I want to share my story with you
because I want you to understand
why what Rally does is so important.
I want to warn you
that unfortunately…
my story does end up, wrapped up with a pretty bow.
Grace and I met at the beginning of 2015
when she started swimming with BlazeSports, which is an adaptive sport program.
And the very first time we met, our coach actually told me
he was like, "McClain, what classification do you think Grace would be?"
I was like, "I don’t know, I can’t see her!"
So he goes, "Well, feel her leg."
And this brand new girl, I’d never met her before—
I had to dive under the water and feel for her leg.
Inspirational from the moment she walked in.
The faith that she has in living,
living to the best of her ability.
She just exudes positive attitude,
joy, hope, faith…
She’s Grace.
She’s an angel,
an angel to everyone.
And we both just—
when I popped out of the water, I was like "S9"
and we both just started giggling because
the very first encounter we ever had was when I was feeling her leg.
And just after that, every time she would come to practice,
we would talk and hang out afterwards and we just created a really special bond.
And she was just so spiritually uplifting.
You would never know that she goes through the pain and suffering that she does.
Everyone’s drawn to Grace because she is just
so precious.
Grace is not the type that walks in the room and commands it,
but she walks in the room and she lights it up with this quiet bright light.
You know, and so you just are drawn to her.
You know, there’s people you meet in your life that
all you have to do is meet them once and just for a moment and
their with you forever.
And…
I think Grace is one of those people.
I met Grace in math class,
and we just clicked.
And we’ve been going strong ever since.
Grace bonds everyone— she’s so contagious that whenever you hang out with her, you
get to see her, and her dedication and work ethic kind of just
drawn to do as much as you can—
just naturally comes out of you.
Wonderful, wonderful attitude- and just uplifts everyone around her.
People that don’t even know her are uplifted by her spirit,
and her drive to live and live her life the best possible way she can.
It’s a joy to be with her.
She is so funny, and her personality just shines through
in every way and kind of a natural leader.
She just lives every day and doesn’t really understand
or fathom the impact she’s had on anybody’s life.
She’s just a great person to be around
and a great person to work out with and swim with.
With her spirit, and her smile, and her laugh,
she always make everything fun.
You know, I looked at Grace and I just looked at the sparkle in her eyes.
And I said, “you’re an amazing person."
And I didn’t know her story then because I had just met her for the first time,
but I could tell that she’s going to
stir some emotion in some hearts that evening,
and sure enough she did.
Her laugh, her smile, her spirit— she’s my best friend.
She does what a friend does:
we get in fights, we laugh, we cry, we watch movies, we hang out—
most of the time that’s in the hospital, but
we’re still together.
Her spirit’s probably the biggest thing.
Her motivation to keep on doing what she loves,
she loves to swim.
I am going to die
because of Osteosarcoma.
I am going to die of a disease that treatment has not changed in three decades.
Three decades.
When I was 11, I was diagnosed with Osteosarcoma,
Bone cancer that had already spread.
As a result, I completed 18 rounds of chemotherapy,
underwent a unique partial leg amputation called "Rotationplasty"
And had two lung surgeries.
Despite what had seemed like a good response to my initial treatment,
I relapsed in my left lung in October, 2016.
Following a third lung surgery
to remove a cancerous tumor,
I chose to participate in immune therapy treatment
clinical trial.
The night before she found out that her cancer had spread,
into her lungs further, she had two hours of practice that she competed at.
And a month after lung surgery, she swam at nationals, and
while she was going through radiation, she went to the meet in Augusta
and we went to the fair and we had fun, and just her
her ability to forget about what’s happening in her body,
and to compete and to swim.
You know, I went to her swim meet and I watched her qualify for state-
the high school state meet.
And the next Saturday she was in the hospital.
I mean, she’s getting best times
she’s beating me and there’s cancer spreading down her spine and in every part of her lungs.
And now she’s on oxygen and she can hardly breathe,
but she’s swimming and competing and that’s really what I’ve taken away from her-
is her love for swimming and her spirit.
