The Little Boy Who Saved His Family

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Say free this week into your Xfinity voice remote. And we return to our American stories. Up next, a story on a special little boy and the legacy he created, the Christopher Foundation based out of Neosho, Missouri, an organization that seeks to raise awareness and research on pediatric cancer and support both patients and their families. Here to tell the story is Christopher Cooley's mother, Kathy. 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 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 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 left when it was still dark outside with an overnight bag for all of us. It 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, 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 12, possibly 12, 8 to 12 hours. It's not a hernia. Your son has cancer, and we have five 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, 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, I think it was three hours, they came out and got us and told us that they could not remove the tumor. They got a piece of it so they could send it for pathology, but they were pretty sure it was something called neuroblastoma. I've never heard of neuroblastoma. I had no idea. But they said this tumor was the size of a football cut in half, and it was wrapped around his heart, 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 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 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 the tumor enough that they were able to go in and take it out. 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, 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. Hospital life was our life.

That was all we 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 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, Tufur.

Tufur. 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 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 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, including our roommates.

We'd do whatever we could to make it 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 art therapy and he was drawing a picture. And after his bone marrow transplant, we had to do some radiation. So when they 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 also get something called a Hickman catheter. But a Hickman catheter is 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 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 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. 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, what is he saying? Is he know something we don't know?

What is going on? But I mean, he just he never missed a beat. He just kept drawing and playing. And it was like, no big deal to him.

And that was a shock 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, 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 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. But he wanted their day to be bright, too.

So he was pretty special in that way. 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. Well, this story is for you and for anyone else who hospital life is your life.

When we come back, more of the story of Christopher Cooley as told by his mom, Kathy, here on Our American Stories. For each person living with myasthenia gravis or MG, their journey with this rare neuromuscular condition is unique. That's why Untold Stories Life with myasthenia gravis, a new podcast from I Heart Radio in partnership with Argenics, is exploring the extraordinary challenges and personal triumphs of underserved communities living with MG. Host Martine Hackett will share powerful perspectives from people living with the debilitating muscle weakness and fatigue caused by this rare disorder. Each episode will uncover the reality of life with myasthenia gravis. From early signs and symptoms to obtaining an accurate diagnosis and finding care, every person with MG has a story to tell. And by featuring these real life experiences, this podcast hopes to inspire the MG community, educate others about this rare condition and let those living with it know that they are not alone.

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Head to LiveNation.com slash summers live. Music And we return 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 46 children each school day, over 15,000 kids every year. Let's continue with the story. Music 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 I wasn't a practicing Christian.

We didn't know where to go. We weren't going to church. We tried several churches, never found a fit. So we talked to some friends of ours that were going to a church and we went to that church 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. I know God had his hand in that just 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 within that church too. We did not tell people when we started going to church about Christopher 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. 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 to do any more treatments. 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, you know, having to go get tests and making sure. In his kindergarten year, he relapsed. And it was, it was a challenge again. But we did it.

He did it. He was a trooper. Got him in remission a few times 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 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 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 me like you're crazy. And then he turned around and 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 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 he coded in New York, I was on the phone with the doctors in Kansas City going, help me.

What do we do? 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 home for the weekend because he had started having trouble walking. And he was using, 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 going to go home and get the wheelchair this weekend. And 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 going to, 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 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 a camp for kids with cancer. And Christopher would go every summer. And Evan, another little boy from camp, he said, I'm I'm going to go to Evans.

Well, we were supposed to go to Evans the weekend before for a birthday party. But what we hadn't told Christopher was that Evan had passed away. He said, no, I'm going to I'm going to 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 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 laid in his room and he watched the gospel sing.

And they told us it probably wouldn't be long. And 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 stent or whatever and drain him. And everybody left. It was great. And he came in my bed. We decided to go to my bed. And so he laid 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 wreck. And I had fallen 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 going to let us put him in a hospital or do it. And we weren't.

We wouldn't do that anyway. But he he made sure that it was the way he wanted it to be. And he knew.

