0:00:02 > 0:00:07This programme contains scenes which some viewers may find upsetting.
0:00:07 > 0:00:11All cancer in children is rare, and at Great Ormond Street Hospital,
0:00:11 > 0:00:13they treat some of the most complex cases.
0:00:13 > 0:00:17Cure rates are on the rise, but there are still many types of cancer
0:00:17 > 0:00:19that doctors struggle to treat.
0:00:19 > 0:00:23You're acutely aware there isn't an answer,
0:00:23 > 0:00:27we haven't got that treatment ready to give to that child,
0:00:27 > 0:00:30so I suppose it drives us to do what we do
0:00:30 > 0:00:32to push the research forward
0:00:32 > 0:00:35to really try and make sure that we get to the next step.
0:00:36 > 0:00:39But when doctors push the boundaries of medicine,
0:00:39 > 0:00:43the treatments can sometimes be as devastating as the disease.
0:00:43 > 0:00:47If there's a chance for her only surviving two years,
0:00:47 > 0:00:50why risk putting her in a wheelchair?
0:00:51 > 0:00:54Doctors and parents have to make difficult decisions
0:00:54 > 0:00:57about what is in the best interests of the child,
0:00:57 > 0:00:59and sometimes they disagree.
0:00:59 > 0:01:02If we can get a balance and we can continue with the treatment
0:01:02 > 0:01:04then there is still, in our eyes,
0:01:04 > 0:01:06there is still a teeny bit of hope.
0:01:06 > 0:01:08It's so understandable that you're going to do
0:01:08 > 0:01:11everything in your power to hunt down the last chance of a cure,
0:01:11 > 0:01:15but where that becomes a futile exercise
0:01:15 > 0:01:18is a difficult call, difficult line.
0:01:31 > 0:01:35Two-year-old Barnabas has been suffering from breathing problems
0:01:35 > 0:01:37for the last few weeks.
0:01:37 > 0:01:40Two days ago, he was admitted to Great Ormond Street Hospital,
0:01:40 > 0:01:43and after an emergency scan,
0:01:43 > 0:01:46doctors have discovered he has a tumour in his chest.
0:01:47 > 0:01:50The hospital has sent a sample to the pathology lab.
0:01:50 > 0:01:54Dr Olga Slater needs to know what type of tumour it is
0:01:54 > 0:01:55before she can treat it.
0:01:56 > 0:02:01- How are you? You had a stressful night?- Yes.
0:02:01 > 0:02:05Dad was with him through the night.
0:02:05 > 0:02:12What we are doing at the moment is waiting for the pathology results.
0:02:12 > 0:02:15I've spoken to the lab this morning,
0:02:15 > 0:02:23and there's a couple of types of tumours we are in between,
0:02:23 > 0:02:27and we will have a result later on this morning. OK?
0:02:29 > 0:02:30All right?
0:02:33 > 0:02:35I'm sorry.
0:02:35 > 0:02:38I'm sorry, it must be very worrying. OK.
0:02:41 > 0:02:44He is in a safe place. OK?
0:02:44 > 0:02:46So if anything needs to be done it will be done here,
0:02:46 > 0:02:49and if he needs more help with breathing
0:02:49 > 0:02:51he will have more help with breathing
0:02:51 > 0:02:54and if he needs help with anything else that'll be provided.
0:02:54 > 0:02:55OK?
0:02:56 > 0:02:58It's just all a bit overwhelming.
0:02:58 > 0:03:01I know, I know. It is, it is.
0:03:03 > 0:03:06'These parents, whose child
0:03:06 > 0:03:11'is probably the most precious individual they have in their lives,
0:03:11 > 0:03:15'are frightened, they are very vulnerable,'
0:03:15 > 0:03:20so it's really a combination of being sensitive to how they feel
0:03:20 > 0:03:23but also knowing that they need to know
0:03:23 > 0:03:28what is happening and why we are doing everything that we're doing.
0:03:31 > 0:03:33The type of tumour will determine
0:03:33 > 0:03:37whether Barnabas has emergency surgery or chemotherapy.
0:03:37 > 0:03:40Both treatments need to be ready for Barnabas to start
0:03:40 > 0:03:43as soon as the diagnosis comes through.
0:03:45 > 0:03:52All the night he deteriorated with increased work of breathing
0:03:52 > 0:03:56and really grunting, and he's got subcostal recessions
0:03:56 > 0:04:01and his gases are rubbish.
0:04:01 > 0:04:05As you can see, it's a huge mass, partly solid, partly cystic.
0:04:05 > 0:04:07My concerns are it's not as appraised
0:04:07 > 0:04:10that he's got a respiratory restriction,
0:04:10 > 0:04:13because you can see that the right main bronchus
0:04:13 > 0:04:15- is almost down to a pin-point hole here.- Absolutely.
0:04:15 > 0:04:17And left main bronchus is no better.
0:04:17 > 0:04:20It's likely that we will have to probably intervene early,
0:04:20 > 0:04:23but we just need to have a little more information about that.
0:04:23 > 0:04:27And also histology can tell us if we need to do anything before surgery,
0:04:27 > 0:04:29whether we can help in shrinking this tumour.
0:04:29 > 0:04:30Yeah, yeah, yeah.
0:04:35 > 0:04:39An hour later, Barnabas' results are back from the lab.
