Tag Archives: Rotationplasty

“I feel bad.”

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It’s late and I should be sleeping, but there are just moments in life that ask to be written about.

Tonight was a Brighter Tomorrows night. Those who know me know this is my favorite night of life, every single time it happens. Those who don’t know me now know that it’s my favorite. Moving on.

We had 37 kids RSVP. That’s amazing to me. I don’t want kids to have cancer, but if they do have cancer, I do want them to come to Brighter Tomorrows to play games with us, to laugh with us, and to have summer camp with us once every month.

One conversation (among the many that are seriously the most inspirational things in life) tonight struck me and just keeps playing over and over again in my head. That’s why I am writing and not sleeping.

There is a 7 year old boy with Ewing’s Sarcoma, a rare form of bone cancer. I know most of his story because I’ve read it, met his family, talked with others who know him. But he doesn’t know that. He just thinks I know him for him. So we’re making some crafts and I mention that he still has his port accessed (most of the time kids don’t leave with a line in if they are just going for chemo) and I ask him why that is. He tells me that it’s for radiation and goes on to explain the burns that he has from it.

He rolls down the edge of his comfy pants, and I see the red line where that burn starts. I ask him casually if it hurts (because to him, cancer is casual and a part of life…I remember) and he says “Nope, not at all.” I’m sure at some points it does because his skin is all a deep, deep red and has a rough look to it, but he gave me the right now answer which is technically what I asked for. (Kids are amazing and I love them.) Then I go on to explain to him that I had cancer as well. I explain my leg and why I didn’t need any radiation and why he does but how we are similar. And then he listens and he and his brother start asking questions.

“Do you have a scar?”
“Yes, one here and here and here.”
“How did they hook it back on?”
“With a plate and screws.”
“So you have metal on you?”
“Well, sort of. Technically I have metal in me.”
“Does that hurt?”
“Nope, not at all, and it keeps my leg on there safely.”

We giggle.

He persists…

“Does it hurt to wear your leg?”
“Nope, it’s made just for me.”
“So your foot is just in there like that, huh?”
“Yes, just like you’re doing it!”
“Wait, so you lost your hair!?”
“I sure did.”

He stops.

“I feel so bad,” he says.

I tell him not to. He tells me he feels bad for me. I tell him I’m okay and everything is good and life is great. He insists that he feels bad for me.

Life is about perspective, my friends. Look without yourself.

…because love wins.

Words I support.

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I’m tired of people romanticizing overexertion. Exhausted is not the new chic. Coffee (though {sometimes} a delicious necessity) is not a food group, and running on fumes is not admirable. Why do we hold pedestals for sleepless nights, break downs and inner turmoil? Are those things really to aspire to? Self care, balance, the ability to  know when your body, mind, and spirit need to take a step back. Those are things we should admire. We have to stop blurring the line between ‘commitment’ and self endangerment, because too many people are burning out before they have a chance to truly shine.Exertion

…because love wins.

17 things I learned in the 17 years since I was diagnosed with childhood cancer.

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March 11, 1998.

We never forget the days that change our lives. We never forget the moments that change our lives, as a matter of fact. I had one of those on that day. I haven’t forgotten it. I never will.

I had been walking with a limp for about 3 weeks. I was a totally healthy, vivacious, excited little girl. Here’s a picture!

Age 6. :)

Age 6. 🙂

See? Right? Totally healthy. But that knee pain I had wouldn’t go away.

On March 11th, 7:35am, I was walking to the school bus. About halfway there, I fell down. There was a serious sharp pain in my left knee. I remember thinking I didn’t want to look dumb (classic 3rd grade thought process) and it hurt. A lot a lot a lot. The bus was waiting, and it was a shorter distance to get on the bus than to go home, so I got on the bus. I went through my day, limping along, trying not to walk. I have no idea how I was even moving at all.

We had an appointment scheduled with my family doctor that afternoon. When I walked into the office, he told me that he hadn’t seen anyone ever limp like that. The reason? My femur was shattered. The reason?

Bone cancer.

