First, a quick update on Harrison’s treatment.

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Today was a scheduled LONG day, requiring about 6-7 hours of chemo following a spinal tap for methaltrexate injection. The chemo itself takes only about 30 minutes but is preceded by 2 hours of hydration and followed by another 4 hours of fluids. The reason for the fluids is to be sure the chemo is flushed from Harrison’s bladder to prevent infection.

Harrison goes home accessed so Ginger and I can give him chemo at home the next three days. A nurse will de-access him at home on Friday. Same routine next week.

Previously I mentioned The Emperor of All Maladies: A Biography of Cancer . I read it in two days. This well-written and well-documented volume tells the story of the treatment of cancer over the past two thousand years or so. Central to the story is leukemia. I absolutely loved the book, and plan to read it again in the next week, skipping the chapters on solid tumor cancers.

How the book ends is fascinating, the author tells the story of Gleevec’s discover and use. He ends the chapter, and really the book, expressing hope that Gleevec will one day be used to treat leukemias other than what it was originally intended to treat.

Gleevec is the drug that has put Harrison into remission, and is central to his treatment.

The book needs another chapter, this one telling the story of how this “miracle drug” is killing Harrison’s otherwise untreatable cancer. Dr. Weston has said several times, repeating it this morning, that Harrison is on the cutting edge of cancer research and treatment. We are grateful for the researchers who have worked tirelessly to bring cancer treatment to its current state, and are praying that Harrison’s extremely unfortunate struggle will force the medical world forward in its pursuit of a cure.

After talking with Dr. Weston this morning, it appears that already such progress will be taking place. In the future, all children diagnosed with leukemia will perhaps be tested for this “Harrison translocation,” as they are currently tested for the “Philadelphia translocation”. More kids will perhaps avoid risky bone marrow transplants. Fewer kids will be subjected to higher doses of more powerful drugs with both short-term and long-term complications. There will be fewer funerals, we pray, and more adult survivors of childhood cancer because of an observant pathologist at UNC, a diligent doctor at UNC, and a courageous little boy who wants to grow up.

This story is long from over. There are still 37 months of treatments ahead. Remission may still turn out to be short-lived. But for now leukemia diagnosis and treatment will be radically improved because of Harrison’s struggle. Leukemia has written a new chapter in our lives, and Harrison has written a new chapter in The Emperor of all Maladies.

First, an update on Harrison’s day. After Harrison was lethargic most of the day yesterday, we called the doc and were told to come in for a checkup and a follow-up CBC (complete blood count). They found his ANC at .4 (the same), his platelets still good, but his hemoglobin was 7.1, under the 8.0 threshold requiring a blood transfusion.

After a two-hour wait for the screened blood to arrive and a three-hour transfusion, Harrison was ready to head home.  It was a LONG day for him and Ginger.

It was my first time to miss a clinic visit or procedure. Just a part of the progress, I guess, but I was sad he and Ginger had to go through it alone.

But I really benefited from another visit I had today.

The community of cancer children and their families is both larger and smaller than I ever knew. Not long after Harrison’s diagnosis a friend of mine in the publishing industry wrote to tell me that his now college-aged son had been diagnosed with leukemia at age twelve. I’d never known. He’s just one of a number of friend who have survived this terrible disease.

Last week he wrote to tell me he would be in the Triangle on business and wanted to meet. Every other time we’ve met (most often in Chicago where he’d treat me to some of the best pizza in the world). This time the topic would be surviving as a parent of a cancer kid.

Besides being an ear for me, he was a source of much great advice. Already I have changed some of my thinking and behavior due to his advice. So many of the people we’ve met in our new community have helped us, but the advice he gave me today made such great sense.

So when he suggested reading a book entitled The Emperor of All Maladies: A Biography of Cancer I couldn’t wait to order it.

Here’s the book description from Amazon:

“The Emperor of All Maladies is a magnificent, profoundly humane “biography” of cancer—from its first documented appearances thousands of years ago through the epic battles in the twentieth century to cure, control, and conquer it to a radical new understanding of its essence. Physician, researcher, and award-winning science writer, Siddhartha Mukherjee examines cancer with a cellular biologist’s precision, a historian’s perspective, and a biographer’s passion. The result is an astonishingly lucid and eloquent chronicle of a disease humans have lived with—and perished from—for more than five thousand years.

