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.

I must admit that my biggest struggle these past six weeks is a crisis over the goodness of God.

Never once have I doubted God’s ability to heal my son, either in an instant or through the three year treatment.  I confess God the Father, the Almighty.

But more than once my trust in God’s goodness has wavered.  Maybe I shouldn’t confess to that.  While trusting his ability I have often questioned his willingness to heal.  Not because I think God is evil or mean or cruel, but my love for my son and my desire to see him well clouded what I know to be true: God is both great and good.  He is not “out to get” my son, regardless of how I have sometimes felt.  I know that God loves Harrison more than I love him.  But walking in that knowledge has, I admit, sometimes been tough.

That’s why I am grateful for those who are walking through this with me, but aren’t being burned by the fires.  Those whom I know hurt with me and my boy, but nonetheless cling to the goodness of God on our behalf, interceding with God, have been my rock in this time.

Romans 8 tells me that there are times of suffering when I cannot pray, or think rightly about God and his goodness.  I’m often there.  But it also tells me that in addition to those wonderful men and women who are praying for and with Harrison, there is Another who stands with us: the Holy Spirit.  On days when I can, I try to remind myself that the Spirit who indwells me, my son, and God’s people, prays for us when I cannot even come up with the words to say.  And as you pray for Harrison’s healing, be assured that the Spirit of God participates with you in that wonderful ministry.  Thank you for joining our Triune God in his work of healing Harrison.

Lachlan and Blakely have been wonderful during this trying time. They’ve not complained about losing out on so much: our annual Christmas trip to Mobile to see family, our planned summer mission trip to Scotland, and so many little things throughout each week. But yesterday they both were very disappointed. But for a good reason.

Two weeks ago, as the doctors were baffled with Harrison’s lack of response to chemotherapy, plans were put in motion for a bone marrow transplant. The first thing doctors needed to know was whether Harrison has a sibling match for his marrow. Family matches offer the best chance at successful transplants.

So Lachlan and Blakely gave blood to be tested.

Lachlan couldn’t wait. He was excited to walk into the clinic, stick out his arm, and take the needle like a man. What fourteen year-old boy doesn’t want to impress people with his courage? He didn’t argue or complain.

Blakely was a different story. What thirteen year-old girl wants a needle in her arm? She doesn’t have anything to prove. But when the time came for her to give blood, she gladly, if reluctantly, offered up her vein.

Sibling rivalry erupted.

After Blakely realized she would survive the needle, she became insistent that SHE be the donor for Harrison’s eventual transplant. Lachlan countered with his own insistence. It was a mixed blessing to hear my kids fighting… over who would offer the chance at life to their brother. I was upset that he would need this terrible procedure, but delighted that my other children both were hoping they would be “the match.”

Dr. Weston made a prediction: Lachlan would be the match. Blakely decided she didn’t like Dr. Weston any longer!

We got the results: neither of Harrison’s siblings were a match.

No one could believe it. There is a 1 in 4 chance of a sibling being a bone marrow match, and Harrison has TWO siblings. We were all disappointed, none more than Lachlan and Blakely. I proud that they were upset. They are willing to do anything to help their brother.

So where are we on a transplant? Dr. Weston said that without a family member match the transplant option moves “back a few steps.” In other words, if the current treatment stops working, we’ll try something else before moving to a transplant. Had there been a family match, a transplant would have happened more quickly in the process. Non-family match transplants are much riskier, apparently, than family match transplants.

Of course, if the current treatment course works, we won’t need a transplant. Unfortunately, a family match transplant is a weapon, and a quite effective weapon at that, we no longer have in the arsenal.

So we continue to pray that God provides healing through the protocol we are on without requiring the more risky transplant option.

As you pray for Harrison, one major concern right now–in addition to healing from cancer–is protection from seasonal viruses and infections. The flu is deadly for leukemia patients, especially with blood counts as low as Harrison’s are at the moment. An epidemic of norovirus is also being reported in the triangle. This virus spreads very quickly and easily. Please pray that Lachlan and Blakely don’t bring it home from school and that Harrison avoids any other infections as well. This stage of treatment will keep his numbers at some of the lowest of the entire treatment protocol.

We continue to remember the promise of Psalm 126, that those who go out with weeping return with shouts of joy. The Lord has done great things for Harrison in Jesus Christ, and we find our refuge in our kind God.

I found these various facts online (I’m driving myself mad reading all that is available), and thought it might give some perspective:

* Childhood cancers are the #1 disease killer of children.

* One in every 330 children will develop cancer before the age of 19.

* One out of every five children diagnosed with cancer dies.

* Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses.

* Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.

* When cancer strikes children and young adults it affects them differently than it would an adult – the treatments (chemo, radiation) impact puberty, learning, development, and as a result have greater long-term affects.

* Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis.

* Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

* The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).

* Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives FOUR TIMES the funding that childhood cancer receives.

* On average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.

* On average, one in every four elementary schools has a child with cancer.

* On average, every high school in America has two students who are a current or former cancer patient.

* In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That’s about the equivalent of two entire classrooms.

* While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.

* Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia , and relapsed non-Hodgkin’s lymphoma.

This morning was a “sedation” day, meaning that Harrison would be sedated for a spinal tap. Dr. Weston did a lumbar puncture and pushed a chemo drug known as methaltrexate. Harrison also got a dose of cytarabine. While there is no sign of leukemia in Harrison’s spinal fluid, researchers have discovered that leukemia cells love to hide out in the central nervous system (CNS). In the past, before treating the CNS, kids would come out of remission quite quickly after induction when the cells in the CNS began to reproduce. The chemo in the spine is both to prevent the spread of leukemia to the brain and to prevent a relapse in the event some cells slipped in. Unfortunately for Harrison, due to his stroke there most certainly was some leukemia passed to the brain.