I was 7 years old. I played basketball and giggled and tried to avoid going to sleep at night.

Cancer?

CANCER?

The next day started 49 weeks of chemotherapy, the removal of my leg and a procedure called Rotationplasty (You can learn about that here.) and way too many sharp needles, anesthesia and brokenhearted moments than I can consciously remember or that I should have had to go through as a human being, regardless of age.

So, in honor of the days that I have lived (happily) since then, I want to share with you 17 things that I have learned since March 11, 1998.

1. Life is short. 
Not in the cliche, “Yeah, people say that all the time…” way, but in the “Don’t wait until someone you love is dead in a car accident before you figure this out.” way. Seriously, it can all end right now, and you need to not worry what everyone thinks of you or feel bad when people don’t like you. Choose the way you want to live those short days and then do that. Live, please.

2. Kids die. 
And it sucks. It sucks way worse than someone who has lived to 80 years-old dying. I’m not saying any one life is more important than another, but I am telling you that burying my best friends (4 of them) by the age of 12 is horrendous and wrong. It’s so so so so wrong. Parents should not have to live all the years their kids were supposed to without them. Which leads me to…

3. There is a pathetic amount of money allotted for childhood cancer research. 
I had 49 weeks of poison (chemotherapy) that potentially ruined my heart, potentially took my ability to have children, and certainly made me throw up burning vomit way too many times. The saddest part is that it’s been 17 years and kids today are still taking the exact same awful drugs. With an 80% survival rate. (Which I would say is definitely much lower than 80.) And they haven’t figured out why a lot of my friends never lived and I did. There aren’t many people who took this stuff and grew into adulthood, so there’s not really a way for me to know what my future related to this stuff will bring. Please help. Follow this facebook page and do what it says: TheTruth365.

4. Haters are gonna hate.
There is a saying that goes something like, “In the world people are going to hate you, and people are going to love you, and none of it has anything to do with you.” People make bad choices when they’re mad or scared or stressed. (Thanks, Frozen!) So be graceful and don’t worry too much.

5. God is everywhere. 
You just have to let yourself listen. Even when the truth hurts. Especially when the truth hurts.

6. Illness isn’t terrifying.
Sometimes it is, I suppose, but for anyone who is the friend of someone with a chronic or serious illness, don’t leave said person or family alone. And don’t be upset if they want space or you say the wrong thing. But answer the phone at 2am, expect nothing, give real hugs, and be willing to be whatever they need.

7. You should love yourself. 
There is a complex that tends to come after someone has been through a near-death experience which includes putting everyone else first. And then putting everyone else first until that person is basically dead from never paying attention to themselves. So it’s good to take care of yourself. Paint and laugh and don’t let people use you. You deserve the best too.

8. I am handicapped. 
Lots of people are. In fact, we all are – face the fact. We all have something really wrong with our broken souls. And I think that’s a really important thing to remember when someone can’t help themselves and you have the opportunity to love them.

9. It’s not easy to talk about pain. 
I’m a professional speaker, but that doesn’t mean that it’s easy to talk through the agony that I experienced. There’s this fine line between people wanting to hear the truth and people thinking you’re asking for pity by sharing what you’ve felt. Pay no attention to those people. If you have pain, talk about it. If they choose not to listen, they lose.

10. People won’t always leave, and they won’t always leave you.
There’s my greatest fear. Now you know that. (Yay vulnerable!) I’m sure this grew from holding my friends’ hands while they died and thinking I would never be fully understood again, but in the years since that and some wonderful people in my life, I have learned that people won’t always leave. And I have learned that some people really really want to stay and love me if I let them be inside my heart. Give people a chance.

11. Healthy food isn’t just a fad. Tubing 2
Having a life threatening illness was pretty awful. But it also benefited me in great ways. Because I don’t like toxins because of that experience, I avoid them. And I am pretty particular about taking care of myself with what I put inside my body. And I know I live a more full, happier life because of it. Eat less Doritos and more broccoli. It’s worth it!

