The Lump in My Head: Beating Cancer at 9 Years Old

Episode Transcript
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Speaker 1 (00:00):
This is Crafting Survival, a podcast that is not
just about cancer.
It's about the challenges inlife.
It's about surviving,overcoming, developing plans,
speaking with survivors, peoplewho have dealt with cancer,
dealt with other challenges,experts in the field of medicine
, science, innovation anyone whohas dealt with life's

(00:20):
challenges.
This podcast for you.
Sit back and enjoy CraftingSurvival.
Welcome to the show.
I would love to introduceJeremy Wei and Philo to our
podcast, crafting Survival, andthey have an extraordinary story

(00:44):
that we are excited to sharewith our audience and love to
just get going.
So, jeremy and Wei and Philo,where are you all from?
First of all, and let's talkabout how you ended up in the
Bay Area of California.

Speaker 3 (01:04):
Sure, so nice to meet you.
So originally we've kind ofmoved around a little bit but we
were for the past kind of 15years or so, based in London in
the UK, where we originally wentfor school and ended up just
kind of staying and we were bothworking there.
So Philo was kind of born andraised in London and I guess

(01:27):
what brought us to the Bay Areawas kind of a, I guess, what
they call an accidentaldiscovery.
So we had a normal Fridayafternoon I think it was Philo's
second day of school and we hadan optician appointment that
was scheduled because we noticedthat his vision seemed to be a

(01:50):
little bit worse than it wasbefore and we weren't really
sure why.
So we thought maybe he mightneed glasses.
So we booked an appointment atthe optician and after school I
brought Philo there.
And after school I broughtPhilo there and within a couple
minutes of the examination weknew that something was wrong
because the optician just kindof stopped it and said Dad, you

(02:12):
need to go to the emergency room, without really giving me other
context on why.
So obviously he took his adviceand went to kind of the
emergency room.
He gave us kind of a letter togive to the hospital so that
they kind of, I guess, knew tobump us up.
And that's kind of what starteda journey for us which ended up

(02:36):
bringing us here.

Speaker 1 (02:37):
So it's just a normal school day.
Everything leading up to thispoint in time was normal, other
than you know, some blurryvision.

Speaker 4 (02:44):
And what grade in school was Philo in?

Speaker 3 (02:46):
uh, he's in.
He's in fourth grade now.

Speaker 1 (02:49):
Uh, and this was, I think, last year, right, so it
would have been third grade yeah, so we're talking like this is
the last year and a half of yourlife, right of just kind of
right.
Yeah, this was uh september ofof 2022 right during or I guess
right after kind of the wholeCOVID, you know, chaos and
lockdowns and all of that.
And now and now this Just goingback to Wei and Jeremy, what do

(03:13):
you, what were you doing in theUK, like what are your
professions or what you know,just out of curiosity, what do
you, what do you guys do I workin?
tech, so I work for a US-basedcompany, and I work for a us
based company and uh I work forjewelry company so you're,
you're used to probablytraveling all over, right and uh
, getting over and and to the uswas was probably fairly easy

(03:33):
for you to figure out and and dothat.
Um, I think it's and these aresome of the important points too
, as we talk about other peoplethat may not understand how to
get from point a to point b umand part of crafting survival.
So forgive me if I keep backingyou up a little bit to learn,
you know kind of how you guyswere able to figure out you know
what the story that we're aboutto tell.

Speaker 3 (03:58):
Yeah, I think on that point, like I lived in the USs
before, which, um, obviouslymade it a little bit easier for
us to uh to come over, but yeah,I think that was a
consideration now let's fastforward to this day.

Speaker 1 (04:12):
Um, and you're told to go to the emergency and you
don't really know what's goingon, other than this was supposed
to be a normal optometry kindof appointment just to figure
out what why he had blurryvision.
Where were you in this?
You know phone.
You know where do you come inon this?

Speaker 5 (04:25):
particular day At work, at work, I was at work and
then Jeremy said to me we'regoing to an emergency room.
So I just I just left the workand then just met them in the
emergency room.
And then, and then I thinkafter two hours, they just sent
us before and went to see thedoctor.
And then doctor was testing himand she said his balance was

(04:51):
off.
He's like he's off,Everything's off.
She just picked us aside.
She was like it's not good news, we don't know what we're
talking about.
She ordered a CT scan and thensaid that's what I'm suspecting.
And then you know, we'll letyou know.
So then Jeremy went to CT withFido and then they you know

(05:14):
that's how they found the mass.

Speaker 1 (05:16):
So when you were thinking like things are off,
like what you know, I mean asparents, you know Matt and I are
both parents.
Matt has four children.
I have five children and youknow what we're talking about
here is like our as a parent arelike one of our worst
nightmares, right Of.
So what was going through yourmind at this point?
Were you like you know whatcould this be?
Do you have?

(05:36):
Did you?
Did your mind go to the worstplace?
Or are you thinking still likenot a big deal?
I mean not in a big dealbecause you're in the emergency,
but for me.

Speaker 5 (05:44):
I I thought it was, it was a dream, like it was just
not real.
So I I don't know how toprocess it.
It was just like a kind ofcompletely blank, like whatever
they tells me, I just kind oflike I don't even know if I hear
anything, I just like somethingis wrong.
That's all I have in my mindand I just have to keep going.

(06:06):
Whatever they say, just keepgoing.
You know, like they said okay,we're gonna do surgery, or like
a okay.
And then there's like no, no,yes or no, you know we have to
do surgery, like right away andyou still don't know what it was
.

Speaker 1 (06:19):
There's just a mass and we have to do surgery yeah,
basically.

Speaker 3 (06:22):
Yeah, I mean like leading up into the point where
they did the ct scan and and saweverything, um, you know, I
think similar to way it was justreally focused on on him and
trying to make the wholeexperience as like nice as it
could be.
So it was kind of like laughing, joking around, just trying to
keep the mood positive while thedoctors ran through their tests

(06:42):
, um, because we didn't want tocause alarm and make the
situation scarier than it neededto be.
And then, kind of once theytook us into a room and by this
point it was probably maybe like11 o'clock or 10 o'clock at
night.
They kind of just showed us ascan, said that there was a mass

(07:04):
there.

Speaker 5 (07:06):
Oh, they didn't show us a scan.

Speaker 3 (07:06):
No, they didn't show a scan, but they told us what it
was and basically they kind ofwalked us through what the next
steps would be, and they saidthat they were going to be
transferring us to anotherhospital that had a special
neurosurgery unit, that we werewaiting on transport ie an
ambulance to bring us to thesecond one, transport ie an

(07:28):
ambulance to bring us to thesecond one and that he would be
going into surgery at like 7.30the next morning.
So you know, that basicallystarted kind of a pretty
sleepless 48 hours where we hadgone from.
I mean, father was still in hisschool clothes and you know,
and part of the tough thing aswell for him was because I think
that they had expected that hemight need to go into surgery,

(07:50):
so they wouldn't let him drinkany water, they wouldn't let him
eat anything, and so you know,eight years old being picked up
from school in the afternoon,having to wait, effectively it
was kind of like, you know, Idon't know that's the hardest
part 15 hours or something likethat without eating.
So you know, I don't know that'sthe hardest part 15 hours or
something like that withouteating.
So you know it was tough andobviously you know, just having

(08:11):
those conversations were kind ofscary but it wasn't really
sinking in because we had somuch to do right in front of us
that we didn't really have anytime to process or react to.
We just kind of had to do whatthey were saying.
So it's waiting for theambulance and then, once you get
to the ambulance, you go to theother hospital.
And then this was, I think, aFriday night in London and when

(08:33):
we got to the other hospital itwas kind of chaotic.
We're in the emergency room.
There was people coming in withall sorts of injuries which you
know you could expect in a bigcity on a Friday night, and it
wasn't really, you know,peaceful or planned out or
expected.
So we were just trying to keepthe mood light as we go through
it, while also, you know,telling file a little bit about

(08:57):
what was happening.
But it was, it was definitelyscary.

Speaker 1 (09:00):
Yeah, and you must have been sitting there going.
What are we even doing here atthis moment in time, you know?
Or rushing?
So is there just out ofcuriosity, if they rush you to
surgery, because we see this alot in cancer and diagnostics,
is a rush off to surgery?
I mean, was there any point intime you're like wait, do we put
on the brakes or do we?

(09:21):
Why the urgency?
In a sense, right, if he wasjust balanced and blurred vision
, you know why would we rush nowto surgery?

Speaker 5 (09:33):
they never explained to us until the next morning,
when he was already down in thetheater.
And then the surgeon came to meand then just, you know, we
don't even know we have.
So he said that it was Saturdaymorning.
He said there's a reason theycall me to come on Saturday.
I don't know the surgeon, Ihave no background, nothing.

