A Difficult Line Great Ormond Street

This programme contains scenes which some viewers may find upsetting.

All cancer in children is rare, and at Great Ormond Street Hospital,

they treat some of the most complex cases.

Cure rates are on the rise, but there are still many types of cancer

that doctors struggle to treat.

You're acutely aware there isn't an answer,

we haven't got that treatment ready to give to that child,

so I suppose it drives us to do what we do

to push the research forward

to really try and make sure that we get to the next step.

But when doctors push the boundaries of medicine,

the treatments can sometimes be as devastating as the disease.

If there's a chance for her only surviving two years,

why risk putting her in a wheelchair?

Doctors and parents have to make difficult decisions

about what is in the best interests of the child,

and sometimes they disagree.

If we can get a balance and we can continue with the treatment

then there is still, in our eyes,

there is still a teeny bit of hope.

It's so understandable that you're going to do

everything in your power to hunt down the last chance of a cure,

but where that becomes a futile exercise

is a difficult call, difficult line.

Two-year-old Barnabas has been suffering from breathing problems

for the last few weeks.

Two days ago, he was admitted to Great Ormond Street Hospital,

and after an emergency scan,

doctors have discovered he has a tumour in his chest.

The hospital has sent a sample to the pathology lab.

Dr Olga Slater needs to know what type of tumour it is

before she can treat it.

-How are you? You had a stressful night?

-Yes.

Dad was with him through the night.

What we are doing at the moment is waiting for the pathology results.

I've spoken to the lab this morning,

and there's a couple of types of tumours we are in between,

and we will have a result later on this morning. OK?

All right?

I'm sorry.

I'm sorry, it must be very worrying. OK.

He is in a safe place. OK?

So if anything needs to be done it will be done here,

and if he needs more help with breathing

he will have more help with breathing

and if he needs help with anything else that'll be provided.

OK?

It's just all a bit overwhelming.

I know, I know. It is, it is.

'These parents, whose child

'is probably the most precious individual they have in their lives,

'are frightened, they are very vulnerable,'

so it's really a combination of being sensitive to how they feel

but also knowing that they need to know

what is happening and why we are doing everything that we're doing.

The type of tumour will determine

whether Barnabas has emergency surgery or chemotherapy.

Both treatments need to be ready for Barnabas to start

as soon as the diagnosis comes through.

All the night he deteriorated with increased work of breathing

and really grunting, and he's got subcostal recessions

and his gases are rubbish.

As you can see, it's a huge mass, partly solid, partly cystic.

My concerns are it's not as appraised

that he's got a respiratory restriction,

because you can see that the right main bronchus

-is almost down to a pin-point hole here.

-Absolutely.

And left main bronchus is no better.

It's likely that we will have to probably intervene early,

but we just need to have a little more information about that.

And also histology can tell us if we need to do anything before surgery,

whether we can help in shrinking this tumour.

Yeah, yeah, yeah.

An hour later, Barnabas' results are back from the lab.

Hello, hi, it's Olga Slater.

Olga calls the surgeon to update him.

Just to let you know I got a histology on that baby,

and it's not BPB, it's a peripheral neuroectodermal tumour.

So I will I will treat him with some chemotherapy.

OK.

And the E top is 150.

Yeah, on day one, two and three. And that's his urine here.

And Olga has all this put in his notes?

Yeah, do you want me to take those?

We're going to give him some chemotherapy

and we're going to start giving him chemotherapy today.

We're going to give him four different chemotherapy drugs,

not all at once, but in a succession.

It is going to take quite a long time.

We're talking probably about a year of treatment.

You will not be in the hospital the whole time,

you will come in and out.

But what we will try to do

is, of course, keep you at home as much as possible.

Chemotherapy will shrink the tumour,

but he'll still need an operation to remove it completely.

-Thank you.

-You'll come to me, there you go.

A week ago, five-year-old Chiane

started having terrible headaches and balance problems.

The local hospital have sent her to Great Ormond Street

for an emergency MRI scan,

as there is a possibility she may have a brain tumour.

Her parents, Chris and Andia,

are meeting neurosurgeon Owais Gilani for the first time.

Hello.

What we know so far is Chiane has a lump that we can see on the CT scan,

the MRI scan, in her head, in the brain.

The most likely thing is that this is a tumour,

but what type of a tumour it's difficult to say just by looking at the MRI scan.

So what we're proposing to do is,

the first stage is surgery where we will try and debark the lump.