0:04:39 > 0:04:41Hello, hi, it's Olga Slater.
0:04:42 > 0:04:45Olga calls the surgeon to update him.
0:04:45 > 0:04:51Just to let you know I got a histology on that baby,
0:04:51 > 0:04:57and it's not BPB, it's a peripheral neuroectodermal tumour.
0:04:57 > 0:05:01So I will I will treat him with some chemotherapy.
0:05:01 > 0:05:02OK.
0:05:08 > 0:05:11And the E top is 150.
0:05:11 > 0:05:15Yeah, on day one, two and three. And that's his urine here.
0:05:15 > 0:05:17And Olga has all this put in his notes?
0:05:17 > 0:05:19Yeah, do you want me to take those?
0:05:20 > 0:05:23We're going to give him some chemotherapy
0:05:23 > 0:05:27and we're going to start giving him chemotherapy today.
0:05:27 > 0:05:30We're going to give him four different chemotherapy drugs,
0:05:30 > 0:05:34not all at once, but in a succession.
0:05:34 > 0:05:36It is going to take quite a long time.
0:05:36 > 0:05:40We're talking probably about a year of treatment.
0:05:40 > 0:05:42You will not be in the hospital the whole time,
0:05:42 > 0:05:44you will come in and out.
0:05:44 > 0:05:46But what we will try to do
0:05:46 > 0:05:49is, of course, keep you at home as much as possible.
0:05:52 > 0:05:54Chemotherapy will shrink the tumour,
0:05:54 > 0:05:57but he'll still need an operation to remove it completely.
0:05:58 > 0:06:01- Thank you. - You'll come to me, there you go.
0:06:15 > 0:06:17A week ago, five-year-old Chiane
0:06:17 > 0:06:21started having terrible headaches and balance problems.
0:06:21 > 0:06:23The local hospital have sent her to Great Ormond Street
0:06:23 > 0:06:25for an emergency MRI scan,
0:06:25 > 0:06:28as there is a possibility she may have a brain tumour.
0:06:31 > 0:06:33Her parents, Chris and Andia,
0:06:33 > 0:06:36are meeting neurosurgeon Owais Gilani for the first time.
0:06:36 > 0:06:37Hello.
0:06:37 > 0:06:44What we know so far is Chiane has a lump that we can see on the CT scan,
0:06:44 > 0:06:46the MRI scan, in her head, in the brain.
0:06:46 > 0:06:51The most likely thing is that this is a tumour,
0:06:51 > 0:06:55but what type of a tumour it's difficult to say just by looking at the MRI scan.
0:06:55 > 0:06:57So what we're proposing to do is,
0:06:57 > 0:07:01the first stage is surgery where we will try and debark the lump.
0:07:01 > 0:07:04We'll take the pressure away from the surrounding brain
0:07:04 > 0:07:06and get a histological diagnosis.
0:07:06 > 0:07:07I understand. OK.
0:07:07 > 0:07:10There's always a risk to all kinds of operations,
0:07:10 > 0:07:14and there's a risk of causing damage to the surrounding brain.
0:07:14 > 0:07:18Now, it's quite an important part of the brain.
0:07:18 > 0:07:21So, first of all, it controls your right side of your body,
0:07:21 > 0:07:24but also, it can control areas
0:07:24 > 0:07:28that are responsible for your speech, speech comprehension.
0:07:30 > 0:07:33The only other thing to talk about is seizures,
0:07:33 > 0:07:36and that may be a feature after the surgery
0:07:36 > 0:07:38and that may be a long-term feature.
0:07:40 > 0:07:44- Just to understand, it's quite big? - Yes.
0:07:44 > 0:07:47- As in, it's quite a big lump in there?- Yes.
0:07:47 > 0:07:49If that's being removed...
0:07:49 > 0:07:51I'm just trying to get my head around how this is working.
0:07:51 > 0:07:55Was that once upon a time brain that's now dead,
0:07:55 > 0:07:59or is it just something alien that's started growing and then pushed the brain?
0:07:59 > 0:08:00A very good question.
0:08:00 > 0:08:04The most likely explanation is that this is a tumour
0:08:04 > 0:08:08- that's grown and that's pushed the brain out of its way.- OK.
0:08:08 > 0:08:13The depth would be about 5cm from the surface of the brain.
0:08:15 > 0:08:17So that's how deep they're gonna go?
0:08:17 > 0:08:19- Yeah.- Right.
0:08:22 > 0:08:23OK.
0:08:27 > 0:08:3024 hours later, the surgeon is going to attempt
0:08:30 > 0:08:33to remove as much of the tumour as possible.
0:08:47 > 0:08:51This region here, it's difficult to work out what's going on.
0:08:51 > 0:08:53I mean, up here, you know, we should be fine.
0:08:53 > 0:08:56To start off we'll go in somewhere there, debark it.
0:09:08 > 0:09:12If there are areas where it seems that the risk will too high
0:09:12 > 0:09:14to try and take that bit away,
0:09:14 > 0:09:17or there are areas where it's a little unclear
0:09:17 > 0:09:20whether this is tumour infiltrating brain or just normal brain,
0:09:20 > 0:09:24then my thoughts at the moment are to leave those areas behind.
