From the Fidelity Bank Foundation studio, PBS Kansas Presents One on One with Victor Hogstrom.

This is where you and I come face to face with life's lessons through the personal journeys of our fellow Kansans.

This week, I go one on one with Amanda Haddock.

Amanda is founder and president of the Dragon Master Foundation, which seeks to find better treatments and ultimately a cure for childhood brain cancer.

It's a very personal mission for Haddock.

Her 18 year old son, David, succumbed to glioblastoma in 2012 after a 20 month battle.

Coming up, we'll hear David's story and Amanda's story.

We'll discuss the challenges and potential solutions to childhood brain cancer, which almost always carries a grim diagnosis.

And we'll learn about this Wichita mom's mission to bring an end to that disease.

Amanda Haddock is my guest for the next half hour.

One on one.

Welcome.

Hello and thank you for joining us.

I'm Victor Hogstrom.

I'm pleased to welcome Amanda Haddock, Wichita mother who advocates for victims of childhood brain cancer.

Welcome to the program.

Thank you so.

Much.

Now, Amanda, we know that you are a mother and a wife and you're an advocate, as I've just said.

But who is Amanda Haddock for real?

Well, I am all of those things.

I'm also a grandmother.

I have two little grandsons that we've added to the mix in the last four years.

I started life in Alabama, very average upbringing, I would say.

Southern girl.

Yes, sir, absolutely.

And I've lived around the U.S. a little bit, California and Virginia and Maryland.

Before finally landing in Kansas, True Love brought me to Kansas.

My husband's a native Wichitan.

And so I've been here for the last, gosh, I don't know, 13, 14 years, something like in Wichita.

So what do you enjoy doing when you're not working and advocating?

Are there times...?

I think that's all the time.

I enjoy a lot of things.

I enjoy.

Living in Wichita.

Actually, I tell people all the time that it's the best infrastructure of any town that I've lived in.

So I appreciate being able to get around town very quickly and out to the zoo or the Wild Animal Park, and we go downtown and watch shows and things like that.

I also love traveling further abroad than across Wichita, so I love going to the beach and things like that.

So you advocate for childhood brain cancer because you had a tragedy in your family?

Yes, sir.

Your son, David, was diagnosed in 2010 with glioblastoma.

How was that discovered in the first place?

It was very sudden actually.

David had had a headache one day.

And his dad, his dad and I are divorced and his dad took him to the E.R.

because it seemed to be worse than normal.

And they thought maybe that was just a migraine or something and sent him home with Tylenol three.

And the next day his dad found him curled on the floor in the bathroom.

The headache was so bad he couldn't move.

And David was six feet tall, not not a small kid.

And so they went back to the E.R.

and this time they did a scan on his brain and saw both that there was some blood in his ventricles, but also there was some type of mass.

And so that local hospital decided that was more than they could deal with and and sent him off to a bigger regional hospital.

And at what age was this discovered?

So he was 16 when that was discovered.

So how did David react to the diagnosis and how did you and your husband react to it when you found that?

So those are very, very different things.

David had an incredibly strong faith and just amazing outlook on life and so when he was told that he had a brain tumor, we didn't use the word cancer.

The doctor didn't use that with him at first.

He immediately said, I don't want to know the odds.

I am my own statistic and I'm going to do this my way.

And so I think he he knew that it was serious.

He knew that there wasn't a treatment, but he didn't know his exact prognosis.

And he liked it that way.

He really wanted to forge his own path.

As for my reaction, I did know all of the details.

And, you know, we had Google at our disposal.

So we had done some research.

And I knew that his prognosis was incredibly poor, but I guess I had sort of bought into the marketing that was on television, and I believed that with a positive attitude we would be able to beat that.

And and I held on to that that that David had a stronger belief system and that he would be able to, if there was a way through it, that he'd be able to get through it.

And so even though it was an incredibly traumatic event for our family, I think that we always had a lot of hope that he would somehow figure out a way to beat it.

I can imagine how traumatic it was.

But when you received the diagnosis, then what?

So we had already been sent to a larger hospital and the initial diagnosis was wrong.

Actually, at first they thought he had leukemia and then they came back and that had metastasized to the brain.

And then they came back and said, no, you know, we were wrong.

It's brain cancer.

And that didn't give me a lot of faith in that initial hospital that they could make that kind of mistake.

And looking back, the more I know about those two diseases now, that definitely did not inspire confidence.

So we didn't stay at that hospital for very long.

Once David was able to move to a different facility, we went to Children's National Hospital in D.C. and that's where he received the bulk of his care.

He did some clinical trials in other places, too, but we we felt like we were getting very good care.

I should mention, too, that we weren't living in Kansas at the time of his diagnosis, so he wasn't diagnosed in Kansas.