We'll take the pressure away from the surrounding brain

and get a histological diagnosis.

I understand. OK.

There's always a risk to all kinds of operations,

and there's a risk of causing damage to the surrounding brain.

Now, it's quite an important part of the brain.

So, first of all, it controls your right side of your body,

but also, it can control areas

that are responsible for your speech, speech comprehension.

The only other thing to talk about is seizures,

and that may be a feature after the surgery

and that may be a long-term feature.

-Just to understand, it's quite big?

-Yes.

-As in, it's quite a big lump in there?

-Yes.

If that's being removed...

I'm just trying to get my head around how this is working.

Was that once upon a time brain that's now dead,

or is it just something alien that's started growing and then pushed the brain?

A very good question.

The most likely explanation is that this is a tumour

-that's grown and that's pushed the brain out of its way.

-OK.

The depth would be about 5cm from the surface of the brain.

So that's how deep they're gonna go?

-Yeah.

-Right.

OK.

24 hours later, the surgeon is going to attempt

to remove as much of the tumour as possible.

This region here, it's difficult to work out what's going on.

I mean, up here, you know, we should be fine.

To start off we'll go in somewhere there, debark it.

If there are areas where it seems that the risk will too high

to try and take that bit away,

or there are areas where it's a little unclear

whether this is tumour infiltrating brain or just normal brain,

then my thoughts at the moment are to leave those areas behind.

One can always go back in at a later date if that's necessary,

rather than do damage,

which usually tends to be irreversible in the brain.

Pass the tools, please.

CUTTER BUZZES

So they're opening the covering of the brain.

We can see the brain is under pressure.

The way you can assess that is as you open the coverings,

you can see how the brain's pushing out.

It shouldn't normally do that.

Surgeon Owais Gilani can see the tumour has spread into the brain,

but the damage looks minimal.

So that specimen can go to the lab.

They're waiting for it, and we need a smear result.

-What shall I tell them?

-Brain tumour.

-Where's the tumour?

Left parietal-temporal.

Now we're going to start to take some of the tumour out.

We've taken out all the tumour that we could see,

but with tumours like this,

where the boundary wasn't clear around the tumour,

it's a little bit unsatisfactory in that you know, almost certainly,

that there must be bits left behind, because it's a judgment call,

rather than having a clean plane between the tumour and the brain.

But as far as, surgically, what we could do,

I think we've done that here.

We're just waiting to make sure it's calm and nothing's bleeding

and then we'll close and get a scan and then see what that looks like.

Of all the tumours they see in children,

those in the brain are the most common,

and it could be one of 135 different types.

We still, for many of these diseases,

we don't understand what triggers it.

We don't understand why it starts in one child and not in another.

And therefore we can't control what is actually causing it.

So in a sense it is completely random.

Hi, guys, how we doing? Are we awake?

-No, not quite yet, but nearly.

-OK.

Chiane's parents will have to wait a week

for the lab to identify the type of tumour.

If it's cancer, Chiane may face more surgery,

chemotherapy and radiotherapy.

Hello.

Breathe deep for me with your mouth open. Brilliant!

You're a star.

Chiane and her parents return to the hospital

to meet Dr Penelope Brock for the results of the biopsy.

And then I'm going to ask you to close your eyes and stand still.

Fantastic! That's fine! Perfect!

So your balance is good, your eyes are good,

all your reflexes are good. It's fantastic.

SHE LAUGHS

The name that's she's got for this lump that's now gone

is what we call a supratentorial PNET,

which is a primitive neuroectodermal tumour.

-You don't need to remember any of that.

-OK.

But that's what it's called, and what we're going to do

is we're going to treat it so that it doesn't come back again.

-OK.

-That's the plan.

But it's specifically called a tumour?

It's not C-A-N-C-E-R?

-I don't want to say it in front of her.

-Yes, it is.

-It is. OK.

-It is, yes.

-Is it something that's aggressive?

-Yes.

It's a very aggressive...

Basically, those cells are multiplying very fast.

It's probably growing fast, and we need to treat it adequately

to prevent it coming back.

But this particular treatment protocol,

which we call the Milan Protocol,

because it was designed in Milan in Italy,

that has given the best results so far with this type of tumour.

It's going to be different chemotherapy treatments,

-and then she will also get radiotherapy.

-OK.

And then, if we think she needs it,

she will go on to get high-dose chemotherapy.

-So this treatment plan is called Milan?

-Yes.

How many children have actually had it? This specific treatment?