0:09:24 > 0:09:27One can always go back in at a later date if that's necessary,
0:09:27 > 0:09:30rather than do damage,
0:09:30 > 0:09:33which usually tends to be irreversible in the brain.
0:09:43 > 0:09:45Pass the tools, please.
0:09:45 > 0:09:47CUTTER BUZZES
0:09:52 > 0:09:54So they're opening the covering of the brain.
0:09:54 > 0:09:56We can see the brain is under pressure.
0:09:56 > 0:09:59The way you can assess that is as you open the coverings,
0:09:59 > 0:10:02you can see how the brain's pushing out.
0:10:02 > 0:10:04It shouldn't normally do that.
0:10:08 > 0:10:11Surgeon Owais Gilani can see the tumour has spread into the brain,
0:10:11 > 0:10:13but the damage looks minimal.
0:10:19 > 0:10:21So that specimen can go to the lab.
0:10:21 > 0:10:24They're waiting for it, and we need a smear result.
0:10:24 > 0:10:28- What shall I tell them?- Brain tumour. - Where's the tumour?
0:10:28 > 0:10:29Left parietal-temporal.
0:10:30 > 0:10:34Now we're going to start to take some of the tumour out.
0:11:01 > 0:11:05We've taken out all the tumour that we could see,
0:11:05 > 0:11:06but with tumours like this,
0:11:06 > 0:11:09where the boundary wasn't clear around the tumour,
0:11:09 > 0:11:13it's a little bit unsatisfactory in that you know, almost certainly,
0:11:13 > 0:11:16that there must be bits left behind, because it's a judgment call,
0:11:16 > 0:11:19rather than having a clean plane between the tumour and the brain.
0:11:19 > 0:11:22But as far as, surgically, what we could do,
0:11:22 > 0:11:23I think we've done that here.
0:11:23 > 0:11:27We're just waiting to make sure it's calm and nothing's bleeding
0:11:27 > 0:11:31and then we'll close and get a scan and then see what that looks like.
0:11:36 > 0:11:39Of all the tumours they see in children,
0:11:39 > 0:11:41those in the brain are the most common,
0:11:41 > 0:11:45and it could be one of 135 different types.
0:11:47 > 0:11:51We still, for many of these diseases,
0:11:51 > 0:11:54we don't understand what triggers it.
0:11:54 > 0:11:58We don't understand why it starts in one child and not in another.
0:11:58 > 0:12:04And therefore we can't control what is actually causing it.
0:12:04 > 0:12:08So in a sense it is completely random.
0:12:10 > 0:12:14Hi, guys, how we doing? Are we awake?
0:12:14 > 0:12:16- No, not quite yet, but nearly.- OK.
0:12:17 > 0:12:20Chiane's parents will have to wait a week
0:12:20 > 0:12:24for the lab to identify the type of tumour.
0:12:24 > 0:12:27If it's cancer, Chiane may face more surgery,
0:12:27 > 0:12:29chemotherapy and radiotherapy.
0:12:31 > 0:12:33Hello.
0:12:43 > 0:12:46Breathe deep for me with your mouth open. Brilliant!
0:12:47 > 0:12:49You're a star.
0:12:49 > 0:12:52Chiane and her parents return to the hospital
0:12:52 > 0:12:56to meet Dr Penelope Brock for the results of the biopsy.
0:12:56 > 0:12:58And then I'm going to ask you to close your eyes and stand still.
0:13:00 > 0:13:03Fantastic! That's fine! Perfect!
0:13:03 > 0:13:06So your balance is good, your eyes are good,
0:13:06 > 0:13:09all your reflexes are good. It's fantastic.
0:13:09 > 0:13:11SHE LAUGHS
0:13:11 > 0:13:15The name that's she's got for this lump that's now gone
0:13:15 > 0:13:19is what we call a supratentorial PNET,
0:13:19 > 0:13:22which is a primitive neuroectodermal tumour.
0:13:22 > 0:13:26- You don't need to remember any of that.- OK.
0:13:26 > 0:13:30But that's what it's called, and what we're going to do
0:13:30 > 0:13:33is we're going to treat it so that it doesn't come back again.
0:13:33 > 0:13:35- OK.- That's the plan.
0:13:35 > 0:13:38But it's specifically called a tumour?
0:13:38 > 0:13:41It's not C-A-N-C-E-R?
0:13:41 > 0:13:44- I don't want to say it in front of her.- Yes, it is.
0:13:44 > 0:13:45- It is. OK.- It is, yes.
0:13:45 > 0:13:48- Is it something that's aggressive? - Yes.
0:13:48 > 0:13:49It's a very aggressive...
0:13:49 > 0:13:53Basically, those cells are multiplying very fast.
0:13:53 > 0:13:59It's probably growing fast, and we need to treat it adequately
0:13:59 > 0:14:02to prevent it coming back.
0:14:02 > 0:14:05But this particular treatment protocol,
0:14:05 > 0:14:07which we call the Milan Protocol,
0:14:07 > 0:14:09because it was designed in Milan in Italy,
0:14:09 > 0:14:14that has given the best results so far with this type of tumour.
0:14:14 > 0:14:19It's going to be different chemotherapy treatments,
0:14:19 > 0:14:22- and then she will also get radiotherapy.- OK.
0:14:22 > 0:14:25And then, if we think she needs it,
0:14:25 > 0:14:28she will go on to get high-dose chemotherapy.