(09:54):
And then and he just looked atme, he said you know, you don't
have a choice.
That's what he said.
You don't have a choice.
He said you know we need togive him the best chance and
then just let me do my job.
And then I don't know what tosay, like I literally he said if
you don't, you know.
He said if you don't, you'relooking at days oh, wow yeah, so

(10:16):
he.

Speaker 3 (10:17):
What they said to us was that the the mass was very
large.

Speaker 5 (10:20):
I think it was about the size of a tennis ball.

Speaker 3 (10:26):
And they said that it was causing a lot of pressure,
which is what was impacting thevision.
And that was kind of.
The first clue, back to theoptician, was that his optic
nerve was swollen because thepressure in his head was kind of
pressing up against it, andthat's something that you can
see from an eye exam which wehad no idea that you could kind

(10:47):
of tell that from from before.
Um, and, yeah, I think, similarto a way said, he did kind of
explain to us what the, what theissue was and mentioned that it
was uh, it was very dangerousand that he, although he was
asking for a consent, he's likeyou really don't have much of a
choice here because, like, weneed to act now and you know,
with um, I guess what they sawin the scan and plus the, the

(11:10):
optician exam, um, it's a verydangerous situation and it was
one of those things where theythey felt that, you know,
delaying at all um could just bea huge risk.
So that's why they moved forkind of an immediate surgery.

Speaker 4 (11:23):
Yeah, seemed like the right decision yeah.

Speaker 3 (11:25):
Yeah, it definitely was.
I think that right until wekind of wheeled him into the
surgery room where obviously weweren't able to go anymore, and
then we just had to kind of wait, I think that was probably the
moment where it really just kindof hit us, because that was the
first time where we had amoment to ourselves to just kind

(11:46):
of stop and think about whatwas actually happening.

Speaker 1 (11:49):
And put your child in someone else's hands.
Yeah, that'd be the worst part.

Speaker 3 (11:53):
Waiting, yeah, I mean , you know I think, even even
leading up to it, Philo was, Ithink, like he was.
He was very positive.

Speaker 2 (12:02):
So when I was on the ambulance, the first thing I
said am I going to be on thenews?

Speaker 4 (12:12):
Were you, were you on the news?

Speaker 2 (12:15):
Yeah.

Speaker 3 (12:16):
Eventually I was, but I think that that was like a
good example that likethroughout the whole process we
were just trying to make everystep kind of as fun as it could
be.
It's like, oh cool, like we getto ride an ambulance, like
never done that before also whenI was in the ambulance I was
like, is that us, those sirens?

Speaker 2 (12:33):
because it felt so it was so quiet on the inside.
I was like, was that us?
Because you said it was usright and like I was like what,
that's not us, it's not possible.
It can be us right because likefrom the outside that they're,
they're super loud right soeveryone can like the whole

(12:55):
street can know.
But but then after like I, Iunderstood.

Speaker 1 (13:02):
Uh, that's funny.
You want to know somethingfunny, philo?
Yeah, mr Matt and I have anambulance that's converted into
a camper RV, so we know exactlywhat you're talking about.
Inside it's really quiet and MrMatt put sirens on it.
And then there's Ghostbusterstickers on it.
It's kind of funny that's ourGhostbuster mobile.

(13:23):
I love ghostbusters we'll sendyou a picture I watched it once.

Speaker 2 (13:31):
I watched like half of the first movie, like where
it cooks eggs by itself and withthe librarian where, like all
the books flew out, yeah, ofeverywhere yeah, I remember that
that's a fun movie, fun movie.

Speaker 1 (13:48):
So so you're, you're now at, you know, uh, he's in
surgery and you're waiting.
How long?
How long did you have to wait?

Speaker 3 (13:58):
the first one was about 12 hours yeah, so it so he
got in at.
Yeah, I think he went into theoperating theater at around 7.30
in the morning.

Speaker 5 (14:10):
Yeah, and then probably just started at 9.30,
10, around that time and then hewas out just before 1 o'clock
in the morning.

Speaker 1 (14:20):
I'd say Wow that had to have been the longest hours
of your life.

Speaker 3 (14:23):
It was a very long day and that was the first of
three surgeries over the nextthree weeks.
It was basically one surgery aweek for three weeks because it
was in a hard to reach location.
So our surgeon used kind of anendoscope and kind of

(14:45):
specialized in difficult toreach tumors and also tried to
be minimally invasive as well.
So yeah, so that was kind of anintense period of three weeks,
which ended up turning intoalmost two months, of just being
in the hospital nonstop, everynight.

(15:05):
And again it was all just outof the blue.

Speaker 1 (15:10):
You had at one point told me how many total hours of
surgery that he had undergone bythe time that you were done 35,
I think in total 35 hours ofsurgery total.

Speaker 5 (15:22):
That was the first three.
So he had 12 hours and then thesecond one was about six hours.
So the surgeon said he doesn'twant to push him too hard, you
know, because the first one was17 hours, 16, yeah, he developed
16.
So the first one he lost like250 ml of blood and then the

(15:43):
third one he lost about like 400something.
So the doctor told me so thenthey have to get all the blood
ready for him.
So because of the you know, thetumor, there's a lot of
bleeding.
So obviously you know you justdon't hear anything and during
the surgery they don't tell youwhat's going on.
And then you just keep callingthe nurse and the nurse said we
haven't heard anything.

(16:04):
So you just keep calling thenurse and they said we haven't
heard anything.
So you just kind of waiting.
And then I remember the lastone, by 11 o'clock I haven't
heard anything.
So I call every half an hour,probably by one o'clock, there's
still nothing going on.
By 1 30, I'm just going in, soI just went, and then we just
sit there.
And then 2 30, they said thathe's coming up.
Mr matt thinks that he'ssuperman.

Speaker 1 (16:23):
Mr Matt thinks that he's Superman, but I think,
philo, you're Superman.

Speaker 4 (16:28):
Yep, it's pretty amazing yeah.

Speaker 3 (16:30):
Yeah, he has some good questions too.
I think before the firstsurgery he was walking down to
the operating theater and therewas Walking down.

Speaker 5 (16:39):
No, you're holding-.

Speaker 3 (16:39):
Yeah, you're walking, and he was following the
neurosurgeon and he was askinghim questions.
He's like so, um, have you donethis before?

Speaker 1 (16:49):
and that's a great question.

Speaker 3 (16:52):
Like yes, I've done this before.
He's like with a kid my age.
And he's like, yes, with a kidmy age.
Um, there was a girl well yourage all right, you're your age.
Yeah, when was the?

Speaker 2 (17:01):
last time I, I, you, done this.
Yeah, he's like when was thelast time you did it?

Speaker 3 (17:03):
like okay about two.
He's like when was the lasttime you did it?
He's like okay about two weeksago.

Speaker 5 (17:08):
And he goes pretty good.

Speaker 3 (17:09):
Yeah, pretty good.

Speaker 2 (17:11):
So he had some good questions leading in and he I
mean his attitude throughout thewhole thing was just, that was
when I was eight, right?
Yeah, it was like when I wasseven, because it's 2024.

Speaker 5 (17:26):
But it's 2024, but it's not my birthday just yet.
Yeah, yeah, he also, becausethey asked him do you have any
questions for me?
You know.
And the surgeon asked him um,do you know why you're here?
He was like yes, what did yousay to dr, he said?
He said, yes, I know, becauseyou've you found a lump in my
head and you're going to take itout.
So they didn't tell us untiluntil much later yeah, I think

(17:49):
it was probably until like afterthe third, after the third
surgery, so, and then theybrought us together.
It was like god knows how manypeople in the room, so there's
like a their oncologist andthere was, uh, the surgeon.
There was like a somebody andthere's like their oncologist
and there was the surgeon.
There was like somebody andthen there was a bunch of nurses
, social workers, somebody.

(18:10):
There's like probably around 10, just about 10 people.

Speaker 3 (18:14):
Yeah, there's about a dozen people.

