July 16, 2025 • 35 mins
In this emotional episode of Believe in Progress, host Mitch Stoller, Chief Philanthropic Officer at the AACR, is joined by Joe Krajewski, a father, runner, and advocate who transformed personal tragedy into a powerful mission. After losing his only child, Will, to osteosarcoma in 2016, Joe began running in Will’s memory as part of “Team Will Power,” raising vital funds and awareness in the fight against cancer.
You will hear a deeply moving conversation, Joe reflects on love, grief, and legacy, and how a father’s promise has fueled ongoing advocacy, research support, and endurance racing. Whether you’ve experienced loss or simply want to be reminded of the strength of the human spirit, this episode will stay with you.
Segment 1: A Father and Son Bonded by Running
Joe shares heartfelt stories about his son Will—their special bond through running, Will’s contagious energy, and their memorable experience running the iconic Hood to Coast relay together.
Segment 2: A Life-Altering Diagnosis
Just weeks after Hood to Coast, Will was diagnosed with osteosarcoma. Joe recounts the moment of diagnosis, navigating treatments, and the endurance lessons that carried them through.
Segment 3: Team Will Power and the Legacy of Advocacy
The founding of Team Will Power marked a turning point. Joe explains how the team became a tribute to Will and a platform for cancer awareness, resilience, and generosity.
Segment 4: Grief, Reflection, and the Endurance to Keep Going
Joe opens up about living with grief, finding healing through running and writing, and how Will’s legacy continues to inspire his advocacy and outlook.
Segment 5: The Meaning of Progress
Joe reflects on the power of community, memory, and the AACR’s mission to advance lifesaving science—and what it means to ‘Believe in Progress.’
Take Action: Support Childhood Cancer Research
Donate to the AACR: Fuel lifesaving innovation by supporting cutting-edge cancer research at https://AACR.org/Give
Share this episode: Help spread Will’s story and honor the strength of families impacted by childhood cancer.
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Production Credits
Host: Mitch Stoller
Guest: Joe Krajewski
Executive Producer: Anthony Lopes
Executive Producer: Michael Leary
Director: Anthony Lopes
Creative Director/Director of Photography: Michael Leary
Writer: Anthony Lopes
Editor: Michael Leary
Associate Producer: Heather Holland
Believe in Progress is produced by CollegeCast LLC.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:02):
Every parent that has a childbattling cancer can't stay there 24 7.
And that's why it's essentialto have both parents there.
They can take turns because itbuilds up to the point where for
your own health, you have to go away.
You have to do something elseand just get your mind off it.
Welcome to Believe In Progress,the American Association for
(00:24):
Cancer Research Foundation Podcast.
Join us and be inspired by the incrediblestories of those who have faced
cancer with strength and resilience,and the medical professionals who
are working tirelessly to find newtreatments and ultimately a cure.
Believe in progress isn't just aboutthe science of cancer, it's about
the human side of this disease.
(00:45):
Together we can make progress inthe fight against cancer and bring
hope to those who need it most.
What does it mean to carry the memory ofa loved one mile after mile, year after
year in a race that never truly ends?
On this episode of Believe In Progress,the podcast brought to you by the A A
(01:06):
CR, we share a deeply moving story aboutlove, grief, and the relentless pursuit of
progress in the face of unimaginable loss.
I'm your host, Mitch Stoller, chiefPhilanthropic Officer at the A A CR,
and today I'm honored to speak withJoe Kki, a devoted father, runner
and advocate who has turned personaltragedy into a powerful mission.
(01:28):
After losing his only child will toosteosarcoma 2016, Joe and his family
began running in Will's memory.
As part of Team Willpower raisingthe critical funds and awareness
in the fight against Cancer,Joe's story isn't just about loss.
It's about carrying forward a legacy.
It's about running with grief andrefusing to let it define you, and
(01:50):
it's about honoring a promise tonever stop believing in progress.
In this episode, we'll talk aboutthe beautiful bond between Joe and
Will forged through running How Hoodto Coast became a living memorial
in celebration of Will's life.
Joe's reflections on grief,resilience, and the power of community.
Why cancer research, advocacy, andremembrance matter more than ever.
(02:14):
And whether you're faced personalloss or simply want to be reminded
of the strength of the human spirit,this episode will stay with you.
Joe, welcome to Believe in Progress.
It's an honor to meet you and thank youso much for being with us here today.
I'm honored to be here and, and giventhe opportunity to talk about this,
let's start off and I'd love to learna little bit about your son Will,
(02:38):
who he was, what he loved, and whatmade him such a special young man
in the beginning, my wife Karen and I, uh,struggled with five years of infertility.
We tried everything and it was throughthree tries of in vitro fertilization
that, uh, will, was conceived.
(02:58):
Right from the get go.
This was a challenge just tohave a child from the very start.
Uh, will has always been energetic.
He's always moving around nonstop.
Even as a, as a 5-year-old or a6-year-old, always curious about the
world, always wanting to know howthings work by taking apart things
(03:18):
sometimes it was not the best thingto take apart, but he would take
apart a radio and we really wish hehadn't, but he was always learning.
Always thinking about what hewanted to do with his life.
Um, I remember when I first startedrunning, uh, right before that I
was in my middle forties and, uh, Iwas way overweight, um, outta shape,
(03:41):
not even close to being a runner.
And I would watch Will ashe ran around the yard.
He was always into everything.
Um, and I.
How am I gonna keep up with him?
How am I, how am I evengonna be around for him?
Because I did worry about, uh, my ownmortality before he would, you know,
(04:03):
grow up and like graduate high schoolor, or even, you know, fall in love
and get married and all those things.
So I decided to get in shape,um, starting about 20 years ago.
It, it was running because, well,running's kind of a simple sport, right?
You, you have a pair of shoes andyou put on some shorts and shirt
(04:23):
and you go out and you just run lotsof miles and you'd stay consistent.
Yeah.
And all along my journey, um, whenI first started Will was right there
with me watching everything I did.
So he was fascinated by itand he wanted to help me.
And after about six months oftraining, I had dropped a ton of
(04:44):
weight and I went to, uh, Walt DisneyWorld and ran their half marathon.
Mm-hmm.
Right off the start.
Yep.
13.1 miles.
And that was tough, even though I hadtrained for about 400 miles of running.
It was still, you know, stressful.
Um, but I got through it and Iremember at the end of the race
(05:05):
it's like, okay, I did that.
I never wanna run again because thatone half marathon, um, you know,
it was like, I'm not doing this.
I've, I've run a couple halves andI've run a couple, uh, full marathons,
so I know exactly what you're saying.
That was about 62 half marathons ago.
Oh my
(05:25):
goodness.
Yeah.
And, and what happened is at the endof the finish line, I'm walking around
and I see Will, and he's shoutingand said, dad, you're wicked awesome.
I want to be a runner too.
So right then and there it's like,well, I guess I'm doing this again.
And so just to have somethingbetween us, I said, okay, we'll go
(05:49):
down this road of running and, uh,keeping it consistent and focusing.
Eventually I, I started to run fullmarathons and in 2012, will's 13 years
old and we're starting to run together.
He wants to be an endurance runnerand particular focus is the hood
(06:10):
to coast, uh, relay race fromMount Hood to Seaside, Oregon.
Very famous, run
the mother of all relay races.
Yes.
And Will wanted part of that.
So I started to train him.
By that time I knew enough about running.
