And was it good
to be able to talk to your parents?

I think, it means it’s like yes they had a big influence on my
decision and they have the right to decide for me but they didn’t which I think
was really good.

You obviously
appreciated that?

Yes I definitely appreciated that.

Even though if
you’re still young relatively?

Yes I was ten, wait no, was I even ten, no I might have been nine,
yes no, yes I was nearly ten, I was still nine. it’s a big decision.

And how did you
sort of overcome the differences of opinion with your parents, how did you
overcome that?

They basically said here’s my point of view and here’s my point of
view and we’ll let you make the decision. It was like we sort of debated it out
but they did just say you make the decision we don’t mind either way.

And who did, when
you told them how did they feel?

I think they were okay about it I think they understood the
reasons, and they just respected that I was mature enough to make that decision
myself.

And once you’d
made that decision and you realised then that you wasn’t
going into the trial that you were just going to have the statutory thing that
was going to be the best that you were going to get anyway, how did that feel afterwards?

I mean it was a reassurance to know that I was having it all and
having it once. It was almost a security blanket knowing that yes I’m having
loads but it’s going to happen in the future. But sods law now it’s only one
block and I had so many complications in block two that I wouldn’t say I regret
it, I don’t regret it not one bit but I think now I look back I might have been
better going into the trial. But what’s done is done and as long as you don’t
regret it it’s fine.

I wouldn’t
say there is any regret I would say that if I did it again I would do it
differently but I don’t regret doing the second block. I mean now that I know
that they only do one block I would have chosen differently if I had known that
information but I don’t regret it no. Because I did what I thought was best in
the situation I was in.

I was diagnosed with acute lymphoblastic leukaemia on the 21
August 2007, yes. And I mean as soon as I was diagnosed my parents were given
these papers to sign saying that they are willing to consider taking part in a
trial. I didn’t know anything about it at the time, so that’s basically when my
parents found out about it. And I found out about it when I was just about to
start my intensification blocks, so there’s two intensification blocks because.

What are those
what’s intensification?

it’s where, so basically the treatment is set out that you have,
you have sort of chemo every week for quite a while and then you have a bit of
a break and then you go back on and then I think about a quarter of a way into
your treatment you have two, I think it’s seven or nine neat blocks where it’s
a lot of chemo like you’ll be on weekly chemo, daily chemo then you’ll be on
six hour infusion chemo. So it’s a lot of chemo so that’s the main thing that
kills everything and basically the rest of the treatment after that is just to
prevent it coming back. So the study they were actually doing was because in
Europe they don’t actually do two blocks they do one, so they were running a
study where you were randomised, if you said yes, you were randomised to either
have one block or two.

Okay.

I, well yes, I decided against going in the trial. My dad thought
I should go in the trial but the way I saw it and the way my mum saw it is that
if I have two blocks it’s less chance of it coming back, it’s basically having
an extra nine weeks intense chemo or doing it for years later on, basically. I
didn’t get that much information on the trial, I went, because I was quite
mature as it was but once you get, you get an illness you sort of mature
straight away. So I pretty much read my parents information with a bit of help
but I didn’t really, as far as I remember I didn’t get any information.

Oh didn’t you?

I don’t really remember.

So it was your parents?

My parents got the information as soon as I was diagnosed and they
were told to read it which I think was a bit unfair. But then when, I mean it
was more my consultant explained it to me and my parents explained it to me and
what was at risk and what they were trying to do and then from that my parents
and I just sat down and discussed it and we made a decision, basically.

My consultant discussed it with me, so he gave me like quite a
while before my block and then like every time, we’d sort of discuss it every
time I went to see him and then I think we just sort of came to the conclusion.
And I think it was really good my parents, because my parents let me decide,
they didn’t see it as it was their decision not mine. They realised that I was
mature enough and it was my life I was playing with and that I should be able
to make that decision.

Do you think
that’s important as well?