I want to make it clear that I'm not talking about any any facilities in Kansas.

Right?

Right.

So what was the most challenging or difficult aspect of the entire situation for you and your family?

I think just trying to get everyone to take David's concerns seriously.

David really wanted to help with science, and he knew that his prognosis was poor, but he didn't see any reason why he shouldn't be treated as someone who was going to live a long time.

Because everyone is a statistic of one.

And some people live with this disease for a decade and some live less than a year.

Most of them live less than a year.

And so he wanted to have that chance at living a long time and getting people to not treat you like a statistic.

Is is very difficult, I think, sometimes.

But your David lived for 20 months.

He did.

They told him he had 8 to 10 months to live and he lived for 20.

So the struggle with with the brain cancer that he had.

Tell us about those 20 months.

So they really don't have they don't have any curative treatments for that type of cancer.

And almost everything that they do is to just try and extend the life a little bit.

And David really wanted to try to cure it.

And so we looked at clinical trials predominantly for his care because that was a clinical trial, something new.

Right.

And we don't know what the outcome will be from from those.

And so that's what he chose to do with his care.

But time and time again, we would try to figure out which treatment to do for him.

And doctors would tell us that they didn't know they would say these are three treatments that he could qualify for.

And we'd say, well, which one would be best for him, which, you know, how should we make this decision?

And they basically just said, pick.

They didn't have any good criteria for us to be able to make those decisions.

And so what we ended up doing for David was choosing a clinical trial based on what would allow him to go to school and be around his friends the most, because that was really important to him.

And so when you're looking at quantity and quality of life, we wanted to give him both and so we chose a clinical trial based on that?

Not at all based on what might actually be able to give him a longer life.

And now during those 20 months.

Did you miss any big opportunities.

As far as treatment goes while hindsight?

Right.

I think you could go crazy looking back and trying to figure out if you made all of the right decisions.

I certainly second guess things sometimes.

And this answer may be for the benefit of someone.

Yeah.

And I think that that there's no clear path through this for people with brain cancer.

There's not even today, 12 years later, there's not a clear path.

What's the right answer and what's a wrong answer?

And so I feel pretty confident that we made the best decisions that we could make at the time, given the information at hand.

And we certainly did a lot of research.

And and even today, people aren't surviving this disease.

So I don't know that we made any major missteps.

And I think that that's something important for families to know, is that that everyone's doing the best that they can do at any given moment in time with this.

And if there was a clear cut path, I'd be shouting it from the rooftops, making sure everyone knew about it.

But right now we're just doing the best we can do.

So describe your son.

Before he received the diagnosis, what kind of person was he and describe him after he received the diagnosis during those 20 months.

Okay.

So the word I use about David the most is magnanimous.

David, I mean, everyone thinks their kids are great, right?

He was the person that I most want to be like.

Oh, really?

Yeah, he.

He was just genuinely nice.

I mean, one of the nicest people you could ever meet.

He was also really weird and odd and loved being that when he was in eighth grade, he wanted to take Latin and Latin was not a course that was offered at the middle school.

You had to go to high school, you to get up an hour earlier to catch a different bus, to go to the high school and take Latin.

And I asked him one day I was like, Are you sure you want to do this?

That's, you know, a lot earlier in the morning.

And we, you know, just a lot of extra things would have to happen for that.

And he said, yeah, I really want to do that, Mom.

And I said, okay, well, why?

And he goes, No one else is doing it.

And and that was him in a nutshell.

He liked pushing the barrier on things.

He liked learning things that no one else knew.

He loved animals.

He loved people.

He he was just a great, great guy.

So that's why he wanted the cure.

Yes, he wanted to be cured.

He he wanted the cure for other people, really.

I mean, David, he told everybody he's like, I know where I'm going and I'm not worried about me, but there are these other little kids and they should get to grow up and live their lives.

And he was glad that he's the one that was diagnosed and not one of his siblings like he he was great.

He was really great.

So what's the description you have for him during the 20 month period of his trial and temptation, as I would call it?

Yeah, I would say exactly the same.

And we were very fortunate in that a lot of times brain cancer can affect people's personalities.

Certainly having cancer in general can affect your mood and a number of other things.

And, David, he he didn't show, I'm sure that he had, you know, more pain and more probably discomfort and just fears than he ever about anyone to see.

But he kept that really upbeat personality all the time.

And he just even at night would be getting around for bed and I'd go in and talk to him and, you know, are you good?

Do you have any worries or concerns?

And he didn't he just he was very confident kid.

They knew, like I say, he knew where he was going and he wasn't worried about that.

So when he found out that he was dying of this brain cancer, how was how did he react?

How do we handle it?

That's one thing we didn't talk about a lot.

