July 25, 2023 • 30 mins
On this episode of Our American Stories, Kathy Cooley shares the story of how her late son, Christopher, led his family to faith and founding their organization: The Christopher Foundation.
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Episode Transcript
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Speaker 1 (00:10):
And we returned to our American stories. Up next story
on a special little boy and the legacy. He created
the Christopher Foundation, based out of Neoshio, Missouri, an organization
that seeks to raise awareness and research on pediatric cancer
and support both patients and their families. Here to tell
(00:31):
the story is Christopher Cooley's mother, Kathy.
Speaker 2 (00:38):
Christopher was a normal boy by every sense of the word.
He loved to play in the dirt. He loved to
do all boy things, climb, get in trouble, and just
be a little boy. When Christopher was three, Christopher started
(00:59):
pausing while he was playing and telling us he was
having backache, which was odd to us, and I mentioned
it to the pediatrician. I said, Christopher's saying he has
back pain and stops playing and he said that's not
normal for a three year old. He said, let's check
it out. So they checked his kidneys, they did some
(01:19):
different things, and they finally did a cat scan and
they told us in Joplin that he had a hernia.
So they made arrangements to see a surgeon in Kansas
City and we drove up there. They wanted an MRI,
so we had to be there very early, so we
(01:40):
left when it was still dark outside with an overnight
bag for all of us. There was his dad, Tim,
me and Christopher and we had an MRI and we
went back to the surgery waiting room and the time
came and went for his surgery and they didn't come
get us. By that evening, the room had cleared out
(02:03):
and the surgeon came to see us and called us
into a room and he said, I've put you off
to the end of the day because this is going
to be a very big surgery. This is going to
take twelve, possibly twelve eight to twelve hours. It's not
a hernia. Your son has cancer, and we have five
(02:24):
minutes and we've got to get him in there. And
they rocked our world. We had five minutes to sit
with our little boy and tell him he wasn't going
to be coming out and going home today. He was
going to be here for a while, and we had
no idea what we were in for. We were in shock,
(02:46):
and we just held him and told him he was
going to be okay. And they came and got him,
took him, and we were just beside ourselves. We didn't
know what to do and what was supposed to be
a long surgery. Within a f I think it was
three hours, they came out and got us and told
(03:10):
us that they could not remove the tumor. They got
a piece of it so they could send it for pathology,
and but they were pretty sure it was something called
neural blastema. I've never heard of neual blastoma. I don't
had no idea, but they said this tumor was the
size of a football cut in half, and it was
(03:31):
wrapped around his heart and wrapped around all these major organs,
so there was no way they could get it. And
this is a little bitty three year old boy with
a half a football in him, And we thought, how
is that even possible. I don't think anything could prepare
you for that. We had our diagnosis meeting and started
(03:56):
our first treatments before we left, and then went home
and had to completely rearrange our lives. But Christopher just
kept being a normal little boy when he could. We
had to go to the hospital every month for treatment.
His diagnosis was in August. In December, they had shrunk
(04:21):
the tumor enough that they were able to go in
and take it out, and we spent Christmas in the
hospital and Children's Mercy is a fantastic hospital and they
covered Christmas. It was phenomenal. They really made those kids
feel special and Christopher was unfortunately because of the surgery,
(04:42):
he was out of it, but he got a picture
with Santa. Regardless, Santa stood over his bed and took
a picture with him. And that was very important because
at that point we had no idea what we were
facing and if that would be our last Christmas. I mean,
hospital life was was our life. That was all we
(05:05):
knew at that point. Christopher became friends with all of
his nurses. They all loved him. He was a lot
of fun to be around. He always went by Christopher,
but the nurses and people naturally just assume you're Chris.
So for a long time, the nurses would come in
(05:25):
the room and say, Chris, we're going to do this, Chris,
We're going to do that, and all of a sudden,
under his breath you'd hear him say Toffer, we're going
what he said, she keeps calling me Chris, it's Christopher.
And the nurses finally started catching on to that and
just thought that was hilarious. And then they eventually didn't
(05:45):
call him Chris anymore. They all knew he was Christopher,
so he was a lot of fun for them and
gave them a hard time. He really enjoyed giving them
a lot of teasing at the Old Children's Mercy. When
we were first diagnosed, you shared a room, you had roommates,
but we made the best of it. We made so
(06:06):
many friends, and some nights we might decide we're going
to have a movie night, so we'd go drive somewhere
and find out what snacks everybody wanted, and including our roommates,
we'd do whatever we could to make it enjoy as
enjoyable as we could. And the hospital does that too.
They have music therapy, and they have art therapy and
different things. And one day Christopher was they were doing
(06:31):
art therapy and he was drawing a picture. And after
his bowe marrow transplant, we had to do some radiation.
So when you have radiation, you get tattoos so that
they can pinpoint where they need to do the radiation.