Speaker 5 (18:15):
So we don't know who they are.
And then they came.
They said you know they don'tshow us anything.
They said you know, we have ourpathology results back and it's
, you know high grade't show usanything.
They said you know we have ourpathology result back and it's,
you know high-grade glioma andgrade four.
You know that's what they saidto us.
So we're like okay, and thenthey said that we're just going
to, so the next step isradiotherapy and then you know

(18:38):
temozonamide and that's whatwe're going to give it to him.
So because before that I did alot of research on all sorts of
uh, you know, brain tumors likeall, like any kind, so I was
guessing what can be from whatthe surgeon was telling me or
how it looks like you know whatis, uh, you know like there's a
process of what's a possibility.
So I kind of narrow it down tofeel of them, what is most

(18:59):
likely in children around thisage, when they, when they told
me and then you and then Jeremydidn't know what that means he
just heard Wakeford as onlyanything he heard.
So for me I kind of have an ideaand I kind of have an idea of
what kind of treatment theremight be, but it was still

(19:20):
shocking because I was hopingit's something different.
And then, and then that's whatthey gave it to me.
And and then I, you know like,and when they said, you know,
we're going to just give him thetemozotamide and then also the,
you know, radiotherapy, so Iwas thinking, is there any other
possibility, that you knowother options?
So and then that was a questionprobably right after meeting

(19:43):
with them, and then we discussedwith uh within ourselves
obviously at that time Jeremydoesn't know any of that, so he
doesn't know how to respond tome.
And then then the doc.
So I that's the time I askedthe doctor for the pathology,
result in which that wasn'tgiven to us.

Speaker 1 (19:59):
What made you think?

Speaker 5 (19:59):
literally was verbal.

Speaker 1 (20:02):
What made you think to ask for the pathology results
?

Speaker 5 (20:04):
because that's not something that people normally
even think to ask for because,uh, and that time it's just, um,
you know, because I was readingall the, all the information, I
know there is, uh, you know,like there is uh, um, like a
peptide, peptide, peptide, andthere is like an immunotherapy,

(20:25):
and then all those information,and then they need, you know,
all those like studies, like aDNA kind of testing and then
sequencing, and then to be ableto make those things.
So, you know, I want to know ifthat's a possible, you know,
possible treatment for him.
So that's another reason I wasasking for it, and then that was

(20:47):
just a struggle that all theygave it to us is the pediatric
hybrid glioma, grade four, andthen they said wild type.
That's all they said.

Speaker 3 (20:58):
Yeah, nothing else In the context of this as well.
I think by the time we had thatmeeting we had already been in
the hospital for probably amonth For about six weeks.

Speaker 2 (21:10):
That's spending every night, a month and two weeks.

Speaker 3 (21:16):
That's spending every night in the hospital.
You were saying with me everynight yeah, I was sleeping in
the hospital every night.
Yeah, I was sleeping in thehospital, um, and then we'd kind
of like do a like a like ashift swap, where you know we
would come in and then I wouldgo home and shower and then
spend a couple hours and thencome back, um, yeah, and
basically in in all the rest ofthe time that we had we were

(21:36):
still trying to figure out whatwas going on.
So, kind of back to to yourpoint around why we asked for it
, uh, we just wanted to try andunderstand what was going on and
you know, a lot of theinformation kind of comes in
little drips, like you don'treally know what's going on, and
I think there was definitely,um, a strong, just urge and
desire to try and do something,because it can easily be a very

(21:58):
kind of powerless situationwhere you, you feel like you're
kind of at the whims.
Yeah, buddy.

Speaker 2 (22:02):
One night I was, I, I , I, I fell asleep at two
o'clock and mommy was there attwo o'clock.
Is that yes?
That was after surgery yeah, itwas two o'clock in the morning.
She was on high steroids shewasn't gonna leave you?

Speaker 5 (22:21):
yeah, he couldn't because he was on dex, so he was
really high, you know, makingme very alert.

Speaker 3 (22:29):
So I was there until he came home and I was leaving
him at home, yeah, but I meanfor that whole time in the
hospital kind of six to eightweeks it was pretty much every
spare moment was just spenttrying to research stuff online
and learn what all this stuffmeant was just been trying to
research stuff online and learnwhat all this stuff meant.

Speaker 2 (22:47):
Well, once I went to bed at two when I was in the
hospital, and then I woke up atsix, which is four hours, and I
also, uh, went to bed at 12 andwoke up at four, which is, which
is another four hours.

Speaker 3 (23:07):
He references this when he wants to stay up late.
Yeah, I was going to say I cando it, I can do it.

Speaker 1 (23:11):
I can go to school in four hours of sleep.
I can do it, Mommy.

Speaker 4 (23:15):
Sounds like a college student.

Speaker 1 (23:16):
Yeah, right, yeah, he's getting ready so well, one
of the things I tell people allthe time, number one is get your
pathology report, becausethat's what determines your care
.
You know, going forward, 80% ofwhat happens in people's care
is that pathology report andwhatever that says or doesn't
say, and you go, okay, well,maybe there's more that we need
to do here, and so, a way, Ikind of remember you telling me

(23:40):
that you recognize that youneeded probably more testing,
like you needed to understandmore that there was something
not done which I believe yousaid he needed and hadn't had.
It was DNA sequencing.

Speaker 5 (23:53):
Yeah, I think when, finally, it was probably another
six weeks after they gave methe pathology results, which is
12 weeks.

Speaker 1 (24:02):
That's a long time.

Speaker 5 (24:03):
Which I go to the doctor, uh, the nurse, the
oncology nurse, like everysingle day, like literally I was
shouting at her.
I said you need to give it tous, otherwise, you know, then
we'll have to go through thelegal, legal, you know, like a
channel, because this isridiculous.
You know we need it.
And then they said, okay,you're entitled to a second
opinion, but the second opinionis with in the system, which is

(24:24):
the same, there's nothingdifferent, just different
hospital.
But it's the same kind offacility, same kind of
procedures, there's not muchdifference.
I said I don't want a secondopinion locally, I want a second
opinion elsewhere, they told us.
They said everybody alwayswants something else and you

(24:45):
know, they always think, youknow, like we are the best.
You know there's nothing betteroutside.
That's what they told us.
Don't waste your money.
They just want to cheat yourmoney.
You go to germany and then youknow they were happy to take
your money, but they're notgoing to do anything for you.

Speaker 1 (24:59):
So that's what that's like telling us is that that,
like you know, I mean to me.
I struggle with that a lotbecause I hear that a lot in
what I do and I don't understandthis I don't have a better way
of putting it this idea ofplaying God right, like we're
the best, we have all theanswers and there's nowhere else
to go.

(25:20):
I don't know how any one personcan believe that to be true and
tell families or patients this.
So that's interesting.
You know that you guysexperienced that as well.

Speaker 5 (25:33):
Because the doctor the first one, she was a
pediatric oncologist.
So then I asked her.
I said you know, are you aneuro-oncologist?
And she said no, I'm anoncologist.
So it's like in general.
I said, you know, I know, areyou a neuro-oncologist?
And she said no, I'm anoncologist, so it's like in
general.
I said you know, I want tospeak to a neuro-oncologist.
She said, but I take care ofthe neuro part.
But I was like no, I need tospeak to the neuro-oncologist.

(25:54):
And then she was like you know,that's what I'm doing right now
.

Speaker 1 (25:57):
So like it's just standard conversation, you're
not going anywhere did you askher how many children brain
tumors that she had taken careof, just like phylo?
Asked the surgeon maybe phyloneeded to ask, I'm just kidding,
yeah, yeah, it would have beena help she just gave me the the
leaflets for chemosolomide.

Speaker 5 (26:16):
She was like you're ready, that's what I'm going to
give it to her.
I said I'll give it to him.
I said and how do you know it'sgoing to work?
She was like we don't know.
And then she was like this iswhat we give to all the children
.

Speaker 3 (26:28):
They said it's the standard of care they kept
repeating it it's the goldstandard.

Speaker 1 (26:35):
It's very well tolerated and the life
expectancy of brain tumors withtemozolomide is.
I think it's like 12 to 15 orsomething like that.

Speaker 3 (26:44):
Do you guys know, prognosis wasn't good, and the
thing they kept repeating wasthat well, it's the gold
standard, it's well-tolerated.
And we asked, well, okay, butlike, how effective is it?
And they're like, well, youknow, not so much.
And I think that was, you know,the start of when, I think,
some of the alarm bells startedgoing off for us, because you
know, we traveled over an hourto get to this other specialist

(27:06):
hospital, it was like two hours.
And then when we got there tomeet with the doctors and we, we
, we hope that it would kind oflike just illuminate things
because up until this point theyhadn't actually given us
anything in writing thatactually said what the diagnosis
was.
And you know we had.
I mean, we were reaching out toliterally anyone that we knew,
anyone with any vague connectionto the medical community.

(27:30):
You know a friend who knowssomebody who's a doctor, and
just we were asking everybody wecould, and of course the
natural question comes back well, like what's the what's the
diagnosis?
And all we had was kind of avague high grade glioma, but
they're like, but where is itlocated?
And we didn't even, we weren'teven able to say in like medical
terms what it was.

(27:50):
So you know we asked the teamand they didn't give it to us,
which was very frustrating, andyou know we went there.
We're like, okay, can weactually like see the MRI scan
and understand what's going on?
And then we realized that shedidn't even have access to it
scan and understand what's goingon.