I can't give you an exact figure across the world.

-Here we've given it to, I would say...seven?

-Yeah.

-OK. Seven children.

-OK.

So it's quite new for us.

I love you. Getting a bit tired?

I think what is difficult is because we know this is such a nasty tumour

and has an enormous potential to come back,

particularly locally,

we are going to have to give her lots of chemotherapy

and different chemotherapy, one after the other, relatively fast.

So it's sort of dose-intensive,

and then we're going to go into accelerated, rapid radiotherapy,

and then go into very high-dose therapy

where we need to give stem cell rescue.

So the treatment is not perhaps as long as some of our treatments are,

but it's going to be tough.

There are so few children treated on the Milan Protocol

that the survival statistics are hard to interpret.

Chiane's parents have yet to agree to this treatment,

and have been researching on the internet

to help them make a decision.

OK, survival rate, yes, OK. Germany, 29 children.

Three made it.

-Of 29?

-Yeah.

Overall survival rate, second study, 17% of 44 children.

Third one.

15%.

They don't know enough.

They just don't know enough, how to treat this.

The majority of the children die.

The majority of them die.

They just don't know.

All the studies that I've read, every single one of them,

and this is up to August 2010,

yeah, so it's very, very new.

If it comes back, you're in trouble, because it comes back stronger.

Well, it doesn't really matter what treatment therapy she goes on,

she's just going to be a guinea pig.

She's just gonna be another number, another statistic.

In most cases where the children died, it's within 13 months.

Do we, say...

..give her one or two sessions to improve her quality of life

and go home, and...?

Do we say, let's give it our all, let's throw everything at it...

..and what we throw at her might actually help her on to die quicker,

because they don't know, they don't know?

No.

OK, well, even if we do just a few chemotherapies to improve her life...

-Yeah, I know.

-..she's still going to...

-I know.

I don't know if we have a choice left, do we?

Because what if she's the lucky one and we took her home?

As doctors try to cure patients with very rare tumours,

the decisions become more difficult and the risks higher.

It might even be the treatment that kills the child.

That is the most ghastly thing to cope with for everybody,

because by pushing out the frontiers of the treatment,

some of the very aggressive tumours we have to treat very aggressively.

So you're constantly on the edge of causing so much toxicity

that the child dies what we call a toxic death,

and those, nobody copes with.

But the difficulty is that what we have shown

is that if you don't push out the frontiers like that,

you don't increase the cure rate.

This doesn't take away any further discussions

at any time about any of this,

but it's just that once this is signed,

the chemo can be released.

A week later, Chris and Andia

have agreed to go ahead with the chemotherapy treatment -

the first stage of the Milan Protocol.

I'm going to put less than 5%.

So I think I completely... Did you say the risk of her...?

Having a second cancer.

-Right, OK, because I thought you said the risk of her SURVIVING this is less than 5%.

-No!

Then I was speaking very badly. We're hoping that...

-I thought...

-We're hoping with this treatment that the survival chances will be over 40%.

We're hoping they'll be closer to 50-60 with this approach.

-Erm, but obviously...

-I know, we know there's no guarantees.

-I mean, we've read all the legitimate articles...

-Yeah.

-..so we know.

-Yes.

The hospital have been very patient with us as parents, you know.

As parents, you also go through your own phase of things.

We've done a phenomenal amount of research.

You know, we look at a lot of different situations, cases, studies,

treatments, not only to have peace of mind as a parent,

but, before this starts, that I've done everything that I possibly could

and based on what I've seen and what I've read, this is our best shot.

Do you understand today that we're going to give you some medicine?

-Do you understand that?

-Yes.

-Where's Mummy?

-Here.

-Oh, here's Mummy.

We were just talking about, "Rapunzel, Rapunzel, let down your hair,"

and that she got the man of her dreams in the end.

Procedures for the Milan Protocol starting.

She's had no previous chemotherapies, no side effects,

on the 19th pan, fit for me to track is eight today.

For Chiane, this is just the beginning of several months

of chemotherapy, radiotherapy and potentially high-dose chemotherapy.

In many cases, chemotherapy can produce extraordinary results.

After four months of treatment, Barnabas' tumour has shrunk enough for surgery to be possible.

-Hello there.

-Hello.

-Good morning.

-How are you?

-All right.

-How are you?

-Good morning.

-Come along.

Come to a room and then we'll talk for a second.

There's been a very good response, as you know as I told you.