So he had tattoos going down his stomach where some
of the radiation had to be. And kids with cancer
(06:53):
also get something called a Hickman catheter, but a Hickman
catheter is a it's attached directly to one of your
main arteries, but it comes out of your body and
then it has extra tubes where you can put medicines
in or draw blood and do everything. So he had
his Hickman catheter and he started drawing this figure with
a Hickman catheter and his radiation tattoos and his little
(07:17):
belly button and all these different things. And then he
took some of the stuff she had brought in there
and started putting these little hearts all around him, all
around this body. And he had some feathers that he
used on it also, and we said, what what are
(07:38):
you drawing? What is that? Who is that? And he
told us he said, that's me. I'm going to be
the Angel of hearts. And at that point you could
have heard a pin drop. I mean, the lady who
was in there with him left the room briefly because
it shocked her. And we were all looking at each
other like, oh, what is he saying? Know something? We
(08:00):
don't know what is going on. But I mean, he
never missed a beat. He just kept drawing and playing
and it was like no big deal to him, and
that was shocked to us. But I believe he is
the Angel of hearts. He stole all our hearts and
had the huge heart when he was in the hospital
(08:23):
because he got to know all these kids and was
constantly around these kids. When he was there, we would
always get a balloon. We would go down to the
gift shop and almost every day I'd bring him a
different balloon just to try and cheer him up, and
it never failed. When we were leaving, he always wanted
to go share those balloons. He wanted to brighten somebody
else's day, so he would take them to different kids
(08:44):
in the hospital, or if we went and bought movies,
or if we bought something for him, he would say,
we need to buy one for the kids in the
hospital too, So we always had to buy two because
we had to take one to the kids in the
hospital too. So he just had a big heart and
very empathetic obviously because he was going through it too,
(09:05):
but he wanted their day to be bright too, So
he was pretty special in that way.
Speaker 1 (09:13):
And you've been listening to Kathy Cooley tell the story
of her son Christopher and his bout with cancer. Hospital
life was our life, and for anyone listening that hospital
life is your life, particularly if you have a child
who's struggling. All this story is for you and for
anyone else who hospital life is your life. When we
(09:34):
come back more of the story of Christopher Cooley as
told by his mom Kathy. Here on our American stories.
(10:09):
And we returned to our American stories and our story
on Christopher Cooley as told by his mother Kathy. When
we last left off, Christopher had been diagnosed with pediatric cancer,
something that impacts forty six children each school day, over
fifteen thousand kids every year. Let's continue with the story.
Speaker 2 (10:37):
When we were home, he insisted that we go to church.
At the time, we were not Christians. I had grown
up in the Catholic church, but that I wasn't a
practicing Christian. We didn't know where to go. We weren't
going to church. We'd tried several churches, never found a fit.
So we talked to some friends of ours that were
(10:57):
going to a church, and we went to that church
and and that was it. That was our church. And
he got us into church, and he kept us in church,
and we all found the Lord because of him, I mean,
his dad and I were saved and he was saved.
And I know God had his hand in that just
(11:18):
like he did in drawing this picture of the Angel.
It was totally God guiding and using Christopher to write
the story. I mean, he touched a lot of people's
lives and in within that church too. We did not
tell people when we started going to church about Christopher
(11:38):
and his cancer. We didn't want people to I don't
know how to describe it. We just didn't want Christopher
to be the kid with cancer and that's the only
reason people have anything to do with him, you know.
We just didn't want that. So we didn't tell people
for a very long time because at that point he
was in remission. We were in remission, we didn't have
(11:59):
to do any more treat We were good. I mean,
we still had to have lots of tests. And then
when he started kindergarten, one of our church members said,
you know, she was a kindergarten teacher. She said, I
want him in my class. Great, that's perfect. And at
that point we had kind of shared a little bit about,
(12:19):
you know, having to go get tests and making sure.
In his kindergarten year, he relapsed and it was a
challenge again, but we did it. He did it. He
was a trooper, got him in remission a few times,
(12:41):
and then eventually we were kind of running out of options.
We had to start doing some experimental stuff, so they
sent us to New York for a monoclonal antibody treatment
at Sloan Kettering. And one day they were doing the
treatment and one of the doctors came through and they
(13:05):
give him pain medicine because the pain is a very
painful treatment. He pushed some pain medicine and I went
to get a drink and before I turned around to
go back, and I could see that he wasn't breathing.
And I ran back in there and I said, he's
not breathing. He's not breathing, and my husband's looking at
(13:30):
me like you're crazy. And then he turned around as
he wasn't breathing. He had coded, so they shoved us
out of the room and started doing resuscitation on him. Fortunately,
another doctor had walked through at the same time and
he had some narcan in his pocket, so he gave
(13:50):
him some narcan and they were able to bring him
out of it. And eventually we did another experimental treatment
in Houston. We did a vaccine therapy. Eventually that didn't
work either, so we were back at Children's Mercy always
our home. I can't tell you how much we loved
Children's Mercy. After that, he coded in New York. I
(14:12):
was call on the phone with the doctors in Kansas City,
going help me, what do we do? You know? I mean,
they were just the best in the world in my opinion.
