” for two reasons. First and foremost, we loved the name. We thought it inspired strength and conviction. We still hope the day never comes when his name gets shortened to “Josh”—I think that shortened version takes away from the power of the original. We wanted him to be named Joshua—the whole name, with the whole meaning. That’s the second reason for our choice.

“Joshua” is a Jewish name, and while we have no physical Hebrew lineage, we resonate with the meaning behind the name: “The Lord is Salvation.” Being a family of faith, we enjoy the implication of the name and hope that someday he’ll grow to appreciate it as well. We want Joshua to live a life in which he knows who God is, and is confident in himself because he’s confident in God. We don’t necessarily expect him to be a tremendous scholar, or someone of great prestige or fame (though watching my son play for the Atlanta Braves would be just fine with me). No angels came down out of heaven to make a grand prediction about his future. But we do want him to walk in confidence, knowing that God is salvation—nothing else. Even in hopeless times, that God is salvation, regardless of what career or family track he chooses.

So that’s the name we went with. We decorated his room in blue and red; we had a picture framed commemorating his name and the meaning behind it. And we expected to live happily ever after. I’m sure that in 2004 we imagined Joshua standing up for his moral convictions throughout his teenage years. I think we hoped that he would choose to believe rather than doubt as he made career and educational decisions. We did not, however, expect the reality of life to come crashing into our insulated world as quickly as it did…

———-

We are really excited about the book being published and are thankful for the chance to tell our story in the hope that many people will be pointed back to the gospel in the midst of difficulty. Over the next few months, I’ll be sharing more about the book, including when you can preorder your first 10 copies for you and all your friends!

John Calvin wrote that, and I get it. Probably you do, too. But to really feel the weight of that statement, we must realize that an idol can truly be anything. Typically, we think of idolatry as something receiving undue weight, worth, and devotion in our lives. Sure, things like money or sex can become idols, but so can family. Or friends. Or church. We have an incredible propensity to twist good things into “god” things.

One of the tell tale signs of idolatry is when you begin to define yourself primarily by something other than Jesus. Sure, you know you’re a child of God and that’s the most important thing, but the marks of your self worth are found elsewhere. Your validation comes from your job or your home or your children. Idols abound, for we reveal that we are looking to these things rather than God for our satisfaction and worth. These things become the things that make us who we are.

They shouldn’t be. Jesus should. But it can get twisted around quickly. And without our knowledge. I offer myself as a case study in this respect.

It’s been five years since our 2-year-old was diagnosed with leukemia. That diagnosis resulted in a dramatic change in our lives, as you can imagine. For me personally, it meant a career change which proved to be very difficult. On the one hand, I was glad to grow up and get a “real job” in order to provide stability for my family. On the other hand, abandoning my dreams of being a career author and speaker was harder than I’d like to admit, for you see, I had come to find my self worth in the number of speaking events or writing assignments on my calendar.

For this reason I hated cancer. Not only because of what it did to my son, but because it stripped me of my marks of validation.

But not any more. Now (and this is particularly shameful to admit) I sense in my heart a growing dependence on cancer. I have found myself in recent days hoping that somehow the topic will come up in new relationships and conversations because the fact that I have had this experience makes me different.

Important.

Unique.

Valid.

And here we go again. The idol factory might shut down business due to recession for a while, but there will always be a reason to start up production.

The only answer for idol factories like me is returning to the Gospel. It not only reminds me that Jesus is what validates me as a person; it reminds me that there’s enough grace to hang a sign on the doors of the factory:

“Closed for business.”

Again.

Year 1

Year 2

Year 3

This year is a little different because Joshua took his last chemo treatment, after 3 and a half years of doing so, last December. So this year is the first one which includes post-chemo thoughts. To set the context, the doctors have told us that the first year a child goes off chemotherapy (from last December until a couple of months from now) is “the danger zone.” That means that most children who relapse do so during the first year they go off of chemotherapy. So even though the past 10 months have been chemotherapy free, we’ve gone to have check-ups every four weeks, and each time I’ve had a little pit in my stomach as we wait for the results from his blood test. Despite my misgivings, we are 10 months into the danger zone, and still cancer free. So onto the reflections:

1. It falls to us, as parents, to determine how much or how little of painful and difficult circumstances our children remember. Because Joshua was diagnosed and treated from age 2-5, he’s already forgotten so much of what happened. We have the responsibility in moving forward to decide what we help him recall. This is a task we pray often about, because the temptation is to let him forget it all like it didn’t happen. We don’t think that’s the right thing to do, which leads to reflection 2.

