Surviving a Massive Stroke

Steve McKinion Uncategorized 3 Comments

Three years ago today I listened to a doctor tell me this:

“Your son two complete blockages deep in the brain. He has five bleeds too deep to reach. Something is wrong with his blood; it is too thick to even perform a complete blood count.”

I asked an obvious question: “Is there any chance he will make it?”

He had a measured response: “The bleeds are too deep for us to do anything. I’m sorry, but there is nothing more we can do. We will keep him sedated to prevent further seizures, but I’m sorry to say he won’t survive.”

Heartbreak for his mother and I me like I could never have imagined.

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Harrison three years ago

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Harrison now

 

Two weeks earlier he had been diagnosed with leukemia. We thought if anything killed him it would be the cancer. Never did we imagine he would have a stroke. Even worse, a stroke caused by a drug meant to save him from the cancer.

But Harrison’s oncology team was not content to shut the door and let Harrison die like that. Despite it being the day after Christmas, his docs jumped into action. Dr. Gold was on call, but Dr. Weston left his vacation to rush to the hospital. They devised a plan. And like everything for Harrison’s journey, it was unique.

The treatment involved a frozen plasma solution, essentially doing the opposite of what one expects (whatever that means). It was something new doctors were trying on stroke victims. No one had tried it on a child. But, as we’ve said many times, what do we have to lose?!

A nurse told us the pediatric doctor in the ICU have overruled Harrison’s oncologists and were not going to allow the treatment. I proceeded to find her and (ahem) express my deep displeasure with her decision.  Eventually she relented and allowed it.

The treatment worked.

And, just like the treatment for his leukemia, the treatment for his stroke was the subject of a paper for pediatric oncologists. Go figure. I wish he would stop having experiences that require miraculous medical advances!

We remember these events and the months of epileptic seizures that followed with wonder at the kindness of our God. Today, the only sign of brain damage is occasional stuttering (that may not even be a result of the stroke). Harrison is no longer on Keppra to prevent seizures. And while the brain trauma has stolen the sport of football from him, he still plays baseball like a champ. Even better, he has been on the all A honor roll each semester since.

Today he may do many of the same things he did on that infamous December 26. He and his brother may burn boxes and wrapping paper. He and his mom may return some gifts that don’t fit. He and his sister may play a game in the basement.

And we will give thanks to God that he can.

Three Years Ago Today

Steve McKinion Uncategorized 4 Comments

December 9, 2011, began like thousands of other days in the McKinion household: Ginger took the kids to school and I parked in front of the computer to work. The simple life we knew.

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Only three hours later the calm of preparing for the end of the semester would be shattered by a call from Ginger:

“I’m coming to pick you up; we have to take Harrison to the hospital.”

What?

Harrison had been sick for a few weeks. Nothing major, just weak, tired, and pale. Like a virus. But when he couldn’t recover Ginger decided to go to the pediatrician on the advice of Mrs. Walker, one of Harrison’s teachers.

“What did the doctor say,” I asked.

Her reply: “We’ll learn more when we get to the hospital.”

Harrison had low red blood cell count. Dangerously low. He needed a blood transfusion.

Plus he had a high white blood cell count. Dangerously high. Higher than when the body is fighting a virus or an infection.

He was lethargic. He had leg pain. He had night sweats.

Individually, those symptoms mean nothing. Together they mean one thing: blood cancer.

It took a simple web search to learn what would be confirmed later that night: Harrison had cancer.

As soon as I got in the car I whispered to Ginger, “He has blood cancer.”

Harrison overheard me and said through tears, “I have blood cancer? Am I going to die?”

I did what I’ve done several times since Harrison’s diagnosis, I lied to my son.

“No, you don’t have cancer and you aren’t going to die.”

I told him what I wanted him to believe. What I wanted to believe myself.

Within hours Harrison was tucked into a hospital bed in Chapel Hill. Ginger and I sitting on a vinyl couch in shock. Still holding out hope this was all a terrible mistake. Doctors make mistakes all the time, right?

But there was no mistake. A phone call from Dr. Weston confirmed our greatest fears.

Our son had cancer.

Harrison has endured a great deal, but has survived to his third diagnosivery (as we so fittingly calls these days in the childhood cancer world). We pray there will be many, many more.

And Harrison wants to celebrate. Not celebrate cancer, he said, but celebrate surviving it.

So today we begin–appropriately enough–with a trip to the hospital for sedation, bone marrow biopsy (more on that later), and chemo infusion. Then school. Then a party. No cake, no candles, no presents, just time together as a family. A family of five.

Celebrate Life.

Let’s get this party started.