They cared about us and kept in touch with us
the whole time, which was fantastic. But his cancer was
getting bad and we were doing radiation and then came
(14:33):
home for the weekend because he had started having trouble
walking and we were using adult sized wheelchairs and the
home health was going to get us a child wheelchair,
but they had to deliver it to the house. They
couldn't deliver it to Kansas City. So we said, we're
gonna go home and get the wheelchair this weekend. And
(14:54):
so we came home and it was on a Saturday
that they delivered it. And he told us that day
he said, I'm not going back to Kansas City, and
we said, well, yeah, honey, you are. We're just here
to get the wheelchair and we're gonna, you know, we'll
spend the weekend here and we'll get to see people,
and people stop by people never stop by our house
(15:16):
because we live out in the country and people just
don't come see us. But that day people were stopping
by to see him, which was cool and good for him.
He got to see people. But by that night we
knew something wasn't right and he had told us. He said,
I'm not going back. And there was another little boy
that he had known from Camp Quality. Camp Quality is
(15:39):
a camp for kids with cancer, and Christopher would go
every summer and Evan, another little boy from camp. He said,
I'm gonna go to Evans. Well, we were supposed to
go to Evans the weekend before for a birthday party,
but what we hadn't told Christpher was that Evan had
passed away. He said, no, I'm gonna I'm going to
(16:00):
be with Evan. We said, well, I don't know that
we're going to get to do that. You know that
you can do that. He said, no, I am. I am.
And by that night we had called the nurse and
said something's something's not right, and they had told us
that his kidneys were shutting down, and it just progressively
(16:26):
got worse and he the week before our church had
done a gospel sing as a fundraiser for him, and
they had video recorded it. So he said, I want
to watch the gospel sing. So he lay in his
room and he watched the gospel sing, and they told
(16:49):
us it probably wouldn't be long. And I don't know
what time it was, but at some point he got
up and he was just great. He felt good. He's
going to the bathroom. The nurse said, hey, I think
in the morning we'll go see if we can get
maybe there's just a blockage. We'll go get something, put
in a stint or whatever and drain him in. And
(17:11):
everybody left. It was great, and he came in my bed.
We decided to go to my bed, and so he
lay down in bed with me and his dad, and
his dad had gotten up to go out in the
kitchen to do something. Of course, he wasn't sleeping anyway,
because he was a nervous rag. And I had fallen
(17:32):
asleep and I woke up to Tim telling me that
he wasn't breathing. He waited until everybody left, and he
just slipped away on his terms. He made sure it
was on his terms. He wasn't gonna let us put
(17:52):
him in a hospital or do anything. We weren't. We
wouldn't do that anyway, but he made sure that it
was the way he wanted it to be, and he
knew he when we look back, we see all these signs,
you know. In the afternoon, he was sitting in the
living room and he said, not yet, and he wasn't
(18:12):
looking at any of us. He was kind of looking
up and he said not yet, not yet. And I
had said to him, not yet, what, honey, nothing, mom, nothing,
just not yet. And I firmly believe he was telling
God and not yet, I'm not ready yet. You gotta wait.
Speaker 1 (18:35):
And you're listening to Kathy Cooley tell the story of
her son Christopher, and my goodness, the fact that he
brought his family to church and they weren't practicing Christians,
and he somehow intuitively knew this was the right thing
for his family, at least for himself. And what happened afterwards,
my goodness, and those words not yet and then saying nothing, Mom,
(18:57):
like he was trying to protect her from what he
was thinking about. When we come back more with Kathy
Cooley and her son's story, Christopher. Here on our American stories,
(19:38):
and we return to our American stories and our final
portion of the story of Christopher Cooley as told by
his mother Kathy. When we last left off, Christopher had
sadly to come to his pediatric cancer. Here's Kathy talking
about the importance of reaching out to families going through
situations like hers and the organization the Christopher Foundation. She
(20:04):
and her family created an honor of her son, who
did so much for their family in the few short
years he was on this earth.
Speaker 2 (20:16):
One thing I would tell people who our friends or
family members of someone going through that is, don't give
up on them. They may not be calling you back,
or they may not be answering you right away, but
(20:36):
they need to know your their form regardless. There's a
huge difference for us. When Christipher was first diagnosed, our friends,
very few of those are in our life because they disappeared.
We heard not much from any of them, very few
(20:57):
of them. Some of them we did, but and we
started going to church and had different people in our lives.
Those people were there for us every step of the way.
Every step of the way they were. They would drive
all the way to Kansas City just to see them
and just to bring us a love package of snacks
(21:21):
or whatever, you know, just to let us know that
they were there for us and that they loved us.
And people always say what can I do for you?
Or what do you need? Or call me if you
need something. You're not gonna call because you can't think
like that. You're just living in the moment and doing
(21:41):
everything you can to take another breath and get by.
And sometimes it's so crazy that you can't stop and think, oh,
I need to call so and so and ask them
for this. You're most likely not going to You don't
want to ask people for anything. But if people take
the initiative and do something thing, it means a lot.
(22:10):
Christopher passed away in February, and we knew that Christopher
wouldn't want us to stop doing things for those kids
in the hospital, that he still was doing things for
buying things for so we started just by buying things,
you know, buying movies, buying things, and then we thought,
you know, we need to do more, so we discussed
(22:33):
with some people about starting the foundation. It was the
end of that year when we really started getting it going.