And not only did she come home on oxygen,
you know, she was like,
”I’m going to school on Monday."
And you know, she just fought through
so much and just was amazing.
I was able to present her with her team USA swim cap,
and a medal that I had won for her at World Championships.
And it was so special because I had dreamed of doing that in Tokyo,
but since that wasn’t going to be able to happen,
it was great to just be able to give her those caps and have that moment with her
because that’s something that she’s going to remember forever
and it's something that I’m going to treasure forever.
When Grace was presented with her team USA caps,
it was probably the most joyful moment in her entire life.
It was an inspiration just to see it happen.
The next day, I presented her with one of my medals
that I won at World Championships
and she gave it back to me,
she was like, ‘no, this is yours.'
And I was like, 'no, Grace, this is yours. I swam it for you.'
She said, ‘but it’s special.'
And I said, ‘well, Grace, you’re special to me and I want you to have something.'
When I got home I really struggled with the fact—
when Grace and I were together, when we spent our time the first week of January
we realized we share the same birthday.
And so when I got home,
there was a piece of me that just
hurt- knowing that there’s a chance come March 26th
I get to turn 29 and Grace doesn’t get to turn 15.
And that breaks your heart.
I have dreams where…
If we were able to grow old together,
we’d be in like the—we’d both have Alzheimer’s, we’d be sitting in rocking chairs...
knitting, and our kids would come and see us
and we’d be like ‘who are you?'
’what’re you doing here?’
’This is Grace, she’s my best friend.'
And we’re not going to be able to do that and it’s awful.
When Osteosarcoma comes back,
like mine had,
It’s likely to come back again.
And again.
And guess what?
No body knows what to do from keeping it from coming back again and again.
What is crazier:
today’s standard treatment
when you receive when you’re first diagnosed,
is exactly the same as it was 30 years ago.
Identical.
You know, one of the things is awareness.
When you tell the story about childhood cancer,
people are unaware of how underfunded it is.
That only 4% of the budget for the National Institute of Health goes to childhood cancer research.
96% goes to adults.
That's just wrong.
it’s just wrong.
So it is severely underfunded.
And there’s a dire need for the research to be funded so that
we can have better treatments
with fewer long term side effects and ultimately a cure.
Research is not sexy,
if you will—
it’s not this super fun thing to fund, but it is so critical,
and it’s what every parent,
every grandparent,
every person who has ever loved a child with cancer.
It is what they want.
So before you can make a change, you need to build a public outcry.
And you need to create the awareness.
And that’s what we do, we provide a way for people to
raise money and to join in the fight against childhood cancer and to fund
the best research through a duel peer review process.
And that’s why we founded it- because we knew that people wanted to help.
Guess how many doctors at my hospital had dedicated their research to finding new treatments
for my cancer.
Zero.
This is why what Rally does is so important.
There are researchers at other leading children’s hospitals who have dedicated their reseach to finding new treatments for Osteosarcoma.
You know, is finding that cure.
Finding the better treatment, but then you also know
in a child’s journey
you know when that’s not going to happen.
You know, barring a miracle.
Which we always believe and hope.
You know, and hold up our umbrella for the miracle.
An umbrella continues to mean faith.
Keep the faith, have faith.
Because there’s going to be many more rainstorms.
There’s going to be many more
hurricanes,
etc.
And we all need to have an umbrella.
Because other miracles are going to happen.
And other prayers are going to be answered.
So to see a whole community
come out with their umbrellas
it’s just amazing.
[Newscaster] To honor Grace, they recruited olympian, Amanda Weir.
It was really inspiring to me to hear just how badly she wanted to swim.
And that she loves our dear sport that much.
Every single one of us has a platform.
Every single one of us has a voice.
And every single one of us has a story.
And I think that it is our job, in our lifetime,
that we make sure that we use that voice and platform for good.
Because there is a 14 year-old girl, right now, in this moment, that has a voice stronger than more people can ever imagine.