The story of cancer is a story of human ingenuity, resilience, and perseverance, but also of hubris, paternalism, and misperception. Mukherjee recounts centuries of discoveries, setbacks, victories, and deaths, told through the eyes of his predecessors and peers, training their wits against an infinitely resourceful adversary that, just three decades ago, was thought to be easily vanquished in an all-out “war against cancer.” The book reads like a literary thriller with cancer as the protagonist.

From the Persian Queen Atossa, whose Greek slave may have cut off her diseased breast, to the nineteenth-century recipients of primitive radiation and chemotherapy to Mukherjee’s own leukemia patient, Carla, The Emperor of All Maladies is about the people who have soldiered through fiercely demanding regimens in order to survive—and to increase our understanding of this iconic disease.

Riveting, urgent, and surprising, The Emperor of All Maladies provides a fascinating glimpse into the future of cancer treatments. It is an illuminating book that provides hope and clarity to those seeking to demystify cancer.”

As a bibliophile I’m always looking for well-written, thought-provoking books. This one looks like a real keeper.

Please pray

• that Harrison will not develop a fever
• that Harrison’s blood will rebound over the next two weeks so they can tear it down again
• that Ginger and I will be able to rest to remain well
• that Lachlan and Blakely will cope well with our new family life

Thanks for your kindnesses and prayers.

On a recent visit to the mall Harrison and I parked next to a car with two teenage girls smoking. Harrison remarked, as he’d been taught since just a little child, “Don’t they know smoking will give them cancer.”

I was frozen.

Harrison didn’t catch it: he had cancer. And he’s never taken a drag.

I was sick to my stomach. How do these teens choose a behavior that every knows can give them cancer while my little boy fights for his life from that very disease? Do they not know what Harrison is going through, the pain, frustration, loss, fear? Do they not realize the daily fear and pain his parents and siblings face? How could they flaunt their health as if to tell my son, “We can do what we want and YOU are the one who’ll die.”

I felt like I’ve misled my son all these years: bad behavior has bad results. He’s always been the most compliant and well-behaved kid, yet he’s the one with cancer?!

I wanted those girls to be the ones with this life-threatening disease, not my son. Selfishness had taken over.

My mind went back to something I’ve seen time and again while reading about childhood cancer: more funding goes to research “behavior-related” diseases than childhood cancer.  AIDS and adult cancers like lung cancer receive more federal funding than the disease that is threatening to kill my son. How?

My cousin Maureen’s ongoing effort to raise funds for childhood cancer. Rush Limbaugh’s annual drive to raise money for leukemia and lymphoma research. Highlighting the work of St. Jude. It makes sense now.

In a week when the news is filled with demands to fund Planned Parenthood, whose 800k-plus abortions each year are demonstrated to contribute to breast cancer, I am filled with a little righteous indignation.

Perhaps if there had been one more research team, or one more clinical trial, or one more dollar for chemo research, my son wouldn’t be fighting for his life. Maybe he wouldn’t need to ask, “Am I gonna die.” Maybe he would be back to normal life as a ten year old boy playing with his friends without fear that one of them might, unwittingly, kill him with their seemingly-harmless germs.

Smoking causes cancer.

What do I tell my son about the cause of his cancer?

The closest answer I can find comes from the Bible. In John 9, Jesus and his disciples encounter a blind man. The disciples ask whether it was this man’s behavior or his father’s that caused the blindness. Jesus answered, “Neither.” In the wilderness these things happen. But God works in them for his glory. I don’t know how, but I desire the glory of God to be seen in this.

First, the update from the clinic:

A simple day today. Got there at 7:00. Out by 9:20. No complications.

Harrison received IT (spinal) metholtrexate and vincristine through his port. They drew blood and did a bone marrow aspiration. They are always looking for bad cells, and hoping not to find any. His chest is sore from the two weeks of having his port continually accessed, so the accessing this morning hurt more than usual. He still took it like a champ, but is still hurting a little.

Rocking the Giants wear getting ready to be accessed

Blood counts:
White cells – 1.7 (norm is 4.5-13)
Hemoglobin – 8.3 (norm is 11.5-15.5 – they will transfuse at less than 8.0)
Platelets – 247 (norm is 150-440, so this great)
ANC – .4 (norm is 2.0-7.5 – though the norm for him will be 1-2 during chemo).