But in November Christopher's birthday was November and sometimes it
fell on Thanksgiving. Tim and I had talked and I said,
I don't think I can be in this house on
(22:54):
Thanksgiving because it Thanksgiving. It was always a big deal
for us because it was his weekend. We would whether
it was actually on his birthday or not, we would
be celebrating and eating all week and long, starting at Thanksgiving.
And I said, I just don't think I can sit here.
I can't. And so we decided that we were going
to cook for the hospital. I said, why can't we?
(23:19):
We know Christmas has covered great at the hospital, but
nobody does anything for Thanksgiving. So we made some contacts
at the hospital and they said, oh, yeah, that'd be great.
So we rented a residence in up there and we cooked.
It was just us and the kids, and we cooked
turkeys and ham and ashed potatoes and corn and stuffing
(23:42):
and gravy and rolls, and it was something to get
done in a residence in my brother in law and
they also rented a room and helped us. But we
did that and took that to the hospital, and we thought,
you know, we could do this if we had start
this foundation, this could be something we do every year.
(24:04):
So then we started thinking of different things that the
hospital didn't do. And Easter was a big one for us,
and let me back up until the Easter story. Christopher
had his bone marrow transplant. We got out right before Easter.
Pictures were important to us, so we wanted that picture
(24:25):
with the Easter Bunny, even though he's not supposed to
be around people. We said, hey, can we at least
go to the mall and get a picture with the
Easter Bunny. And they had to wear these big cumbersome
masks if they're ever out in public, and they said,
as long as he has his mask on, you can
take it down for the picture. But we found them
all and when we were there, we ran into a
(24:47):
mom of one of the kids that we had been
in the hospital with and we had found out when
we were in transplant there was all these flowers and
stuff at the nurse's desk. We weren't allowed to have
anything in transplant, and we started asking questions, where's the flowers? Well,
(25:07):
this little girl had passed away the week before. So
here we are at the mall and we just run
into this mom who we hadn't got to see yet,
and we told her how sorry we were that we
didn't know, and she had been pregnant, but she had
the new baby with her. And we got to see
the new baby, and we talked about, you know, how
(25:27):
sad it was that Elizabeth didn't get to be there,
and that drove home to us she was doing the
same thing. She was getting her picture with the Easter Bunny,
and that drove home to us how important those pictures
are and those things are. So as part of the foundation,
we wanted to make sure that we could take the
bunny to the hospital and those kids that can't get
(25:50):
out could still get that picture. Those parents could have
that picture of their kid with the Easter Bunny. So
that's that's another thing we wanted to do. So we
started the foundation. We had our very first fundraiser in
two thousand and two and we decided we had it
Christopher passed away on the first Sunday in February, so
(26:13):
we had it on the first Saturday in February, and
we've had it every year since then. On the first
Saturday in February. We always have our annual gospel thing
because he loved that Gospel sing so much. He was
listening to that tape from the Gospel Sing, So that's
why we do a gospel sing every year. So people
always ask me why a gospel sing because he loved
(26:34):
that gospel sing. He laid there and listened to those
groups singing, and that was just meant a lot to
him and to us that they did that for him.
So that's what we do every year, and we have,
you know, silent auctions and things to go with it
that weren't part of the original one. But that's where
we get all of our funding every year is from
(26:54):
that gospel thing. I think one thing I would tell
people when your child dies or anybody, people quit talking
about him, and that broke our hearts because he's still
(27:16):
our son and he means the world to us, and
there are very few people in our life that still
will bring up stories and it's so special to us
whenever someone will start talking about him and remembering and
sharing a story about him with us. Because we can't
make new memories with him. All we have are those memories,
(27:41):
and to hear him means a lot. So don't be
afraid to talk to someone who's lost their child about
their child, because they want to know you remember them,
and they want to know that you thought they were special.
When we were in New York, we always had to
walk to slung kettering from the Roal McDonald house, and
(28:03):
Tim and Christopher were walking ahead of me one day
and there was an older gentleman out on as they
call him Stoops, and he came down to me in
the street and he said, is that your son? And
I said, yes it is. He said there's something very
special about him. He said, there's just something an aura
around him. He said, there's really something special about him.
He said, I see these kids go by here all
(28:24):
the time. He said, I've never stopped anyone. He said,
I just want you to know your boy is special,
and that stuck with me forever. I think sometimes we
don't always truly listen to our kids, and when it
comes to God, I think kids can be so much
(28:47):
more in tune than we can. Sometimes they have such
purity of heart and they don't have the jaded vision
that we have from being in the world as long.
And if you just sit and listen to your kids,
you can learn a lot. I mean, this little little
(29:11):
kid saved his whole family by taking us to church
and introducing us to Christ and a whole different way
of life. Sometimes we need to just listen to our kids.
Speaker 1 (29:26):
And a beautiful job on the production by Monty and
a special thanks to Katrina Hine for the storytelling. It
was just so special and indeed, we do have to
listen to our kids. And what a thing Christopher did.
You heard it from the mom our son saved our family.