12. Downtime is not wasted time.
I laid in my bed for a really long time when I was sick. Like, about a year. And it’s clear that that time has not been wasted, even though I was doing nothing for 49 weeks. You’re human. Slow down. Life will come to you.

13. Sometimes hope just doesn’t feel real. 
There will be times in your life where you can’t hope. Where you realize that the thing that you have been hoping for for so long just isn’t going to happen. And that’s okay. Give up, cry, get mad, do whatever you need to do. Just because we don’t think there is hope doesn’t mean there isn’t. And it doesn’t mean that the days won’t get brighter again. They will.

14. Tie your brain to your heart. 
If you want to do something that really helps people, don’t just dream. Figure out what skills you need to tangibly do the work. For example, if you want to travel the world and feed homeless, start learning languages now. If you want to start a business, learn how to start a business. And then put your heart into your intellect.

15. Don’t take boredom for granted. 
I remember being 15 and telling my parents I was bored. But then I realized that I may be bored because my life is just okay at that time. And it’s not falling apart. And that means there’s goodness – and that’s not boring at all.

16. Bad things can still be bad years later, but they don’t have to rule you. 
I realize that there are some things from cancer which totally left me with PTSD. That’s the reality for my life, and I’ve accepted it. That’s pretty lame, but so are tsunamis, and I haven’t been through one of those. And some other people have to accept them in their lives. So it’s okay to not like things that happened to you. But that doesn’t mean they are in your now, or that they will take you down. Nah, there’s always healing, and always growth. And you’re good now. Just learn and live.

17. Jesus loves you. Jesus
I have tried this one out. I have searched the depth of my heart and society many times. I have watched people die, kids without parents in hospitals, and kids around the world who have no medical care and die just because of that. And there is still love – and love is the currency we should really use. Jesus is the only way to God, and there is one God, and He is Jesus’ father. And you know what? Whether you know it or not, He loves you. And He’s going to come back. Don’t wait to talk to him until your life doesn’t make sense anymore. Someone will always, always love you.

Here’s to 17 more years!

Love to you all.

…because love wins.

I’m only human.

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I can hold my breath. 
I can bite my tongue. 
I can stay awake for days, 
if that’s what you want.
Be your number one. 

I can fake a smile.
I can force a laugh. 
I can dance and play the part,
if that’s what you ask.
Give you all I have. 

I can do it. 
I can do it.
I can do it.

But I’m only human,
and I bleed when I fall down. 
I’m only human
and I crash and I break down. 

Your words in my head, 
knives in my heart. 
You build me up
and then I fall apart. 
Cuz I’m only human. 

I can turn it on. 
Be your good machine.
I can hold the weight of worlds, 
if that’s what you need. 
Be your everything. 

I can do it. 
I can do it. 
I’ll get through it. 

But I’m only human, 
and I bleed when I fall down. 
I’m only human 
and I crash and I break down. 

Your words in my head, 
knives in my heart. 
You build me up
and then I fall apart. 
Cuz I’m only human. 

I’m only human. I’m only human. Just a little human. 

I can take so much. 
Til I’ve had enough. 

Cuz I’m only human, 
and I bleed when I fall down. 
I’m only human 
and I crash and I break down. 

Your words in my head, 
knives in my heart. 
You build me up
and then I fall apart. 
Cuz I’m only human.

Who do you say I AM?

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“Once when Jesus was praying in private and his disciples were with him, he asked them, “Who do the crowds say I am?”

“They replied, “Some say John the Baptist; others say Elijah; and still others, that one of the prophets of long ago has come back to life.”

“But what about you?” he asked. “Who do you say I am?”

“Peter answered, “God’s Messiah.”

Pause. What does that mean? Webster, whatcha got?

Image

I wonder if they all already believed that and were like, “Well, yeah, duh, Peter. Obviously. Maybe His question was rhetorical? He obviously just caught about a bazillion fish for you. Or were you asleep for that?” And then Jesus has to be all like, “Calm down boys, no competition needed here. You can repent to Me for that later. I’m still here to save you.”

