“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.

A Great New Book

Steve McKinion Uncategorized 1 Comment

I have a soft spot for kids. I’ve never understood child abuse. When kids hurt, I hurt. Part of my love of coaching is the chance to help kids who might not get a chance. I hate seeing coaches mistreat players, either directly or simply by neglecting them. Too often I’ve seen coaches who just don’t know what they are doing overlook a kid (maybe s/he doesn’t look “athletic” enough – whatever that means) or push them to the side because of some bias.

The biggest pain I’ve known is being a childhood cancer parent. As much as it pains me to see other kids suffer, the pain of seeing my own kid suffer is sometimes unbearable. Many days I collapse under the weight of seeing my son’s suffering.  Add to that the hurt of watching my wife and other kids suffer with him. Some days are simply a blur.

bookSo I cannot imagine a parent who leaves their kid behind. I simply cannot imagine it.

But it happens. All the time.  Some parents leave to pursue other loves. Some leave because they are pushed away by a bitter spouse.

And the child who is left behind is always the one hurt the most.

That’s why I am glad that my former student Jonathan Edwards was willing to write about his own pain as a “Left” child. Many children of amicable divorces do just fine. But when a child no longer has a parent in their lives, there is typically pain, bitterness, hurt, sadness, and loss.

If you’ve ever know the pain of a parent leaving you, or if you know someone who has, I would encourage you to pick up this book.

Purchase from Amazon

or visit the website at www.left-book.com

 

This Can’t Be Happening

Steve McKinion Uncategorized 2 Comments

Nearly every week Ginger and I are contacted by a new childhood cancer family. Sometimes a friend introduces us, other times they land on this blog or Harrison’s Facebook page, and sometimes they’ve seen something on twitter. But every time I think the same thing, “Another family facing weeks and months of fear, hurt, and sorrow.”

Each time I am taken back to that first week of Harrison’s struggle. The sleepless nights in the hospital. Pacing the floor. Walking from the room to the snack closet and back again. Climbing into Harrison’s bed. Climbing out to lie on the floor. Looking up from the cold floor into the ceiling and thinking,

This. Can’t. Be. Happening.

Every cancer parent I’ve talked to has that one line repeat over and over, involuntarily, in their heads. Not to my daughter, my son, my grandchild. Not to my oldest/youngest/only child.

Parents fly back and forth through the stages of grief, usually many times a night.

And the nights are the worst. You are left with just your thoughts.

Hospital noises are a constant reminder that nothing will be the same. Every time the IV pump runs dry and the alarm sounds you think, “Is he dying?”

Nurses come and go, like silent ninjas. They must believe if they are quiet they won’t wake you.

Too late.

There’s no rest for the weary, no sleep for the dazed and confused, no “happy place” to drift off to. No magic sandman to bring you a dream. Just thoughts of what tomorrow holds for your child. And the pain such thoughts bring.

But, eventually, you sleep. But never at night. Sleep only comes during the day for those thrust into childhood cancer. Why? I don’t know. That’s just the way it is.

Gradually, you nap at night. One day, you sleep through the night. You awaken refreshed. Like the first time that little son or daughter as a baby slept through the night without waking you.

And you give thanks to God for the rest. And pray for more.

 

Chair Number Nine

Steve McKinion Uncategorized Leave a Comment

On Harrison’s very first visit to the pediatric oncology clinic at UNC he chose to sit in chair number nine. I don’t recall why he picked that particular seat. Perhaps it was the only one available. Maybe it had a good view of the nurses station (he just ADORES the nurses). Harrison speculated last week that it was because he was diagnosed on December 9.

20120131-092259.jpg

Whatever the reason, the fact remains that Harrison only wants to sit in the chair in row nine for his chemo infusion.

When we were talking about this strange ritual last week I began to think about how something so small plays such a big role in Harrison’s life. Some many things are out of his control:

Getting cancer

Treatment options

Whether he gets sick from the medicines or not

Nearly every part of this journey has been forced on him by the circumstances of his illness.

But choosing a chair? Now that’s something he can do.

I’m sure no one ever thought about the “self-determination factor” when not requiring “assigned seating” in the oncology clinic, and I hope no one ever does. Kids already lose so much to this disease, being able to chose a seat is one act of freedom and self-determination. Such freedom has to, just has to, contribute to the kids’ emotional well-being.

There have been only a few times when Harrison has been forced to sit in another chair, and, fortunately, most of those times have been when he’s gone in unexpectedly for a blood or platelet transfusion, and felt too bad to care. But there has been that occasional visit when someone got to the seat before him.

Not a happy camper.

He’s never fought another kid over the chair, and I’m sure he never will — of course, could you imagine that scene, two cancer kids fighting :-). But he loves that chair. It’s a place of comfort in the midst of chaos. A shelter in the middle of the storm.

This past week another kid was in his chair. A kid he who was once on his baseball team. I asked if he wanted to kick the other child out of the chair. He laughed and said, “No, he can have it this time. It’s a special chair and he may need it.”

I will never know why Harrison picked chair number nine, but I’ll always be grateful for it.  In baseball he picks #7 for Mickey Mantle (and Steve Yeager for any Dodger fans out there). But in cancer, it’s chair number nine.

Another First Day of School

Steve McKinion Uncategorized Leave a Comment

Yesterday Harrison, Lachlan, and Blakely started another school year. They join tens of thousands of kids embarking on another year of learning, playing, etc. On the surface, there is nothing exceptionally special about the first day of school, other than moms snapping shots of kids and posting them to Facebook.

harrison day 1

But for Harrison, and the tens of thousands of other kids with cancer, every first day of school is a huge accomplishment. It is a milestone like almost no other. The first day of school represents another year of survival.

We’ve known personally several children who lost their battle with cancer just in the twelve months since Harrison’s first day of sixth grade. We’ve talked to dozens of new members of the childhood cancer community. Every week we get phone calls, emails, and direct messages from new families with childhood cancer.

It’s never ending.

The first day of school for all of our kids is special. Yes, we took pictures. Yes, we posted them to social media. Yes, they all thought we were silly for making them do it. And yes, we’ll do it again next year.

This morning I read to the kids from Psalm 144:4, “Man is like a breath.”

We are here one day and gone the next.

I am grateful we took three pictures today. One of a senior. One of a sophomore. And one of a kid who almost never made it out of fourth grade, but is today beginning life as a seventh grader. Previously, we took pictures for sentimentality. Now we take pictures for the hope each one offers. Because each day, each year, is like a breath.