I became his coach and we trainedreally hard for about six months
(06:32):
and we started to run races togetherin a three month period of time.
We ran five races, three ofthem were half marathons.
We did a couple of 10 K races.
Um, we even finished in first place inour age group for one of those races.
So we developed this bond together.
This is our thing.
Mm-hmm.
This is how we, how we work together.
(06:54):
This is how we, um, talk to each other.
It wasn't easy.
There were times, just like any runner,you have those days when you don't
feel like going out there and doing it.
But I pushed them out there to keep'em going, and I taught 'em all about
endurance and about what it takes to keepmoving forward even when you're tired.
(07:14):
So in August of 2012, we did the Hoodto Coast Relay Race, the 12 runners will
and I and 10 friends, and it's 36 legs.
So we all do three legs a pieceand Will did Lake 12, 24 and 36.
What's the distance of the leg?
Typically?
The legs are five to eight miles long.
(07:38):
There's a couple of short onesin there, but they put big hills
in there, so it's not so easy.
You have to really look at the racemap and the profile to understand
what you're getting yourself into.
And it's continuous 30 hours straight,so there's no getting off the course.
There's no, we rest in between our legs.
We get about eight hours, uh, in betweenwith a little rest, but we're just going.
(08:00):
30 hours, and I remember him coming inon leg 36, that anchor leg on Saturday
afternoon and he was just having a blast.
This kid was just into this and wecelebrated afterwards, it's I, I
know my wife was like, I want tostand on top of the car and said,
my son at 13 did Hood to coast.
(08:23):
What did your son do today?
Right.
That must have been a great memory.
It's still there.
'cause I remember as the sun setting,we're out there, we're just exhausted,
uh, sore everywhere and hungry.
We ate everything.
We just blew like fouror 5,000 calories, right?
So we had everything.
And there was just this one thing is afterall that, running, all that training Will,
(08:48):
will complain about his left leg hurting.
At first, well, you ran probablysomething like 600 miles in
this past seven or eight months.
It's not surprising you would've sorelegs or sore knees or anything like that.
What happened was over the next six weekswe tried different kinds of therapies.
(09:10):
We had it X-rayed and one of our friendshappens to be a physician's assistant
and he noticed the way Will was limpingalong and he said, that's not normal.
Mm-hmm.
There's
something more serious going on here.
By mid-October, we were atSeattle Children's Hospital,
uh, talking to oncologists.
And that's when they said,uh, after taking an MRI, they
(09:32):
said, your child has cancer.
And it was osteosarcoma and his lefttibia right below his knee, right then and
there it went from, okay, we're runningto now we're going to endure cancer.
Mm-hmm.
And all those lessons of, um, endurancecame in handy for will to battle cancer.
(09:55):
He kept moving forward in his life ashe has always done throughout his life.
He was always into things and hestill was, even with the cancer, the
chemotherapy, uh, all the surgeries, hehad a part of his tibia bone replaced
twice was the first, uh, um, graft did nottake, so he had to go through that again.
(10:16):
And that's about a sevenhour surgery a piece.
Throughout it all will justkept, kept living his life.
He, he stayed an honor student.
He was in the Boy Scouts and he wentthrough all the ranks of, uh, the Boy
Scouts all the way up to Eagle Scouts.
He became a member of the Order of theArrow, the Boy Scouts Honor Society.
(10:39):
And through all of this, itwas service to the community.
Um.
His eagle project was actually to makethese IV pole little pads at the bottom.
And what it was is little infants couldact, or little kids could sit on them
and ride around with their IV pole.
So that was his service project,
uh,
for his eagle rank.
(10:59):
And it, and it was never oneof these things where I've
got cancer, I have to stop.
He just kept living throughall of this, and while he was
doing that, I was still running.
And we still did Hood to coast throughout,and we started to run in his honor.
That's why we changed thename of the team to Willpower.
Right?
Because if Will could power throughcancer, we can power through
(11:22):
running.
What was his treatment like?
You know, what did he have to endure?
The standard treatment for osteosarcomais the first 12 weeks you go
through three different chemo drugs.
Mm-hmm.
Uh, IC, cisplatin and methotrexate,and they're called CD and m.
C and D are given together througha central port in your chest.
(11:44):
So it goes right through yourheart to start with, and then
it circulates from there.
And so those would go togetherand then two weeks later
you would get methotrexate.
After 12 weeks, they wouldcheck to see how much of the
cancer had been killed off.
And he got great prognosis.
He had a 90 plus percent,um, decrease in cancer cells.
(12:08):
And at that time when they did the firstbone graft and they took out five inches
of his tibia bone and replaced it.
Now when a child of his age at theage of 13, that's about half the tibia
was taken out and replaced, and itwas taken out right up to just below
where the acls would be attached.
(12:31):
Mm-hmm.
So it's really closer the knee.
Mm-hmm.
And, uh, that was a gruelingoperation to go through.
And then after about two weeks ofrecuperation from that, you're right
back onto the chemo, uh, drugs for aboutanother, another four or five months.
And they're constantly checking.
(12:52):
They're doing scans every monthto see what the rate of, uh,
progress is against the cancer.
And they, they call it whenyou get a clear scan, it's
called No Evidence of Disease.
Right.
And that came on June 6th, 2013, andwe were able to go home after that.
(13:15):
And then the standard is everythree months he gets scanned to
see if the cancer comes back.
What was his mindset like being such anavid runner and, and enjoying running
so much to not having that ability to dothat and what powered him through all of
these treatments and things of that sort?
Will always, always had a saying fromStar Wars, never tell me the odds.
(13:39):
Because I'm going to ignore themand continue to live my life.
So no matter what the obstacleI'm going to keep looking forward.
In his first treatment, he had alreadysigned up to go to the Boy Scout National
Jamboree in West Virginia, and thatwas the beginning of August of 2013.
So the focus right from the get go was, Ineed to be at National Jamboree no matter
(14:02):
what All of it takes, no matter how manytreatments, recovery from bone surgery.
I'm going there.
And at first the, the hospital staffat Seattle Children's were hesitant,
but Will, has a lot of power in him,of persuasion to essentially say, no,
I'm going with you or without you.
Just get me in shape to get there.
(14:25):
And that became the focus ofSeattle Children's to get him there.
They changed his treatments.
They, they did everything they could,physical therapy so he could attend.
That was the focus and, anda lot of people need to focus
when they're battling cancer.
Something in the future is a goal.
It's just like running.
If you're, you can run and say, oh,I run every week, but if you don't
(14:47):
have a race in front of you thatyou publicly commit to, how much
are you gonna commit to running?
Right.
Right.
And if you really want to commit to it,what you say is, I. Merit a full marathon
in three months from now, and you telleverybody on social media, well now you
have that pressure to actually perform.
Mm-hmm.
(15:08):
So goal settings for cancerpatients is the same thing.
Hi everyone.
This is Mitch Stoller, chiefPhilanthropic Officer at the A A CR
and the host of Believe in Progress.
I hope you're enjoying today's episode.
I wanted to take a quick momentto remind you that your support is
vital in our fight against cancer.
As we always say at the A A CR,cancer research saves lives, but
(15:30):
we cannot do that without thegenerous support of people like you.
If you're moved by the stories andinsights shared in our podcast,
please consider making a donationto A A CR by visiting aac.org.
Your contributions help fundessential research and provide
support to those affected by cancer.