Speaker 5 (28:05):
And then we realized that she didn't even have access
to it.
So she showed the mri scan ofum.

Speaker 3 (28:08):
She showed the mri scan of the before final surgery
yeah, so so by this point itwas already you already have
many, many mris after eachsurgery and then they don't have
any of those.

Speaker 5 (28:18):
They have this, the scan, oh, before the surgery.
And then the radio radiologist.
He came over.
He said, okay, we'll give himthe classic radiotherapy.
I was like, why not a home talk?
He was like he doesn't deserveit.

Speaker 1 (28:33):
Not cost effective.

Speaker 5 (28:34):
That's what he said Because yeah, that's what I said
he doesn't deserve it becauseit's not cost effective.
I said I'm going to appeal that.
He was like yes, you can, butI'm on the board, so you know
you're going to get 100% not aselse, you're going to do it.

Speaker 3 (28:47):
Yeah, I mean it was very frustrating because they
gave us pamphlets at every stepof the way, and they gave us one
saying hey, here's protontherapy, which is, you know,
better for children, you know,less damaging everything else.
And you know, when we asked forit, we were basically laughed
out of the room.
And you know all the questionsthat we had.

(29:14):
Like none of them were takenseriously.
I mean, even to get thediagnosis, we had to send an
email to the team saying this iswhat we're going to tell
another medical team is thediagnosis.
If it's incorrect, please letus know, like by the end of the
day.
And finally they wrote back tous saying, yeah, that's right
and it's incorrect, please letus know, like by the end of the
day.
And finally they wrote back tous saying, yeah, that's right.
And that's how we ended upgetting the diagnosis.
And I think that was for us, Ithink, probably one of the
turning points where we realizedthat to kind of move things

(29:37):
forward and feel comfortablewith the care that he'd be
receiving, we needed to kind ofchallenge the status quo of what
we were saying, which wasobviously really uncomfortable
because neither Weiwei and I aredoctors, so you know all the
medical terminology, everythingelse.
You know we were askingquestions and you know going
back and trying to do as muchresearch as we could, but, you

(29:59):
know, not having the backgroundand this being completely new to
both of us, you know it washard and it was kind of
intimidating as well.
You know there were momentswhere we had a room full of six
doctors telling us that what wewere doing is wrong, and then we
would ask them questions whichwe had heard from other people
that we started to reach out toand started to realize like hey,
what about this or what aboutthat?

(30:20):
And then we kind of saw thatthey didn't have answers to what
we thought were kind of basicquestions.
And then that's what kind ofgot us on guard a little bit to
really just start seekinganswers elsewhere.

Speaker 1 (30:32):
Yeah, did you guys have friends that you were close
to that at this point, thatthat didn't know like physicians
or anybody close to you?

Speaker 5 (30:42):
This point, not at the final salon for's mom.
She's an oncologist.
She was doing research in RoyMarston, so that was it when she
reached out after I spoke toyou guys, you know, like in
Germany.
So, and then, because beforethere's no pathology results,

(31:03):
all we ask them, when we ask forsecond opinion, what they give
it to us is, you know, like awild type, and then glial,
hybrid, glial ma, grade four,wild type, that's all they give
it to us.
There's no paper, it'sliterally just typing.
Like I type it to them, I say,is this the diagnosis?
They say that yes, this is it,and then that's all.

(31:26):
There's no proper paper oranything.
So then we request to transferto another hospital which is
closer to his school, supposedto offer the best in the UK, and
then pretty much in Europe.
And then the doctor there,equally as the same as the one
before, it was like literallythey don't want to give us

(31:51):
anything.
And then finally we receive thepathology result.
That's when there's morequestions are coming.
The first one is they gave thegrade four, but it's everything.
It's like you read the finewriting that says you know, the
main tissue is in a process, sowe cannot really test it and
there's only a few things.
And then, like we test it andthen we give it with four, and

(32:14):
then the proliferation index wasone to two, which is really
really low.
And then which that's a lot ofalarm was like because I really
researched a lot on thisproliferation index why this
doesn't make any sense to me.
And then there was like a youknow, there's no cells dividing
it's, there's no like a mitosisand there's nothing.

(32:34):
So they don't know, you know.
And then I was like then whyyou gave it four?
They said it because it's dead,dead tissue.
I was like, okay, and then thesecond one, that's when they
find the fusion.
They said the fusion, but theynever encountered with this
fusion before.
So they said you know, it'sprobably contaminated, please do
not use it Like the ROS1,that's what they said.

Speaker 3 (32:58):
They said the sample is probably contaminated.
So while it was showing up theysaid ignore that because it's
probably a mistake.

Speaker 1 (33:09):
The ROS1.

Speaker 3 (33:09):
while it was showing up, they said ignore that
because it's probably a mistake.
Ross one.
So it was a ross one mutation,right, which is a.
I like to explain to ouraudience.
Yeah, because the challenge washe.
So he had three surgeries.
At each surgery they took asample and they tested those
samples and the first one waskind of like it's the worst
quality sample because there wasa lot of necrosis.
The second, second one was kindof the same.
And then the third one was kindof the best sample in terms of
like they had the most viabletissue that they were able to

(33:31):
test and get information from.
And it was that last samplewhere, you know, it's only when
we requested the reports throughthe hospital that we saw that
actually the grade had changedfrom you know, grade four to not
elsewhere classified.
And we kind of asked thequestion we're like, well, like

(33:51):
NEC, what does that actuallymean?
And you know, when we did ourresearch we said like, okay, it
means that they can't quite fitit into the category because it
doesn't meet all the criteria.
And we're like, okay, well,does that mean that it may not
be high grade or that it mightnot be grade four?
And when I brought this up tothe oncologist who was looking

(34:12):
after him, I was kind of flooredby her answer because she said,
well, we did three tests.
Two out of three said it's highgrade, so that's what it is.
And I'm like, yeah, but thefirst two samples, you
acknowledge, were like reallybad quality samples where you
couldn't really test it.
And then the last one wassupposed to be the best one, and
that's the one which says thismight be something different.
And so that was kind of scary,because that's when we kind of

(34:36):
got the really concern that,like you know, are they actually
going through things properlyand spending the time on it.
And that's when, you know, wewere starting to speak to other
people as well.
So we had gotten some pointedquestions from others in the
medical community who said youknow, well, you know, if I were
in your shoes, I would look atthis or I would ask about this.

Speaker 5 (34:57):
And then you know, did you result online?

Speaker 1 (35:02):
No, did you go online ?

Speaker 5 (35:16):
Like, wait, were you communicating with people online
that had similar diagnoses orwhat were you doing symptoms?
You know what they're doing.
So everybody's talking aboutdifferent things and what kind
of things they tried and youknow what kind of and I try to
focus on the positive part whatworked for people instead of you
know not worked.
And then that's as soon as Igot those results those not even

(35:36):
the third one, the first two Isent it to your ex-colleague and
then that's where she found outto the rose fusion.
And then, because I didn't evenpay attention, because I didn't
even know what that means, soshe mentioned, she said you
really that was the previousnonprofit that I worked for
before Cancer Help Desk, and sohow did you find that nonprofit?

(35:59):
I think I go through thisMosella Foundation.

Speaker 1 (36:03):
The Mosella Foundation.

Speaker 5 (36:06):
Because they give you the new diagnosis, what you
need to do, all those kind ofinformation.
And then there's anybody I justsend an email and whoever
responds, I respond to them.
Information.
And then there's, like any,anybody I just send an email.
Now, whoever respond, I respondto them.
Yeah so this one and and thenthat's why she mentioned to me.
She said, if this mutation isreally positive, positive and
then there is a very effectivedrug.

(36:27):
You know like you really needto test that.
So that's when I went back tothe doctors.
The doctors was um, you knowthey?
They told me it's probably justa false positive, they're not
going to test it because there'sno point.
Then the new hospital when wetalked to the radiologist, we
asked her the same thing.

(36:48):
She was shouting at me.
She was like how many times doI have to tell you they don't
last.
So there's no point.
That's what she said.

Speaker 3 (36:58):
Yeah, like we really kind of, and every time,
whenever we're asking for thingslike, hey, like we've been told
that if this thing which showedup on the report, this
potential mutation, could bereally important because there's
an FDA-approved drug whichtargets that specifically, which
is shown to be effective Right,an FDA approved drug which

(37:23):
targets that specifically, whichis shown to be effective, can
we get validation whether heactually has this or not?
And we were denied multipletimes in terms of doing more
testing and the kind of generalattitude to kind of what Wei was
saying before is just that,like we have all the information
we need, like we don't needanything else.
And even when we had startedreaching out to you know doctors
in you know the U?
S and elsewhere, um, one of thethings that we noticed right
away was that, like number one,they just had a very big

(37:43):
attitude towards collaborationand working with other people.
They said, hey, whatever theteam you're working with, like
let us know we're happy topartner with them and work and
share information.
Um, and when we kind of wentback to, uh, to our team in the
UK and kind of told them thatwe're like, hey, we've spoken to
these people who kind of knowabout this thing and they're
willing to partner.
We were told no, it's okay, wehave everything we need, it's

(38:04):
under control, so it's like sothere was just like, like, where
does that come from?