This last number is indicative of neutropenia (less than .5) and means his is HIGHLY subject to infection. He basically has almost no cells that fight infection. He’ll live somewhat in a bubble for a week to see if they improve. But, to kill the bad neutrophils, you have to kill the good as well. Sticks, but that’s life for the next three-plus years for him.

Now, the fun stuff.

You may know that Orange is the color for Leukemia awareness. I didn’t know until I joined the fraternity of Parents of Cancer Kids, so I won’t be offended if this the first you’ve heard of it.

Each Tuesday, the day Harrison is receiving chemo, his school (North Raleigh Christian Academy) has “Orange Out,” as a way to encourage Harrison, Blakely, and Lachlan.  A large number of students and teachers wear orange and the school prays specifically for Harrison and our family.  What an encouragement!

Today the school had a pep rally to highlight all of the winter sports, in anticipation of the boys’ basketball team’s conference championship game tonight. Although Harrison is neutropenic we allowed him to go, he just couldn’t sit with his class. He was bummed that he couldn’t sit with his class, but was excited just to be there.

Look at the sea of orange

Imagine how touching it was when the fourth grade began chanting, “HARR-I-SON, HARR-I-SON!”, then the entire school joined in. Ginger and I just lost it. Harrison took it in stride, a little embarrassed by the attention he is getting. For a kid who is the life of the party, he’s still a little shy.

When it came time for the “spirit stick” each grade did their best to out-cheer the other grades. They were all awesome.

But when it came time for the fourth graders, we were touched when all the seniors ran across the gym to join Harrison’s class. You should have heard how loud they all were! It was incredible.

So when the cheerleaders announced that the fourth grade won, Coach Cook (the emcee) called Harrison out to accept the award on behalf of his classmates.

We have been so touched by the parents, students, teachers, and administrators at North Raleigh Christian Academy. They have time and again blessed us in tangible and intangible ways. When we drop the older kids off at school on Tuesday and see the sea of orange, we are reminded of how much our friends at NRCA love our little boy. That love has translated into prayers, cards, gifts, and other acts of kindness. I honestly do not know how people survive this without the Lord and his people.

I’m reminded that this is what the Body of Christ does, not just for one another but for all those whose lives are ravaged by the effects of living in the wilderness. The Gospel announces a better Kingdom, and the Church lives that Kingdom out to proclaim the promise of God’s salvation. I wish it wasn’t because of Harrison’s cancer that we see the Gospel demonstrated, but our entire family prays that our hell will help others see the Gospel of Jesus.

Psalm 30 is one of the readings our church is reflecting on this week.  If you read it, you’ll see what it came at a perfect time in the year for our family.

Harrison was so excited to watch the Giants win the Super Bowl. He loves Eli Manning.

I have always enjoyed watching football with my kids, all three enjoy watching the game. Harrison talks during the game more than the other two, usually explaining what is happening. When the Giants scored that final TD, for example, the first thing he said was, “The Patriots were coming to knock him into the endzone.” After the commercial break Chris Collinsworth said the same thing, like he heard Harrison. When the commentator repeated what Harrison had said a few minutes earlier, the little man looked over at me and grinned with that wonderful little smile he has. He’s just too smart of a kid.

But the Eli Harrison has on his mind the most is not a Manning, he is his little cousin, also fighting this dreaded child-killer called leukemia. They’ve never been close (we seldom get to see family in Mobile), but they have something in common that none of his friends or family can understand. They are both warriors. Much like Eli Manning is cool, calm, and collected when besting NFL defenses, Eli and Harrison are determined to best cancer.

As a sign of winning this war, Harrison is planning to wear all his Giants gear to the clinic tomorrow. When the doctor injects chemo into his spine, a chemo that is certain to cause at least some neurological damage to this brilliant little boy, Harrison will be reminded that sometimes it takes a late-game drive to win. Even when things look grim, one of the greatest slot receivers in the NFL can drop a pass, giving you a chance to win. Leukemia has messed with the wrong little boy.

Providentially, last week’s Scripture reading at our church was from Mark 1, where Jesus heals Simon Peter’s mother-in-law. After being healed the text says she went on to serve him. We continue to pray for God’s healing not just for Harrison’s and Eli’s good, but for the good of the Gospel’s progress. We pray that people will be able to say, “Harrison’s God–the God of the Bible–has done great things for him and Eli.” Like God’s deliverance of his people from Egypt, may his treatment of Harrison and Eli cause the nations to see that he is indeed God.