(15:50):
And while you're here, don'tforget to subscribe to the
Believe in Progress podcast.
By subscribing and sharing with yourfriends and family, you help us reach more
people with these important conversations.
Thank you for your support.
Now let's get back to the episode.
How about you and your wife dealingwith unthinkable diagnosis like this?
(16:11):
Um, obviously you were importantsupport system for iron will.
Talk.
Talk to me a little bit about that.
Karen and I, in the first diagnosis,when it's in a, when it's in
an appendage, it's in his leg.
Yeah.
And we were concerned.
We were afraid for how muchhe was going to endure.
'cause you always hear stories aboutchemotherapy and what it does to people.
(16:32):
But since it was an appendage, wedidn't have that life or death fear
that you would think of becauseit's an appendage what would happen.
You could have it amputated.
It seemed like something doableversus having cancer in your
brain or in your internal organs.
So we didn't have that heightened,uh, fear that he was gonna lose
(16:53):
his life with the first diagnosis.
And since he responded so well totreatment, um, through the first,
first round of this, it was more ofa case of maintaining his weight,
keeping it, keeping him active.
Making sure he didn'tfall into depression.
It was really a focus to, towatch him and to be there.
(17:15):
The level of stress was, well, anythingcould go wrong, but it was not, it
wasn't life or death at that point.
And that, and that's the thing for thefirst two years or so after treatment, um.
It was more of just a case of,okay, let's make sure no evidence
of disease, everything's fine.
(17:35):
We'll just move forward life andtake care of his medical condition.
Um, when you get a bone graft in chemocombined, you get osteopenia mm-hmm.
Which is brittle bones very easilyfor him to, to break any bong,
just even a simple little trip.
And that did happen.
He would fall, he fell over one time athome and he actually split his finger.
(18:01):
His bones had had gotten so brittleand it wasn't much of a, a fall,
but he ended up having to haveadditional plates put in his femur
now just above his knee for this.
It became distressing when in December1st, 2015, they found spots on his lungs.
(18:22):
Mm-hmm.
Now it's metastatic and it's his lungs.
Now it is a fear that our childis going to pass away and he
doesn't have much time left.
Then it becomes more of a, more ofa sleepless night every single day.
You know, is he gonna pass away today?
How much time does he have left?
(18:43):
Uh, what treatments are available?
And you start searching everywhere.
You go across the internet lookingat all sorts of clinical trials.
Mm-hmm.
Um, you're willing to travelanywhere, it doesn't matter.
We will go anywhere in theworld that that has promised.
It becomes that kind of a desperation.
And then there's the depressionof what would life be after Will.
(19:05):
Right.
At this time, he's almost 17 in Decemberof 2015, and we're just thinking, okay.
Does he make his birthday,which is March 27th?
Um, does he even make the year?
And this became a, abigger and bigger concern.
As they took more scans,they could see it spreading.
(19:29):
And the second round of of cancer,the cancer has become immune
to whatever you did before.
So now it's harsher chemotherapiesat first, and then you start
experimenting with clinical trials.
What would work?
So we pulled out all the stops.
I think the, the toughest thing is I'man engineer and on my own, I looked at
(19:53):
the disease rate of progression thathe was experiencing and they actually
applied statistical analysis to this.
And I realized in December of 2015 thatunless we found an effective treatment, he
would probably not see the next September.
And he, uh, passed away on August 22nd.
Mm. Joe, did you go out of statefor clinical trials or did you
(20:18):
not find any, any matches thatwould, you know, show promise?
We were fortunate enough that they hadclinical trials at Seattle Children's.
Mm-hmm.
So we would travel up there.
We tried two of them.
We try to, and it, it was a tricky thingbecause we had Keytruda as one option.
Yep.
And another one called dab.
(20:40):
And the problem is DAB wasonly, was limited by eight.
That if we didn't try thatone first, will would age out.
And then you'd only beleft with the Keytruda.
But the Keytruda, bythat time in, uh, 2016.
Had already been proven effective.
Uh, most notable cases, JimmyCarter taking it in his nineties.
(21:03):
Mm-hmm.
He had two or three dosesand the cancer was just gone.
So we had no choice.
And it's tough for non-medical parentsto understand all of this, but we went
for the osis AB figuring, well, we'llhave two chances, we'll try that, and if
that doesn't work, we could use Keytruda.
(21:23):
And that's the path we went on.
Um.
Theosis AB was completely ineffective.
Mm-hmm.
And his cancer actually acceleratedin the month that we tried that one.
And then Keytruda, by then, hisright lung was already filled with
tumors and was completely useless.
Hmm.
So we were starting late withKeytruda, um, and he only got one
(21:45):
dose of it, because in a clinicaltrial, they look at how much
toxicity is built up in your liver.
Right.
And he just was over the border.
Ah.
And they
would not budge.
And it's like, it's really close.
Can't we just go?
Right.
I mean, and they wouldn't do it.
They wouldn't go for it.
Yeah.
Yeah.
No,
Joe, Joe, tell me thatquote again from Star Wars.
It, it sounded like thatquote really sums up will.
(22:08):
Oh yeah.
Never tell me the odds becauseI'm gonna live my life anyways.
But that first part is rightfrom Star Wars Han Solo.
Love
it.
Love it.
Let, let's chat a little bit about teamwillpower and the legacy of advocacy.
Um, so even in the, thewake of Will's passing, you
continue to run hood to coast.
Tell me why that was so importantto you and, and your family
(22:31):
will passes away.
And August 22nd, it's theweek of Hood to coast.
Four days later we ran Hood to coast.
It started on that Friday.
And there was no question afterwill passed away, my wife and I
looked at each other and said,you have to run hood to coast.
There was no, there was nodebate, there was nothing.
(22:51):
You have to do this.
And that first one was important,um, as a way to honor his life.
And, um,
that one was emotional becausethe entire team knew well.
They had seen him a couple of yearsbefore at the races, at the finish
lines and things like that, sothey knew who he was and all of us
(23:17):
just focused, let's get this done.
There are a lot of other teams, Iknow plenty of them by this time.
Um, I had done some fundraisingfor the Leukemia and Lymphoma
societies team in training.
Mm-hmm.
Ran with them for many years to dothe Portland Marathon and then also
became one of the marathon coaches.
And a lot of those people endup doing hood to coast as well.
(23:42):
And all those teams,
when they saw us, they, uh, supported us.
Wow.
I remember in the middle of thenight running my, my, uh, second leg,
which is always usually about oneo'clock in the morning, running out
towards, running away from Portland.
And I remember on the, on the freeway inbig chalk letters that said willpower.
(24:05):
Hmm.
You had no idea.
No idea.
And it's just another team.
Oh.
Uh, other teams painted, um,willpower on their arms, their legs.
How'd it make you feel?
Amazing emotional when the race finished.
Mm-hmm.
Because it's, it's okay.
The race is over.
(24:25):
You've celebrated, but then griefcomes back because he is not here.
Were you still running whilehe was dealing with his cancer?
Yes, I used it as a form of stress reliefto go out and just get away from things.
Yep.
Everybody needs a break.
Every parent that has a childbattling cancer can't stay there
(24:46):
24 7, and that's why it's essentialto have both parents there.
They can take turns because itbuilds up to the point where for
your own health, you have to go away.
You have to do something elseand just get your mind off it.
He want you to run.
Absolutely.
Yeah.