0:14:29 > 0:14:33- So this treatment plan is called Milan?- Yes.
0:14:33 > 0:14:37How many children have actually had it? This specific treatment?
0:14:37 > 0:14:42I can't give you an exact figure across the world.
0:14:42 > 0:14:49- Here we've given it to, I would say...seven?- Yeah.
0:14:49 > 0:14:52- OK. Seven children.- OK.
0:14:52 > 0:14:54So it's quite new for us.
0:14:58 > 0:15:01I love you. Getting a bit tired?
0:15:02 > 0:15:08I think what is difficult is because we know this is such a nasty tumour
0:15:08 > 0:15:13and has an enormous potential to come back,
0:15:13 > 0:15:16particularly locally,
0:15:16 > 0:15:20we are going to have to give her lots of chemotherapy
0:15:20 > 0:15:25and different chemotherapy, one after the other, relatively fast.
0:15:25 > 0:15:28So it's sort of dose-intensive,
0:15:28 > 0:15:33and then we're going to go into accelerated, rapid radiotherapy,
0:15:33 > 0:15:35and then go into very high-dose therapy
0:15:35 > 0:15:39where we need to give stem cell rescue.
0:15:39 > 0:15:43So the treatment is not perhaps as long as some of our treatments are,
0:15:43 > 0:15:47but it's going to be tough.
0:15:50 > 0:15:53There are so few children treated on the Milan Protocol
0:15:53 > 0:15:57that the survival statistics are hard to interpret.
0:15:57 > 0:16:00Chiane's parents have yet to agree to this treatment,
0:16:00 > 0:16:02and have been researching on the internet
0:16:02 > 0:16:03to help them make a decision.
0:16:05 > 0:16:10OK, survival rate, yes, OK. Germany, 29 children.
0:16:12 > 0:16:14Three made it.
0:16:14 > 0:16:17- Of 29?- Yeah.
0:16:17 > 0:16:24Overall survival rate, second study, 17% of 44 children.
0:16:24 > 0:16:26Third one.
0:16:28 > 0:16:3115%.
0:16:34 > 0:16:35They don't know enough.
0:16:37 > 0:16:39They just don't know enough, how to treat this.
0:16:41 > 0:16:43The majority of the children die.
0:16:45 > 0:16:48The majority of them die.
0:16:50 > 0:16:51They just don't know.
0:16:54 > 0:16:57All the studies that I've read, every single one of them,
0:16:57 > 0:17:02and this is up to August 2010,
0:17:02 > 0:17:05yeah, so it's very, very new.
0:17:05 > 0:17:10If it comes back, you're in trouble, because it comes back stronger.
0:17:12 > 0:17:16Well, it doesn't really matter what treatment therapy she goes on,
0:17:16 > 0:17:18she's just going to be a guinea pig.
0:17:20 > 0:17:24She's just gonna be another number, another statistic.
0:17:26 > 0:17:32In most cases where the children died, it's within 13 months.
0:17:35 > 0:17:37Do we, say...
0:17:41 > 0:17:44..give her one or two sessions to improve her quality of life
0:17:44 > 0:17:45and go home, and...?
0:17:48 > 0:17:51Do we say, let's give it our all, let's throw everything at it...
0:17:56 > 0:18:00..and what we throw at her might actually help her on to die quicker,
0:18:00 > 0:18:02because they don't know, they don't know?
0:18:05 > 0:18:07No.
0:18:07 > 0:18:15OK, well, even if we do just a few chemotherapies to improve her life...
0:18:15 > 0:18:19- Yeah, I know.- ..she's still going to...- I know.
0:18:35 > 0:18:38I don't know if we have a choice left, do we?
0:18:38 > 0:18:43Because what if she's the lucky one and we took her home?
0:19:06 > 0:19:09As doctors try to cure patients with very rare tumours,
0:19:09 > 0:19:12the decisions become more difficult and the risks higher.
0:19:14 > 0:19:19It might even be the treatment that kills the child.
0:19:19 > 0:19:22That is the most ghastly thing to cope with for everybody,
0:19:22 > 0:19:26because by pushing out the frontiers of the treatment,
0:19:26 > 0:19:30some of the very aggressive tumours we have to treat very aggressively.
0:19:30 > 0:19:35So you're constantly on the edge of causing so much toxicity
0:19:35 > 0:19:38that the child dies what we call a toxic death,
0:19:39 > 0:19:42and those, nobody copes with.
0:19:42 > 0:19:45But the difficulty is that what we have shown
0:19:45 > 0:19:49is that if you don't push out the frontiers like that,
0:19:49 > 0:19:50you don't increase the cure rate.
0:19:54 > 0:19:57This doesn't take away any further discussions
0:19:57 > 0:19:59at any time about any of this,
0:19:59 > 0:20:01but it's just that once this is signed,
0:20:01 > 0:20:02the chemo can be released.
0:20:03 > 0:20:04A week later, Chris and Andia
0:20:04 > 0:20:08have agreed to go ahead with the chemotherapy treatment -
0:20:08 > 0:20:11the first stage of the Milan Protocol.
0:20:11 > 0:20:14I'm going to put less than 5%.
0:20:14 > 0:20:17So I think I completely... Did you say the risk of her...?