When your child dies, she said, or anyone, people stop
(29:47):
talking about him or her. It's so special when people
bring up a story about someone you've lost. We don't
have new memories. And by the way, if you want
to find out more about the Christopher Foundation, to Angelohearts
dot org. That's Angelofhearts dot org. The story of Christopher
Cooley told by his mother Kathy. Here on our American
(30:10):
Stories
And we returned to our American stories. Up next story
on a special little boy and the legacy. He created
the Christopher Foundation, based out of Neoshio, Missouri, an organization
that seeks to raise awareness and research on pediatric cancer
and support both patients and their families. Here to tell
(00:31):
the story is Christopher Cooley's mother, Kathy.
Speaker 2 (00:38):
Christopher was a normal boy by every sense of the word.
He loved to play in the dirt. He loved to
do all boy things, climb, get in trouble, and just
be a little boy. When Christopher was three, Christopher started
(00:59):
pausing while he was playing and telling us he was
having backache, which was odd to us, and I mentioned
it to the pediatrician. I said, Christopher's saying he has
back pain and stops playing and he said that's not
normal for a three year old. He said, let's check
it out. So they checked his kidneys, they did some
(01:19):
different things, and they finally did a cat scan and
they told us in Joplin that he had a hernia.
So they made arrangements to see a surgeon in Kansas
City and we drove up there. They wanted an MRI,
so we had to be there very early, so we
(01:40):
left when it was still dark outside with an overnight
bag for all of us. There was his dad, Tim,
me and Christopher and we had an MRI and we
went back to the surgery waiting room and the time
came and went for his surgery and they didn't come
get us. By that evening, the room had cleared out
(02:03):
and the surgeon came to see us and called us
into a room and he said, I've put you off
to the end of the day because this is going
to be a very big surgery. This is going to
take twelve, possibly twelve eight to twelve hours. It's not
a hernia. Your son has cancer, and we have five
(02:24):
minutes and we've got to get him in there. And
they rocked our world. We had five minutes to sit
with our little boy and tell him he wasn't going
to be coming out and going home today. He was
going to be here for a while, and we had
no idea what we were in for. We were in shock,
(02:46):
and we just held him and told him he was
going to be okay. And they came and got him,
took him, and we were just beside ourselves. We didn't
know what to do and what was supposed to be
a long surgery. Within a f I think it was
three hours, they came out and got us and told
(03:10):
us that they could not remove the tumor. They got
a piece of it so they could send it for pathology,
and but they were pretty sure it was something called
neural blastema. I've never heard of neual blastoma. I don't
had no idea, but they said this tumor was the
size of a football cut in half, and it was
(03:31):
wrapped around his heart and wrapped around all these major organs,
so there was no way they could get it. And
this is a little bitty three year old boy with
a half a football in him, And we thought, how
is that even possible. I don't think anything could prepare
you for that. We had our diagnosis meeting and started
(03:56):
our first treatments before we left, and then went home
and had to completely rearrange our lives. But Christopher just
kept being a normal little boy when he could. We
had to go to the hospital every month for treatment.
His diagnosis was in August. In December, they had shrunk
(04:21):
the tumor enough that they were able to go in
and take it out, and we spent Christmas in the
hospital and Children's Mercy is a fantastic hospital and they
covered Christmas. It was phenomenal. They really made those kids
feel special and Christopher was unfortunately because of the surgery,
(04:42):
he was out of it, but he got a picture
with Santa. Regardless, Santa stood over his bed and took
a picture with him. And that was very important because
at that point we had no idea what we were
facing and if that would be our last Christmas. I mean,
hospital life was was our life. That was all we
(05:05):
knew at that point. Christopher became friends with all of
his nurses. They all loved him. He was a lot
of fun to be around. He always went by Christopher,
but the nurses and people naturally just assume you're Chris.
So for a long time, the nurses would come in
(05:25):
the room and say, Chris, we're going to do this, Chris,
We're going to do that, and all of a sudden,
under his breath you'd hear him say Toffer, we're going
what he said, she keeps calling me Chris, it's Christopher.
And the nurses finally started catching on to that and
just thought that was hilarious. And then they eventually didn't
(05:45):
call him Chris anymore. They all knew he was Christopher,
so he was a lot of fun for them and
gave them a hard time. He really enjoyed giving them
a lot of teasing at the Old Children's Mercy. When
we were first diagnosed, you shared a room, you had roommates,
but we made the best of it. We made so
(06:06):
many friends, and some nights we might decide we're going
to have a movie night, so we'd go drive somewhere
and find out what snacks everybody wanted, and including our roommates,
we'd do whatever we could to make it enjoy as
enjoyable as we could. And the hospital does that too.
They have music therapy, and they have art therapy and
different things. And one day Christopher was they were doing
(06:31):
art therapy and he was drawing a picture. And after
his bowe marrow transplant, we had to do some radiation.
So when you have radiation, you get tattoos so that
they can pinpoint where they need to do the radiation.