The tumour has shrunk down quite significantly

but there is still a lump there and we need to take this lump out

and to take the rib that starts from that, all the way round.

The other thing is that, you know, there could be, erm...

a piece of the lung which may be stuck into this mass.

We may need to take a bit of the lung out as well.

It is extremely rare that the child may not survive an operation like this.

This is a big operation and I think that it shouldn't be the case,

but I need to mention this to you but that incidence is difficult

to give you a figure, but that will be probably less than 1% or 1%.

OK? Who's going to sign the consent?

-Yeah.

-You want to do it? It's difficult. Oh, there you are.

OK, so if you sign it there.

That's fine. It's your son.

So we're entering the chest wall...

..and we can feel the tumour.

OK.

Now just a sec. Can I have scissors, please?

I'll do like this in case we need to...

Can I have that, please?

So, unfortunately, we may need to take part of the other rib again.

-Do you see here?

-Yeah.

It's attached to his other rib.

So I think we should do that - take part of this and take it off.

So can I have the other bone, er...?

-Bone cutter?

-Yeah, bone cutter.

The tumour is invading the rib above,

so we may need to do a more extensive resection than we were thinking...

..taking part of the other rib as well.

Yep, it's a little bit stuck.

It's probably there below...

So we have to take a bit of the lung out with the...

-That's good. Ready, Tony, yeah?

-Mm-hm.

So we had to remove a little bit of the lung,

together with the lesion, but that's fine and it will be OK.

We just, er...

..with the lung too - a little bit more work here now.

After three hours of operating, Professor Pierro removes the tumour.

-OK? There you are.

-Thank you.

-Thanks.

Horrendous operation, I think, this one.

-In terms of destructive?

-It's very destructive...

..erm, because we're dealing with bones

and all the operations on bones are a little bit more like this.

But that's OK, because we removed whatever we could see.

Once Barnabas recovers from the operation,

he will need more chemotherapy and radiotherapy

to give him the best chance that the cancer won't return.

30 years ago, when people started treating childhood cancer,

the outcomes were abysmal.

The outcomes were 20%,

and now the outcomes are 70%.

-If you've got any problems, just give us a call.

-OK.

So what has been achieved in the last 30 years

has been achieved through, you know, hard work, determination,

trying things that nobody has tried before.

It's a very difficult situation

that we find our patients and their parents in

and it's very important to show them that we can improve things

and then there is hope.

So I think that's probably what drives me,

to try to improve something

that's not easy to improve, but can be done.

Did you see moo cows at the farm?

Two-and-a-half years ago, Luna was diagnosed with a rare brain tumour.

Since then, she's had numerous operations, chemotherapy

and radiotherapy.

She's now four and her tumour continues to grow.

-Do you want your mummy?

-Are we all ready? Ready to start?

Last week, surgeons made one final attempt to remove it.

Her doctor, Antony Michalski and the surgical team are reviewing her scan

to see if the surgery has been successful.

And you can see that, er, she had a large left frame recurrence,

which has been resected.

Er, and now what she has is a new more anterior lesion,

looks durally based, compressing the brain stem

or compressing on the brain stem...

..on the left, which wasn't visible on the previous study.

I'd rather hoped that, you know, after this last operation,

it would have been the first time

where we would have got her into a position

where she was surgically clear or scan clear.

She's never been that since we saw her, but...

You're picking away at something

which is just recurring again and again

in areas that, although they may be surgically accessible,

erm, this is just a, you know, recurrent phenomenon

and it's not actually treating a tumour, it's treating the scan.

-One feels one's chasing shadows a bit here.

-Mmm.

OK, thank you very much.

-Hi, Luna.

-Hello.

Come on, then.

Erm, it's not as good of good news

as we'd of hoped, really, I'm afraid.

OK, how bad is it?

Erm, well, on the post-operative scan

I mean, the good thing is that there's a hole where the tumour was

and that's all gone...

..but the bad thing is that in a different place,

there's another new nodule, which is...

-This is a new one?

-Yeah.

Can you take that one out?

We talked about that, but putting her through that

when we know we're leaving bits elsewhere

I mean, just doesn't seem the right thing to do.

So what...what can we do?

We're left with chemotherapy.

Now...

..it's what we're doing it for that is the issue.

I'm not... I'm not going to...

I'm not in the business of taking away anybody's hope or anything,

erm, and, of course, I think we all hope and pray

that we see a fantastic, dramatic response

and it's maintained, but, you know, that might not happen.