0:20:17 > 0:20:19Having a second cancer.
0:20:19 > 0:20:24- Right, OK, because I thought you said the risk of her SURVIVING this is less than 5%.- No!
0:20:24 > 0:20:28Then I was speaking very badly. We're hoping that...
0:20:28 > 0:20:34- I thought...- We're hoping with this treatment that the survival chances will be over 40%.
0:20:34 > 0:20:38We're hoping they'll be closer to 50-60 with this approach.
0:20:40 > 0:20:43- Erm, but obviously...- I know, we know there's no guarantees.
0:20:43 > 0:20:47- I mean, we've read all the legitimate articles...- Yeah. - ..so we know.- Yes.
0:20:47 > 0:20:51The hospital have been very patient with us as parents, you know.
0:20:51 > 0:20:54As parents, you also go through your own phase of things.
0:20:54 > 0:20:56We've done a phenomenal amount of research.
0:20:56 > 0:21:01You know, we look at a lot of different situations, cases, studies,
0:21:01 > 0:21:04treatments, not only to have peace of mind as a parent,
0:21:04 > 0:21:08but, before this starts, that I've done everything that I possibly could
0:21:08 > 0:21:12and based on what I've seen and what I've read, this is our best shot.
0:21:16 > 0:21:19Do you understand today that we're going to give you some medicine?
0:21:19 > 0:21:22- Do you understand that?- Yes.- Where's Mummy?- Here.- Oh, here's Mummy.
0:21:23 > 0:21:28We were just talking about, "Rapunzel, Rapunzel, let down your hair,"
0:21:28 > 0:21:31and that she got the man of her dreams in the end.
0:21:38 > 0:21:42Procedures for the Milan Protocol starting.
0:21:42 > 0:21:48She's had no previous chemotherapies, no side effects,
0:21:48 > 0:21:51on the 19th pan, fit for me to track is eight today.
0:22:10 > 0:22:15For Chiane, this is just the beginning of several months
0:22:15 > 0:22:19of chemotherapy, radiotherapy and potentially high-dose chemotherapy.
0:22:37 > 0:22:41In many cases, chemotherapy can produce extraordinary results.
0:22:41 > 0:22:46After four months of treatment, Barnabas' tumour has shrunk enough for surgery to be possible.
0:22:47 > 0:22:49- Hello there.- Hello.- Good morning.
0:22:49 > 0:22:54- How are you?- All right.- How are you? - Good morning.- Come along.
0:22:54 > 0:22:56Come to a room and then we'll talk for a second.
0:22:59 > 0:23:02There's been a very good response, as you know as I told you.
0:23:02 > 0:23:06The tumour has shrunk down quite significantly
0:23:06 > 0:23:13but there is still a lump there and we need to take this lump out
0:23:13 > 0:23:18and to take the rib that starts from that, all the way round.
0:23:18 > 0:23:23The other thing is that, you know, there could be, erm...
0:23:23 > 0:23:27a piece of the lung which may be stuck into this mass.
0:23:27 > 0:23:31We may need to take a bit of the lung out as well.
0:23:33 > 0:23:39It is extremely rare that the child may not survive an operation like this.
0:23:39 > 0:23:43This is a big operation and I think that it shouldn't be the case,
0:23:43 > 0:23:47but I need to mention this to you but that incidence is difficult
0:23:47 > 0:23:51to give you a figure, but that will be probably less than 1% or 1%.
0:23:58 > 0:24:02OK? Who's going to sign the consent?
0:24:02 > 0:24:06- Yeah.- You want to do it? It's difficult. Oh, there you are.
0:24:08 > 0:24:10OK, so if you sign it there.
0:24:15 > 0:24:18That's fine. It's your son.
0:24:31 > 0:24:35So we're entering the chest wall...
0:24:36 > 0:24:38..and we can feel the tumour.
0:24:41 > 0:24:42OK.
0:24:42 > 0:24:47Now just a sec. Can I have scissors, please?
0:24:49 > 0:24:51I'll do like this in case we need to...
0:24:51 > 0:24:53Can I have that, please?
0:24:55 > 0:25:00So, unfortunately, we may need to take part of the other rib again.
0:25:00 > 0:25:02- Do you see here?- Yeah.
0:25:02 > 0:25:06It's attached to his other rib.
0:25:06 > 0:25:10So I think we should do that - take part of this and take it off.
0:25:12 > 0:25:16So can I have the other bone, er...?
0:25:16 > 0:25:18- Bone cutter?- Yeah, bone cutter.
0:25:20 > 0:25:23The tumour is invading the rib above,
0:25:23 > 0:25:30so we may need to do a more extensive resection than we were thinking...
0:25:31 > 0:25:34..taking part of the other rib as well.
0:25:34 > 0:25:37Yep, it's a little bit stuck.
0:25:37 > 0:25:39It's probably there below...
0:25:39 > 0:25:43So we have to take a bit of the lung out with the...
0:25:43 > 0:25:46- That's good. Ready, Tony, yeah? - Mm-hm.
0:25:54 > 0:25:57So we had to remove a little bit of the lung,
0:25:57 > 0:26:00together with the lesion, but that's fine and it will be OK.
0:26:00 > 0:26:02We just, er...
0:26:03 > 0:26:06..with the lung too - a little bit more work here now.