So he had tattoos going down his stomach where some
of the radiation had to be. And kids with cancer
(06:53):
also get something called a Hickman catheter, but a Hickman
catheter is a it's attached directly to one of your
main arteries, but it comes out of your body and
then it has extra tubes where you can put medicines
in or draw blood and do everything. So he had
his Hickman catheter and he started drawing this figure with
a Hickman catheter and his radiation tattoos and his little
(07:17):
belly button and all these different things. And then he
took some of the stuff she had brought in there
and started putting these little hearts all around him, all
around this body. And he had some feathers that he
used on it also, and we said, what what are
(07:38):
you drawing? What is that? Who is that? And he
told us he said, that's me. I'm going to be
the Angel of hearts. And at that point you could
have heard a pin drop. I mean, the lady who
was in there with him left the room briefly because
it shocked her. And we were all looking at each
other like, oh, what is he saying? Know something? We
(08:00):
don't know what is going on. But I mean, he
never missed a beat. He just kept drawing and playing
and it was like no big deal to him, and
that was shocked to us. But I believe he is
the Angel of hearts. He stole all our hearts and
had the huge heart when he was in the hospital
(08:23):
because he got to know all these kids and was
constantly around these kids. When he was there, we would
always get a balloon. We would go down to the
gift shop and almost every day I'd bring him a
different balloon just to try and cheer him up, and
it never failed. When we were leaving, he always wanted
to go share those balloons. He wanted to brighten somebody
else's day, so he would take them to different kids
(08:44):
in the hospital, or if we went and bought movies,
or if we bought something for him, he would say,
we need to buy one for the kids in the
hospital too, So we always had to buy two because
we had to take one to the kids in the
hospital too. So he just had a big heart and
very empathetic obviously because he was going through it too,
(09:05):
but he wanted their day to be bright too, So
he was pretty special in that way.
Speaker 1 (09:13):
And you've been listening to Kathy Cooley tell the story
of her son Christopher and his bout with cancer. Hospital
life was our life, and for anyone listening that hospital
life is your life, particularly if you have a child
who's struggling. All this story is for you and for
anyone else who hospital life is your life. When we
(09:34):
come back more of the story of Christopher Cooley as
told by his mom Kathy. Here on our American stories.
(10:09):
And we returned to our American stories and our story
on Christopher Cooley as told by his mother Kathy. When
we last left off, Christopher had been diagnosed with pediatric cancer,
something that impacts forty six children each school day, over
fifteen thousand kids every year. Let's continue with the story.
Speaker 2 (10:37):
When we were home, he insisted that we go to church.
At the time, we were not Christians. I had grown
up in the Catholic church, but that I wasn't a
practicing Christian. We didn't know where to go. We weren't
going to church. We'd tried several churches, never found a fit.
So we talked to some friends of ours that were
(10:57):
going to a church, and we went to that church
and and that was it. That was our church. And
he got us into church, and he kept us in church,
and we all found the Lord because of him, I mean,
his dad and I were saved and he was saved.
And I know God had his hand in that just
(11:18):
like he did in drawing this picture of the Angel.
It was totally God guiding and using Christopher to write
the story. I mean, he touched a lot of people's
lives and in within that church too. We did not
tell people when we started going to church about Christopher
(11:38):
and his cancer. We didn't want people to I don't
know how to describe it. We just didn't want Christopher
to be the kid with cancer and that's the only
reason people have anything to do with him, you know.
We just didn't want that. So we didn't tell people
for a very long time because at that point he
was in remission. We were in remission, we didn't have
(11:59):
to do any more treat We were good. I mean,
we still had to have lots of tests. And then
when he started kindergarten, one of our church members said,
you know, she was a kindergarten teacher. She said, I
want him in my class. Great, that's perfect. And at
that point we had kind of shared a little bit about,
(12:19):
you know, having to go get tests and making sure.
In his kindergarten year, he relapsed and it was a
challenge again, but we did it. He did it. He
was a trooper, got him in remission a few times,
(12:41):
and then eventually we were kind of running out of options.
We had to start doing some experimental stuff, so they
sent us to New York for a monoclonal antibody treatment
at Sloan Kettering. And one day they were doing the
treatment and one of the doctors came through and they
(13:05):
give him pain medicine because the pain is a very
painful treatment. He pushed some pain medicine and I went
to get a drink and before I turned around to
go back, and I could see that he wasn't breathing.
And I ran back in there and I said, he's
not breathing. He's not breathing, and my husband's looking at
(13:30):
me like you're crazy. And then he turned around as
he wasn't breathing. He had coded, so they shoved us
out of the room and started doing resuscitation on him. Fortunately,
another doctor had walked through at the same time and
he had some narcan in his pocket, so he gave
(13:50):
him some narcan and they were able to bring him
out of it. And eventually we did another experimental treatment
in Houston. We did a vaccine therapy. Eventually that didn't
work either, so we were back at Children's Mercy always
our home. I can't tell you how much we loved
Children's Mercy. After that, he coded in New York. I
(14:12):
was call on the phone with the doctors in Kansas City,
going help me, what do we do? You know? I mean,
they were just the best in the world in my opinion.
They cared about us and kept in touch with us
the whole time, which was fantastic. But his cancer was
getting bad and we were doing radiation and then came
(14:33):
home for the weekend because he had started having trouble
walking and we were using adult sized wheelchairs and the
home health was going to get us a child wheelchair,
but they had to deliver it to the house. They
couldn't deliver it to Kansas City. So we said, we're
gonna go home and get the wheelchair this weekend. And
(14:54):
so we came home and it was on a Saturday
that they delivered it. And he told us that day
he said, I'm not going back to Kansas City, and
we said, well, yeah, honey, you are. We're just here
to get the wheelchair and we're gonna, you know, we'll
spend the weekend here and we'll get to see people,
and people stop by people never stop by our house
(15:16):
because we live out in the country and people just
don't come see us. But that day people were stopping
by to see him, which was cool and good for him.
