Sunday, July 20, 2008

Touching Others

Yesterday evening Kellen spent the night with a friend, and Blaine and the girls and I enjoyed some quality family time being slugs on the sofa watching television together and simply hanging out. For some reason, I have no idea why, we watched an episode of "Deadliest Catch", which we never watch. Then we watched some home movies of when the kids were very, very young. Then before bed, Brayden asked me to go online and read a parental review of the new movie "Mama Mia" to see if I would be willing to skirt the PG-13 rule and take her to see it. Earlier in the day, my brother-in-law and nephew from Dallas were visiting, and we talked about the Harry Potter series. I realize none of those things have anything in common, but just hang with me for a minute and I'll get to my point.

Just as I was getting ready to go to bed, I was sent a link to an article running in today's Atlanta Journal-Constitution newspaper about a boy we know who has cancer. I say "boy", when really he is a man. It's just that he was a boy, albeit a teen boy, when we first met him and that's how I continue to think of him. (Sorry, Tyler, hope that doesn't offend your man-hood sensibilities!) :)

Kendrie's cancer gig was hard. The diagnosis hit hard, the treatment was hard, the fear and worry that lingers in the back of my mind, and will until the day I die, is hard. NONE of what we went through is as hard as the gig Tyler is facing now. The article is about his life and his family and their journey together, through good times and bad, and really gave me pause when I read it. I sat down and thought about Tyler and the impression he has made on me personally. I signed into his Caringbridge journal to let him know I was thinking of him, and went to bed.

Where I had awful, terrible dreams all night long. The kind where you wake up, sobbing, because you are so devastated by what is happening in your dream. I dreamed the mom of the friend Kellen was spending the night with called to tell me they had taken the boys fishing and Kellen had washed overboard and been eaten by a shark and drowned. And in my dream I kept saying, "You're kidding, right?" until she convinced me that no, my son was dead. And then I dreamed some weird Harry Potter-type dream, where Brayden and Kendrie were both only toddlers, and I had been challenged to a wizard duel by a wizard that was much stronger than me. I knew I was going to die, and I was saying goodbye to my daughters beforehand. They were just babies and didn't understand, so I was singing them ABBA songs, holding them as close to me as I could, hoping they would always remember me, and sobbing in my dream as my girls were taken away from me.

And in the calm daylight, I know, those dreams sound kind of silly. But they weren't. They were awful. The kind where you jerk awake, and you're so incredibly fucking grateful to realize it was just a dream and those things aren't really happening.

What's happening to Tyler isn't a dream. I know that all those random things I did last night came together in my dreams. I also know that reading Tyler's article last night is what made me get out of bed this morning and hug my kids first thing. He is still, through his life, touching others. I, for one, am grateful. I hope you'll read this article, then visit Tyler's Caringbridge Site and let him know it touched you, too.

******************************

Son draws on mom's inner strength for final days


By BILL SANDERS
The Atlanta Journal-Constitution

Published on: 07/20/08

Connie Copley rubs her son's leg while a preacher prays for God's peace to surround their home.

"Oww!" Tyler yelps, midprayer.

The preacher keeps praying, and Connie keeps rubbing, moving from Tyler's aching leg to his aching back.

"In Jesus' name, amen."

"You were killing my leg, Mom," Tyler says.

"Sorry," she says, kissing her boy on his forehead.

A registered nurse turned stay-at-home mom, Connie Copley has combined her two chosen professions into the most heartbreaking job: stay-at-home nurse.

Her patient is her 19-year-old son. He is dying from Ewing's Sarcoma, a rare form of juvenile cancer he has battled since he was 12.

And though Tyler has hospice nurses now, the job of primary caregiver can't be taken from Connie any more than can the job of being his mom. "We have a saying around here," Connie says. "There's Mama, then there's Not Mama. Everyone else is Not Mama."

For seven years, Connie and her husband, Todd, have supported their boy while coming to grips with what the future might hold. For the past seven weeks, they've lived with the future they feared: Tyler's time is short.

Through it all, Connie has been the calm in the storm, the one who isn't rattled when Tyler gasps for air or spits up blood. But who can blame a mother for refusing to accept the worst?

On this day, the Rev. Jim Higgins is in the Copleys' home in Acworth to help Connie take the next step in a journey no parent should have to make.

Tyler's dad is here, too. But it is Mom whom Tyler watches closely.

How she handles this moment will tell him something.

She doesn't want to let him down.


Ending the fight

When the shades are shut in Room 181 of the Aflac Cancer Center at Children's Healthcare of Atlanta, it doesn't matter how sunny the skies are on the other side of the window. In here it's dark, jarringly dark.

Just 24 hours earlier, Connie thought her son was as strong as she'd seen him in months. Now she fears this is his last day.