0:26:12 > 0:26:16After three hours of operating, Professor Pierro removes the tumour.
0:26:19 > 0:26:22- OK? There you are. - Thank you.- Thanks.
0:26:22 > 0:26:25Horrendous operation, I think, this one.
0:26:25 > 0:26:28- In terms of destructive? - It's very destructive...
0:26:29 > 0:26:33..erm, because we're dealing with bones
0:26:33 > 0:26:36and all the operations on bones are a little bit more like this.
0:26:37 > 0:26:42But that's OK, because we removed whatever we could see.
0:26:46 > 0:26:50Once Barnabas recovers from the operation,
0:26:50 > 0:26:52he will need more chemotherapy and radiotherapy
0:26:52 > 0:26:55to give him the best chance that the cancer won't return.
0:26:56 > 0:27:0030 years ago, when people started treating childhood cancer,
0:27:00 > 0:27:01the outcomes were abysmal.
0:27:01 > 0:27:03The outcomes were 20%,
0:27:03 > 0:27:06and now the outcomes are 70%.
0:27:06 > 0:27:09- If you've got any problems, just give us a call.- OK.
0:27:10 > 0:27:13So what has been achieved in the last 30 years
0:27:13 > 0:27:17has been achieved through, you know, hard work, determination,
0:27:17 > 0:27:21trying things that nobody has tried before.
0:27:22 > 0:27:24It's a very difficult situation
0:27:24 > 0:27:27that we find our patients and their parents in
0:27:27 > 0:27:30and it's very important to show them that we can improve things
0:27:30 > 0:27:32and then there is hope.
0:27:35 > 0:27:39So I think that's probably what drives me,
0:27:39 > 0:27:41to try to improve something
0:27:41 > 0:27:44that's not easy to improve, but can be done.
0:27:56 > 0:27:58Did you see moo cows at the farm?
0:27:58 > 0:28:02Two-and-a-half years ago, Luna was diagnosed with a rare brain tumour.
0:28:02 > 0:28:06Since then, she's had numerous operations, chemotherapy
0:28:06 > 0:28:08and radiotherapy.
0:28:08 > 0:28:11She's now four and her tumour continues to grow.
0:28:11 > 0:28:15- Do you want your mummy? - Are we all ready? Ready to start?
0:28:15 > 0:28:19Last week, surgeons made one final attempt to remove it.
0:28:21 > 0:28:25Her doctor, Antony Michalski and the surgical team are reviewing her scan
0:28:25 > 0:28:27to see if the surgery has been successful.
0:28:29 > 0:28:34And you can see that, er, she had a large left frame recurrence,
0:28:34 > 0:28:36which has been resected.
0:28:36 > 0:28:41Er, and now what she has is a new more anterior lesion,
0:28:41 > 0:28:45looks durally based, compressing the brain stem
0:28:45 > 0:28:47or compressing on the brain stem...
0:28:49 > 0:28:53..on the left, which wasn't visible on the previous study.
0:28:56 > 0:29:01I'd rather hoped that, you know, after this last operation,
0:29:01 > 0:29:03it would have been the first time
0:29:03 > 0:29:07where we would have got her into a position
0:29:07 > 0:29:10where she was surgically clear or scan clear.
0:29:10 > 0:29:12She's never been that since we saw her, but...
0:29:12 > 0:29:15You're picking away at something
0:29:15 > 0:29:17which is just recurring again and again
0:29:17 > 0:29:21in areas that, although they may be surgically accessible,
0:29:21 > 0:29:24erm, this is just a, you know, recurrent phenomenon
0:29:24 > 0:29:27and it's not actually treating a tumour, it's treating the scan.
0:29:29 > 0:29:32- One feels one's chasing shadows a bit here.- Mmm.
0:29:38 > 0:29:40OK, thank you very much.
0:29:46 > 0:29:48- Hi, Luna.- Hello.
0:29:48 > 0:29:50Come on, then.
0:29:54 > 0:29:57Erm, it's not as good of good news
0:29:57 > 0:30:01as we'd of hoped, really, I'm afraid.
0:30:01 > 0:30:03OK, how bad is it?
0:30:03 > 0:30:07Erm, well, on the post-operative scan
0:30:07 > 0:30:11I mean, the good thing is that there's a hole where the tumour was
0:30:11 > 0:30:13and that's all gone...
0:30:14 > 0:30:19..but the bad thing is that in a different place,
0:30:19 > 0:30:23there's another new nodule, which is...
0:30:23 > 0:30:25- This is a new one?- Yeah.
0:30:25 > 0:30:27Can you take that one out?
0:30:27 > 0:30:30We talked about that, but putting her through that
0:30:30 > 0:30:34when we know we're leaving bits elsewhere
0:30:34 > 0:30:39I mean, just doesn't seem the right thing to do.
0:30:42 > 0:30:44So what...what can we do?
0:30:45 > 0:30:49We're left with chemotherapy.
0:30:50 > 0:30:51Now...
0:30:54 > 0:30:57..it's what we're doing it for that is the issue.
0:30:59 > 0:31:02I'm not... I'm not going to...
0:31:02 > 0:31:05I'm not in the business of taking away anybody's hope or anything,
0:31:05 > 0:31:08erm, and, of course, I think we all hope and pray
0:31:08 > 0:31:11that we see a fantastic, dramatic response
0:31:11 > 0:31:16and it's maintained, but, you know, that might not happen.