Yes I mean parents as well as doctors have to understand that when
a child gets a serious illness they’re not children anymore. they’re almost
adults in the way they think and the way they do things. And they have to
understand that it’s their lives that they’re playing with not their parents,
not theirs but the child’s life and they have to be able to make the final call
no matter what age. It should be their decision, if they’re old enough to
understand then why should they not be allowed to make the decision. I agree
with things like consent, a parent to consent but I think that children should
also have to give consent as well.

And just going
back to the trial because I think you, you know you made a big decision it must
have been really hard at the time for you, did it take you a long time to make
that?

Yes it did, it definitely did it was one of those things were you
wouldn’t sleep at night thinking about it. It was one of those things that just
kept ticking over in my head for about three weeks.

And how did you
cope with that, with school and things like that?

I was pretty much ill and I wasn’t really in school so, I was
lying on the sofa for most of the time.

Was you?

So that was sort of like a thing then, I wouldn’t say I was, it
was in the back of my mind all the time but I did give it a lot of thought.
Because it is a big decision and I had to make.

Just explain to
me, you know, your, again why you decided you didn’t want to take part?

I didn’t want to take part because I saw it as two blocks now of
intense chemo now or what happens if fifteen years down the line I get it again
and then I will regret not having that second block because obviously it was
the wrong decision. So it’s like you do it now, you do it once and it won’t
come back, most likely, it won’t come back or you do a bit now and you might
end up, there’s more chance of having to have it later on.

So is that what the two blocks mean?

No it’s not
exactly what it means but that’s, they’re saying that because in the,
they didn’t understand whether like if you have one block there’s more risk of
it coming back, that was why they were doing the trial. I think that’s just how
I interpreted it and I think, my mum did influence quite, influence quite a bit
my decision. But I sort of understood what she was saying more than the logic
behind my dad saying go into the trial.

So your dad
wanted you to?

My dad wanted me to go in the trial and my mum wanted me to have
two blocks but they let me make the final decision and they basically said
we’re happy either way but you have to understand that this is a life changing
decision that is basically kind of decide what happens in the future. Either
way we will support you.

How did you make
that decision?

I just sat with my parents and we talked about it one Saturday, I
think for a like a few weeks the topic just kept coming up like briefly and
then like one day I said right I know what I want to do.

What was the, you
know the real reason for not wanting?

The real reason for not going into the trial was it was loads of
chemo now or more when I’m older, to put it in a sentence. it’s do it properly
now or take the risk of getting it years along the line when I was full steam
ahead with my life, I’m somewhere I want to be and then there’s this bomb shell
being thrown once again.

Do you know the result of the?

Yes, they’re
doing one block now.

they’re doing one block?

they’re doing
one block now because, I was quite, to be honest I was surprised that they
actually did the trial because they, this is what they do in Europe and America
already, that way Europe is quite ahead in research when it comes to cancer. So
now they’ve changed to one block across the country not the country, region or
whatever. You get what I mean.

That’s interesting really isn’t it?

Yes.

So in an end…

But I suppose
they had to prove it otherwise they would be like; they would have no reason to
change the trial because from different nationalities react differently to
drugs. Different ethnic backgrounds, your DNA is very different.

Yes and age.

Exactly.

So just, did that reassure you when you heard that,
when you found that out just doing the one block?

I mean for
patients now it’s very good because at the end of the day it’s less suffering.
it’s less chemo and its less toxins and it’s less suffering. So yes I mean
that’s a lot better.

If I had to
define clinical trial I would say it is a way that doctors test new drugs or
new protocols etc by picking patients who are in the correct age range. I
wouldn’t say taking a risk with their life but taking a risk to see if this new
drug works and yes basically. So testing a new drug on a group of patients in
the correct age range in a controlled way. Is that about right?

No that’s fine, it’s how you.

it’s really
hard to define it though because you sort of know what it means, you’ve been
told so many times but when you try and say it yourself it’s really difficult.

