Tag Archives: osteosarcoma

“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.

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.

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.

In the Hall of Fame.

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ImageOften in life, as a leader of many who is also a young adult, I’ve had a lot of lash back. Not that people didn’t like what I was doing, or didn’t want to walk alongside me, but that people often times didn’t (and don’t) believe what I am saying or that why I am acting is genuine.

But the reality is, even in this broken world, some people are still honest. And some people really do still care about you. And they don’t do things half way. They are loyal. They will come in the middle of the night – probably with your favorite tray of cookies.

And they aren’t here to push you under or away.

In the midst of bombings in Boston and explosions in Texas and entire countries unaware of the outside world because of tyrants, be a sparkle. Be a light. Don’t let people who aren’t genuine make you think that you can’t be either.

It’s that kind of thing that gets you in the hall of fame.

…because love wins.

Waiting.

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Fifteen years ago today I was in a cold hospital, waiting to start 49 weeks of chemotherapy. If there was one thing that I got good at while sitting in the hospital, clinic, or that year, was waiting. Not that we ever get good at waiting, I suppose, but I did get more accepting of the reality that time moves as it does.

When I have been healthy in my life, time has flown. As soon as it gets hard, I have the flu, or I have a cancer check-up, I wait again. And it’s hard.

But I’ve learned, that the waiting can be a wonderful time to know myself, and to know Jesus. That while I want something I deem good to come, it is already here. If I’m waiting, I’m already running the race for Jesus.

And I’ve learned that chances are, the waiting is time for me to rest. So just like I rested before a battle for my life, I’ve learned to always wait, serve, and live.

I’ve learned we’re never really waiting – what we want, we already have.

His name is Jesus.

https://www.youtube.com/watch?v=ozjzeQ9oiSM

…because love wins.

My leg, for you.

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I never met the man to whom I gave my prosthetic leg, but his name is Francisco. He lives in Nicaragua, and because I had rotationplasty, he was able to use one of my old legs to walk – all the way across the world. 

You know, we’re not made for anything but to hold one another up.

Walk strong, Francisco. It served me well – and now it’s yours. 

Image

 

…because love wins.

You are a beautiful thing.

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This is one of my favorite songs, forever, and for always. You are a beautiful thing. Because God made you that way. Accept it, and let it be beautiful.

…because love wins.

Your Heart is a Muscle.

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“It’s times like this you must be calm. You gotta work it out, make it stronger, try for me, just a little longer. You say love’s a fragile thing, made of glass, but I think your heart is a muscle.”

Our hearts do not just break. They hurt when they stretch, but they get stronger after that. Don’t you give up. You will not break.

Your heart is a muscle.

…because love wins.