Tyler's cancer, which typically attacks an adolescent's pelvis, shoulder or leg and then often spreads to other parts of the body, had metastasized into his lungs this spring. It was his third relapse, and everyone agreed it was time to stop fighting.

Doctors didn't know exactly how much time Tyler had left, but it wouldn't be measured in years.

Tyler didn't want to lie in bed feeling sorry for himself. That's not Tyler. A fast-talking jokester, he wanted to keep living life as long as he could.

Over the past several months, Tyler scratched a lot off his "bucket list." He graduated from high school, enrolled in college and started training for a triathlon. He got a matching tattoo with his dad and had his head shaved.

"His mother despises it because it is such a reminder of his cancer," barber Shannen Smith said of the shave. "We waited till after hours and I did it. Tyler is going to get his way till his last breath."

On June 18, Tyler starts coughing up blood from his lungs. The pain in his back and chest worsens. Tyler tells his parents to call 911.

He thinks of the living will he had signed. It says doctors should not insert a tube to help him breathe, but now his resolve not to be intubated is weakening.

"Find those papers," Tyler tells his mom. "Tell them they can intubate me if they need to drain my lungs."

In the emergency room, Connie tells the oncologist about Tyler's advance directive. She is having second thoughts; she doesn't know what to do.

"I won't make you make that decision," the doctor says. "I will. We won't intubate."

Connie is relieved. She knows this is how Tyler really wants it.

Tyler makes it through the night. But by 10 a.m. the next day, Connie is calling her husband back to the hospital. Tyler's breathing is labored. He can barely speak.

Until test results come back, doctors can't say how much internal bleeding Tyler has suffered. Bleeding into his lungs, the family learns, is one of the ways he might die. Finally, word comes that Tyler has experienced oxygen starvation, which is another way he might die.

Usually kids with Ewing's get progressively short of breath as the tumor invades more of the normal lung. The oxygen level in their blood drops. "They usually become more sleepy and less aware of what's going on around them — and we think they are less aware of what's happening to them," says Tyler's doctor, Bradley George. "It can be tough for parents and families — and their doctors — to watch as the kids are working hard to breathe."

Tyler receives a morphine and albuterol breathing treatment. And he does a 180.

Soon he is joking again, texting friends, frustrating doctors and nurses. "Can I trade you in for someone else?" he asks the head nurse.

He has a captive audience and re-tells a story of receiving a phone call from President Bush a few weeks ago. Then he describes a practical joke war he's had with his brother, Kirk. Laughter fills what was, only hours earlier, the most somber of rooms.

But the joy is tempered with this: Connie Copley listens as hospice nurses tell her son they will be at his house before nightfall.


'I'm falling apart' inside

On the outside, Connie looks calm, confident. "On the inside," she says, "I'm falling apart."

The worst moment didn't come seven years ago, when the family learned of Tyler's cancer. The worst came when the cancer returned four years ago. Connie knew only about 5 percent of Ewing's kids survive a relapse.

"It was 100 times worse, getting that call," Connie says. "There were times when I couldn't drive because every time I was alone in the car, I was crying."

A year ago, she had to make peace with another reality: Tyler turned 18, and Connie and Todd could no longer force him to endure treatments he didn't want.

Nine months ago, he chose to have his left leg amputated in a desperate attempt to rid his body of the cancer.

Acceptance has not come easy.

"I've never been totally accepting," Connie says. "We went to the lake with some friends and there was a nice church service with all the boats one Sunday morning. Someone sang 'It is Well With My Soul.' I fell apart. It is not all well with my soul. I'm not ready for this. I know I am not there and may never be.

"But six months into his first treatment, I remember thinking there's only so much you can do. It is not my will, it's not what I want, but it is for a purpose. I gave that up a long time ago, having control."

Connie takes things one day at a time. That means she can go all out today, then wake up to face another today. And, if she's lucky, another.


Monday's routine

The Monday evening routine at the Copley house was always rushed, even in the best of times. No one would mistake these for the best of times. It has been only four days since Tyler's emergency room scare.

Todd Copley has just gotten home from Dobbins Air Reserve Base in Marietta, where he's a navigator. Connie has just dropped off Tyler, whom she'd driven around on a handful of errands, and now must leave to pick up daughter Sarah, 12, at a friend's home.

Middle child Kirk, 15, is lying on the couch watching TV. Tyler heads to his room and plops down on his bed.

The next 30 minutes are harried. "Dad, I need ... the oxygen mask ... now," Tyler says in a loud whisper.

Connie pulls into the basement garage with Sarah, who has 12 minutes to change into her dance leotards, eat dinner, put her hair up and be out of the house for her lessons.

"Tyler! Tyler!" Connie says, walking into his room. She's concerned and compassionate, but not panicked. "Does it just hurt, Tyler? Do you need to cough?"

Tyler grunts and starts coughing into a bedpan.