Speaker 1 (38:09):
Is that you know when ?
When I bring this story up orjust talk about other people
that I meet along the way,whether they're UK, india,
whatever, um, you know, peoplego.
Well, that's socializedmedicine for you, right?
And I'm like I don't know, Idon't, I don't know if it's that
or not, because we have,obviously, hospital systems in
here that only, you know, in theU S that only follows certain

(38:31):
protocols and they're not goingto do anything outside those
protocols.
So, you know, what is that?
I mean, is it just that theodds you know I hate saying odds
, but the odds aren't great herein this particular situation
and so therefore, they're notgoing to do anything?
Or is it, you know, is it aproduct of the system?

(38:51):
Is it like, what is it that, ifthey're not willing to
collaborate or know what else isout there?
I mean, at this point in time,you know, because of the
nonprofit that we had, we alsohad experienced, one year prior,
another child with the exactsame DNA gene fusion, which I'm
wearing his shirt today by theway, this is a little Reese's

(39:12):
shirt with his handprint on theback and I proudly wear it.
But he, you know, we, we, wehave this information, and so
how do they not accept that Likethat's?
That's very strange to me.

Speaker 3 (39:25):
It's a it's a really good question.
I mean, I've spent a lot oftime thinking about it and you
know I talked to I talked tosome nurses who had previously
worked in the UK and actuallywere in the U?
S and we asked them about theirexperience and one of the
things that they said was thatkind of the attitude in the
medical community there is veryhierarchical, so the doctor

(39:46):
knows what's best, and even ifyou're a nurse and you have a
comment of a question, it's kindof like.
I think she told us an exampleof one case where she was trying
to give the doctor someinformation about a patient who
she'd been spending a lot oftime with and the doctor
responded to her something tothe effect of if I want your
opinion, I'll ask for it, andthat was quite jarring.

(40:07):
But I think that the idea of thekind of the setup of the
medical system is a component ofthat, because that is something
that we kind of ran intoseveral times in the sense that
like, oh, we've already run thetest right.
So it kind of made it seem like,well, we've ticked that box and
there's, I think, um anunwillingness to try and go
outside the bounds of what'salready um approved or known,

(40:31):
and there's not really much um.
I don't want to say risk taking,but I just it's more of just
like trying to do more right.
And I think that, you know,compared to the UK, what we saw
in the US was that, whether it'sbecause of the setup of the
system or otherwise, they'realways kind of incentivized to
do more right.
It's like if you need to runanother test, it's like let's

(40:51):
keep testing until we have theanswer that we're looking for,
rather than well, I alreadyspent money testing at once, so
I don't really want to spend itagain.
And you know, that's kind of atheme that came up with us as
well.
When you know, in the mix ofother things that they were
saying about, why they didn'twant to go forward with, you
know, proton testing or protontherapy or something else, it

(41:12):
was kind of like well, you know,it's not cost effective.
It's like you or something else.
It was kind of like well youknow it's not cost effective.
It's like you know when it'syour child like that's, that's
the least of your concerns,right?
Like I don't.
I don't care how cost effectiveit is, like just do do whatever
you can.

Speaker 1 (41:23):
This is another one that that really drives me crazy
, and I hear this a lot in the US.
Well, your insurance doesn'tcover it, so therefore, right,
well, did anybody ask if youwere willing to pay for it out
of your pocket?
I mean, was that an option?
Is that an option there thatyou could say, well, we're going
to pay for whatever is requiredfor our child and I want it, so
therefore we're going to payfor it?
I mean, they won't even havethat conversation, right?

Speaker 3 (41:48):
No, I mean, that was part of the thing as well.
There was another couple thatwe had heard about in Australia
who had a different circumstance, but their health system is
similar to the UK and I thinkthat they wanted to go for this
therapy which their healthsystem didn't approve or wasn't

(42:12):
willing to pay for.
And then they went and did itthemselves and paid for it
themselves.
The therapy was successful andafterwards they kind of went
back and I think they brought alawsuit against the thing to
kind of show that like hey, wewere trying to go for this, and
I think they ended up beingreimbursed for that.

(42:32):
But it's just kind of oneexample.
I think that there is a big riskaversion to do anything other
than the standard of care whichyou know.
It's frustrating for us becausethey were very clear in terms
of saying that the standard ofcare, which is radiotherapy,
chemotherapy together, wasn'tthat effective.
But that was.
It was kind of like the youknow, when the only tool you

(42:55):
have is a hammer, everythinglooks like a nail.
It was kind of that sense,right, like it was the only
course of treatment that theyhad.
And when we asked them, likewell, what happens if that
doesn't work, it's like, oh well, then we'll do it again.
And then I think it's like inthe UK, you have to do it
something like three timesbefore other therapies would
become available.

Speaker 5 (43:12):
The thing that really bothered me it doesn't matter
If it's a brain tumor, that'swhat they give it to you.
If it's a golioma, that's whatthey give it to you.
So that's why when Fido wasbefore his radiotherapy because
he wanted to get the chemotogether.
So we had a call with thedoctor to go through the
procedure and then she only hadour first two pathology results.

(43:38):
And then I asked her.
I said oh, the T-mosotomai isgoing to be effective.
She said, oh, that depends onif he's methylated or not.
I need to see his report.
I said you haven't seen hisreport.
That was from the first report.
He's not methylated.
She was like, oh, that is notgoing to work.

(43:59):
That's what she said.
She didn't even look into thereport.
And then she was having the.
I had an appointment with usand I said do you know?
And then his grade changed andthen for the last, the third
report, she was like, oh, Ididn't.
I said you don't have thatreport.
She said no.
I said do you want me to emailto you?
She said yes, please.
Oh, wow.
I was like yeah, are youserious?

(44:21):
Like I need to email you thereport that is from the hospital
and you're the doctor who'staking care of my son, like
we're transferring to his careto you, and then this is how you
treat us yeah, that was like acommon theme, just like that.

Speaker 3 (44:36):
The lack of communication between the team,
which we came to realize afterseeing the contrast to them when
we came to the US, was just howwell the communication flowed
between all different members ofthe team.
So, like you know, as a resultof the pressure from the initial
tumor, it's impacted Philo'svision.

(44:58):
So, you know, as a result of thepressure from the initial tumor
, it's impacted Philo's vision.
So you know he sees aneuro-ophthalmologist, among
other things.
And one of the things that youknow kind of stood out for us
when we first came was that, youknow, even the ophthalmologist
was completely up to date withall of the things we've
discussed with our oncologist,to the point where we were like
wow, like we didn't expect youto kind of know and reference

(45:18):
all that stuff, but it justshowed that they were all
talking, they were all on thesame page, Um, and they were all
just very well coordinated.
And that's something which youknow, we realized afterwards has
such a big impact in terms ofthe overall quality of care,
because if every person thatyou're seeing for a specialty is
kind of like a disjointedconversation, you kind of miss
the ability to see the biggerpicture.

(45:39):
You're just looking atendocrinology versus vision
versus something else.
It's kind of like you'respeaking to all these different
people and you've got to kind ofstart from scratch to explain
what the situation is, and eventhen you get the sense that it
probably isn't fully understood.

Speaker 4 (45:55):
So how did that transition happen from care in
the UK to care in the US?

Speaker 5 (46:02):
So I think it's right .
You know like, I think I wasthinking of, you know like, the
treatment in the US when Fidowas still in the hospital.
So then I was thinking eitherGermany or US, because Fido's
sample was sent into Germany forsequencing Because the UK
refused to do it and then theydidn't want to give us the block

(46:23):
.

Speaker 1 (46:23):
Yeah, how did you?

Speaker 5 (46:24):
do that Because.

Speaker 1 (46:25):
I think that's interesting too, because people
wouldn't think I'm going to sendit somewhere else, you know,
and this is something thatpeople don't really understand
to do.
So how did you decide, like I'mgonna get the, the tumor tissue
, to be tested?
The block we call the block,it's a tumor block.