Um, we, we did expandout to other relay races.
(25:07):
We did it another endurance racecalled the Cascade Lakes Relay.
It's a much more grueling racethan the Cascade Mountains.
It's 216 miles above4,000 feet in elevation.
What's the same idea?
What's the legs on that?
The relay legs on that.
In one of those legs, you'rerunning up one of the cascade
mounts called Mount Bachelor.
(25:27):
It goes from 3000 feet up to6,000 feet and five miles.
Oh boy.
Yeah.
Nobody wants to do that.
It's like draw the shortstraw and you're it.
Yeah.
Have you run, uh, Ragnar?
Yes, I have.
I've run Ragnar Pacific Northwesta couple of times, and I have
also run when they had it.
Ragnar, the big island in Hawaii.
(25:48):
Right.
That was even more gruelingthan the rest of them.
My first race, if you know about the bigisland, the helo side is incredibly humid.
It's a tropical place.
I ran 11 miles on that side andthat humidity and heat at night.
We ran up, uh, I think it was Monte Loa.
It got so high up.
(26:09):
It was a short run,but it started to snow.
It was the oddest thing.
I'm gonna Why it's snowing,
right?
Unbelievable.
Unbelievable.
You know, team Willpower hasraised tens of thousands of
dollars for cancer research.
What has it meant to see Will'sstory, um, continue to inspire,
uh, for cancer research?
(26:31):
It's, it's amazing to seehow far it has spread.
Um, there are at least a dozenpeople around who have tattooed
willpower on their arms or their legs.
2014, we actually were invited by thefourth airlift of the United States
Air Force up to, uh, base Lewis McCord.
(26:54):
They made him a pilot for the day andafter he passed away because they really
enjoyed showing him their planes andshowing him the simulators and all this,
and he got into it after he passed away,um, they took some of his ashes and they
put it into their community, uh, room.
At the base.
(27:15):
So his ashes and picturesof him are right there.
Um, and that's wherethey have social events.
They also flew, uh, missions with will'sashes in the cockpit around the world.
Amazing.
So they've, they've taken 'em everywhere.
So are you still raising moneyfor hospitals or academic centers?
We consistently raise moneyfor the Ronald McDonald House.
(27:36):
Mm-hmm.
A place for people, uh,and families to stay.
It is, it is a wonderful.
Organization.
So we raise money for them.
We also fill up their foodpantry with what they need.
Every year we do that.
Um, raising money for the ProvidenceCancer Center, we typically will
do every other year because the,the minimum funding requirements
(27:59):
are, are pretty high and we're notthe best fundraisers necessarily.
We don't have enough, uh, corporatesponsorships or things like that.
So we are able to do 20 to$24,000 every two years.
We're approaching over ahundred thousand dollars.
(28:20):
At this point.
That's fantastic.
Um, thank you for doing that.
We'll have to get you to Philadelphiato, uh, run in our Philadelphia marathon,
which, uh, a a CR has, has been a charitypartner for, for many, many years.
But I think it's fantastic that youand your, your friends and your family
have, um, you know, kept, uh, ironWill's legacy alive, you know, through,
(28:42):
through running in your writing.
Um, you described thegrief of losing will.
How has writing helped you?
Process this experience.
Writing a memoir has helped mework through grief, work through an
understanding of, you know, what life is.
Um, and it is therapy.
(29:03):
Some people go to see someone Iwrite down when I'm feeling, and
sometimes in purposely writing amemoir about all these experiences.
I discover new things aboutmyself and about this whole.
Cancer journey that we'vebeen on and continue to be on.
And so it's very therapeutic for me.
(29:25):
Um, it's a great way to write yourfeelings out and, and really deal with it.
Um, grief doesn't end and um, thereare times when even just little trigger
things you can see, uh, a family witha little kid and you remind you of
will, and that could, that could hurt.
What do you want other parents,um, especially those who have
(29:45):
experienced loss to know, or whatkind of message do you have to them?
One of my friends had a quote,um, which is pretty poignant.
We don't get to determinethe length of our lives.
That's not up to us.
But what we do get to do ischoose how we spend our days.
(30:07):
Is not gonna end.
You have to shut out the noise ofpeople saying it's been long enough.
You have to move on.
You don't move on from it.
You have to find a way to copewith it and understand that
you're never gonna get rid of it.
That you need copingmechanisms to get through this.
The best way I have found for people andwhat I've seen a lot of, um, bereaved
(30:30):
parents do, is they do what I do.
They, they start fundraising.
Some have created their owncharities to help cancer research.
Some have become, you know,more directly involved in, uh,
organizations already out there.
Eventually, some of them have beenambitious enough and focused enough.
They've gone on to beboard of director members.
(30:51):
Really gone all in.
That's the thing you wanna do.
You want to try to stayaway from isolating yourself
from the rest of the world.
It can be em, bittering.
If you see other kids growing up, um,your child's age, it, it can hurt.
But understand, you know, appreciateand celebrate that their kids
are still here and don't getso embittered in your own loss.
(31:15):
Um, always think positive about lifeand about other people around you.
Don't turn to anything dark.
There's a dark side to all of us.
There have been people who have turnedto alcohol and drugs, um, sometimes
violence, uh, suicidal thoughts.
That's, those are typical things,um, that, that could be tempting.
(31:35):
Um, but your life is worth morethan that, and your child doesn't
want you to go down those roads.
What keeps you going?
What keeps you running?
Keep training and, you know, running,uh, again, I remember myself, you know,
running and training for a marathon.
You know, you've gotta put a lot ofmiles in and, you know, you've gotta
have a lot of, uh, positive attitudeto do that is will your motivation.
(31:57):
And obviously fitness, uh, as well
it's fitness, but it's primarily a way totalk to Will and to bond with him still.
Every race I do, every run I do, I carrya jar of his ashes, a small little jar.
And he is always there.
And it's one of these things that inorder to endure training for a marathon,
(32:18):
a lot of lonely miles out there.
Oh yeah.
And so what you can do is thinkabout, I think about Will's life.
And it's like, well, he kept goingwith all those awful things going
on to him, and he didn't stop.
You know, who am I to stop running it?
It it's like, I want to do this.
For physical fitness to run longinto the future so I can have a
(32:40):
coping mechanism in a bonding way.
Our podcast, uh, we, wenamed Believe in Progress.
There's a number of reasons whyI picked that, and I I love that.
What does that phrasemean to you personally?
Believe in progress.
Believe in that we're working our waytowards a day when the cancer won't
(33:00):
be this major disease with such a lowsurvival rate, that we'll be able to get
to a point where, okay, you have cancer.
We have a, a method to 100%.
Um, get rid of it because rightnow we're not anywhere near that,
especially with pediatric cancers,um, in particular metastatic cancers
(33:22):
because they've already developed thatresistance to whatever you did before.
So you run out of options, but believingin that we're gonna get to something.
Um, I believe that thingslike immunology are huge.
Right.
And we're getting better andbetter at that all the time.
We are.
I love, love that answer.
Love that answer.
(33:42):
So if Will was here today, uh, andsaw everything you've done in his
name, what do you think he'd say?
He's partly introvert, extrovert,depending on if he's doing something.
I think that I'm doing thisin his name that privately.
He would be very happy withthis, but publicly he would shy
(34:03):
away because it's like, why areyou making this all about me?
Right?
He, he's not that narcissistic personthat needs to be the center of the stage.