I know that a lot of a lot of people do talk about that with their children.

David didn't really want to spend a lot of time dwelling on that.

He wanted to live and talk about life and things.

He would talk about it a little.

I mean, he would talk about, you know, like a song he wanted played at his funeral, but never like his funeral was coming right imminently.

Just like in the future.

When I die, I kinds of conversations.

So he knew and we we talked about it but not not in terms of immediacy, right?

Yeah.

It just wasn't wasn't something he wanted to spend a lot of time on.

Wow.

Yeah.

He was brave.

He was.

So after David passed away, you decided you wanted to strike back and strike back at this disease?

That is.

That claimed your son.

What did you do?

Well, it started with David, actually.

His friends had started a little club and they were raising money for research.

David was very, very interested in research and helping push that forward.

And so that's the only thing he ask of us when he was dying was to continue to help other people.

So how do you not do that?

Right.

That that was his dying wish.

And so we started having we had had some conversations before he died with researchers and just what they needed, why they didn't understand this disease and what we can do to potentially make an impact.

You know, very famous, very influential people had already died from this disease.

And so we knew money and influence wasn't really what was lacking.

And it turned out what was lacking was really more innovation and access to data.

They didn't have enough information to work with to really study the disease.

And so once David passed, we had a little more time.

We weren't active caregivers anymore.

And so we had time to really focus in on that part of it.

And I had a little bit of a background in technology.

My husband had a deep background in technology.

And so we knew that that that was a piece that we could speak to and something that we might have connections with and be able to help out with.

So we really started looking at how we could apply technology better in the field of cancer research.

Have you seen over the last ten years and since he died ten years ago, any progress and improvements?

Yes, actually, we have.

So and and I think a lot of that is being driven by this access to high quality data that the researchers now have.

So so we're seeing kids who would have been given a year's diagnosis.

We're seeing those kids quite regularly.

We push into the two year mark, which doesn't sound like a lot and honestly isn't a lot.

But when you're talking about a six year old who gets to turn seven, right, it's a pretty big deal.

One more Christmas.

All of those things matter a lot, right?

Yeah.

Wow.

So what has been your biggest challenge in taking on this issue, trying to help come up with resolutions?

Sure.

Well, the biggest challenge really was data sharing and still kind of continues to be.

But in the beginning when we started talking about this, I was kind of go to a field of dreams methodology.

Like we thought if we build this infrastructure where they can share data, then people will come and they will share their data.

And that was sort of the vision that we had for it.

And people in academia and people in research fields had varying opinions about that.

And some thought, Wow, that would be really cool if you could do that.

And others said, That's just straight up crazy.

No one's ever going to share their data and you should stop trying and, and so we had to listen to a lot of people telling us that we didn't know what we were doing in the beginning.

And now a lot of those people are coming back around and asking us how they can get involved and share data.

So it's it's taken a good chunk of that ten years, but we are now at a point where data sharing is starting to be something that most institutions are looking at and trying to figure out how they can both share their data and access these larger pools of data.

Amanda, for your work, you were recognized by President Obama for your hard work in this regard.

Tell us about that.

Well, I was given the Champion of Change for Precision Medicine from the Obama White House.

Tell us, whats precision medicine?

So precision medicine, you hear that term a lot, right on the news and stuff.

What that really means is that we're not going to use blanket treatments for patients, that we're really going to look at each individual patient and see if they would respond to a particular treatment based on things like their molecular characteristics.

Right.

So we can now sequence tumors and understand different mutations that might be driving the growth of that tumor.

And we should be able to then target a treatment based on that particular mutation.

And that's what precision medicine really is.

Okay.

So tell us about the award you received.

You know, it's it wasn't as fancy as all that.

I mean, we got to go to the White House, which was amazing and wonderful.

But it was a lot like sitting in a TV studio, right?

There's a table and you sit there and people ask you questions and stuff.

I did not get to meet President Obama, but I did get a Christmas card from him that year.

Okay.

So that's probably the only time I'll ever get a Christmas card from a president.

So I'm going to take that as a win.

But in your efforts, you also established a foundation.

Yes.

Tell us about.

That.

Yes.

So so we tried to get some of the larger foundations just to do this project, this big data project that we had envisioned.

And a lot of them told us we were crazy.

So it became very apparent that we were just going to need to start a foundation if we wanted to be able to direct funds toward a project like this.

And so that's that's what we did.

We started Dragon Master Foundation in 2013.

Dragon Master Foundation, the name Dragon Master.

Tell us why that name.

So it's tough to pick a name, right, for something that is going to be your life's work.

And we started looking at the types of work that we were trying to do with genomic data and cancer data.

And there were already all these big groups out there like the American Cancer Association already existed.

And there was a project called the Cancer Genome Atlas, which had a big chunk of what we were trying to do.