I was
diagnosed with acute lymphoblastic leukaemia on the 21 August 2007, yes and I
mean as soon as I was diagnosed my parents were given these papers to sign
saying that they are willing to consider taking part in a trial. I didn’t know
anything about it at the time, so that’s basically when my parents found out
about it. And I found out about it when I was just about to start my
intensification blocks, so there’s two intensification blocks because…

What are those what’s intensification?

it’s where so
basically the treatment is set out that you have, you have sort of chemo every
week for quite a while and then you have a bit of a break and then you go back
on and then I think about a quarter of a way into your treatment you have two,
I think it’s seven or nine neat blocks where it’s a lot of chemo like you’ll be
on weekly chemo, daily chemo then you’ll be on six hour infusion chemo. So it’s
a lot of chemo so that’s the main thing that kills everything and basically the
rest of the treatment after that is just to prevent it coming back. So the
study they were actually doing was because in Europe they don’t actually do two
blocks they do one, so they were running a study were you were randomised, if
you said yes, you were randomised to either have one block or two. I, well yes,
I decided against going in the trial. My dad thought I should go in the trial
but the way I saw it and the way my mum saw it is that if I have two blocks
it’s less chance of it coming back, it’s basically having an extra nine weeks
intense chemo or doing it for years later on, basically. I didn’t get that much
information on the trial, I went, because I was quite mature as it was but once
you get, you get an illness you sort of mature straight away. So I pretty much
read my parents information with a bit of help but I didn’t really, as far as I
remember I didn’t get any information.

Oh didn’t you?

I don’t really remember.

So it was your parents?

My parents
got the information as soon as I was diagnosed and they were told to read it
which I think was a bit unfair. But then when, I mean it was more my consultant
explained it to me and my parents explained it to me and what was at risk and
what they were trying to do and then from that my parents and I just sat down
and discussed it and we made a decision, basically.

So you say you don’t remember having any
information that was given for you?

I don’t remember I might have done it might be worth asking my mum
that one because I remember when I was first diagnosed they gave me these books
like John had leukaemia and what leukaemia was but I don’t remember receiving
any information about the trial.

Would you have
liked to have some information?

Yes I would have. I might have done but I don’t remember, I’ve
blocked out quite a bit of that, I wouldn’t say I’ve blocked out but I don’t
remember it all, if you know what I mean.

Well it’s a lot
to take in isn’t it?

Yes definitely.

I mean when they
approached you to take part in the trial did they actually approach, was it
your mum that they first spoke to or was it to you?

My parents, I didn’t know anything about it until my consultant
spoke to me about it, I didn’t know a thing.

But were you in
the room with them at the time?

No.

No.

They took my parents to one side and asked them.

Okay and then
your parents, who told you first?

My consultant.

Right, so he saw
you after?

My consultant discussed it with me, so he gave me like quite a
while before my block and then like every time, we’d sort of discuss it every
time I went to see him and then I think we just sort of came to the conclusion.
And I think it was really good my parents, because my parents let me decide,
they didn’t see it as it was their decision not mine. They realised that I was
mature enough and it was my life I was playing with and that I should be able
to make that decision.

Do you think
that’s important as well?

Yes I mean parents as well as doctors have to understand that when
a child gets a serious illness they’re not children anymore. they’re almost
adults in the way they think and the way they do things. And they have to
understand that it’s their lives that they’re playing with not their parents,
not theirs but the child’s life and they have to be able to make the final call
no matter what age. It should be their decision, if they’re old enough to
understand then why should they not be allowed to make the decision. I agree
with things like consent, a parent to consent but I think that children should
also have to give consent as well.

My consultant
discussed it with me, so he gave me like quite a while before my block and then
like every time, we’d sort of discuss it every time I went to see him and then
I think we just sort of came to the conclusion. And I think it was really good
my parents, because my parents let me decide, they didn’t see it as it was
their decision not mine. They realised that I was mature enough and it was my
life I was playing with and that I should be able to make that decision.

Do you think that’s important as well?