Six Months To Go

Steve McKinion Uncategorized 1 Comment

Six month into Harrison’s treatment was a tremendous milestone. Those were the hardest six months of his young life. He was sick, had the miss the second semester of fourth grade, and nearly died several times. When he survived for six months in leukemia treatment we celebrated. More children die with leukemia than die from leukemia. Why? The first treatment is so deadly.

That was two and a half years ago. Here’s a before and an after.

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And what a difference two and a half years can make.

Please continue to pray for perseverance. Six months of chemotherapy is still a long, long time. And dangers remain. Besides the obvious threat of a relapse of the cancer, there is still the danger of infection due to Harrison’s immunosuppressed state. Flu season is upon us. Sick kids at school are a danger.

Harrison said the other night, “It’s only six months, I know I can do this.” That kind of perseverance is unmatched. I’m hoping I can approach life like that one day as well.

Happy Birthday, Harrison

Steve McKinion Uncategorized 3 Comments

Happy birthday to the world’s newest teenager!

I’ve thought about what I would say today for some time. Upbeat? Somber? Melancholy? Angry? Relieved?

Any of those emotions would be fitting.

But as the day got closer one word continued to come to mind: Blessed.

Jesus said, “Blessed are those who mourn, because they will be comforted.” That word “Blessed” could just as easily (and rightly) be translated, “Happy.” God’s kind comfort of my son, my family, and me is the source of genuine happiness and blessing.

Today Harrison turns thirteen. Thirteen. Never imagined my youngest child being a teenager. But it happened.

Harrison’s third birthday with cancer. And, hopefully, his last.

Of course, we are relieved to be here. Too many times over the past three years Harrison has knocked on heaven’s door. He failed induction therapy (only 2% of all leukemia patients fail to achieve remission), he had a stroke, got the flu, had a deadly fungal infection, suffered several other potentially deadly infections of unknown origin, and survived two blood clots in his brain thanks to an experimental frozen plasma infusion.

He should never have made it this far with all he’s endured.

But he’s still here. He’s still fighting, still enjoying the blessed life.

Tonight he’ll be treated to his “traditional” birthday meal: his favorite Japanese steakhouse. He’s been talking about it for weeks. He was there five days before being diagnosed with cancer. He said, “We have to go there every year as a reminder that cancer didn’t win.”

Birthdays mean different things to different people. To a child with cancer they mean one thing: I survived another year!

Happy birthday, Harrison.

“I Can’t Do This Any More”

Steve McKinion Uncategorized 11 Comments

Tuesday was Harrison’s monthly trip to UNC for chemo infusion. These trips are relatively routine for us. They are just a part of life now. But they aren’t routine for Harrison. He’s sick of going. And tired. And hurting. Physically and emotionally.

At this appointment, Harrison’s oncologist, Dr. Brent Weston, gave us a quick update of where we stand. It was slightly disappointing, so I’ve hesitated to pass it along.

Of course, we’ve learned that childhood cancer is simply one disappointment for Harrison after another.

Essentially, here is where we are.

Medically, things are GREAT (as far as we know). There has not been a relapse. There are no leukemia cells appearing in Harrison’s blood. His counts are great. He remains in remission.

But the doctors believe Harrison’s leukemia will require long term treatment; as though three and a half years isn’t long-term enough. When his conventional chemotherapy ends in April, they will keep him on one of his drugs “indefinitely.”

Harrison knows what “indefinitely” means. So he asked, “Am I going to be taking medicine for the rest of my life?”

Dr. Weston responded, “Probably so.”

Stunned silence from a usually vibrant Harrison. The color vanished from his face. His countenance dropped.

Harrison had been counting down the days until his last chemo pill – No Mo’ Chemo.

Cancer stole the fourth grade. Cancer stole football. Cancer stole his childhood. Harrison wants nothing more than to be rid of cancer. And now he is being told it would be with him forever.

Here’s the best explanation why:

Harrison’s cancer is a terrible, terrible variety that resists traditional chemo. It is caused (at least in part) by a chromosome mutation resulting in a particular type of activity called a tyrosine kinase. Gleevec inhibits tyrosine kinases.

The doctors do not know how chronic Harrison’s tyrosine kinase activity is. All of his leukemia cells could be gone. Or ONE could remain.

And if even one leukemia cell remains, his cancer would spread again.

Gleevec is used to treat a similar leukemia to Harrison’s, and studies have shown that whenever a child with that type of leukemia stops Gleevec, the leukemia returns. So…better safe than sorry.

It is more complicated than that (medically), but that’s simple enough for me to understand.

HOWEVER, better safe than sorry is not nearly as good as “cancer free and chemo free” would be, especially to Harrison.

While he will still stop traditional chemotherapy in April (provided nothing changes between now and then), he will continue cancer treatment indefinitely.

Harrison. Is. Devastated.

That night he said, “I can’t do this any more.”

Heartbreaking.

We should know more about any other plans shortly.

Thanks for praying for Harrison.