I mean, it could have happened. They’re humans. And men. I’m half-kidding. We’ve all been at a football game before. Men are good competitors.

Anyway…moving on.

gardenThe other options are something likened to stopping breathing or realizing that this is potentially a mental health problem on a grand scale. They could have all been thinking, “You know, a year ago I was just chillin’ with my money and now I’m hanging out with these other 11 guys that I’m not sure have a clue, walking around with this guy who prays in gardens when he should be sleeping. This seems like a good time to jump ship.” Or, they were just like…”Eh, whatever, I was bored anyway, and this could be fun.”

That last one is probably unlikely, but still possible. Still humans.

The final option is that they could have gotten it. And knew that this was the real thing. This guy showed up. He didn’t come all fancy based on world’s standards (They probably thought he’d show up in a Fisker Karma or something.) but sure did have something special about him. Maybe that was the point.

Jesus goes on,

“[He] strictly warned them not to tell this to anyone. And he said, “The Son of Man must suffer many things and be rejected by the elders, the chief priests and the teachers of the law, and he must be killed and on the third day be raised to life.”

“Then he said to them all: “Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me. For whoever wants to save their life will lose it, but whoever loses their life for me will

save it. What good is it for someone to gain the whole world, and yet lose or forfeit their very self? Whoever is ashamed of me and my words, the Son of Man will be ashamed of them when he comes in his glory and in the glory of the Father and of the holy angels.”

Man. We just established that he’s the Messiah. And now he say to these guys, “Well, let’s go. Leave your whole life. You don’t need anything you’ve ever had before; just Me.”

sandals

Are you kidding me? I would have been like…”Um, my house, my donkey, my only book that I’ve got hidden in my backyard, my rice, my beans, my SANDALS! You’re just a guy – and we won’t get many showers travelling like you intend. Smelly and no iPhone. How can we make it?” (Who knows…Apple could have been there too.)

I think we all would have been. I also think it’s easy to think that these men were something special, that they saw something that made everything make sense in a way that it doesn’t now. I think we think it was easy for this men to do this.

But think about it. There’s no way in the world that they would have been able to just do this without a major struggle. It’s quite obvious that there were enough people around who didn’t think Jesus was the right One. And they thought that enough to murder Him.

Therefore, I think it’s safe to say that it wasn’t easier for them to believe than it is for us to.

But he was also talking about dying. And saving the world. And that catches my attention. And theirs.

It’s then also safe to say that it was right.

Think about your closest friends. Do you care what the world thinks about them? No, you don’t. You care about who they are. And you will follow them, be with them, and live life with them, because you know who they are.

The same applies to Jesus. We are just like Peter. Who do the athiests say Jesus is? The Mormons? The Muslims? Well, they say He’s something that He’s not.

But He says to you, “Child, who do you say I AM?”

Will you come?

…because love wins.

Jesus

Cited: Luke 9:18-27

You’re a survivor and that is amazing.

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Each day older I grow, I understand more the reality of what it means to have survived childhood cancer. As a younger person, it was just a part of my life; I hadn’t seen much else, and I was just too busy playing to understand what it means to still be alive today. But now, I marvel at my leg, my hair, and my beating heart. Let me tell you why.

I stood up one morning. I took a step, and my knee gave out beneath me. I never knew that I’d never walk on that leg again. I ate my vegetables, and I slept full nights, and I was even nice to my friends. I never would have expected cancer. I probably would have just called you a liar if you would have told me that was really going to be my life.

But alas, I couldn’t walk. Soon, I couldn’t eat. I couldn’t get out of bed. Sometimes, I almost couldn’t breathe. To say that it’s a humbling experience to face mortality is just more of an understatement than I can explain. No one can walk to death with you. It’s you, and Jesus, (which is why you need Him), and death. I met myself in ways that I cannot describe.

I remember laying in bed begging God to make the throwing up end. To bring my friends back to life, and to just make it all be okay. And seriously, I don’t even know how I survived. I looked dead almost every day for a full year.