Speaker 5 (46:42):
um, yeah, no, I was saying to germany I mean that's,
that's a pretty big step youtook because, uh, I was, I had a
call with germany you know liketo talk about, uh, uh, you know
, like you, what's thedifference if I send it to them
so, and then there's two labs,so the one I use is CIGET, and
then you know, they also workwith Herrenberg, so which is

(47:04):
which everything is based on.
So they have a big, you know,archive for the brain tumors and
then they were they weretelling us what they use, you
know the technology use.
They dig deeper and wider, andthen they did a lot for UK.
So they gave me the feedback.
So for the UK patient it'squite, you know, it's always a

(47:26):
struggle to get a tumor samplethere, and then they always
delay, and then they found a lotof mistakes that the actress
missed and then they also got.
They also work with Duke, quitea lot, you know.

Speaker 1 (47:41):
So they have patients from Duke to go there From Duke
University, right From DukeUniversity in the US.

Speaker 5 (47:46):
Yeah, yeah, so basically, you know I had a lot
of conversation and then I askedthe by many questions they are
so patient.
They explained to us.
And then the genetic, the bymany questions they are so
patient, they explained to us.
And then then the, thegeneticist of the lab, and then
she had a conversation with usand and you know she was telling
us how those genes function andshe also really focused on the,
the most one.

(48:06):
She said we really need to testthat because that is, if it's a
drive, you know, and then youhave a solution.

Speaker 1 (48:13):
Yeah.

Speaker 5 (48:13):
So that's why you, why, like we said, okay, we're
going to go ahead and we'regoing to pay for ourselves.
Yeah, just out of curiositywhen you paid for that
yourselves.
What was the cost to you?
I think it was about 10 or11,000 euros.

Speaker 3 (48:31):
Yeah, so it wasn't a cheap test.
It was about 10,000 euros or11,000 euros.

Speaker 5 (48:36):
Yeah, something like that.

Speaker 1 (48:40):
And I think part of the challenge leading up to this
as well was that Just for ourUS listeners, what's that
conversion?

Speaker 3 (48:44):
Maybe like 12 or $13,000, I guess, right,
something around there, right?
I think leading up to that partof the challenge was we were
given a prognosis which wasright, you know, very bad, and
so we felt like we were under atime crunch which, strangely,
wasn't really reflected in theurgency of the team that we were

(49:06):
working with in the UK.
I think from our leadoncologist to from our first
meeting to the second meeting,it was like 120 days, which just
anyway, yeah.

Speaker 1 (49:19):
And just also for our audience.
I just want to mention thatthat type of testing here in the
US is more affordable, and sothere's ways of getting that
testing, but when and I thinkwhat we talked about when life
is in your hands and you've gotto craft survival, literally,
that you do what you've got todo.

Speaker 4 (49:40):
So you take the information from that report,
from that pathology, and youshare it with other doctors,
other teams?
Has that been the US?

Speaker 3 (49:49):
We did yeah, so you had a ROS1, though.

Speaker 1 (49:52):
They found ROS1 also right.

Speaker 3 (49:54):
They found ROS1 also right, so they were able to
confirm it and our team in theUS got in contact with them
directly and they had their ownteam evaluate the raw data as
well, so that they could feelconfident about it, but I think
that, leading up to this, one ofthe reasons we chose that lab
in Germany was because they alsohave a connection with another

(50:16):
organization which does kind oflike targeted immunotherapies.
And I think, you know, given theprognosis that we had and not
really knowing what our optionswere, we were kind of in a
position where we were trying topursue multiple different
options at the same time, notknowing which one we would
ultimately need to go for,because we didn't know what the
data would say.
But we knew that we couldn'treally lose time on any of those

(50:39):
options.
So we kind of had to pursuemultiple options at the same
time, right up to the pointwhere we're kind of like, you
know booking appointments andyou know kind of making plans
contingent upon us gettinginformation, but we didn't
really know what we're doing.
So it was kind of a difficultperiod because it's not like the

(50:59):
answer wasn't clear.
You know, we spoke to lots ofdifferent people.
We had lots of conflictingadvice in terms of what it could
be, what it might not be, whichalso has an impact on what
potential therapies could work.

Speaker 5 (51:24):
So.
But we knew that getting kindof better and clearer data in
terms of what we're actuallydealing with was going to be key
to whatever stuff we were goingto take next.
And that's kind of what led usdown that path.
And also you know the timing,because we know when Fido's
story, when she was three, theyfound the brain tumor.
She was like an ET, something Iforgot the name In burial,
something is also like a reallybad one, a 3-4.

(51:49):
So same team treated her backhome and treated Fido so it's
the same team.
And then they told the fatherthere's the only option we can
we can do is to radiate herwhole brain and spine and
there's nothing else we can dofor her.
And then six months and she's100, there's no chance.
Six months that's what theygive it to the parents.
So the parents went home.

(52:11):
They don't want to radiate herwhole head and spine when she
was three.
And then so they decided withintwo weeks.
So then they went to SloanKettering, so they just moved
the whole house to New Yorkbecause they had twin girls.
And then, you know, after likea year and a half treatment in
US and then finally they wentback home and then the girl

(52:33):
she's uh, she's turning 11 right.
Wow, she's fine so um fullyfunctioning.
She called.
He called me right away and hewas crying on the on the phone
he was like it's just anightmare all over again, like
he.
He knows what they told him andthen you know exactly what they
told me.
So so he said you know there isa hope, so you know like a.

(52:54):
And then you know exactly whatthey told me.
So he said you know there ishope, so you know like.
And then he also put me incontact with his old contact.
He said you know, in theinterest it's always.
He said, just don't wait forthem, you just have to go ahead
and do your own thing.
And then you know, reach out tous as much as you can, you know
.

Speaker 3 (53:16):
So that's why we are, you know, we're trying to reach
pretty much everyone.
Yeah, that was a big turningpoint for us because this was
somebody who, again, we had noidea previously.
But it was a very similarsituation where, again, I think
most people, I mean I certainlyfall into this bucket.
If a doctor tells you something, you kind of just accept it
because you think, well,obviously they know what they're
doing, and most of them do, butthat doesn't mean that they

(53:38):
can't get it wrong sometimes orthat maybe they're working up
wrong.
And that was kind of a bigrealization for us.
But, you know, hearing thispositive success story for us
was a major turning pointbecause that kind of gave us the
confidence, just the, theenergy and the drive to be able
to keep pushing on in the faceof all these challenges, knowing

(53:59):
that other people have beentold the same thing and then
they got through it.
And that was a huge, justmotivator for us to be able to
see that that hope is possibleand that it was possible for us
as well.
And that's one of the reasonswhy we've tried to, you know,
share a little bit about ourstory, to let other people know
that you know, even if you're inthat situation and it feels
hopeless and you know theinformation is scary and it

(54:22):
doesn't look good, um, thatdoesn't mean that there's
nothing you can do and thatdoesn't mean that you know
there's um there's nothing elsethat can be done, because we've
seen that there is so now we'reabout uh what?

Speaker 4 (54:33):
12 or 16 weeks post surgery and you're starting to
get all the information andyou've shared it with the US and
it was after the surgery therewas what was the treatment after
the surgery?

Speaker 3 (54:46):
There was.
It was what they call standardof care.

Speaker 4 (54:50):
So in the.

Speaker 3 (54:51):
UK.
In the UK was radiotherapycombined with chemotherapy.

Speaker 4 (54:57):
So, he did undergo radiotherapy.
Oh no, no, no, he didn't.

Speaker 3 (55:03):
He did.
Yes, we were told that that wasbasically the only option and
that was frustrating for us aswell, because at that point we
still didn't have the clarity onthe diagnosis.
You know, the genetic testingthat we had commissioned took
time to complete and you know,everything was presented with

(55:24):
such an urgency behind it thatwe were told like hey, if you
don't do this then, like you'rebasically missing your only
chance.
So, you know, reluctantly, wewent forward with it, but you
know we had went forward with it, but, um, you know we had our
doubts throughout the way aswell.

Speaker 5 (55:41):
Um, it's like, you know, we, we don't know what's
going to be.
You know it might work, itmight not.
So you're like thinking, andthen that's when the time we
reach out to the other doctors.
You know we reached out toanother surgeon from Australia
and then he also said, and youknow, when I talked to him about
the, the, the prophylicationindex, and then you know he said

(56:05):
you know, it's just, it justdoesn't make any sense.
And he did like over 10,000surgeries for kids.
And then you know, like grow, um, grow ups, and then he was
saying he, sometimes he said youknow, when it's that big, and
you know, I always questionbecause sometimes you know, like
, like you know, they will causeproblem long like way before

(56:29):
before they even notice.
So for him he think it's slowgrowing, and then that's, you
know which is.
You know very.
Also, you know very fresh point.
You know like a, like a pointof view.
So I was thinking because I hada doubt and he said, you know,
because if that thing is really,really aggressive, you know

(56:50):
it's not going, it's going, youknow, you're going to see like
really dramatic change and Ithink in a very short period of
time, if you missed it for solong.
You know like, and then thatcan be that, that big size.
And then he said you know like,there, like I, you know, I will
ask for more and all thenecrotic, all the necrosis too,
is a good indicator of that.