I'm sorry.

She was doing so well, she is so well.

-Mmm.

-Do you want to give Mummy a cuddle?

The chemotherapy that Dr Michalski's now offering,

etoposide, is highly unlikely to cure her

but he hopes it will stop the tumour growing and buy her some time.

It's very unlikely that she's going to be a long-term survivor

but you never say never.

I've had patients where it's grown and suddenly stopped

and ten years later, for reasons we can't explain,

they're running around fine

and you don't know who's going to do that and who isn't.

-You today.

-Mmm.

-And last night and now it's Daddy's day off, isn't it?

-Yes.

Chiane is due to start the second stage of her treatment programme -

intensive radiotherapy.

Her doctors meet to discuss

the possible risks of such high-dose treatment.

-Yeah, you see, this...

-She wouldn't fit into this one either...

-..this is what really worries me.

What I've read about it is, because you then give a higher fraction,

you add on even more effect to the tumour

-but actually we don't know long-term what you do to the brain?

-No, yeah.

-Because we just don't have any follow-up on that, really.

-No, we don't. You're right.

-So you're in a kind of situation where...where you're going to have to treat her very hard.

-Mmm.

And she's going to have lots of late effects

because she's going to be giving her brain a big old whack, 55 grey of radiotherapy.

The one's that I've seen that were irradiated very early, then they got pretty significant problems,

but at the age of five...

I mean...

..I think the expectation would be

that they could live an independent/slightly sheltered life.

Most of them wouldn't go to higher education or anything like that...

-Mmm.

-..but they might be...

-Happy people?

..happy and useful members of society,

and, and, of course, that's the unanswerable, isn't it?

You've got all the stats of dead or alive

-and event-free survival and everything else...

-I know.

..and the thing that the parents want to know

and so often we can't tell them is

-what's she's going to be like when she's 18?

-I know.

Chiane's parents, Chris and Andia, are also worried.

They've been doing their own research into the long-term effects of this treatment.

The children vary from being - shall I say? - "special needs"

to being in a wheelchair in nappies having to be fed

and that was the scariest thing I have ever seen in my life.

And...

we just needed to know if...

if there's a chance for her only surviving two years,

why risk putting her in a wheelchair?

I really, really wouldn't expect that to be the case.

You know, I've...

I've yet to see somebody who's come in... Can you?

I can't... I can't think of anybody...

I can't imagine that that would be a scenario.

No, and remember that I don't know those 18 children,

but it could well of been that the tumour grew in a very eloquent part of their brain

and gave them problems to start with,

that they had high pressure in their heads,

-which gave them further problems, neuro-surgical issues...

-Sure.

..and, you know, there's loads of things other than just the radiotherapy,

but radiotherapy of itself, I really don't think

you should be looking at, erm... long-term side effects of that ilk.

You know, there are going to be measurable changes

but not sitting there needing to be fed and in nappies and in a wheelchair.

I think that would be not really expected at all.

Yeah.

We can't take away from you the fact that she will not be the same little girl

as she would otherwise have been, however,

I think it's important for you to see what sort of a life

we're actually trying to aim for

because if we have the evidence base,

the type of treatment that we're advising is going to really mean

that the patient can't have a decent quality of life,

then actually we won't normally be asked to work in groups

and write in groups and say, "No, we can't do that."

-I mean, it is an awful situation...

-It is.

-..and we're not trying to minimise the upset of it,

but if we don't do it, she's not going to survive.

-We're getting it all ready for you. How are you today?

-Good.

Good, that's what we like to hear.

Chiane's latest scan showed that the tumour has grown.

Her radiotherapy dose is going be stronger than originally planned.

We're squeezed between under-treating

and her almost certainly dying

and giving her enough treatment to give her a real chance of cure

but knowing that she will be damaged because of that.

There will be a disappointment

somewhere along the line in years to come

when she's going through school and other children are excelling,

which is probably what this little girl would have done...

..and actually that's going to be our fault -

that's what we're going to do through this treatment.

But we know if we don't do it, she won't be growing up.

You're doing a fantastic job there.

Seven excess. 43...

You've already started your treatment.

Just like we said, you won't feel anything or see anything.

You're already part-way through. You're doing absolutely fab!

You're doing really, really well.

-All done.

-OK, we're all done.

THEY APPLAUD

Good girl.

Good girl.

-Come back down about four.

-OK, so...

-Let's go. Bye!

Chiane will receive two sessions of radiotherapy a day

for the next four weeks

before she moves on to high-dose chemotherapy.