Yes I mean
parents as well as doctors have to understand that when a child gets a serious
illness they’re not children anymore. they’re almost adults in the way they
think and the way they do things. And they have to understand that it’s their
lives that they’re playing with not their parents, not theirs but the child’s
life and they have to be able to make the final call no matter what age. It
should be their decision, if they’re old enough to understand then why should
they not be allowed to make the decision. I agree with things like consent, a
parent to consent but I think that children should also have to give consent as
well.

Yes. I think in some study’s they do give assent.

I mean yes I
think in most studies now they do assent, I think in mine I had to do assent as
well but I think that should be in all trials because it’s not the parents life
it’s the child’s at the end of the day.

Do you think it’s
important that children do take part in trials?

Yes it’s taking a risk on your life so; in the grand scale of
things it’s taking a risk on your life so other children in the future don’t
have to take a risk like that. And it’s whether you’re willing to make that
sacrifice.

And that sounds really hypocritical because I didn’t make that
sacrifice but still.

No but you made a decision and that’s, it was a
good, that was your decision and I think…

I mean I consider that, I mean people; I mean children would be
quite reluctant to take that risk. But they’ve got to understand that these
drugs have been tested in other ways, they’ve been tested on healthy people
first so it’s not like they’ve just randomly produced a drug and they’re giving
it to you, there have been tests done before so they know it’s a fairly safe
drug. And that’s the key message that doctors need to get…..

Get across to
young people that they’re safe?

Yes, that they will do everything in their power to keep them
safe.

That’s very
important.

And safety to a child is a big deal. it’s like feeling safe in
your own home; it’s like feeling safe with your family.

And because you’ve sort of declined to take part in
a trial for very good reasons and you made the decision, if you were invited to
take part in another trial in the future or something different, would you
reconsider, would you consider another trial?

It depends what
it is, if I mean if it involved more tablets and more medicines I wouldn’t
necessarily I’d probably say no. Because I’ve had so many toxins in my body I
don’t really need anymore. But if it’s something like this with experiences and
views and values then yes I’m there straight away.

So anything that’s missing can be powerful.

I think doctors
have got to understand that when you’ve have cancer there’s just so many
toxins, the only way they can kill cancer is by killing everything else as well
and I think yes I wouldn’t take anymore drugs if I didn’t have to, definitely
not.

Do you think payment for young people is important
or not?

No.

Why’s that?

Because this
drug could change your life isn’t that payment enough? This drug could change
everything for the better and surely that is enough, I know like with things
like acne trials and stuff that’s different then yes payment is a good idea
because children will be more reluctant to take part but when it comes to
serious trials like this I don’t think they should be payment in that.

So do you think it depends on maybe the type of
trial?

Type of trial
definitely, definitely.

Like I say there are some that are just…

Yes there are
things like asthma and acne and yes then you could, yes then yes. But with
serious trials like chemotherapy and protocols or any other serious illness I
don’t think payment is needed. Because it is basically saying that this drug
could change your life and make you so much better so surely that is payment
enough.

So it’s going to be of benefit to you?

Hopefully.

Because sometimes these things aren’t always of
benefit to you?

I know.

it’s for those in the future isn’t it?

Yes.

How do you feel about that?

I think you
have to take the next step for the next generation. And you have to be able to
understand and that you could change millions of children’s lives in the future
and whether that is worth taking your risk on your own.

So it’s weighing up whether you want to put
yourself…

Be securing
your life or let thousands of kids for God knows how many years be secure in
theirs.

Do you know the result of the?

Yes, they’re
doing one block now.

they’re doing one block?

they’re doing
one block now because, I was quite, to be honest I was surprised that they
actually did the trial because they, this is what they do in Europe and America
already, that way Europe is quite ahead in research when it comes to cancer. So
now they’ve changed to one block across the country not the country, region or
whatever. You get what I mean.

That’s interesting really isn’t it?

Yes.

So in an end…

But I suppose
they had to prove it otherwise they would be like; they would have no reason to
change the trial because from different nationalities react differently to
drugs. Different ethnic backgrounds, your DNA is very different.