He'd rather like, yeah,that's really nice.
Raise, raise funds, but don't, don't makeme the center of attention all the time.
I'm very inspired by your story andwhat you've done, what you and your
(34:23):
family have done and continue to do.
Thank you so much for your timeand thank you for what you've,
you've done for cancer research andmaintaining that legacy of your son.
Will Joe, thank you for yourhonesty, your strength, and for
sharing Will's story with us today.
Your journey's a powerful reminder thatwhile grief never truly ends, neither does
love, and in that love, there's progress.
(34:46):
One step, one mile, one memory at a time.
To our listeners, if you've been movedby Joe and Will's story, we invite
you to take action, support childhoodcancer research, visiting acr.org.
Share this episode with someone whoneeds a reminder of the power of
love and resilience, and above all.
Remember, cancer research saves lives.
(35:07):
Every dollar raised, every storytold, and every life honored brings us
closure to the breakthroughs we need.
Thank you for listeningto Believe in Progress.
Subscribe wherever you getyour podcast and stay tuned.
For more stories of strength,science, and hope, this episode
is produced by College Cast LLC.
And remember, cancer research saves lives.
Every parent that has a childbattling cancer can't stay there 24 7.
And that's why it's essentialto have both parents there.
They can take turns because itbuilds up to the point where for
your own health, you have to go away.
You have to do something elseand just get your mind off it.
Welcome to Believe In Progress,the American Association for
(00:24):
Cancer Research Foundation Podcast.
Join us and be inspired by the incrediblestories of those who have faced
cancer with strength and resilience,and the medical professionals who
are working tirelessly to find newtreatments and ultimately a cure.
Believe in progress isn't just aboutthe science of cancer, it's about
the human side of this disease.
(00:45):
Together we can make progress inthe fight against cancer and bring
hope to those who need it most.
What does it mean to carry the memory ofa loved one mile after mile, year after
year in a race that never truly ends?
On this episode of Believe In Progress,the podcast brought to you by the A A
(01:06):
CR, we share a deeply moving story aboutlove, grief, and the relentless pursuit of
progress in the face of unimaginable loss.
I'm your host, Mitch Stoller, chiefPhilanthropic Officer at the A A CR,
and today I'm honored to speak withJoe Kki, a devoted father, runner
and advocate who has turned personaltragedy into a powerful mission.
(01:28):
After losing his only child will toosteosarcoma 2016, Joe and his family
began running in Will's memory.
As part of Team Willpower raisingthe critical funds and awareness
in the fight against Cancer,Joe's story isn't just about loss.
It's about carrying forward a legacy.
It's about running with grief andrefusing to let it define you, and
(01:50):
it's about honoring a promise tonever stop believing in progress.
In this episode, we'll talk aboutthe beautiful bond between Joe and
Will forged through running How Hoodto Coast became a living memorial
in celebration of Will's life.
Joe's reflections on grief,resilience, and the power of community.
Why cancer research, advocacy, andremembrance matter more than ever.
(02:14):
And whether you're faced personalloss or simply want to be reminded
of the strength of the human spirit,this episode will stay with you.
Joe, welcome to Believe in Progress.
It's an honor to meet you and thank youso much for being with us here today.
I'm honored to be here and, and giventhe opportunity to talk about this,
let's start off and I'd love to learna little bit about your son Will,
(02:38):
who he was, what he loved, and whatmade him such a special young man
in the beginning, my wife Karen and I, uh,struggled with five years of infertility.
We tried everything and it was throughthree tries of in vitro fertilization
that, uh, will, was conceived.
(02:58):
Right from the get go.
This was a challenge just tohave a child from the very start.
Uh, will has always been energetic.
He's always moving around nonstop.
Even as a, as a 5-year-old or a6-year-old, always curious about the
world, always wanting to know howthings work by taking apart things
(03:18):
sometimes it was not the best thingto take apart, but he would take
apart a radio and we really wish hehadn't, but he was always learning.
Always thinking about what hewanted to do with his life.
Um, I remember when I first startedrunning, uh, right before that I
was in my middle forties and, uh, Iwas way overweight, um, outta shape,
(03:41):
not even close to being a runner.
And I would watch Will ashe ran around the yard.
He was always into everything.
Um, and I.
How am I gonna keep up with him?
How am I, how am I evengonna be around for him?
Because I did worry about, uh, my ownmortality before he would, you know,
(04:03):
grow up and like graduate high schoolor, or even, you know, fall in love
and get married and all those things.
So I decided to get in shape,um, starting about 20 years ago.
It, it was running because, well,running's kind of a simple sport, right?
You, you have a pair of shoes andyou put on some shorts and shirt
(04:23):
and you go out and you just run lotsof miles and you'd stay consistent.
Yeah.
And all along my journey, um, whenI first started Will was right there
with me watching everything I did.
So he was fascinated by itand he wanted to help me.
And after about six months oftraining, I had dropped a ton of
(04:44):
weight and I went to, uh, Walt DisneyWorld and ran their half marathon.
Mm-hmm.
Right off the start.
Yep.
13.1 miles.
And that was tough, even though I hadtrained for about 400 miles of running.
It was still, you know, stressful.
Um, but I got through it and Iremember at the end of the race
(05:05):
it's like, okay, I did that.
I never wanna run again because thatone half marathon, um, you know,
it was like, I'm not doing this.
I've, I've run a couple halves andI've run a couple, uh, full marathons,
so I know exactly what you're saying.
That was about 62 half marathons ago.
Oh my
(05:25):
goodness.
Yeah.
And, and what happened is at the endof the finish line, I'm walking around
and I see Will, and he's shoutingand said, dad, you're wicked awesome.
I want to be a runner too.
So right then and there it's like,well, I guess I'm doing this again.
And so just to have somethingbetween us, I said, okay, we'll go
(05:49):
down this road of running and, uh,keeping it consistent and focusing.
Eventually I, I started to run fullmarathons and in 2012, will's 13 years
old and we're starting to run together.
He wants to be an endurance runnerand particular focus is the hood
(06:10):
to coast, uh, relay race fromMount Hood to Seaside, Oregon.
Very famous, run
the mother of all relay races.
Yes.
And Will wanted part of that.
So I started to train him.
By that time I knew enough about running.
I became his coach and we trainedreally hard for about six months
(06:32):
and we started to run races togetherin a three month period of time.
We ran five races, three ofthem were half marathons.
We did a couple of 10 K races.
Um, we even finished in first place inour age group for one of those races.
So we developed this bond together.
This is our thing.
Mm-hmm.
This is how we, how we work together.
(06:54):
This is how we, um, talk to each other.
It wasn't easy.
There were times, just like any runner,you have those days when you don't
feel like going out there and doing it.
But I pushed them out there to keep'em going, and I taught 'em all about
endurance and about what it takes to keepmoving forward even when you're tired.
(07:14):
So in August of 2012, we did the Hoodto Coast Relay Race, the 12 runners will
and I and 10 friends, and it's 36 legs.
So we all do three legs a pieceand Will did Lake 12, 24 and 36.
What's the distance of the leg?
Typically?
The legs are five to eight miles long.
(07:38):
There's a couple of short onesin there, but they put big hills
in there, so it's not so easy.
You have to really look at the racemap and the profile to understand
what you're getting yourself into.
And it's continuous 30 hours straight,so there's no getting off the course.