When we look back, we see all these signs. You know, in the afternoon he had he was sitting in the living room and he said, not yet. And he wasn't looking at any of us.

He was kind of looking up. He said, not yet. Not yet. And I said to him, not yet. What, honey? Nothing, mom.

Nothing. Just not yet. And I firmly believe he was telling God, not yet. I'm not ready yet.

You got to wait. 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. 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, 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. For each person living with myasthenia gravis or MG, their journey with this rare neuromuscular condition is unique. That's why Untold Stories Life with myasthenia gravis, a new podcast from I Heart Radio in partnership with Argenics, is exploring the extraordinary challenges and personal triumphs of underserved communities living with MG. Host Martine Hackett will share powerful perspectives from people living with the debilitating muscle weakness and fatigue caused by this rare disorder. Each episode will uncover the reality of life with myasthenia gravis.

From early signs and symptoms to obtaining an accurate diagnosis and finding care. Every person with MG has a story to tell. And by featuring these real life experiences, this podcast hopes to inspire the MG community, educate others about this rare condition and let those living with it know that they are not alone.

Listen to Untold Stories Life with myasthenia gravis on the I Heart Radio app, Apple Podcasts, or wherever you get your podcasts. Experience the power and design of the all new, all electric 2023 Nissan Ariya. This is the total package. Premium finishes, a lush interior, unrivaled tech and unbelievable torque, all powered by an electric heart. Nissan has been pushing the boundaries of what's possible for 90 years. Loaded with new electric and semi-autonomous technologies, the Ariya is Nissan's most powerful EV ever. When you're ready to unlock the thrill of driving, do it in luxury. Do it in the all new, all electric Nissan Ariya and see for yourself why the Ariya is the EV for people who love to drive. Visit NissanUSA.com to learn more about the all new 2023 Nissan Ariya. Available features, limited availability.

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Head to LiveNation.com slash summers live. 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 and her family created in honor of her son, who did so much for their family in the few short years he was on this earth. One thing I would tell people who are 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 they need to know you're there for them regardless. There's a huge difference for us. When Christopher 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 of them. Some of them we did. But when 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 would drive all the way to Kansas City just to see them and just to bring us a love package, snacks or whatever, just to let us know that they were there for us and that they loved us. People always say, what can I do for you or what do you need or call me if you need something. You're not going to call because you can't think like that. You're just living in the moment and doing 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, it means a lot. 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, buying movies, buying things. And then we thought, you know, we need to do more.

So we discussed 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 Thanksgiving because at 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 weekend long, starting at Thanksgiving. 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? We know Christmas is 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 just us and the kids. We cooked turkeys and ham and mashed potatoes and corn and stuffing and gravy and rolls.

It was something to get done in the residence in my brother in law and his. 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 start this foundation, this could be something we do every year. So then we started thinking of different things that the hospital didn't do. And Easter was a big one for us. 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 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.

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 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, 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 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 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 2002 and we decided we had it. Christopher passed away on the first Sunday in February. So 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 Sing 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 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 that Gospel Sing. 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 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. And to hear them 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 Sloan Kettering from the Ronald McDonald House. Tim and Christopher were walking ahead of me one day and there was an older gentleman out on his, 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 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 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 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. And a beautiful job on the production by Monty and a special thanks to Katrina Hein 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 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, go to AngelOfHearts.org. That's AngelOfHearts.org.

The story of Christopher Cooley told by his mother Kathy here on Our American Stories. There are some things in life you just can't trust, like free couch on the side of the road. You never know. Or the sushi rolls from your local gas station. You never know.

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Head to LiveNation.com slash summers live. For each person living with myasthenia gravis, or MG, their journey with this rare condition is unique. That's why Untold Stories Life with myasthenia gravis, a new podcast from iHeartRadio in partnership with Argenix, is exploring the extraordinary challenges and personal triumphs of underserved communities living with MG. Host Martine Hackett will share these powerful perspectives from real people with MG, so their experiences can help inspire the MG community and educate others about this rare condition. Listen to find strength in community on the MG journey on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.