0:31:19 > 0:31:20I'm sorry.
0:31:22 > 0:31:26She was doing so well, she is so well.
0:31:26 > 0:31:28- Mmm.- Do you want to give Mummy a cuddle?
0:31:52 > 0:31:55The chemotherapy that Dr Michalski's now offering,
0:31:55 > 0:31:58etoposide, is highly unlikely to cure her
0:31:58 > 0:32:03but he hopes it will stop the tumour growing and buy her some time.
0:32:05 > 0:32:08It's very unlikely that she's going to be a long-term survivor
0:32:08 > 0:32:10but you never say never.
0:32:11 > 0:32:15I've had patients where it's grown and suddenly stopped
0:32:15 > 0:32:17and ten years later, for reasons we can't explain,
0:32:17 > 0:32:20they're running around fine
0:32:20 > 0:32:23and you don't know who's going to do that and who isn't.
0:32:30 > 0:32:33- You today.- Mmm.
0:32:33 > 0:32:38- And last night and now it's Daddy's day off, isn't it?- Yes.
0:32:38 > 0:32:41Chiane is due to start the second stage of her treatment programme -
0:32:41 > 0:32:43intensive radiotherapy.
0:32:45 > 0:32:47Her doctors meet to discuss
0:32:47 > 0:32:50the possible risks of such high-dose treatment.
0:32:54 > 0:32:59- Yeah, you see, this...- She wouldn't fit into this one either... - ..this is what really worries me.
0:32:59 > 0:33:04What I've read about it is, because you then give a higher fraction,
0:33:04 > 0:33:08you add on even more effect to the tumour
0:33:08 > 0:33:12- but actually we don't know long-term what you do to the brain?- No, yeah.
0:33:12 > 0:33:16- Because we just don't have any follow-up on that, really. - No, we don't. You're right.
0:33:16 > 0:33:20- So you're in a kind of situation where...where you're going to have to treat her very hard.- Mmm.
0:33:20 > 0:33:23And she's going to have lots of late effects
0:33:23 > 0:33:29because she's going to be giving her brain a big old whack, 55 grey of radiotherapy.
0:33:29 > 0:33:35The one's that I've seen that were irradiated very early, then they got pretty significant problems,
0:33:35 > 0:33:37but at the age of five...
0:33:37 > 0:33:39I mean...
0:33:40 > 0:33:45..I think the expectation would be
0:33:45 > 0:33:50that they could live an independent/slightly sheltered life.
0:33:50 > 0:33:53Most of them wouldn't go to higher education or anything like that...
0:33:53 > 0:33:57- Mmm.- ..but they might be... - Happy people?
0:33:57 > 0:34:00..happy and useful members of society,
0:34:00 > 0:34:03and, and, of course, that's the unanswerable, isn't it?
0:34:03 > 0:34:05You've got all the stats of dead or alive
0:34:05 > 0:34:08- and event-free survival and everything else...- I know.
0:34:08 > 0:34:10..and the thing that the parents want to know
0:34:10 > 0:34:12and so often we can't tell them is
0:34:12 > 0:34:15- what's she's going to be like when she's 18?- I know.
0:34:17 > 0:34:20Chiane's parents, Chris and Andia, are also worried.
0:34:20 > 0:34:25They've been doing their own research into the long-term effects of this treatment.
0:34:26 > 0:34:32The children vary from being - shall I say? - "special needs"
0:34:32 > 0:34:35to being in a wheelchair in nappies having to be fed
0:34:35 > 0:34:39and that was the scariest thing I have ever seen in my life.
0:34:41 > 0:34:42And...
0:34:42 > 0:34:46we just needed to know if...
0:34:46 > 0:34:50if there's a chance for her only surviving two years,
0:34:50 > 0:34:53why risk putting her in a wheelchair?
0:34:53 > 0:34:57I really, really wouldn't expect that to be the case.
0:34:57 > 0:34:59You know, I've...
0:34:59 > 0:35:05I've yet to see somebody who's come in... Can you?
0:35:05 > 0:35:07I can't... I can't think of anybody...
0:35:07 > 0:35:10I can't imagine that that would be a scenario.
0:35:10 > 0:35:12No, and remember that I don't know those 18 children,
0:35:12 > 0:35:16but it could well of been that the tumour grew in a very eloquent part of their brain
0:35:16 > 0:35:18and gave them problems to start with,
0:35:18 > 0:35:20that they had high pressure in their heads,
0:35:20 > 0:35:23- which gave them further problems, neuro-surgical issues...- Sure.
0:35:23 > 0:35:27..and, you know, there's loads of things other than just the radiotherapy,
0:35:27 > 0:35:31but radiotherapy of itself, I really don't think
0:35:31 > 0:35:35you should be looking at, erm... long-term side effects of that ilk.
0:35:35 > 0:35:37You know, there are going to be measurable changes
0:35:37 > 0:35:41but not sitting there needing to be fed and in nappies and in a wheelchair.
0:35:41 > 0:35:46I think that would be not really expected at all.
0:35:46 > 0:35:47Yeah.