But then I did. I started to take steps on crutches. I made myself get out of bed. Jesus restored my spirit, and I locked eyes with death, and shook my head, “no.” And I just turned and walked away into the rest of life.

I am 23 now, and I feel like I grasp that death didn’t win, but that it sure could have. My fingers move, I can take a deep breath, and I can kiss my nephew. And it’s very much on purpose that I am alive.

The take-away is this. If you haven’t met death yet, listen to what I say. Right now, you’re a survivor, and that is amazing. Don’t take that for granted.

….because love wins.

Dreams do come true.

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ImageShe steps out into the light. The backstage had been a flurry of hundreds of people milling around. 

“Decker, check. Check. Check.” 

In 2 hours, thousands of people will enter this auditorium. They’ll come from all around the country. They’ll be in the middle of a fight with their wife. They’ll wish their children could do better in school. They’ll have an autistic sister. They’ll be sad. They’ll be hopeless. They’ll be happy. They’ll understand life, or they won’t. 

She stops out there. Says a prayer.

“Abba, it’s not me. It’s You. You have them. You be with them. You dream loud, speak loud, do what you do. I’m just so human.” 

She looks down at her leg. Who would have thought that this piece of molded plastic would lead to a headset, singing on stage, jumping up and down, crying in front of people? Well, surely not she. She was just this little girl with doggies on her footy pajamas sitting on the porch talking to her Father. 

And a tear falls. One tear, as she looks down at her mom, dad, and sister. Front row, always catching a tear, a hug, a smile, a reminder of who she is. 

Who is she that she could speak through an amputation and chemo drip? 

She’s just a human. Who has lost much. And who has everything, because of Jesus. 

She’s a girl who watches His dreams for her come true every day. 

…because love wins.

I have depression.

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I have depression.
But I am not depression. 

I am not a foggy thought.
I am not a worried eye.
I am not an aimless tear.
I am not a useless try.
I am not my frustration.
I am not just lazy.
I am not really mean.
I am not crazy.
I am simply me.

I have depression.
But I am not depression.

I overcome each day.
Just to get out of bed.
I wake up and say,
“I’m going to try again.”
I withhold how I feel.
And sort my self from my thoughts.
I try to be who I am.
And even if you don’t understand,
I’ll never see you for what you’re not.

I have depression.
But I am not depression.

I am open, honest, helped.
I am well.
I am stable.
I am understanding.
I am able.
I am strong.
I’ve sought light.
I’ve come to see,
That life doesn’t have to be a fight.

I have depression.
But I am not depression.

I write these things to you,
and you may know what it feels,
or you could turn and walk away.
But there is one thing to know –
whether you have depression or you don’t,
the world around you has depression,
so tell them right now that they’re not alone.

I have depression.
But I am not depression.

A little known fact about me is that my family is riddled with depression. I myself manage it, understand it, and am treated for it each day. I’m writing this honest post to share with those who have depression that you are not alone – there is hope, there is life, there is sanity beyond the fight.

I am well. I have been taken care of. This society that we live in seems to think that those with depression are muted by their medications or should be left alone to cry. But I want to silence that today, because you’ve seen me, and I’m alive.

Who I am is not pretend. I’m just finally me. So do not leave those with mental illness alone. Rather, take a moment, and help them believe.

Most importantly – I am not my depression. I am not hiding, running, fearing. I am free. If you have depression, you don’t have to live this way. Reach out just a little even if you don’t feel you have the strength. Someone will help you until you can walk again.

If you are afraid of depression, ask me about it. Seek to understand. You can no more hide than a penny in a water glass. Be kind – for you yourself may face this one day.

And if you’re taking care of your depression – I am so proud of you. And I’m not the only one.

I’m going to leave you with a video of a little girl with cancer and rotationplasty who I have been blessed to mentor. She is brilliant, and though this dance exemplifies overcoming a physical disability, it  speaks to our mental lives as well.

Back on the stage!

Share this with your friends and family and share your success stories below. And, keep smiling – on and on.

Oh, and, just don’t ever. give. up. One more breath at a time.

…because love wins.