There's no, we rest in between our legs.
We get about eight hours, uh, in betweenwith a little rest, but we're just going.
(08:00):
30 hours, and I remember him coming inon leg 36, that anchor leg on Saturday
afternoon and he was just having a blast.
This kid was just into this and wecelebrated afterwards, it's I, I
know my wife was like, I want tostand on top of the car and said,
my son at 13 did Hood to coast.
(08:23):
What did your son do today?
Right.
That must have been a great memory.
It's still there.
'cause I remember as the sun setting,we're out there, we're just exhausted,
uh, sore everywhere and hungry.
We ate everything.
We just blew like fouror 5,000 calories, right?
So we had everything.
And there was just this one thing is afterall that, running, all that training Will,
(08:48):
will complain about his left leg hurting.
At first, well, you ran probablysomething like 600 miles in
this past seven or eight months.
It's not surprising you would've sorelegs or sore knees or anything like that.
What happened was over the next six weekswe tried different kinds of therapies.
(09:10):
We had it X-rayed and one of our friendshappens to be a physician's assistant
and he noticed the way Will was limpingalong and he said, that's not normal.
Mm-hmm.
There's
something more serious going on here.
By mid-October, we were atSeattle Children's Hospital,
uh, talking to oncologists.
And that's when they said,uh, after taking an MRI, they
(09:32):
said, your child has cancer.
And it was osteosarcoma and his lefttibia right below his knee, right then and
there it went from, okay, we're runningto now we're going to endure cancer.
Mm-hmm.
And all those lessons of, um, endurancecame in handy for will to battle cancer.
(09:55):
He kept moving forward in his life ashe has always done throughout his life.
He was always into things and hestill was, even with the cancer, the
chemotherapy, uh, all the surgeries, hehad a part of his tibia bone replaced
twice was the first, uh, um, graft did nottake, so he had to go through that again.
(10:16):
And that's about a sevenhour surgery a piece.
Throughout it all will justkept, kept living his life.
He, he stayed an honor student.
He was in the Boy Scouts and he wentthrough all the ranks of, uh, the Boy
Scouts all the way up to Eagle Scouts.
He became a member of the Order of theArrow, the Boy Scouts Honor Society.
(10:39):
And through all of this, itwas service to the community.
Um.
His eagle project was actually to makethese IV pole little pads at the bottom.
And what it was is little infants couldact, or little kids could sit on them
and ride around with their IV pole.
So that was his service project,
uh,
for his eagle rank.
(10:59):
And it, and it was never oneof these things where I've
got cancer, I have to stop.
He just kept living throughall of this, and while he was
doing that, I was still running.
And we still did Hood to coast throughout,and we started to run in his honor.
That's why we changed thename of the team to Willpower.
Right?
Because if Will could power throughcancer, we can power through
(11:22):
running.
What was his treatment like?
You know, what did he have to endure?
The standard treatment for osteosarcomais the first 12 weeks you go
through three different chemo drugs.
Mm-hmm.
Uh, IC, cisplatin and methotrexate,and they're called CD and m.
C and D are given together througha central port in your chest.
(11:44):
So it goes right through yourheart to start with, and then
it circulates from there.
And so those would go togetherand then two weeks later
you would get methotrexate.
After 12 weeks, they wouldcheck to see how much of the
cancer had been killed off.
And he got great prognosis.
He had a 90 plus percent,um, decrease in cancer cells.
(12:08):
And at that time when they did the firstbone graft and they took out five inches
of his tibia bone and replaced it.
Now when a child of his age at theage of 13, that's about half the tibia
was taken out and replaced, and itwas taken out right up to just below
where the acls would be attached.
(12:31):
Mm-hmm.
So it's really closer the knee.
Mm-hmm.
And, uh, that was a gruelingoperation to go through.
And then after about two weeks ofrecuperation from that, you're right
back onto the chemo, uh, drugs for aboutanother, another four or five months.
And they're constantly checking.
(12:52):
They're doing scans every monthto see what the rate of, uh,
progress is against the cancer.
And they, they call it whenyou get a clear scan, it's
called No Evidence of Disease.
Right.
And that came on June 6th, 2013, andwe were able to go home after that.
(13:15):
And then the standard is everythree months he gets scanned to
see if the cancer comes back.
What was his mindset like being such anavid runner and, and enjoying running
so much to not having that ability to dothat and what powered him through all of
these treatments and things of that sort?
Will always, always had a saying fromStar Wars, never tell me the odds.
(13:39):
Because I'm going to ignore themand continue to live my life.
So no matter what the obstacleI'm going to keep looking forward.
In his first treatment, he had alreadysigned up to go to the Boy Scout National
Jamboree in West Virginia, and thatwas the beginning of August of 2013.
So the focus right from the get go was, Ineed to be at National Jamboree no matter
(14:02):
what All of it takes, no matter how manytreatments, recovery from bone surgery.
I'm going there.
And at first the, the hospital staffat Seattle Children's were hesitant,
but Will, has a lot of power in him,of persuasion to essentially say, no,
I'm going with you or without you.
Just get me in shape to get there.
(14:25):
And that became the focus ofSeattle Children's to get him there.
They changed his treatments.
They, they did everything they could,physical therapy so he could attend.
That was the focus and, anda lot of people need to focus
when they're battling cancer.
Something in the future is a goal.
It's just like running.
If you're, you can run and say, oh,I run every week, but if you don't
(14:47):
have a race in front of you thatyou publicly commit to, how much
are you gonna commit to running?
Right.
Right.
And if you really want to commit to it,what you say is, I. Merit a full marathon
in three months from now, and you telleverybody on social media, well now you
have that pressure to actually perform.
Mm-hmm.
(15:08):
So goal settings for cancerpatients is the same thing.
Hi everyone.
This is Mitch Stoller, chiefPhilanthropic Officer at the A A CR
and the host of Believe in Progress.
I hope you're enjoying today's episode.
I wanted to take a quick momentto remind you that your support is
vital in our fight against cancer.
As we always say at the A A CR,cancer research saves lives, but
(15:30):
we cannot do that without thegenerous support of people like you.
If you're moved by the stories andinsights shared in our podcast,
please consider making a donationto A A CR by visiting aac.org.
Your contributions help fundessential research and provide
support to those affected by cancer.
(15:50):
And while you're here, don'tforget to subscribe to the
Believe in Progress podcast.
By subscribing and sharing with yourfriends and family, you help us reach more
people with these important conversations.
Thank you for your support.
Now let's get back to the episode.
How about you and your wife dealingwith unthinkable diagnosis like this?
(16:11):
Um, obviously you were importantsupport system for iron will.
Talk.
Talk to me a little bit about that.
Karen and I, in the first diagnosis,when it's in a, when it's in
an appendage, it's in his leg.
Yeah.
And we were concerned.
We were afraid for how muchhe was going to endure.
'cause you always hear stories aboutchemotherapy and what it does to people.
(16:32):
But since it was an appendage, wedidn't have that life or death fear
that you would think of becauseit's an appendage what would happen.
You could have it amputated.
It seemed like something doableversus having cancer in your
brain or in your internal organs.
So we didn't have that heightened,uh, fear that he was gonna lose
(16:53):
his life with the first diagnosis.
And since he responded so well totreatment, um, through the first,
first round of this, it was more ofa case of maintaining his weight,
keeping it, keeping him active.
Making sure he didn'tfall into depression.