Luna's parents agree to put her on the etoposide

but they have started to look beyond Great Ormond Street.

They've sought second opinions from other UK specialists

but none have offered the possibility of cure.

On the internet, they have found the controversial Burzynski Clinic in Texas,

which offers an antineoplaston therapy as a treatment for cancer.

It's basically a concoction of seven different drugs that are given...

erm, which according to the clinic

they're not as harmful as chemos that are given here,

erm, and they've got a much higher success rate.

Dr Burzynski has run the treatment

as a clinical trial for the past 35 years,

but antineoplastons are not approved in the UK or on the US

for the prevention or treatment of any disease.

I mean, I don't know what the Burzynski Institute will say

but if they're running true to form,

I think they might well

give them a feeling of hope

and a feeling of...

that perhaps, you know, it can be cured in the long-term

with a sort of good chance and relatively few side effects.

But it becomes almost impossible

managing somebody when they're on a treatment,

the basis of which you don't agree with, the side-effects profile

of which you don't understand - the antineoplastons.

It's quite difficult to look after the kids then,

because you're not sure what to look for, you end up being very reactive

and it's an uncomfortable situation to be in.

Great Ormond Street told us she's going to die and there is nothing more that they can offer her.

So that's fine, but somebody else has said, "Actually we could cure your daughter."

Who's not going to take that chance, you know, I'd...

you know, cut my arms off if they said, "We need an arm to save your daughter."

Of course you'd do it - any parent would.

They're like gold dust.

After two months on the etoposide,

the oncology team want to see if it's stabilised Luna's tumour.

Erm, the April scan on the left and the more recent scan on the right.

The angle is slightly different

but really it doesn't look like there's any change in this lesion.

-So that's on the left four, then.

-Two months.

-Two months.

Would it be fair to say if this can back quite rapidly post-surgery,

-that it's stable?

-Yeah, I think it's stable.

-So...

-I think we've done something.

-Exactly, exactly.

-You know, I mean, if we had growth of a new nodule in three weeks...

-Exactly.

-..and we've got stable disease in two months...

-Exactly.

-..we've got an active agent.

It looks as if the etoposide is active in this tumour.

-Yeah, it could be and, you know, she might be one of the 40% to which it is.

-That's good.

I'm hoping that the scans and the discussions will convince them

to carry on with the treatment

that seems to be doing the most that you can expect a treatment to do in this circumstance

but it's a question of marrying up the expectations

and if they think that this is great, but it's not what they want -

you know, what they want is me to be saying, "This is fantastic,"

you know, "We're back on track for cure,"

then it's managing that expectation and that conversation, I suppose.

So we looked at scans really carefully throughout three trains

and we got the new radiologist doing it and they think it's the same.

-Oh, OK.

-So, I mean, if it was doing that...

and now it's doing this, then something...

-And the etoposide's OK...

-..is working, yeah.

-So my vote would be for... to continue the etoposide.

-OK.

-There's loads of things that you could do.

-Yeah, but we don't know...

But we don't know what the results are going to be

and I know that if we dump them altogether into one big cocktail,

which has never been tried altogether before,

-we're not going to have somebody who looks as well as she does now.

-No.

And there's no proof that that's going to be of benefit to her,

and so it's trying to sort of put something together

-which is as effective as it can be but is also sensible.

-Mmm.

Yeah, it's how long for, isn't it?

-Sure, absolutely. Nobody can predict that.

-No.

We can all hope but we can't predict.

-You're a bit of a mystery, aren't you, Luna?

-She is really.

Yeah, definitely, will do.

The etoposide is working

but Lucy and Mario are determined to find a cure.

Lucy has started fund-raising for Luna to go to the Burzynski Clinic.

So what needs to be done in order for her to get this treatment?

All we need to do, not "all"... We need to raise £100,000,

which is £20,000 for the initial assessment,

but they want to do their own MRIs and tests, just to make sure she's a suitable candidate,

which we're pretty sure she is

and also that her body can tolerate certain levels of drugs

and then once she gets accepted,

we need a further £80,000 for the drugs for the year.

I'm sure Ski's not going to be very happy but I know,

I know he'll understand why.

But from a professional point of view, I know he doesn't agree with the treatment.

So I don't expect him to say you know, go.

But he's not going to give us our blessing but I'm sure,

he's a really nice person, I'm sure he'll understand why we're doing it.

You know, there's no other option.