"Todd, get the mashed potatoes, put 'em in the Tupperware," Connie calls from Tyler's bedside. "Sarah's got to go."

Todd needs to take Kirk to Boy Scouts.

"Mondays," Todd says, exasperated.


No time to freak out

Nothing is effortless for Connie, and that includes refraining from breaking down in front of others. If there is one trait that comes naturally to Connie, it is her calm.

"Oh, my kids hated it that I wasn't the mom who freaked out every time they got a little cut or bump or bruise," Connie says, sitting at the end of a physical therapy table one afternoon, rubbing Tyler's remaining foot.

She throws a glance at Tyler. "You'd freak out if I freaked out. So I've got to stay calm. It's good that I'm not the freaking-out mom, right? That's good Tyler, right?"

"Right."

"It just feels really good to have your foot rubbed," Connie says, explaining the medical benefits of what she is doing while they await Tyler's therapist.

"Rub my thigh," Tyler says, pulling the oxygen mask from his face to make the request.

"Get me another pillow, please," Tyler says.

Connie obliges each request without hesitation. Knowing she has done everything she can for Tyler will help her in the future.

"Maybe because I was a nurse, I know too much," she says.

So sometimes, she protects her husband.

"I see some things, like Tyler's motor skills not being as good as they were, and I know that's not good. But Todd doesn't need to hear about that."

What she wants in return is for Todd to not talk about the future too much — especially about things like where Tyler will be buried.

"I'm sure Tyler has an opinion on that," she says. "He'll bring it up when he's ready. I'm not ready."

Connie and Todd were married 21 years ago, and with Todd in the Air Force they've lived in Arizona, California, Germany, Arkansas and now Georgia.

In Arizona, Connie worked at a hospital in orthopedic neurology. Later, she took a job as a nurse in an eye surgery center. When they moved to Germany, she stayed home and has not worked out of the house since.

"Will you grill me a Vidalia onion when we get home?" Tyler asks, feeling a little better, still waiting on his physical therapist.

"Yes."

"Please remember, Mom, OK?"

"I will."

"Just remember. Because I might forget."

"I will, Tyler."


Another step

It is mid-July. Time for Connie to take another step.

Higgins, the family's pastor from McEachern United Methodist Church, helps her, Todd and Tyler plan a funeral.

Tyler had brought it up, just as Connie knew he would.

Higgins starts: "This is about you," he tells Tyler, "but it's for them."

Tyler likes the sound of that.

"Tell us the things that are important to you now, and we'll try to do everything we can," Connie says to her son.

Tyler wants music that is "different, like me." He wants a tree planted with a memorial stone under it. And what if he wants to be buried in his home state of Ohio? Can he do that and have a service here?

"We can do a graveside service there," his mother tells him.

Connie can hardly believe she is planning her son's funeral without falling apart. She has an overwhelming sense of being held up by God.

Connie's faith has been challenged and has grown because of Tyler. She doesn't pretend to understand the whys; she doesn't even want to.

But she believes in the goodness of God and that one day, she'll see her son again.

At this moment, she wants Tyler to finally have some sense of control.

"You think about it all," she tells Tyler. "We'll talk about it, and I'll write it all down."

Then she starts to rub her son's back, knowing how important this meeting has been — for everyone.

20 comments:

Pam Doughty said...

Perfect.

Anonymous said...

Bless their hearts. Thank you for sharing this. What an eye opener to what others are going through. A friend of mine lost his son to Ewing's Sarcoma which also metastisized to his lungs. He was 15 when the diagnosis was made and 18 when he passed away. He was one of the speakers at his high school graduation. He said, "People always ask you what you want to be when you grow up. What if you never grow up?" He knew that his life would be short. We take too much for granted. Thank you for the reminder to cherish each moment and live each day to its fullest.

Claire in Indiana

Sarah said...

I have been keeping up with Tyler from the time our friend Carter Martin died. This article paints a good picture of what they go through. It breaks my heart.

Right after Carter died, I had those same dreams of my children being swept away and I couldn't save them. Nightmares, actually. I can't imagine having gone through what you did with Kendrie and NOT having those nightmares.

CAT said...

Hey Kristie,

Thank you for posting that article it is a real eye opener and sure does make you appreciate your kids alot more. My girls are gone camping this week with their dad, but I will hug them extra tight when they get back.

She is an amazing mom with so much strength, I admire people like that so much, I couldn't even begin to imagine what a day in her life feels like, Tyler sounds like an incredible young man...My thoughts are with their family.

Cathy

Allison said...

After my son was diagnosed (ALL '02) I had a recurring dream that men were trying to kidnap him and I was trying to keep him safe. So we would run and run and hide, but they were always right on our tail (doesn't take a dream analyst to figure that one out, huh?) Every once in a while when I hear that someone is diagnosed or read someone's CaringBridge, I will have it again. And it IS such a relief to wake up and realize it wasn't real! Thanks for posting the article--very inspiring. These kids are just amazing!