2. In all things, we are stewards. Not just money. Not just talent. We are stewards of our stories. And part of that means retelling Joshua’s story to him and to others so that we can remember the faithfulness of God.

3. Pain can either make you tender hearted or hard hearted. Make the choice, or it will always be the latter. I’ve found myself often secretly thinking, “You think you’ve got it bad…” and then dismissing the real struggles of real people off hand. That’s not how it should be in the kingdom of God. But sin is present at our most tender spots, which can take a heart that should be softened and turn it into a prideful, arrogant mess.

4. We don’t come by hope naturally. We must choose to fight for it. And it is indeed a choice.

5. I struggle with relinquishing control, and this is heightened in my relationship with my children. So many times I’ve wanted to charge onto the baseball field or the playground or the classroom and “protect” my son. Wisdom knows the appropriate time for parental protection. Faith allows a child to fail.

6. I continue to believe that our experience with cancer has marked us, and we will spend the rest of our lives viewing events through the lenses it has formed on our eyes. That might not even be a bad thing.

7. Though time brings perspective, it also makes you acutely aware of how hard things once were.

8. We have had much turnover in our relationships over the last four years. Our family have an inexpressible appreciation and admiration for those people in our lives who refused to be pushed out by constant trips to the hospital, teary conversations, and unanswered questions.

9. One of the greatest experiences I’ve had over the past year was picking up the tab for lunch for a family we saw that had wrist bands on from the children’s hospital. Generosity is an incredible remedy for personal pain.

10. Seeing children in pain, yet nonetheless able to laugh and play, is a very vivid reminder to me of both the greatness of God’s grace and the pervasive nature of sin.

11. There is never an inappropriate moment to ask the question, “What would the gospel say to this?” It’s not just about death and dying. Not just about heaven and hell. The gospel is meant to be brought to bear on all of life, from what you’re having for dinner tonight to the eulogy at funerals.

12. We don’t know why Joshua had cancer. I suspect we never will. I rarely ask the question any more. In moments of pain, I’m finding that though we might think we need to know “why,” we really need to know “who.”

13. There are some places spiritually a person cannot go without being aided by pain. That’s not to say I’ve been to those places. But I do sense that the people I would consider to have walked deeply with God all have some element of suffering in common.

14. Faith is not a once-for-all-time choice. It is, rather, a choice in the everyday moments of life. In this way, believing is work.

15. Too often we assume our vision for our lives is the right one. We then ask God to come alongside of us and bless the plans we’ve already predetermined for ourselves. But God doesn’t care too much for boxes like that.

16. Jesus is not safe. Oh, He’s good, but He’s not safe.

17. Likewise, He’s not arbitrary. He maybe maddening, confusing, disturbing – but He’s never arbitrary.

Here are the facts:

- Cancer is diagnosed in a​p​p​r​o​x​i​m​a​t​e​l​y 12,400 children in the United States each year.

- Leukemias and cancers of the brain and central nervous system represent more than 50 percent of new cases.

- Childhood cancer is the most common cause of death by disease for young people in the United States. A​p​p​r​o​x​i​m​a​t​e​l​y 7 children die every day of cancer.

- Currently, the US government allocates more than $300 million in funds to breast cancer, but kids’ cancer gets less than $30 million. Please don’t read me trying to say that other types of cancer research get too much; just trying to point out the difference in funding.

That’s why you should eat at Chili’s tonight. Because September is cancer awareness month, Chili’s restaurants all over the country will be donating 100% of profits from your meals today to St. Jude Hospital.While Joshua didn’t receive treatment at St. Jude’s, pretty much all the treatment protocols and research either have their source or are strongly related to this phenomenal hospital.

So go get some chicken crispers and a molten chocolate cake tonight.

Thanks for doing so.

When Joshua was first diagnosed with leukemia, one of the first things that happened was the insertion of the port. At least 3 times a month for the last 36 months, blood has been drawn and medicine given through it. It’s attached to a ventricle in Joshua’s heart and makes the taking of blood and receiving of medicine much, much easier.

Today it’s getting taken out. And Joshua, for his part, is more nervous about this than any of the poison that’s been put into his system over the last 3 years:

“They’re going to do what to my chest?”

“With a knife?!?!?!”