Yes and age.

Exactly.

So just, did that reassure you when you heard that,
when you found that out just doing the one block?

I mean for
patients now it’s very good because at the end of the day it’s less suffering.
it’s less chemo and its less toxins and it’s less suffering. So yes I mean
that’s a lot better. Because my dad actually did a lot of research before we
made our decision he used to go on like Pub Med and all the medical journals
and read and stuff to find out.

Right, was that a good thing?

Yes I think
we got a lot of background information on what they’re doing in different
countries and why they do it that really did help in making a decision,
definitely.

That helped you; did that help your dad explain
things to you?

I read the
papers myself.

Did you?

I didn’t
always understand them fully but I read them myself and just asked if there was
something that I didn’t understand.

So that’s quite a big thing to do isn’t it?

And like now
I can read all these papers and understand most of it. Like the other day me
and my mum were doing some research on Pub Med and I was reading these like
four pages long trial reports or something and yes I understand that.

Oh so it’s kind of informed you?

Yes
definitely, I know a lot of stuff that I think a lot of kids my age wouldn’t
dare touch or understand in any way.

So how should
researchers and health professionals inform young people about taking part in a
clinical trial?

I mean they should talk to
them and I’ve said this from when my treatment started. Doctors and researches
should not talk to the parents they should talk to the children because it’s their
lives not their parents.

And how…?

I mean they should talk at their level, they should learn they
should be trained to be able; if they’re working in paediatrics they should be
able to explain anything to a child of any age because surely that should be a
qualification of a paediatric doctor. Any paediatric doctor should be able to
bring it down to a child’s level.

So do you think
then, how should they do that, is that both in conversation and in leaflet
information?

Yes in leaflets and I think it would be really good if patients
are given like that link to a researcher or a doctor who they can turn to for
questions and they have a direct conversation with them. So that they know that
they will always have somebody there for reassurance. And that way, I did
really well because I made a really close bond with my consultant, we were
really close and that way I did really well because he spoke to me and not my
parents.

And then he said that we’re doing the trial, you’ll be put in
something called randomisation and youll have either one block or two,
basically.

So when they said
you were going to be randomised, what does that mean to you, what did you
understand about that?

He explained it as you’re put in a computer and the computer
decides yes or no from that they say one block or two.

And did that…

And it was really weird, I imagined this black and green screen
with all those names like going [sound of fruit machine], it sounds really
stupid but that’s the first thought that came to my mind when I thought of it,
I don’t know why.

No.

It was a bit like one of those thingy machines.

Three cherries is
it? Or
three oranges.

That’s the thought that came into my mind surprisingly.

Because it’s just, you know…

Random, it is
random.

What’s going to go where?

Yes.

So you understood
about being randomised.

I think I understood randomisation.

If you had to
explain it now to another young person what that meant, how would you describe
randomisation?

I would describe randomisation as basically it’s almost like your
name is being picked out of a hat to put it simply. And it is just pure luck if
you want to call it luck. It is just either you’re picked or you’re not. I
don’t know it’s really difficult because like I’ve been with MCRN for ages so I
know all the technical terms and how to explain them technically but sort of
what I know now so back to that level a little bit difficult.

Yes. And how did
that I mean at the time but how did you feel about that, you know, you were
going to be randomised, have one treatment or the other treatment without
knowing?

I thought it was quite a risky strategy.

Why’s that?

Because you don’t know what’s going to happen, you’re saying yes
to a trial but you’re not guaranteed to have one block so you’re basically
taking the risk that you might have signed all these forms and said yes and
then do what you would have done anyway.

I mean and in terms of being allocated to a group
how does that feel when you’re going to be allocated to a group when you’re
going into one or the other?

I think it is
quite a scary prospect because you are just being randomly picked but I think
once they explain it it’s fun, it’s pretty simple to understand it’s like blue
cube, blue cube, orange cube, blue cube, yellow cube we do that like do you
know like yes, it’s a really weird way of explaining it.