And and as big and great as those things sounded, they also sort of sounded very specific.

You can be only cancer if you were the American Cancer Society and you were pretty much focused on genomic data.

If you were the Cancer Genome Atlas, and we thought the genome might take us in some different directions, there may be other things that we learned that we need to pivot and do in order to accomplish our goals.

And so I started looking at things that were a little bit more abstract, and David had always loved dragons and people.

I had read some blogs and things where people were referring to cancer as a beast, and I thought, Well, a dragon is a beast and it's mythological, so no one really knows what the dragon is.

So I liked the imagery behind that, that the dragon could be cancer, but if we needed to pivot a little in order to help cure cancers, that that beast could also be something else.

And so it really was taking advantage of David's love for dragons and mythology and the fact that we didn't want to be pigeonholed to one particular disease.

So how adequate are the resources in Wichita or Kansas or the state of Kansas, for that matter, to treat and care for children suffering from brain cancer?

Well, I don't I don't want to make it sound like Kansas is inadequate.

But the truth is, almost all states are inadequate with very rare cancers like this.

We typically like to see patients go to a center that is doing clinical trials on a regular basis, and they're kind of leading the charge for that particular type of brain cancer.

There's 120 different types of brain tumors, and they all have subtypes within that.

So.

So I wouldn't say that there's one particular hospital that anyone should go to for any you know, it really is going to depend on what type of brain cancer that they have.

But that's for like the clinical trial treatment.

You don't necessarily have to stay there.

You can do a lot of your treatment at home, at your home hospitals, and then go there in between.

If that makes sense.

Sure.

It has been ten years now since your son passed away from this cancer.

Do you think about him when you think about him, I should say.

What would what comes to mind?

Well, one of his best friends from elementary school is getting married next week.

And so I think about I think about the stuff that he's not here doing, like getting married and having kids and starting a career, all of those things.

He would be 29.

And so that's that's an adult.

Right.

And and ever knew fully adult David he was still in high school when he passed away so yeah I think about that kind of stuff.

And you think about what would have become of him, I take it too.

Sure, yeah.

Yeah.

What do you like least about the job that you do today trying to help cure this disease?

Oh, well, that's easy.

I like that we haven't cured this disease yet.

It's really hard when new patients are diagnosed.

And I talked to a new family and they want to know what to do.

It's really hard not to be able to say, here's the path, this is what you need to do.

And I can certainly give them, you know, some really good recommendations and tell them the right questions to ask and those kinds of things.

But I can't tell them what is going to cure their child, and that's what I want to be able to do.

I want to be able to point them to a doctor or a hospital that's going to save the life of their child.

What is the next big hurdle in overcoming this disease?

Well, there's a lot of them.

I think we're at the point now that we've gathered enough data that it's starting to be useful.

We're starting to be able to use big data analytics on the data set that we have.

But upkeep is very expensive.

It costs about $1,000,000 a year to run this operation, luckily not funded just by our foundation, but by a number of groups.

But but that's always a big, big hurdle.

And then we're still really struggling with getting institutions to share that data and share it in real time.

The way it works currently, researchers are rewarded for publishing papers.

That's how they advance in academia, and it's hard to publish a paper on data that everyone is sharing, right?

You've got to be a little more innovative in how you work on those things.

So they like to keep that data to themselves until after the paper is published and then they'll share it.

But it might take years for them to publish a paper up to ten, 12 years to publish a paper.

And when a child's lifespan is under two years, we can't wait that long.

We really have to flip that model and really have to get people sharing their data immediately.

And when I say data, I don't mean their intellectual property, right?

Like, I don't want their ideas.

I just want the raw genomic data, the sequencing from that and clinical records and things that other researchers could use to be working on that.

And that kind of information will also help us get those children into the right clinical trials.

And so we need that to be a very proactive and timely process.

So how has all this changed your life coming back to your story?

Oh, wow.

I think if you talk to my high school science teacher and ask them if they thought I would ever have a career even remotely in a science field, they would tell you, no, this wasn't an interest of mine.

I had zero interest.

You know, I was heading into English major and yeah, science and math have never been a strong suit for me.

But you, you become passionate when you see something that you can change.

And even though I don't know a lot about the technical side of this, I knew enough to know that we could impact a real change and that it wouldn't be a change just for my son or for people with the type of cancer that he had.

But really fundamentally changing the way they conduct science in a way that can be impactful for everyone.

The Dragon Masters Foundation's director, Amanda Haddock, thank you so much for joining us.

One on One.

Thank you.

And thank you for watching this edition of One on One.

oneonone@kpts.org is our email address.

That's if you have a question or comment.

Until next time.

I'm Victor Hogstrom.

Be well and I'll see you again soon.