Speaker 1 (57:10):
Um, with all the dead tissue, essentially, and and um
, I know Matt's tumor hadnecrosis, um, but probably was
there for a while before hefinally had a symptom because
the tumor was out, growing itsblood supply, but probably over
a period of time once he finallyhad like the pain that he had.

Speaker 4 (57:29):
But, um, yeah, so did Philo ever receive treatment in
the U.

Speaker 1 (57:34):
That's where he's now right.

Speaker 4 (57:36):
So you make it to the so did you stop the
radiotherapy and the chemo inthe UK?

Speaker 3 (57:44):
So yes, so we finished.
So his course basicallyfinished at kind of the
beginning of December, althoughas we were nearing that,
December 8th.
December 8th.

Speaker 2 (57:56):
I remember better than the doctors.

Speaker 3 (57:58):
As we were going through the process, though, we
were already kind of in aposition where we had received
enough conflicting informationwe had saw a number of red flags
kind of throughout the processthat we were already kind of
determined that we needed to dosomething else, because if the
only option was just tobasically repeat that standard

(58:19):
of care over and over again, weknew that it wasn't going to end
well.
So at that point we had alreadykind of spoken to some teams in
the US and we had found a teamwhich, again, having confirmed
the genetic results and we knewthat there was a therapy that
was available, we brought thisup to our team in the UK and

(58:39):
even knowing that their stillnext course of action was like
oh well, let's go into surgeryagain, which didn't really make
sense for us because the wholeidea was that if you have this
really targeted drug that cantarget exactly what you have,
why not try that first beforegoing into a surgery again?
So we kind of made up our mindto come over to the US, which I

(59:05):
think in terms of the whole,from like beginning of really
thinking about it to making thedecision and putting into action
, it was probably about two orthree weeks.
Yeah, and you know we've beenin the UK for, you know, for 15
years.
So we, you know, had to pack upour house and then, you know,
change schools and just doeverything.
It was a lot of logistics tokind of make that happen, but it

(59:27):
was also probably one of theeasiest decisions we had made as
well, because, you know, inthat kind of situation
everything else just becomes adetail and you're just looking
like what you're trying toaccomplish, which is, um, to
just have the best chancepossible, um, and that's that's
kind of what led us here.
So I mean, we would have, wewould have gone anywhere.

Speaker 1 (59:47):
I have a question for you, wei um, since you uh
described finding the scientistsin the nonprofit.
You know I try to help peopleunderstand why you know one, why
we have this nonprofit and whywe have oncology nurses and PhD
scientists.
I think that people don'tunderstand, like why would you
have a PhD scientist involved?

(01:00:07):
And we talked, we talked aboutthis ROS1 gene alteration.
Matt actually has two, had twogenomic alterations called BRAF
and MEK M-E-K that he gottargeted therapies for as well.
And so we say, as a nonprofit,you know the work that we do
that a PhD really helps peopleunderstand the science, the

(01:00:29):
biology of, like, how thesedrugs work and the biology of
what's going on with the cancer.
So, just from your experience,I would love for you to maybe
quickly share, um, you know,like, how that became important
for you in this decision processbecause I think when I was
talking to them, like you know,they made a very.

Speaker 5 (01:00:48):
Then they made everything sounds really simple,
like for me to understand,because all those terms, I don't
understand what those things do.
So when I ask them all thosespecific questions, they can
always answer me, said okay, andyou know this is what it means,
so the possibility.
And then they gave me theresearch paper to back back it
up for what you're saying.

(01:01:10):
And also, you know they'realways on top of you know what's
new.
You know, like, what's the newtechnology, what's a new drug
coming?
You know I they're always ontop of you know what's new.
You know, like, what's the newtechnology, what's a new drug
coming, you know like.
And then they always attend tothose symposiums, like or the
events, for you know like, forwhatever their study, like for
the gluten tumors, or for youknow, like the gene alteration,

(01:01:30):
so they're very on top of it,and then so they're very updated
.
They're very on top of it andthen so they're very updated.
So when they share informationand then sometimes they will
share with me, like I said, oh,there's something coming up,
maybe you should look at that.
You know you should look at thatand then, or this doctor is,
you know, is going to have this,you know trial is coming up.
Maybe you know it's worth it tohave a conversation with them.

(01:01:51):
So they're're, you know, likethey're preparing you very, yeah
, very informative.

Speaker 3 (01:02:00):
and also, you know they can translate something you
know very scientific and like alike a form, like a foreign
language, to the language youunderstand, and then you can
really understand this is whatyou need to do, and then you can
make up your plan, say, okay,this, okay, that's what I need
to do for the next step, yeah soI think it's a very important
for you know, for the realscientists you know, and to get
involved, because theresearchers said you know, like

(01:02:22):
that's what they do, that's whatyou're good at yeah, I think
that translating it intolanguage that we could
understand was really importantwhen we were still dealing with
our existing team, to be able torelay those questions in a way
that we actually knew what wewere asking.
It's not like we're just, youknow, reciting something that we
don't understand what it means,but, like you know, even though
we're obviously not at the samelevel as them, they explain it

(01:02:45):
in such a way that's easy tounderstand so that you know we
can ask those questions in turn,and that definitely helped us
realize, you know, that you knowwhether our existing team would
be able to kind of go throughand do the things that we
thought we needed to do, orwhether we needed to make a
change.

Speaker 1 (01:03:02):
Yeah, yeah, so, as I tell the coaching is is, I think
, invaluable.
And the guidance and that'salso what we talk a lot about is
how do you form an action planif you don't know what to ask
for or how to talk to doctorsthat may not even have the same
information?
I've personally also beenthrough that process with my

(01:03:22):
uncle, where the doctor actuallybasically slammed the door in
my face and told me to get outof her office that I didn't know
what I was talking aboutbecause I actually had more
education and understandingabout those genomic alterations
at that point in time than shedid.
So I've been there also throughthat journey and understand
what can happen when you maybepotentially offend the care team

(01:03:43):
.
So that's amazing and I knowthat you're also now at UCSF.
Philo not too long ago had abirthday right uh a little while
, a little while back.

Speaker 3 (01:03:57):
Yeah, um, he actually had uh another surgery just
around thanksgiving as well,which was mostly because there
was, um, I think, like some,some scar tissue from the
previous surgeries that werecausing a bit of uh blockage,
but um, that went off without ahitch.
Um, he was back in school and aweek and a half later, which

(01:04:18):
was pretty incredible yeah, Isaw he was on the monkey bars
too.
Huh, philo you were playing onthe monkey bars.
Yeah, from from from eight,eight days, from from having
surgery to to being back inschool, which was, which was
pretty incredible, but Is hestill?

Speaker 4 (01:04:32):
under care.
Sorry, is he still under care?
He is Taking medication, yeah.

Speaker 3 (01:04:39):
The targeted yeah.
So when we came kind of lastyear, we started on a targeted
therapy.

Speaker 4 (01:04:46):
What's it?

Speaker 3 (01:04:46):
called yeah, it's called Roslitrex or Intrectinib
and that targets the Ros1 fusion.
I think it was originallydesigned for lung cancer, but
they've also seen that it has abeneficial effect on brain
tumors as well.
And you know from, I think, ourfirst MRI check after being on

(01:05:10):
the medicine for I think, likethree months, we saw that
actually there because he stillhad some residual tumor which
wasn't able to be resected bysurgery and out of that that was
there before, we saw that ithad shrunk about 50%, which was
a huge moment for us to be ableto see that everything that we

(01:05:30):
had kind of gone through, all ofthe kind of obstacles to get
here, was for the right reason.
And that was hugely validatingfor us to see, and you know, in
terms of, you know, impact tohim, I mean, we haven't really
seen any side effects.
He just takes a couple of pillsa day and that's pretty much it

(01:05:51):
, and then everything else ispretty much normal.
We check him out on lots ofother tests as well, but that
was huge for us to see that, youknow, this targeted therapy was
working, which is yeah, it'samazing.

Speaker 1 (01:06:02):
I think we're gonna see what we are seeing it, where
you're treating yeah, you'retreating the alterations.
We're using immunotherapy toboost the immune system.
You know that this is really.
I feel like we have to stronglyencourage people to start
asking right, start asking forwhat else?
Is out there for DNA testing.
You know more than 60% ofpatients still aren't currently

(01:06:26):
being properly tested.
You know that you've got to ask, and so this is a really
powerful podcast and you knowtime with you guys to just hear
your journey.

Speaker 4 (01:06:35):
I've got to give it to Wei and Jeremy.
Your research and dedication tocrafting survival is amazing.