He got to see people. But by that night we
knew something wasn't right and he had told us. He said,
I'm not going back. And there was another little boy
that he had known from Camp Quality. Camp Quality is
(15:39):
a camp for kids with cancer, and Christopher would go
every summer and Evan, another little boy from camp. He said,
I'm gonna go to Evans. Well, we were supposed to
go to Evans the weekend before for a birthday party,
but what we hadn't told Christpher was that Evan had
passed away. He said, no, I'm gonna I'm going to
(16:00):
be with Evan. We said, well, I don't know that
we're going to get to do that. You know that
you can do that. He said, no, I am. I am.
And by that night we had called the nurse and
said something's something's not right, and they had told us
that his kidneys were shutting down, and it just progressively
(16:26):
got worse and he the week before our church had
done a gospel sing as a fundraiser for him, and
they had video recorded it. So he said, I want
to watch the gospel sing. So he lay in his
room and he watched the gospel sing, and they told
(16:49):
us it probably wouldn't be long. And I don't know
what time it was, but at some point he got
up and he was just great. He felt good. He's
going to the bathroom. The nurse said, hey, I think
in the morning we'll go see if we can get
maybe there's just a blockage. We'll go get something, put
in a stint or whatever and drain him in. And
(17:11):
everybody left. It was great, and he came in my bed.
We decided to go to my bed, and so he
lay down in bed with me and his dad, and
his dad had gotten up to go out in the
kitchen to do something. Of course, he wasn't sleeping anyway,
because he was a nervous rag. And I had fallen
(17:32):
asleep and I woke up to Tim telling me that
he wasn't breathing. He waited until everybody left, and he
just slipped away on his terms. He made sure it
was on his terms. He wasn't gonna let us put
(17:52):
him in a hospital or do anything. We weren't. We
wouldn't do that anyway, but he made sure that it
was the way he wanted it to be, and he
knew he when we look back, we see all these signs,
you know. In the afternoon, he was sitting in the
living room and he said, not yet, and he wasn't
(18:12):
looking at any of us. He was kind of looking
up and he said not yet, not yet. And I
had said to him, not yet, what, honey, nothing, mom, nothing,
just not yet. And I firmly believe he was telling
God and not yet, I'm not ready yet. You gotta wait.
Speaker 1 (18:35):
And you're listening to Kathy Cooley tell the story of
her son Christopher, and my goodness, the fact that he
brought his family to church and they weren't practicing Christians,
and he somehow intuitively knew this was the right thing
for his family, at least for himself. And what happened afterwards,
my goodness, and those words not yet and then saying nothing, Mom,
(18:57):
like he was trying to protect her from what he
was thinking about. When we come back more with Kathy
Cooley and her son's story, Christopher. Here on our American stories,
(19:38):
and we return to our American stories and our final
portion of the story of Christopher Cooley as told by
his mother Kathy. When we last left off, Christopher had
sadly to come to his pediatric cancer. Here's Kathy talking
about the importance of reaching out to families going through
situations like hers and the organization the Christopher Foundation. She
(20:04):
and her family created an honor of her son, who
did so much for their family in the few short
years he was on this earth.
Speaker 2 (20:16):
One thing I would tell people who our friends or
family members of someone going through that is, don't give
up on them. They may not be calling you back,
or they may not be answering you right away, but
(20:36):
they need to know your their form regardless. There's a
huge difference for us. When Christipher was first diagnosed, our friends,
very few of those are in our life because they disappeared.
We heard not much from any of them, very few
(20:57):
of them. Some of them we did, but and we
started going to church and had different people in our lives.
Those people were there for us every step of the way.
Every step of the way they were. They would drive
all the way to Kansas City just to see them
and just to bring us a love package of snacks
(21:21):
or whatever, you know, just to let us know that
they were there for us and that they loved us.
And people always say what can I do for you?
Or what do you need? Or call me if you
need something. You're not gonna call because you can't think
like that. You're just living in the moment and doing
(21:41):
everything you can to take another breath and get by.
And sometimes it's so crazy that you can't stop and think, oh,
I need to call so and so and ask them
for this. You're most likely not going to You don't
want to ask people for anything. But if people take
the initiative and do something thing, it means a lot.
(22:10):
Christopher passed away in February, and we knew that Christopher
wouldn't want us to stop doing things for those kids
in the hospital, that he still was doing things for
buying things for so we started just by buying things,
you know, buying movies, buying things, and then we thought,
you know, we need to do more, so we discussed
(22:33):
with some people about starting the foundation. It was the
end of that year when we really started getting it going.
But in November Christopher's birthday was November and sometimes it
fell on Thanksgiving. Tim and I had talked and I said,
I don't think I can be in this house on
(22:54):
Thanksgiving because it Thanksgiving. It was always a big deal
for us because it was his weekend. We would whether
it was actually on his birthday or not, we would
be celebrating and eating all week and long, starting at Thanksgiving.