Funny. But God willing, he doesn’t need it any more.

UPDATE: Joshua’s surgery took about an hour. Port is gone, and we were eating M&M pancakes by 10:30. He’s pretty jacked about his “scar.”

But on Sunday, that all changed. The owner of the restaurant opened up the doors on Sunday to allow us to celebrate Joshua’s last chemo pill. Alongside Joshua’s best buddies and some of the amazing people who have supported us over these 3 difficult years, we counted down Joshua’s last five pills. He swallowed them like a pro and had a piece of cake as big as his face. As you can see from the video below, he’s still coming down from the sugar high.

Wow. That’s a milestone.

[youtube=http://www.youtube.com/watch?v=NHPIjNknh-M&feature=player_embedded]

Diagnosis Post

Year 1 Reflections

Year 2 Reflections

This year is a little different, because we are now, God willing, approximately 2 months and 3 chemo treatments away from being finished with chemotherapy. So here’s some thoughts 3 years removed from diagnosis day:

1. It’s easy to hide behind your pain. You can use cancer as an excuse for pretty much anything – poor job performance, callousness toward others, financial irresponsibility – you name it. But no good comes from hiding behind. Cowards hide.

2. I thought coming to this point in Joshua’s treatment would mean an end to fear, but we find ourselves grappling with a whole new set of fears. These are about relapse, social development, physical development, and issues later on in life. These fears, too, must be looked squarely in the eye and told the gospel.

3. No man ever collapsed from the pressure of one day. It’s only when we start adding the weight of tomorrow’s worries that it gets too heavy for us to bear.

4. The Lord, I believe, has a special measure of grace reserved for days like the one 3 years ago. You wake up on one of those days not knowing that this grace has been bestowed upon you; and if you did, you might very well want to give it back. Nevertheless, God provides it before we know we need it. And in that moment when the worst happens, we cry, we yell, we moan – but we keep on going.

5. It’s possible for time to pass both slowly and quickly at the same time.

6. I believe God is interested in healing Joshua. I also believe God is interested in healing our whole family. The difference is that we knew what Joshua needed to be healed from. It was only in time that we began to see that we were also sick.

7. Things will never be the same after this. And that’s not all bad.

8. The suffering and pain of children is, in my opinion, the clearest evidence of the devastation from the fall.

9. Our second child has never known a life without cancer. Our third child (God willing) will never know a life with cancer.

10. It’s very, very difficult to be someone’s friend as they walk through pain. To do so requires an enormous emotional investment, and it doesn’t happen by accident. Only by rugged and determined perseverance do people walk the road of pain together.

11. I believe it’s important to the Lord that the last 3 years aren’t something “we put behind us.” It’s important for us to remember, to tell the story, and to help our children remember, too.

12. Understanding is neither promised nor given in whole this side of heaven. The Lord is too wise and has His fingers in too many places to grant our small minds full understanding of the “why” of what He does and allows. However, there’s a difference, I think, between understanding and perspective. And while we don’t get understanding, the little moments when we see Joshua’s cancer being redeemed in a myriad of different ways in our lives and in the lives of others, that brings us perspective.

13. If you would indulge me, I’d just say that one of the greatest reflections I’ve had over the past 3 years is that my boy is unquestionably, absolutely strong and courageous. Like his namesake. He has been stuck with a needle 4 times as much as I have in his short life. He’s lost all his hair and grown it back. He has, without complaining, taken at least 12 pills every week for the last 150 weeks. And he’s done it with a smile.

I’m so proud of my son.

[CORRECTION: I made a calendaring mistake; Joshua's spinal tap and chemo is a week from today; not today. Sorry, Jana, that you had to be standing at the appointment desk at Children's Hosptial to find that one out.]

About midnight, Joshua woke up wheezing, coughing, and burning up. In leukemia world, the threshhold of fever is 100.5. If the fever goes beyond that, you have to head to the emergency room. Joshua’s was up around 102 so off we went.

The docs decided not to admit him to the hospital, so thankfully everyone is back home as I’m writing this. It was sort of jolting, since he’s been so healthy for quite a while, but also a reminder that Joshua is still undergoing chemotherapy for leukemia.

I remember the first year after Joshua was diagnosed when we were going to the ER at least twice a month. We had the routine down. But now we’re a little out of practice. Deja vu.

But we are hoping, as he goes back to the clinic this morning for another check, that everything’s on the up and up, especially since this is birthday week for the J-man.