Speaker 1 (01:06:44):
Yeah, that's quite the journey, especially to pick
up your whole family and moveacross just to make sure that
everything works.
And I also hear that you have areally, really amazing healthy
diet.
You have a smoothie every day.

Speaker 4 (01:07:04):
Like a hundred ingredients in it.

Speaker 1 (01:07:07):
Do you know what's in it?

Speaker 2 (01:07:08):
yeah, and I have this , this drink called a brain shot
, which is lemon lime withcilantro and asparagus, and
apple.

Speaker 1 (01:07:27):
Wow yeah, we're going to have to try that at home.
We just got a juicer.
I'm going to have to try thisbrain shock.
We'll call it the phylo brainshock.

Speaker 3 (01:07:36):
We did a lot of, I mean, diet.
Diet was a big part of it forus as well, even when he was in
the hospital.
Um, we would go home every dayand like, actually make him a
really healthy meal and bring itto him every day.
Um, as which?

Speaker 2 (01:07:51):
normally she would like be like she would bring two
meals and then like one fordinner, one for lunch yes like I
would tell her what to make andthen she would make it the next
day and she would make a dinnerand lunch and I got to choose

(01:08:12):
which one to eat for lunch,which one to eat for dinner and
we will bring you the smoothies.

Speaker 3 (01:08:18):
Yeah, yeah, yeah yeah , I think, like with the food, I
think you know, while we werestill in the hospital and we
were looking at all the otheroptions, uh, like you're saying
before, where we didn't knowwhat the next course was, uh, we
saw a lot of stuff around dietand it was kind of a little bit
hard to to make out whether,like that was impactful or not.
When we asked our team um inthe uk, they it's also said like

(01:08:42):
it's too much effort and itdoesn't really make a difference
.

Speaker 1 (01:08:45):
So, um, they said, if he wants to eat a big mac and a
coke.

Speaker 3 (01:08:50):
Give him a big mac and a coke, um, and no, you know
not the answer.
We had previously knownsomebody who had also received a
very tough diagnosis and hadcompletely changed their diet
without really doing anythingelse.

Speaker 5 (01:09:05):
He only changed his diet.
He had his grape picked up andeverything, because they told
him like six months, so he hadeverything prepared, his well,
everything prepared, and then hejust changed his diet.
I remember I went to there, Iwent to his uh to visit him and
I just remember I was alwayshungry because he had just a

(01:09:27):
fruit for lunch and at dinner hejust had like a salad and then
a very tiny, like a sometimespasta and like a very small
portion, and then all the sauce,everything he made from scratch
and then he'd grow his ownvegetables.

Speaker 3 (01:09:41):
It's like you know, it was like a 20 years after the
doctor said, you know, like sixmonths, that he was like, yeah,
I'm fine and I feel okay andthere's nothing going on,
nothing wrong with me yeah, so Ithink, like the experience of
just knowing him, um, and justsome other things, it was one of
those things where you knowwhen, with the prognosis that we

(01:10:01):
were given and the options thatwere on the table, we kind of
took the mindset that anythingthat we can do to help is worth
trying, even if it's a 2% or,you know, a 3% increase in value
of everything Zero point, zero,zero, zero, zero, zero, zero,
zero, zero, one percent.

Speaker 2 (01:10:21):
Yeah, we'll try it 0.00000001%.

Speaker 3 (01:10:21):
Yeah, we'll try it.
We will try it.
So we were literally open totrying everything, and so we did
the diet changes as well, whichwas a little bit tough in the
beginning.
You know, trying to get aneight-year-old to drink celery
juice is not the easiest thing.

Speaker 2 (01:10:35):
At first it was very hard.
Yeah, at first it was very hard.

Speaker 1 (01:10:38):
Yeah, but you're strong.

Speaker 2 (01:10:53):
I used to take half of a jar, but in the hospital
when I had it, my mom wouldencourage me to.
If I had the whole thing, Iwould get a game or something.

Speaker 1 (01:11:09):
I heard she was, she was bribing you with money.

Speaker 5 (01:11:14):
Every day.
You have to charge us.

Speaker 3 (01:11:15):
no, we have to pay you for your drink, oh right, we
might have resorted to briberyin this case, but I mean
throughout his whole course oftreatment in terms of radio and
chemotherapy.
The team that we're doing wasactually quite surprised at how
well he was doing so.
Initially they told us he wouldfeel so sick that he wouldn't

(01:11:36):
be able to go to school.
He'd probably just be stayingin bed all day, and he he kind
of showed exactly the opposite.
We would do our you knowradiotherapy and chemotherapy in
the morning, and then he wouldgo to school and he would spend
the day and yeah, he was feelinghis body.

Speaker 1 (01:11:54):
He was yeah he was probably at 80 or 90 percent.
The nutrition is yeah,nutrition is critical.
I don't care what anybody says.
I think it is true.
You are what you eat, andhaving anti-inflammatory,
nutrient-dense food is vital towhether you're sick or not or to
prevent illness.
But especially when you are illand I do see a lot of people

(01:12:18):
eating whatever they want,unfortunately I do see a lot on
the social media channels andseeing parents feed their kids
lots of sugar as their bribery,as an example, and it's very
heartbreaking because, yeah, sohow about organic?

Speaker 4 (01:12:33):
Is organic vegetables and fruits important or not?

Speaker 3 (01:12:37):
so much, I think whenever possible we try to go
with the organic stuff and thenone of the other things that
we're looking at, so in thesmoothie, takes in the morning.
Uh, I mean we would be able totell you all the the things in
it, but you know there's alsolike like lion's mane, mushrooms
and um, yeah, I thought, maybewe should maybe, maybe we should

(01:13:00):
get your recipe way and sharethat with people thank you, guys
, for joining us today thank you, so awesome thanks for sharing

Speaker 1 (01:13:06):
thanks for sharing your story.
You're welcome and yourcourageous your courageous uh
journey uh is is no small task,is probably one of the most
difficult, I would think, thatanybody has to face, and so I'm
sure there are so many peopleout there dealing with something
similar, and so if there wasone thing, a way that you would

(01:13:27):
like to share with other peoplewhether it be about hope or
about seeking, you know, answers, whatever that is- Any key
takeaway.
Yeah, any key takeaways.
What would you want to sharewith other people, maybe dealing
with something similar?
You know answers, whatever thatis Any key takeaway.
Yeah, any key takeaways.
What would you want to sharewith other people, maybe dealing
with something similar?

Speaker 5 (01:13:41):
You know, trust your gut, just keep going and never
give up.
And then you know like, and ofcourse like.

Speaker 4 (01:13:49):
Fighter mentality.

Speaker 5 (01:13:50):
And then the time is really important.
So you know, get all youroptions as soon as you can Like,
don't wait.

Speaker 1 (01:14:00):
Rely on other people to help you find those options
if you don't know right if it'soverwhelming, yeah yeah, well,
thank you guys.
Yeah, this was awesome.
Jeremy, it was great to meetyou.
Uh, we look forward to meetingyou guys in person.
Uh, it looks like we will beholding an event for cancer help
desk um in fremont area so nottoo far far from you in April,
so I'll keep you posted on that.

Speaker 2 (01:14:22):
It's a bunch of high school volunteers yeah, we'll
celebrate your cat's birthday.

Speaker 1 (01:14:31):
Yeah, it'll be a lot of fun.
So thank you guys for fortaking this time and for
spending it with Matt and I andtalking about how you crafted
survival.

Speaker 3 (01:14:42):
I appreciate it.
I think you know sometimes youdon't know how something's going
to work out.
But I think to Wade's point,just don't give up, keep going,
even if the path isn't clear infront of you.
Just keep taking one step at atime.
And I think, if I look back inhindsight, we realize that a lot
of the steps that we identifiedas the right one were
definitely not clear at the timeand there was probably for

(01:15:04):
everything that brought us astep forward.
There was probably five thingsthat took us a step backwards.
But just keep going.
You know, focus on what'simportant and that there's
always hope.

Speaker 1 (01:15:15):
Yeah, fantastic.
And now you've got a beautifulboy who's playing the piano,
karate chopping, swimming,tennis, doing all those things.
So keep going, Philo.
You're amazing and we can'twait to see you in person.

Speaker 5 (01:15:30):
Thank you.

Speaker 4 (01:15:35):
Remember, no matter the challenge, there are
extraordinary people out thereovercoming the unimaginable.

Speaker 1 (01:15:41):
Their journeys remind us that grit and hope are
powerful join us next time as wecontinue to explore the lives
of those who face life's biggestchallenges head on until then,
stay strong, stay hopeful andkeep crafting your own survival
tune in weekly and follow us oninstagram x tick tock and
facebook.

Speaker 4 (01:16:00):
This is crafting survival.

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