It was really a focus to, towatch him and to be there.
(17:15):
The level of stress was, well, anythingcould go wrong, but it was not, it
wasn't life or death at that point.
And that, and that's the thing for thefirst two years or so after treatment, um.
It was more of just a case of,okay, let's make sure no evidence
of disease, everything's fine.
(17:35):
We'll just move forward life andtake care of his medical condition.
Um, when you get a bone graft in chemocombined, you get osteopenia mm-hmm.
Which is brittle bones very easilyfor him to, to break any bong,
just even a simple little trip.
And that did happen.
He would fall, he fell over one time athome and he actually split his finger.
(18:01):
His bones had had gotten so brittleand it wasn't much of a, a fall,
but he ended up having to haveadditional plates put in his femur
now just above his knee for this.
It became distressing when in December1st, 2015, they found spots on his lungs.
(18:22):
Mm-hmm.
Now it's metastatic and it's his lungs.
Now it is a fear that our childis going to pass away and he
doesn't have much time left.
Then it becomes more of a, more ofa sleepless night every single day.
You know, is he gonna pass away today?
How much time does he have left?
(18:43):
Uh, what treatments are available?
And you start searching everywhere.
You go across the internet lookingat all sorts of clinical trials.
Mm-hmm.
Um, you're willing to travelanywhere, it doesn't matter.
We will go anywhere in theworld that that has promised.
It becomes that kind of a desperation.
And then there's the depressionof what would life be after Will.
(19:05):
Right.
At this time, he's almost 17 in Decemberof 2015, and we're just thinking, okay.
Does he make his birthday,which is March 27th?
Um, does he even make the year?
And this became a, abigger and bigger concern.
As they took more scans,they could see it spreading.
(19:29):
And the second round of of cancer,the cancer has become immune
to whatever you did before.
So now it's harsher chemotherapiesat first, and then you start
experimenting with clinical trials.
What would work?
So we pulled out all the stops.
I think the, the toughest thing is I'man engineer and on my own, I looked at
(19:53):
the disease rate of progression thathe was experiencing and they actually
applied statistical analysis to this.
And I realized in December of 2015 thatunless we found an effective treatment, he
would probably not see the next September.
And he, uh, passed away on August 22nd.
Mm. Joe, did you go out of statefor clinical trials or did you
(20:18):
not find any, any matches thatwould, you know, show promise?
We were fortunate enough that they hadclinical trials at Seattle Children's.
Mm-hmm.
So we would travel up there.
We tried two of them.
We try to, and it, it was a tricky thingbecause we had Keytruda as one option.
Yep.
And another one called dab.
(20:40):
And the problem is DAB wasonly, was limited by eight.
That if we didn't try thatone first, will would age out.
And then you'd only beleft with the Keytruda.
But the Keytruda, bythat time in, uh, 2016.
Had already been proven effective.
Uh, most notable cases, JimmyCarter taking it in his nineties.
(21:03):
Mm-hmm.
He had two or three dosesand the cancer was just gone.
So we had no choice.
And it's tough for non-medical parentsto understand all of this, but we went
for the osis AB figuring, well, we'llhave two chances, we'll try that, and if
that doesn't work, we could use Keytruda.
(21:23):
And that's the path we went on.
Um.
Theosis AB was completely ineffective.
Mm-hmm.
And his cancer actually acceleratedin the month that we tried that one.
And then Keytruda, by then, hisright lung was already filled with
tumors and was completely useless.
Hmm.
So we were starting late withKeytruda, um, and he only got one
(21:45):
dose of it, because in a clinicaltrial, they look at how much
toxicity is built up in your liver.
Right.
And he just was over the border.
Ah.
And they
would not budge.
And it's like, it's really close.
Can't we just go?
Right.
I mean, and they wouldn't do it.
They wouldn't go for it.
Yeah.
Yeah.
No,
Joe, Joe, tell me thatquote again from Star Wars.
It, it sounded like thatquote really sums up will.
(22:08):
Oh yeah.
Never tell me the odds becauseI'm gonna live my life anyways.
But that first part is rightfrom Star Wars Han Solo.
Love
it.
Love it.
Let, let's chat a little bit about teamwillpower and the legacy of advocacy.
Um, so even in the, thewake of Will's passing, you
continue to run hood to coast.
Tell me why that was so importantto you and, and your family
(22:31):
will passes away.
And August 22nd, it's theweek of Hood to coast.
Four days later we ran Hood to coast.
It started on that Friday.
And there was no question afterwill passed away, my wife and I
looked at each other and said,you have to run hood to coast.
There was no, there was nodebate, there was nothing.
(22:51):
You have to do this.
And that first one was important,um, as a way to honor his life.
And, um,
that one was emotional becausethe entire team knew well.
They had seen him a couple of yearsbefore at the races, at the finish
lines and things like that, sothey knew who he was and all of us
(23:17):
just focused, let's get this done.
There are a lot of other teams, Iknow plenty of them by this time.
Um, I had done some fundraisingfor the Leukemia and Lymphoma
societies team in training.
Mm-hmm.
Ran with them for many years to dothe Portland Marathon and then also
became one of the marathon coaches.
And a lot of those people endup doing hood to coast as well.
(23:42):
And all those teams,
when they saw us, they, uh, supported us.
Wow.
I remember in the middle of thenight running my, my, uh, second leg,
which is always usually about oneo'clock in the morning, running out
towards, running away from Portland.
And I remember on the, on the freeway inbig chalk letters that said willpower.
(24:05):
Hmm.
You had no idea.
No idea.
And it's just another team.
Oh.
Uh, other teams painted, um,willpower on their arms, their legs.
How'd it make you feel?
Amazing emotional when the race finished.
Mm-hmm.
Because it's, it's okay.
The race is over.
(24:25):
You've celebrated, but then griefcomes back because he is not here.
Were you still running whilehe was dealing with his cancer?
Yes, I used it as a form of stress reliefto go out and just get away from things.
Yep.
Everybody needs a break.
Every parent that has a childbattling cancer can't stay there
(24:46):
24 7, and that's why it's essentialto have both parents there.
They can take turns because itbuilds up to the point where for
your own health, you have to go away.
You have to do something elseand just get your mind off it.
He want you to run.
Absolutely.
Yeah.
Um, we, we did expandout to other relay races.
(25:07):
We did it another endurance racecalled the Cascade Lakes Relay.
It's a much more grueling racethan the Cascade Mountains.
It's 216 miles above4,000 feet in elevation.
What's the same idea?
What's the legs on that?
The relay legs on that.
In one of those legs, you'rerunning up one of the cascade
mounts called Mount Bachelor.
(25:27):
It goes from 3000 feet up to6,000 feet and five miles.
Oh boy.
Yeah.
Nobody wants to do that.
It's like draw the shortstraw and you're it.
Yeah.
Have you run, uh, Ragnar?
Yes, I have.
I've run Ragnar Pacific Northwesta couple of times, and I have
also run when they had it.
Ragnar, the big island in Hawaii.
(25:48):
Right.
That was even more gruelingthan the rest of them.
My first race, if you know about the bigisland, the helo side is incredibly humid.
It's a tropical place.
I ran 11 miles on that side andthat humidity and heat at night.
We ran up, uh, I think it was Monte Loa.
It got so high up.
(26:09):
It was a short run,but it started to snow.
It was the oddest thing.
I'm gonna Why it's snowing,
right?
