January 24 was as good of a day as December 9 was bad.  After six weeks of “Induction” we finally heard the word, “Remission.”  We all cried, including the doctor.

Until then we knew things were bad for Harrison, but we didn’t know just how bad.  One doctor described the entire medical team as “distraught” over Harrison’s case.  When they discovered his form of ALL was not responding to the treatment, they saw little hope.  A bone marrow transplant would have been the only shot at getting rid of this, and offered little chance of success.

I’m glad they didn’t tell us their level of concern; it was bad enough knowing what we knew.

Apparently two weeks ago, at the stage when 98% of ALL patients go into remission (defined at less than 5% lymphoblasts in the bone marrow), Harrison was at a full 30% blast count!!  Typically he would have gone on to the transplant protocol right then.

But Dr. Weston refused to give up.  He and a team of researchers at UNC, Johns Hopkins, Mayo Clinic, and St. Jude worked tirelessly to find some way forward.  He believed that Harrison’s form of leukemia was due to a particular type of chromosome translocation.  Of the eight doctors he consulted seven of them agreed that treating with this new drug Gleevec was the only hope (even if it was a “shot in the dark,” to use his words).  As an aside, I am glad that “one” doctor is not Harrison’s primary oncologist!  Thank God for Dr. Weston.

Long story short, the shot in the dark worked.  When the lights came on, Harrison was in remission!

Remission does not mean cured, or cancer free.  It means that the percentage of remaining leukemia cells (lymphoblasts) in his bone marrow is less than 5%.  In fact, the preliminary count showed NO blasts at all.  But THERE ARE STILL CANCER CELLS hiding in Harrison’s body, even if the doctors cannot find them.  Were the treatment to stop now there would be a quick relapse of the disease.  Despite being in remission, Harrison still has leukemia.

So the celebrating was sweet, but short.

Tuesday began the “Consolidation” phase of his three-plus year treatment.  What is consolidation?  It is a 56 day treatment designed to kill of the remaining leukemia cells.  In includes weekly visits to the cancer clinic for chemo and blood tests to make sure there is no relapse.  There will be two more phases before “Maintenance.”  Here are the medications/chemos he is on for these two months.

Kepra – Anti-seizure med because of the stroke.  Four giant horse pills each day.

Lacosomide – Anti-seizure med because of the stroke. Two pills each day.

Septra – Antibiotic as a prophylactic to infection.  Four pills every Mon, Tue, Wed.

Arixtra – Blood-thinner due to the blood clots in his brain.  A shot every morning.

Metholtrexate – Chemo injected into his spine and brain each week through a spinal tap at his Tuesday visit to the hospital.

Cytoxan – Chemo treatment on Tuesdays.  About six and a half hours.  Given at the hospital.

Cytarabine – Chemo treatment Ginger and I give him at home through his port Wed, Thur, Fri.

Zophran – Anti-nausea med he gets through his port before each of the chemo treatments and as needed by pill.

MP-6 – Two chemo pills he takes each night before bed.

Gleevec – Protein-inhibitor that is the “miracle drug” right now.  Three pills each day.

No steroids, flumoxacole, or pepsid in this phase.

On Friday a nurse comes to our house to “de-access” Harrison.  That means to remove the line going into his chest.  To administer the drugs, Harrison has a “port catheter” implanted in his chest for the entire three years.  Each week he has a three-quarter inch needle inserted through the skin into the port.  A tube then connects to the needle.  If you have ever seen an IV, you can picture that going into his chest rather than his arm.  They will “re-access” him on Tuesday and leave the line in until next Friday.  Then, he has two weeks off of that chemo.

We give praise to the Lord for Harrison’s healing, and are grateful for God’s provision of wonderful doctors, nurses, and researchers.  We cannot say enough about Dr. Brent Weston.  His tireless efforts on behalf of our son are what we pray for in a doctor.

I’ll do a better job of posting updates and explanations (daily, I hope).  The last two weeks have been filled with such fear, I simply couldn’t find the motivation to write.

Thanks for continuing to pray, even when you didn’t have all the details.  We know that God continues to hear your prayers.  We’ve seen Psalm 126 right before our eyes.

This has been a week even worse than that following Harrison’s diagnosis with leukemia. I’ve been too emotionally bankrupt to even think about the events of the week, but I did want to give the latest so that you might continue to pray in an informed manner for our “little man.”

On Monday, the day following Christmas, Harrison was having a great day, one of his best. He went to Target with Ginger for a quick trip, then came home and went in the back yard with Lachlan, who was burning the paper and boxes from Christmas. Harrison had a great idea–make s’mores–so he called Ginger and asked her to bring the stuff to make them. It was wonderful. We easily forgot he has cancer.