If he if he could have told us something else that he could try,

I would definitely try that rather than going out there

because it would be here and it would be free

and it would be the best place for us to be.

But there isn't anything so that's why we're going.

Lucy and Mario raised enough money

to have an initial consultation at the Burzynski Clinic.

They've been told that Luna is eligible for treatment.

Hiya! Looking very tanned.

And they've come to tell Dr Michalski they're going ahead.

Luna how was your holiday?

-Did you have a nice holiday?

-Did you have a nice time?

Did you go swimming?

What were you told would be the outcome measures of this?

Like the evidence base and all that sort of stuff?

-He said he'd had some good results with it.

-30% chance of it.

He said 30% of people have a good reaction, whether it's stable or it's shrinkage.

-And I know how you feel.

-What's that?

-I know how you feel about it.

-Ah!

I know. He's the only person who's said something.

-I know that is part of their thing.

-Yeah.

-You know, but...

You know, I suppose what I'm struggling with is that

when you come back she's going to be on a treatment which

I don't understand, the toxicity of which I can't interpret

and it's going to be difficult for me to know how to look after her.

-Yeah, I know that.

-And it's...

-I know that, I know that.

You know, and if I genuinely believed it was going to work,

-then I'd be wishing you well.

-You don't genuinely know it won't.

Well, if you haven't got the info and you're asking me

a scientifically honest question, "Can I prove it doesn't work?"

-Well I can't prove it cos I haven't got the information.

-Yeah.

But actually is there anything in the method of action

which gives me any idea that it should work? Nope!

There isn't. So I mean I am in a difficult situation with it.

The only time I've actually seen a response in somebody on this, they've also been on the Etoposide.

And we know Etoposide works sometimes.

-But we can't stay on Etoposide.

-No, you can't.

-That's the thing.

There's families we've been in contact with on the Ependi Care website that are at Burzynski

and there are a lot of kids that have been on Burzynski

-that are doing really well.

-Yeah.

That's not just to say they wouldn't have done well,

we don't know that, but to keep reading about these,

I mean the treatment itself does sound horrendous, you know,

the actual giving of it and the pump she has to be hooked up to

all the time and things like that, but if it works...

As a parent, if someone is offering you a glimmer of hope,

because Etoposide, as far as we're concerned is palliative

and causes leukaemia so she can't stay on it for 2 or 3 years.

-No, she can't.

-So it means we could have a year of being stable.

-Mmm.

-And then what?

-Well, the hope is of course it'll have done something

to the tumour that keeps it stable forever.

What percentage of patients is that going to happen in?

A very small percentage. I can't...

-It does happen sometimes?

-Well, occasionally it happens.

It's down at the kind of, you know, very, very rare end of the spectrum

and I don't want you to be so into the concept of a chance of cure

that we actually lose track of her on the way.

-No, we're not. We're not.

-Yeah.

-Are we?

-Cos she's been great over the last few months.

-Mmm.

-Really, really good.

-That's why it's probably harder, I know.

I know.

What you hear quite a lot is, "If there's one chance,

"how do we know that he or she is not going to be the one?"

You know, and the phrase that makes my heart sink is,

"We'd never forgive ourselves if,"

and actually it's not about them forgiving themselves,

it's about them doing the best for their child.

You know? Erm and, and the focus really should be on what's

happening for the individual child rather than the parental emotions.

And it's tough because it's so understandable

I, thankfully, have never been in that situation

but it's so understandable that you're going to do everything

in your power to hunt down the last chance of cure.

But where that becomes a futile exercise is a difficult call,

a difficult line.

After four weeks of radiotherapy, Chiane is back in for a scan

to find out whether the treatment is working.

It's actually looking really good.

This is where the lesion was.

It's looking really nice and clean.

What I'm seeing at the moment is a scan

which is showing where the tumour was and where it's been taken away.

So looking at that, it's as good as it gets.

Chiane's scan means that she's now eligible for the next step,

a very toxic high dose chemotherapy.

We'd already discussed you know, what do we do if it's better

if it's the same or if it's worse?

And we're in the very fortunate position

of being able to say it's better.

We're very pleased with the results of the MRI.

-It's a good start.

-It's great start.

What that means is that we are still trying to treat her curatively,

but standard chemotherapy carries a risk,

high dose chemotherapy carries a higher risk.

Where it becomes really hard today is that

nobody has proposed a treatment that COULD actually kill her.

And that's where I think this high dose is so frightening,

because we will do everything we can to get her through.