Allison in Oregon (Josh's mom!)

Cindi said...

Cancer affects so many lives in addition to the patient's. Thank you for sharing the article about Tyler and his mom. Things like this are a real wake-up call for those of us who just THINK we've had a bad day.

Eloise said...

Wow. What an incredible young man. My heart breaks for him and all who love him. I left a message on his Caring Bridge page. How amazing that he's the one who updates the message there.

Thank you for sharing his story. I'm sorry that anyone has to go through that.

Anonymous said...

This reminds me of your "Thanksgiving Analogy". I am thankful for the small "crap sandwich" we had, and pray it is our last one. I HATE cancer.

I will pray for Tyler and his family. What a strong family.

Machelle, Mom to Elizabeth

Anonymous said...

Kristie,
How nice that you shared Tyler's story with others. This was our family three years ago.. Our son went to the Lord three years ago next Sunday. The strength Tyler shows in his journal reminds me so of my son. You know it is a strength that only the Lord can give.

I am so glad you have such wonderful stories you share of your children. I love reading them. You bring a nice laugh to me many days.

Karen

Jacqueline said...

Kristie,

Thank-you so much for that. I really needed it. It touched me in so many ways...My uncle recently passed from complications of colon cancer and about a year and a half ago, my internet buddy, Trevor passed from reoccuring Ewing's Sarcoma. Both of those deaths have been very difficult for me to accept and deal with. Reading about Tyler and his family and their incredible faith and courage throughout this is such an encouragement. Thanks so much for sharing.

Grandma J said...

I have followed Tyler's journey since 2003, right after Andrew was DX, and I probably learned about Tyler from reading Kendrie's site (since Kendrie was also in treatment in Atlanta.)
I have always admired Tyler and the whole Copley family. Tyler never let his cancer get him down, he loved going to Ohio to see his grandfather and he love the Boston Red SOX. He is just about the bravest young man I've ever known through Caringbridge...his great attitude when he had his leg amputated, his determination to participate in a triathlon in San Diego I think. Anyway, I just can't bear another child getting the short end of the stick, and the guilt when my own grandson was one of the lucky ones...who decides? I know that answer but I don't understand it. Damn, I hate cancer....especially pediatric cancer.

lynne said...

Sorry, since you've started this new blog and with your upbeat writing I forget that I came to you through Caringbridge and you still live every day with worry and Blaine's pain. I will add Tyler to my prayers.

Wendy said...

wow. I can only hope to be so strong.

Sandy P said...

I "met" Tyler the same way I "met" you (through William Olson..I was his math tutor). I read the article yesterday and was just heart broken. I know what is going on through his site, but the article gave a different perspective. I can only imagine how you read it as a parent.

Jeri from hawaii said...

Thanks for sharing Tyler's story. I've been a little stressed and overwhelmed lately and that was just the dose of reality I needed to put things in perspective. More importantly, I can add Tyler and his family to my prayers... sometimes that's all we can really do.

Natalie said...

Wow. It never gets any easier to read about another case of pediatric cancer. I know we all try to keep up a brave face on CaringBridge MOST of the time, but it's just not possible all of the time. I don't know about you, but I swear I've got some sort of PTSD after Finn's chemo. I still wake up with panic attacks in the night certain that I've forgotten to give him his chemo and that he's going to die because I forgot. My heart aches for Tyler and his family. Thanks for sharing his story.

Ginger said...

Wow. I sit here reading Tyler's article and relive our experience from 7 years ago like it was yesterday. Our Jason battled Ewing's for 11 months before it metastisized to his lungs. Two weeks before he was gone, we spent a wonderful evening doing things (he marched in a drum and bugle corps show and then spent hours hanging out with friends....his favorite things to do) neither of us thought he would be strong enough to do, and documenting all of them in pictures.

He knew it wouldn't be long for him and he made sure that not only did HE live every moment, but that we all knew that is what he EXPECTED of us even when he couldn't be there in person anymore. He got really frustrated when friend touring with other drum corps would complain about being hot or tired or not scoring as well as they'd like.....he would have given ANYTHING to just be there to be able to be hot and tired. When I don't think I can keep going, he reminds me that it's a privilege to be there...

My kids all know that I expect them to live "Jason days", and every student I teach hears about him and how important it is to use every minute in a way you want to remember. THANK YOU for bringing back all of my Jason memories and adding Tyler's story to them.

Trish in VA said...

humbled. That's what I am as I read this. thanks again for the reminder that my seemingly big issues are really pretty darn small.

tycopley32 said...

Thanks Kristie...

Patty House in Indiana said...

Whew. I don't think I can endure another post like that. I'll have to wait until I'm alone at work this weekend to read their website...