And she has used it to every last inch she can to do good in the world around her.
And I think that if each of us can take just a piece of that, and carry that in our hearts,
and live by that, then we’re doing it right.
It breaks my hear that
she’s having to go through all of this—
I mean, she got cancer when she was 11.
No 11, 12, 13, 14 year-old
should have to deal with that.
I mean, she lost her hair, she had four lung surgeries.
26 rounds of radiation, 18 rounds of chemo—
She’s in and out of the hospital.
Went through a clinical trial.
She’s so sick.
And it’s awful because there’s nothing that can be done about it—
There’s no cure for Osteosarcoma.
The first iPhone was developed 10 years ago.
Guess how many iPhones have been developed since that time...
14.
14 different versions of the iPhone,
14 new iPhones in 10 years.
Yet, the treatment that I receive for my cancer
is exactly the same
as it was 30 years ago.
Don’t believe me?
Look it up on your iPhone.
If we’re not out there raising the money,
where’s the money going to come from?
Because it’s not coming from the government yet.
She’s 14.
Her life here on earth is now done…
And she had so much more she wanted to do.
You know, including this interview.
You know, you can help- if you’re moved by this,
you can definitely help.
You can help small— make a small gift
or you can help big and do something on your own and then
raise a whole lot of money.
So it’s really whatever motivates or moves you.
I said, 'Grace, when people pass away, when you pass away,’
And she looked at me and goes, ‘No, McClain, you say die. It’s going to happen, I’m going to die.'
I said, ‘Okay, Grace when you die,
’what’s your sign going to be for me?’
And she thought about it for a minute.
And she started laughing and she goes, 'the pool.'
I was like, ‘Grace, I’m at the pool every day.'
And she goes, ‘I know, then you’ll see me every day!’
I was like, 'okay, I guess.'
And I said,
’will you come visit me?’
She said,
’That’s a tall order to ask, McClain. There’s going to be a lot of people I have to visit.'
And we laughed,
And I said, ‘what about'— I threw it back at her, I said, 'what about
every time I swim?'
And she goes, ‘that’s every day, McClain!’
And I was like, ‘Ah, I thought I’d get hat past you.’
And I said, 'well, how about every time I race?’
And she said, ‘yeah, we’ll make that deal.'
That she’ll be with me every time I race.
I know she’ll be with me.
I have learned over the past three years that courage is not eliminating fear.
You know what courage is?
Courage is not letting fear eliminate hope.
[Audience Clapping]
Although it might seem to others that I’m a very small fish
in a very very big and often unforgiving sea.
I can still make a difference.
I can make a difference by sharing my story and raising money desperately needed for research.
Please don’t feel sorry for me.
Courage is not eliminating fear,
courage is not allowing fear to eliminate hope.
And that very much so in the brief time that I’ve known her and gotten to spend with her on that day,
And from everything I’ve heard from people that I know that know Grace
that is how she’s lived her life.
And I think that’s a remarkable perspective to have for anybody— let alone the perspective to have at that age.
The biggest impact she will leave
is that even though you are a small fish,
that
if you make big enough waves,
that it will impact everyone.
And I think that her waves will last a really long time.
I think her biggest impact on the community would be
hard work.
There is no reason not to work hard and do your best.
I want to fund Osteosarcoma research
in Graces name
so that
we have a much better story to tell next time.
There is a statistic that I saw that
Americans spend more money on Starbucks in three days
than childhood cancer research gets for an entire year.
So imagine if you put you Starbucks drink away for the day
and gave that money to childhood cancer research.
Imagine how many lives could be saved.
Together
we will change the outcome for kids with cancer.
I am hopeful and believe that you and I and researchers with God’s help will one day
give all kids fighting cancer a long, bright future.
Thank you.
Rally on!
Kids are the future
that’s what everybody keeps on saying:
kids are the future.
This generation is going to do great things, but not if they keep on dying from cancer.
We love you Grace!
Rally on!