But if you both agree then we go into it as a team.

-OK.

-And we do everything we can to support her through it.

We decided from the word go that we're going to do everything

we can because it's just it's easy to say,

"Well no, let's stop now," but then in a year's time,

-we might turn round and go, "What if we did high dose?"

-Yeah.

-What then?

-To stop now would be insane.

The awful truth is this is the situation we're in.

We are making a decision for a child and it's what

we do all the time but it's ghastly when you think about it.

Because you're making the decision to put a child

through something that you don't want to have to do

because they've got this horrible thing.

I've seen too many children die of cancer

and I've seen too many children die of toxicity

and it weighs very heavily.

You know, you know what you're asking them to say yes to

and you know what the risks are.

So I feel quite humbled by it all really, now.

After three weeks of treatment at the Burzynski Clinic

Luna has returned to Great Ormond Street.

Firstly, how is she? She doesn't look great.

Yes. She started on the treatment and she was fine.

So then the next day at the apartment,

she just slept all day. Yeah

And she looked gray and her eyes were just rolling.

I was scared she wasn't going to wake up cos she just didn't look right.

-Mmm.

-So we took her to, we took her to the emergency room

and her sodium was 178 and her potassium was 1.2, I know.

So the left side of her face on day two completely went.

I mean, way worse than it is now,

dropped down and she was just drooling.

We were suctioning her every couple of minutes.

They did an MRI and it came back

and it was horrible it showed I mean the brain stem was like that.

It was crushing it, it had enlarged it had grown by 15%

and she's obsessively like, "I need a drink!"

But what I've noticed is that she's like weeing ridiculously,

even when I'm not pumping the water into her.

You don't get a sodium of a 170 unless you...

In one day. The day before it was OK.

Unless you've peed out pure water in huge volumes. So you know...

-She was.

-She had either far too much salts gone in and I don't know what's in...

-Well it has.

-The fact that she's still walking around and switched on

is pretty astonishing because that's a pretty, pretty sporting sodium.

I know, I know.

But I don't feel comfortable you just going home

and having the occasional blood test at home at the moment.

-I think, I think we need to be on this.

-OK.

If it is the treatment that's doing this,

you have to make a decision about whether you think it's worth

-carrying on or not?

-Yeah.

And I think you know my feelings on that one.

I do know your feelings on that,

and we saw amazing results on this stuff over there

with the kids that just picked up and that's what's so hard.

You know, I know everyone's sceptical about it

but things that we saw, kids that came in like dribbling messes,

not even able to walk and in two weeks were like running around.

We're kind of damned if we do and damned if we don't really, aren't we?

Cos we know it's growing. You know?

We know that her long-term future is....

Well, she hasn't got a long-term future, really.

We don't know that she's really going to, erm,

we'll lose her if the tumour is as big as and growing as fast

as, erm, we think it is, but it's how that happens.

Lucy has asked Dr Michalski to review Luna's most recent scans

and see if another operation is possible.

Dominic's been in a few times and it is a very difficult operation.

What would we be achieving by say trying to take half

or three-quarters of the peripheral region?

I don't think any neuro-surgeon would go for the intra brain stem lesion.

The difficulty is that she's got this thing

growing into the centre of her brain stem

and the best way of imagining it,

it's like a really high definition fibre optic cable

where a millimetre or two is hundreds of nerves you know?

And so it's the growth into that area that's the issue.

'OK. Well it's not great, is it?

'Any suggestions?

'Anything we can try medication-wise, your end?'

Well, I think it in terms of it all depends what we're trying it for?

-Erm, if we...

-'Time, really.'

-Time? Well...

-'I guess.'

-Yeah.

-'We've run out of cures haven't we?'

Yes. I mean...

Have you accepted that completely?

Cos if you have I was wondering

about the continuation of the Burzynski thing?

Well, I don't know because if we get time

maybe Burzynski could work, couldn't it?

Yeah.

There comes a time when you know that realistically,

children in a given situation are unlikely to be cured.

Where it'll be a miracle if they got through it.

So hopefully, sticking with them and being there for the child

and the family, sort of walking the walk with them, if you like,

lets them know that you've got their child's best interest at heart.

-Hello.

-Hello, how are you? Good to see you.

But you desperately want nobody else to go through that again.

And the motivation to try and understand the disease better,

change the treatment appropriately,

tailor it better, comes from when you haven't won.

-You don't like it? You don't like your fire truck?

-No.

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