In the early afternoon all three kids were in the basement playing a new game for the Wii that Harrison got from his grandparents for Christmas. Suddenly, Harrison and Blakely came up the steps with Harrison complaining of seeing spots and a “spinning fan.” We laid him on the couch and Ginger called the oncologist. While she was on the phone Harrison felt like he was going to throw up, so I took him to the bathroom. I came out to get things together to go the hospital and when I returned he was unresponsive. I began asking him questions and trying to get him to talk. After a few moments he tried to answer my questions, but was slurring his words. I told Ginger he’d had a stroke. My heart nearly stopped.

The oncologist said to bring him to UNC, but once on the road Harrison’s head was jerked to the left and he wouldn’t even try to answer questions. He was completely unresponsive.

We stopped at the nearest ER, and I carried him inside. Once inside he began having seizures. They gave him some medicine and took him back for a CT.

When the doctor returned he asked us to join him in the family room. I knew this would not be good news.

He told us Harrison had had a stroke, there was a clot in a major vein, and there were five spots on bleeding deep in the brain. I asked what that meant, and he simply replied, “It’s not good. We’re sending him to UNC and they can tell you more.” We thought it was over.

Fast forwarding, Harrison is still here on Saturday. At some time I’ll be able to write about the details of this week, but in a nutshell, there are two blood clots in his brain, and some serious bleeding. This is a result of one of the chemo meds administered in the first week of his treatment. Thickening of the blood and the potential of clots is a known side effect of peg asparaginas. This drug is given only twice during the protocol Harrison is on: once on day 4 and once again several months later. The drug screws up the clotting factors in the blood. About 15% of cancer patients on this protocol have clots like Harrison. But the asparagenas takes remission rates from 80% to 98%; worth the risk, they say.

So today, Harrison is on heparin, a blood thinner, to prevent more clotting. Of course, there is also the risk of even more bleeding. The doctors have had different opinions on how to treat this case, but have settle on this route.

Tomorrow, Harrison will have an MRI to see if there is any additional bleeding caused by the heavy doses of heparin. If the bleeding is significantly greater the neurosurgeons will perhaps need to intervene. Of course, we are praying this will NOT be the case.

Harrison is also on two different anti-seizure medications, as he has had a large number of “simple partial seizures.” These are due to the damage to the brain from the bleeding. There is no way to know when or even if they will ever stop. Fortunately, there are drugs to deal with them.

There also remains some eyesight problems from the bleeding, but these have improved during the week and are actually fairly insignificant, compared to other problems he has. For example, his eyesight in his left eye has gone from 20/20 to about 20/50. Even if that is permanent, it’s nothing compared to leukemia, or stroke.

We never thought we’d have a worse day than the day our son was diagnosed with cancer. We were proven wrong. But we believe he is the best care available, from the wonderful medical professionals at UNC Children’s Hospital to the family and friends here and around the world who have prayed for him, prayed with him, and encouraged him in so many ways.

This week it has been easy to forget that Harrison has leukemia, as there has been an even more immediate threat to his life. But I am convinced his oncologists have not lost sight of the need to get the underlying problem–the cancer–into remission as quickly as possible.

There are two very important prayer requests we’d make:

One, please pray that the MRI tomorrow shows no significant additional bleeding that would require invasive procedures. The doctors do not want this, neither do we, of course.

Two, please pray that the leukemia has not entered his spinal column or brain, as the treatments meant to protect those parts of the body have been impossible due to the damage to the brain.

We thank God for His people, who have been a blessing to our family during this time in tangible, emotional, and spiritual ways. We also think him for his common grace, wherein researchers, doctors, and patients who have gone before us have, even unwittingly, been a part of preparing treatment options for my little boy.

Most days I remark aloud to Ginger, or to the Lord, “I can’t do this.” I am pressed down and crushed and can’t seem to see a way out of this. But I remain convinced that God is good, and kind, and gracious, and loving, and that he is at work on behalf of my son. I have many times in these three weeks played the role of Moses in Exodus 32, where he interceded for Israel: “Why should the Egyptians say, ‘With evil intent did he bring them out, to kill them in the mountains and to consume them from the face of the earth’? Turn from your burning anger and relent from this disaster against your people. Remember Abraham, Isaac, and Israel, your servants, to whom you swore by your own self, and said to them, ‘I will multiply your offspring as the stars of heaven, and all this land that I have promised I will give to your offspring, and they shall inherit it forever.’’ And the LORD relented from the disaster that he had spoken of bringing on his people.” (Exodus 32:12-14 ESV)

I have prayed that God would heal Harrison for His own glory and that the nations may not be able to say, “God brought him here only to kill him and consume him from the face of the earth.” We want the nations to say, “God has done great things for him.” That’s really all I know to pray.

