Mohini - Interview 56

Age at interview: 12

Age at diagnosis: 9

Brief Outline: Soon after diagnosis Mohini's parents were asked if they would be willing to enter Mohini in a clinical trial. Her parents talked to Mohini about the trial and they discussed it over a few weeks before making a decision. Mohini decided that she did not want to take part in the trial and so she declined.

Background: Mohini aged 12, is Asian Indian, and attends a local school. Her hobbies include dance and volunteering. She is a member of the Medicines for Children's Research Network. Mohini was diagnosed with acute lymphoblastic leukemia at the age of 9.

More about me...

Mohini is 12 years of age and was diagnosed with acute lymphoblastic leukemia at the age of 9. Approximately one year later, her parents were asked by the consultant if they would be willing to enter Mohini in a clinical trial. Mohini was unaware of this at the time; however, her parents discussed it with her at home. They didn’t have to make a decision straight away and discussed together some of the risks and the benefits of taking part.

Mohini says that her parents wanted the decision to be hers. They felt that because it was her life and her future; it was important she had the final call and they would support her in whatever decision she made. They discussed together and Mohini also spoke to some other family members.

After much thought and talking with her parents and other family members, Mohini decided to decline to take part.

Her message to health professionals and those who are recruiting young people to take part in clinical trials is to talk to the young people and not just parents.

She would consider taking part in future clinical trials if they didn’t involve more tablets or medication. She says she has had so many toxins in her body and doesn’t really want any more. However, if it involved talking about experiences and sharing views and completing questionnaires, she would be more than willing to help.
 

Mohini thought randomisation was quite a risky strategy, but once the consultant explained it, she felt better and able to make an informed decision on whether to take part or not.

And then he said that we’re doing the trial, you’ll be put in something called randomisation and you‘ll 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.

 

For some trials, a payment may be appropriate says Mohini, but for many trials knowing that taking part may change your life and make you better is payment enough.

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.

 

Mohini is pleased to know that the results of the trial are now published and a leukaemia treatment used in Europe and the US is now being used for patients in the UK.

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.

 

Doctors and nurses need to talk to young people says Mohini and not just their parents. A close relationship with staff caring for you is important.

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.

 

Mohini says that taking part in a trial that involves intensive treatment is a real commitment to helping other young people in the future. It's important to know that all drugs have had preliminary testing before being trialled in young people.

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.

 

Mohini feels that doctors need to understand that when young people have to take lots of medicines because of their health, taking more medicines may be just too much.

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.

 

As a result of a clinical trial, a treatment for leukaemia used in Europe and the USA is now being used for patients in the UK.

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.

 

Although Mohini understands about clinical trials, it can be hard to explain what it means to others.

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.

 

Mohini thought it was a bit unfair that her parents got all the information first.

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.

 

She says young people can understand complex information and doctors shouldn't underestimate their intelligence.

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.

 

It's important young people of all ages are given the opportunity to give their consent to take part, or not, in a clinical trial, says Mohini.

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.

 

Making the decision about whether to take part in a trial was not easy. Mohini decided not to take part because she wanted the standard treatment.

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.

 

Having time to make a decision about taking part in a trial was helpful to Mohini and she was pleased her parents gave her the final decision.

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.

 

Mohini's mum and dad had different views about whether she should take part, but knowing that her parents supported her decision not to take part was important.

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.

 

Even though it may have been better for Mohini to take part in the trial, she has no regrets about her decision.

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.