And I said, I just don't think I can sit here.
I can't. And so we decided that we were going
to cook for the hospital. I said, why can't we?
(23:19):
We know Christmas has covered great at the hospital, but
nobody does anything for Thanksgiving. So we made some contacts
at the hospital and they said, oh, yeah, that'd be great.
So we rented a residence in up there and we cooked.
It was just us and the kids, and we cooked
turkeys and ham and ashed potatoes and corn and stuffing
(23:42):
and gravy and rolls, and it was something to get
done in a residence in my brother in law and
they also rented a room and helped us. But we
did that and took that to the hospital, and we thought,
you know, we could do this if we had start
this foundation, this could be something we do every year.
(24:04):
So then we started thinking of different things that the
hospital didn't do. And Easter was a big one for us,
and let me back up until the Easter story. Christopher
had his bone marrow transplant. We got out right before Easter.
Pictures were important to us, so we wanted that picture
(24:25):
with the Easter Bunny, even though he's not supposed to
be around people. We said, hey, can we at least
go to the mall and get a picture with the
Easter Bunny. And they had to wear these big cumbersome
masks if they're ever out in public, and they said,
as long as he has his mask on, you can
take it down for the picture. But we found them
all and when we were there, we ran into a
(24:47):
mom of one of the kids that we had been
in the hospital with and we had found out when
we were in transplant there was all these flowers and
stuff at the nurse's desk. We weren't allowed to have
anything in transplant, and we started asking questions, where's the flowers? Well,
(25:07):
this little girl had passed away the week before. So
here we are at the mall and we just run
into this mom who we hadn't got to see yet,
and we told her how sorry we were that we
didn't know, and she had been pregnant, but she had
the new baby with her. And we got to see
the new baby, and we talked about, you know, how
(25:27):
sad it was that Elizabeth didn't get to be there,
and that drove home to us she was doing the
same thing. She was getting her picture with the Easter Bunny,
and that drove home to us how important those pictures
are and those things are. So as part of the foundation,
we wanted to make sure that we could take the
bunny to the hospital and those kids that can't get
(25:50):
out could still get that picture. Those parents could have
that picture of their kid with the Easter Bunny. So
that's that's another thing we wanted to do. So we
started the foundation. We had our very first fundraiser in
two thousand and two and we decided we had it
Christopher passed away on the first Sunday in February, so
(26:13):
we had it on the first Saturday in February, and
we've had it every year since then. On the first
Saturday in February. We always have our annual gospel thing
because he loved that Gospel sing so much. He was
listening to that tape from the Gospel Sing, So that's
why we do a gospel sing every year. So people
always ask me why a gospel sing because he loved
(26:34):
that gospel sing. He laid there and listened to those
groups singing, and that was just meant a lot to
him and to us that they did that for him.
So that's what we do every year, and we have,
you know, silent auctions and things to go with it
that weren't part of the original one. But that's where
we get all of our funding every year is from
(26:54):
that gospel thing. I think one thing I would tell
people when your child dies or anybody, people quit talking
about him, and that broke our hearts because he's still
(27:16):
our son and he means the world to us, and
there are very few people in our life that still
will bring up stories and it's so special to us
whenever someone will start talking about him and remembering and
sharing a story about him with us. Because we can't
make new memories with him. All we have are those memories,
(27:41):
and to hear him means a lot. So don't be
afraid to talk to someone who's lost their child about
their child, because they want to know you remember them,
and they want to know that you thought they were special.
When we were in New York, we always had to
walk to slung kettering from the Roal McDonald house, and
(28:03):
Tim and Christopher were walking ahead of me one day
and there was an older gentleman out on as they
call him Stoops, and he came down to me in
the street and he said, is that your son? And
I said, yes it is. He said there's something very
special about him. He said, there's just something an aura
around him. He said, there's really something special about him.
He said, I see these kids go by here all
(28:24):
the time. He said, I've never stopped anyone. He said,
I just want you to know your boy is special,
and that stuck with me forever. I think sometimes we
don't always truly listen to our kids, and when it
comes to God, I think kids can be so much
(28:47):
more in tune than we can. Sometimes they have such
purity of heart and they don't have the jaded vision
that we have from being in the world as long.
And if you just sit and listen to your kids,
you can learn a lot. I mean, this little little
(29:11):
kid saved his whole family by taking us to church
and introducing us to Christ and a whole different way
of life. Sometimes we need to just listen to our kids.
Speaker 1 (29:26):
And a beautiful job on the production by Monty and
a special thanks to Katrina Hine for the storytelling. It
was just so special and indeed, we do have to
listen to our kids. And what a thing Christopher did.
You heard it from the mom our son saved our family.
When your child dies, she said, or anyone, people stop
(29:47):
talking about him or her. It's so special when people
bring up a story about someone you've lost. We don't
have new memories. And by the way, if you want
to find out more about the Christopher Foundation, to Angelohearts
dot org. That's Angelofhearts dot org. The story of Christopher
Cooley told by his mother Kathy. Here on our American
(30:10):
Stories
Host
Lee Habeeb
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