 

Christmas was really good for Harrison. We didn’t think that would be the case after he had such bad days Thursday and Friday. He couldn’t even play with his cousins or enjoy opening gifts.  It made the day and night tough for Ginger and me as well: was there a setback? The emotional roller coaster continues to be a nightmare.

But Sunday was a completely different story.  He woke up feeling fine, and spent the day enjoying family.  We shared the story of the Angel of the Lord’s announcement of Jesus’ birth to the shepherds.  We gave thanks to the Lord for the gift of eternal life.  And for the gift of a great day.  We all slept better.

Another gift is the manner in which Lachlan and Blakely have responded to this challenge.  They both continue to encourage me to believe God for Harrison’s healing.  They both treat their brother well, without “baby-ing” him.

They both have refrained from complaining about the changes they’ve had to make, and will have to make.  We missed our annual Christmas trip to see loads of family in Mobile.  Lachlan missed his hunting trip to his uncle’s place where he killed his first deer last year.  Blakely missed seeing her cousins.  We’ve had to cancel our planned trip to Scotland next summer, Lachlan’s first time to his place of birth.  While they are disappointed they’ve not once made Harrison feel responsible.  They’ll never know how much that has meant.

I regret that their lives have suddenly and dramatically changed.  I regret that all three of my kids will miss so much this spring.  But I am grateful that they are responding with love, grace, and patience.  The Spirit’s work in their hearts is obvious.

Tomorrow we go for another treatment, including a painful lumbar puncture and bone marrow biopsy.  Please pray for Harrison.  Please also pray for good report from the blood and marrow tests.

Blessings to you.

This Christmas is tough, as you might imagine.  But the irony is not lost on us that as we fight to keep my son alive, tomorrow is day when one child was born for the purpose of dying.

This morning as Harrison and I were chatting we talked about Christmas and the birth of Jesus.  “Why did God become man?” I asked him.  “To die for our sins,” he replied.

But the even better news is this child who did in fact die for our sins was, on the third day, raised from the dead to give life to all who believe.  And because of his resurrection, we know that we, too, will one day be raised.

So while we fear death as the end of Harrison’s terrible illness, we also know that death is really never the end.  There is hope in this reality.

Today, my brother and his family will come over.  Harrison will have a great time with his cousins (though he is not feeling well today).  His grandparents are here.  He loves family.

Hopefully he can rest tonight and we can, together as a family, celebrate the gift of eternal life through faith in Jesus Christ our Lord.

And we pray that Christmas will be a time of rejoicing for you and your family.  Though our hearts are heavy, we too will rejoice, remembering that our God has seen us in our terrible condition, has heard our cries, and has answered them with his own presence.  God became man when Jesus was conceived in the virgin.  Tomorrow we celebrate the arrival of that Savior who would live, die, be resurrected, and ascend to heaven to be the way for us to have eternal life.

I should begin with an update.  Harrison is feeling well.  Still eating everything in sight.  In fact, he came into my room just after 5:00 this morning asking for Krispy Kreme donuts.  He even had his order ready.  After putting him off for a bit, I got up and took him to get the melt-in-your-mouth delights.  He had eight of them.

The medicine is going well, though he continues to loath taking it.  We’re all getting better; me more patient and him more compliant.

Harrison continues to have a great attitude, both about the disease and its inconveniences.  But school is out, so no one is going.  Once his classmates return, presumably without him, and he has to spend time in the hospital, he’ll need an added dose of encouragement I am sure.  He’s still such a blessing as a kid, just as he has always been.

Dr. Weston called again yesterday to make sure the pharmacist was filling the prednisone order properly.  Apparently, he’s worried that the treatment is not working as well as it should.  Of course, he told us that it was his job to worry, not ours.  Yeah, right.

Last night when I couldn’t sleep I kept thinking about something Harrison said several years ago after an older neighbor cracked him over the head with a stick: “Bad things always happen to me.”

None of us every imagined that “bad thing” would one day be cancer.

As I considered his innocent and heart-felt statement I was reminded of Psalm 73.  The author cries, “I was envious of the arrogant when I saw the prosperity of the wicked.”  That captured my attitude.  But the Psalm ends with a wonderful announcement: “For me it is good to be near God; I have made the Lord God my refuge, that I may tell of all your good works.”

At Christmas we recall the announcement of the birth of Immanuel, which means our God is with us.  Our family rejoices in the arrival of Jesus Christ our Savior every year.  But this year, the promise that Jesus is “God with Us” is even sweeter than before.

My prayer is that by God’s work in the life of my son and our family we may tell of the good works of our great God.  We want both to enjoy God’s favor and proclaim his favor.