There are several blood count numbers that the doctor tests each week. The results of these tests determine the level of medication given. For example, if the white blood cell count is too low, then Harrison might take a lower dosage of a particular drug. Once the numbers return to a safe level, the chemo dosage rises.

One number chemo patients always look for is the ANC, Absolute Neutrophil Count. Neutrophils are the cells that fight infection. A count of less that 500 (written as .5) is dangerous, and means the patient is neutropinic, and really should not be around other people.

The chemo kills both good and bad cells, so low numbers are to be expected. But the treatment must be managed to ensure the body can produce enough good cells to get the numbers back in order. If the numbers do not bounce back, then something isn’t going right.

At the clinic visit today here were Harrison’s numbers:

Hemoglobin: 9.1 (normal is 11.5-15.5 – less than 8 requires a blood transfusion)
Platelets: 249 (normal is 150-440 – this is a great number)
ANC: .5 (normal is 2.0-7.5)

While Harrison is neutropenic, these numbers look really good according to Dr. Weston.

Thanks for your continued prayers for Harrison.

It is easy to forget that “remission” does not mean “cured.” Harrison is not cancer-free yet, but he is one small step closer. Without the ongoing treatment he’s receiving, the leukemia would again ravage his body.

After hearing the news that we would move into the “consolidation” phase of his five-phase, three-year protocol of treatments we were, of course, delighted. When the weekend came around, Harrison was feeling great. Apparently his blood numbers must be high, otherwise he wouldn’t have the energy he’s had. The chemo will knock those numbers down as it kills off both good and bad cells. With leukemia treatment, in order to eradicate the leukemia cells one must also knock off many of the good cells. War is hell, they say, and war with childhood cancer is no different.

Friday night Harrison was determined to go the varsity basketball games (girls and boys) at his school, North Raleigh Christian Academy. We agreed to go for the second half of the girl’s game and the first half of the boy’s. We felt like his energy level indicated decent numbers, at least. I should not have been surprised that Harrison immediately connected with his friends and was nowhere to be seen for either game. Fortunately, Blakely and her friends kept a close eye on him. He had a blast!

Harrison and Blakely at the NRCA basketball game.

Saturday morning he woke up ready for a good day. Lachlan’s baseball team has workouts each week at an indoor facility, and Harrison, like every year previous, thinks he belongs with the varsity players at practice. He’s always been a hit with those guys, even more now. He showed up like usual, baseball equipment in tow, ready for cuts in the batting cage. Although the prednisone has done a real number on his legs, combining with the vincristine to weaken them, he was able to step in and show the older guys how it’s done! He loves the new bat he got for Christmas.

One of Lachlan’s best friends, Jansen Kidd, had his annual “Ice Bowl” birthday party in the afternoon. Jansen, the young man who has offered to have his bone marrow tested in the event a transplant is needed, invited Harrison to come as well. As soon as I left baseball with Harrison, he started pestering me to take him to the party. I felt like he needed some rest, but he insisted.

Harrison jumped right into the middle of the action; he was determined to play some football. While running is basically impossible for his little legs right now, he didn’t let that stop him. Even when he stumbled and fell, he just got up and went back to jogging. He even threw for a touchdown. I told him that was more than his new prayer-partner, Peyton Manning, threw this season. He just laughed and acted as if to say, “That’s how I roll.”

Harrison has always been low-key about his athleticism. When he would complete a pass, run for a touchdown, or make an exceptional play at shortstop, he just acted like it was nothing for him. No need to jump around and draw attention to yourself, just let your playing speak for itself. Made me proud.

On Sunday, we intended to keep Harrison home from worship. I don’t know why, other than keeping him from germs. But he woke up and really wanted to go. Since he felt good, we agreed that he could go with us. We all love worshiping our Triune God with our church. Although I have not been preaching for the past few weeks, we still want, and need, the authentic Christian community that New Covenant Fellowship provides. I don’t know how people that don’t know Christ and his people survive these sorts of crises.

Sunday afternoon was quiet. No football to watch (the Pro Bowl is certainly not football worth watching), so we spent some time reading, playing games, putting together a puzzle, and resting. It was a fitting end to a remarkably busy weekend.

As the week begins, we remember that Harrison is fighting against a life-threatening disease, one which a few weeks ago nearly claimed his life. It is hard to believe that one month ago today the little man had a stroke that caused the ER doctor at WakeMed to give us no hope for his survival. Today should be a good day for Harrison. He’ll do some school work, take a boat-load of pills, and prepare for chemo tomorrow. If all goes as planned, his blood count numbers will begin to drop as the meds continue killing leukemia cells.

In addition to praying for his continued remission, you can also pray for his appointment with the neurologist tomorrow afternoon. Obviously, he’d like to drop some of the anti-seizure medication. But we want to make sure he is improving significantly enough that he will not begin having seizures again. Additionally, and really more importantly, pray that the two blood clots that remain in his brain, which caused the stoke a month ago, would dissolve rapidly and no long present a treat to his life. Harrison has not had any nausea yet, but that could change with the continued escalation of chemo.

Your prayers, cards, emails, and gifts have meant the world to us. If we haven’t expressed our gratitude yet to you personally and individually, please do not interpret that as ingratitude. The outpouring of support has simply overwhelmed us.