Unbelievable.
Unbelievable.
You know, team Willpower hasraised tens of thousands of
dollars for cancer research.
What has it meant to see Will'sstory, um, continue to inspire,
uh, for cancer research?
(26:31):
It's, it's amazing to seehow far it has spread.
Um, there are at least a dozenpeople around who have tattooed
willpower on their arms or their legs.
2014, we actually were invited by thefourth airlift of the United States
Air Force up to, uh, base Lewis McCord.
(26:54):
They made him a pilot for the day andafter he passed away because they really
enjoyed showing him their planes andshowing him the simulators and all this,
and he got into it after he passed away,um, they took some of his ashes and they
put it into their community, uh, room.
At the base.
(27:15):
So his ashes and picturesof him are right there.
Um, and that's wherethey have social events.
They also flew, uh, missions with will'sashes in the cockpit around the world.
Amazing.
So they've, they've taken 'em everywhere.
So are you still raising moneyfor hospitals or academic centers?
We consistently raise moneyfor the Ronald McDonald House.
(27:36):
Mm-hmm.
A place for people, uh,and families to stay.
It is, it is a wonderful.
Organization.
So we raise money for them.
We also fill up their foodpantry with what they need.
Every year we do that.
Um, raising money for the ProvidenceCancer Center, we typically will
do every other year because the,the minimum funding requirements
(27:59):
are, are pretty high and we're notthe best fundraisers necessarily.
We don't have enough, uh, corporatesponsorships or things like that.
So we are able to do 20 to$24,000 every two years.
We're approaching over ahundred thousand dollars.
(28:20):
At this point.
That's fantastic.
Um, thank you for doing that.
We'll have to get you to Philadelphiato, uh, run in our Philadelphia marathon,
which, uh, a a CR has, has been a charitypartner for, for many, many years.
But I think it's fantastic that youand your, your friends and your family
have, um, you know, kept, uh, ironWill's legacy alive, you know, through,
(28:42):
through running in your writing.
Um, you described thegrief of losing will.
How has writing helped you?
Process this experience.
Writing a memoir has helped mework through grief, work through an
understanding of, you know, what life is.
Um, and it is therapy.
(29:03):
Some people go to see someone Iwrite down when I'm feeling, and
sometimes in purposely writing amemoir about all these experiences.
I discover new things aboutmyself and about this whole.
Cancer journey that we'vebeen on and continue to be on.
And so it's very therapeutic for me.
(29:25):
Um, it's a great way to write yourfeelings out and, and really deal with it.
Um, grief doesn't end and um, thereare times when even just little trigger
things you can see, uh, a family witha little kid and you remind you of
will, and that could, that could hurt.
What do you want other parents,um, especially those who have
(29:45):
experienced loss to know, or whatkind of message do you have to them?
One of my friends had a quote,um, which is pretty poignant.
We don't get to determinethe length of our lives.
That's not up to us.
But what we do get to do ischoose how we spend our days.
(30:07):
Is not gonna end.
You have to shut out the noise ofpeople saying it's been long enough.
You have to move on.
You don't move on from it.
You have to find a way to copewith it and understand that
you're never gonna get rid of it.
That you need copingmechanisms to get through this.
The best way I have found for people andwhat I've seen a lot of, um, bereaved
(30:30):
parents do, is they do what I do.
They, they start fundraising.
Some have created their owncharities to help cancer research.
Some have become, you know,more directly involved in, uh,
organizations already out there.
Eventually, some of them have beenambitious enough and focused enough.
They've gone on to beboard of director members.
(30:51):
Really gone all in.
That's the thing you wanna do.
You want to try to stayaway from isolating yourself
from the rest of the world.
It can be em, bittering.
If you see other kids growing up, um,your child's age, it, it can hurt.
But understand, you know, appreciateand celebrate that their kids
are still here and don't getso embittered in your own loss.
(31:15):
Um, always think positive about lifeand about other people around you.
Don't turn to anything dark.
There's a dark side to all of us.
There have been people who have turnedto alcohol and drugs, um, sometimes
violence, uh, suicidal thoughts.
That's, those are typical things,um, that, that could be tempting.
(31:35):
Um, but your life is worth morethan that, and your child doesn't
want you to go down those roads.
What keeps you going?
What keeps you running?
Keep training and, you know, running,uh, again, I remember myself, you know,
running and training for a marathon.
You know, you've gotta put a lot ofmiles in and, you know, you've gotta
have a lot of, uh, positive attitudeto do that is will your motivation.
(31:57):
And obviously fitness, uh, as well
it's fitness, but it's primarily a way totalk to Will and to bond with him still.
Every race I do, every run I do, I carrya jar of his ashes, a small little jar.
And he is always there.
And it's one of these things that inorder to endure training for a marathon,
(32:18):
a lot of lonely miles out there.
Oh yeah.
And so what you can do is thinkabout, I think about Will's life.
And it's like, well, he kept goingwith all those awful things going
on to him, and he didn't stop.
You know, who am I to stop running it?
It it's like, I want to do this.
For physical fitness to run longinto the future so I can have a
(32:40):
coping mechanism in a bonding way.
Our podcast, uh, we, wenamed Believe in Progress.
There's a number of reasons whyI picked that, and I I love that.
What does that phrasemean to you personally?
Believe in progress.
Believe in that we're working our waytowards a day when the cancer won't
(33:00):
be this major disease with such a lowsurvival rate, that we'll be able to get
to a point where, okay, you have cancer.
We have a, a method to 100%.
Um, get rid of it because rightnow we're not anywhere near that,
especially with pediatric cancers,um, in particular metastatic cancers
(33:22):
because they've already developed thatresistance to whatever you did before.
So you run out of options, but believingin that we're gonna get to something.
Um, I believe that thingslike immunology are huge.
Right.
And we're getting better andbetter at that all the time.
We are.
I love, love that answer.
Love that answer.
(33:42):
So if Will was here today, uh, andsaw everything you've done in his
name, what do you think he'd say?
He's partly introvert, extrovert,depending on if he's doing something.
I think that I'm doing thisin his name that privately.
He would be very happy withthis, but publicly he would shy
(34:03):
away because it's like, why areyou making this all about me?
Right?
He, he's not that narcissistic personthat needs to be the center of the stage.
He'd rather like, yeah,that's really nice.
Raise, raise funds, but don't, don't makeme the center of attention all the time.
I'm very inspired by your story andwhat you've done, what you and your
(34:23):
family have done and continue to do.
Thank you so much for your timeand thank you for what you've,
you've done for cancer research andmaintaining that legacy of your son.
Will Joe, thank you for yourhonesty, your strength, and for
sharing Will's story with us today.
Your journey's a powerful reminder thatwhile grief never truly ends, neither does
love, and in that love, there's progress.
(34:46):
One step, one mile, one memory at a time.
To our listeners, if you've been movedby Joe and Will's story, we invite
you to take action, support childhoodcancer research, visiting acr.org.
Share this episode with someone whoneeds a reminder of the power of
love and resilience, and above all.
Remember, cancer research saves lives.
(35:07):
Every dollar raised, every storytold, and every life honored brings us
closure to the breakthroughs we need.
Thank you for listeningto Believe in Progress.
Subscribe wherever you getyour podcast and stay tuned.
For more stories of strength,science, and hope, this episode
is produced by College Cast LLC.
And remember, cancer research saves lives.
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