0:35:47 > 0:35:51We can't take away from you the fact that she will not be the same little girl
0:35:51 > 0:35:54as she would otherwise have been, however,
0:35:54 > 0:35:59I think it's important for you to see what sort of a life
0:35:59 > 0:36:01we're actually trying to aim for
0:36:01 > 0:36:04because if we have the evidence base,
0:36:04 > 0:36:09the type of treatment that we're advising is going to really mean
0:36:09 > 0:36:14that the patient can't have a decent quality of life,
0:36:14 > 0:36:18then actually we won't normally be asked to work in groups
0:36:18 > 0:36:21and write in groups and say, "No, we can't do that."
0:36:21 > 0:36:27- I mean, it is an awful situation... - It is.- ..and we're not trying to minimise the upset of it,
0:36:27 > 0:36:31but if we don't do it, she's not going to survive.
0:36:35 > 0:36:39- We're getting it all ready for you. How are you today?- Good.
0:36:39 > 0:36:42Good, that's what we like to hear.
0:36:42 > 0:36:46Chiane's latest scan showed that the tumour has grown.
0:36:46 > 0:36:50Her radiotherapy dose is going be stronger than originally planned.
0:36:51 > 0:36:55We're squeezed between under-treating
0:36:55 > 0:36:57and her almost certainly dying
0:36:57 > 0:37:01and giving her enough treatment to give her a real chance of cure
0:37:01 > 0:37:05but knowing that she will be damaged because of that.
0:37:08 > 0:37:10There will be a disappointment
0:37:10 > 0:37:13somewhere along the line in years to come
0:37:13 > 0:37:17when she's going through school and other children are excelling,
0:37:17 > 0:37:20which is probably what this little girl would have done...
0:37:22 > 0:37:24..and actually that's going to be our fault -
0:37:24 > 0:37:27that's what we're going to do through this treatment.
0:37:27 > 0:37:34But we know if we don't do it, she won't be growing up.
0:37:34 > 0:37:36You're doing a fantastic job there.
0:37:46 > 0:37:51Seven excess. 43...
0:37:54 > 0:37:57You've already started your treatment.
0:37:57 > 0:38:01Just like we said, you won't feel anything or see anything.
0:38:01 > 0:38:04You're already part-way through. You're doing absolutely fab!
0:38:10 > 0:38:12You're doing really, really well.
0:38:14 > 0:38:16- All done.- OK, we're all done.
0:38:16 > 0:38:18THEY APPLAUD
0:38:18 > 0:38:20Good girl.
0:38:23 > 0:38:24Good girl.
0:38:24 > 0:38:28- Come back down about four.- OK, so... - Let's go. Bye!
0:38:28 > 0:38:32Chiane will receive two sessions of radiotherapy a day
0:38:32 > 0:38:33for the next four weeks
0:38:33 > 0:38:36before she moves on to high-dose chemotherapy.
0:38:43 > 0:38:46Luna's parents agree to put her on the etoposide
0:38:46 > 0:38:49but they have started to look beyond Great Ormond Street.
0:38:50 > 0:38:55They've sought second opinions from other UK specialists
0:38:55 > 0:38:57but none have offered the possibility of cure.
0:38:58 > 0:39:03On the internet, they have found the controversial Burzynski Clinic in Texas,
0:39:03 > 0:39:08which offers an antineoplaston therapy as a treatment for cancer.
0:39:10 > 0:39:15It's basically a concoction of seven different drugs that are given...
0:39:15 > 0:39:18erm, which according to the clinic
0:39:18 > 0:39:22they're not as harmful as chemos that are given here,
0:39:22 > 0:39:25erm, and they've got a much higher success rate.
0:39:25 > 0:39:28Dr Burzynski has run the treatment
0:39:28 > 0:39:31as a clinical trial for the past 35 years,
0:39:31 > 0:39:35but antineoplastons are not approved in the UK or on the US
0:39:35 > 0:39:38for the prevention or treatment of any disease.
0:39:38 > 0:39:41I mean, I don't know what the Burzynski Institute will say
0:39:41 > 0:39:43but if they're running true to form,
0:39:43 > 0:39:46I think they might well
0:39:46 > 0:39:49give them a feeling of hope
0:39:49 > 0:39:53and a feeling of...
0:39:53 > 0:39:56that perhaps, you know, it can be cured in the long-term
0:39:56 > 0:39:59with a sort of good chance and relatively few side effects.
0:39:59 > 0:40:02But it becomes almost impossible
0:40:02 > 0:40:06managing somebody when they're on a treatment,
0:40:06 > 0:40:09the basis of which you don't agree with, the side-effects profile
0:40:09 > 0:40:12of which you don't understand - the antineoplastons.
0:40:12 > 0:40:15It's quite difficult to look after the kids then,
0:40:15 > 0:40:18because you're not sure what to look for, you end up being very reactive
0:40:18 > 0:40:21and it's an uncomfortable situation to be in.
0:40:21 > 0:40:26Great Ormond Street told us she's going to die and there is nothing more that they can offer her.
0:40:26 > 0:40:32So that's fine, but somebody else has said, "Actually we could cure your daughter."
0:40:32 > 0:40:34Who's not going to take that chance, you know, I'd...
0:40:34 > 0:40:38you know, cut my arms off if they said, "We need an arm to save your daughter."
0:40:38 > 0:40:40Of course you'd do it - any parent would.
0:40:50 > 0:40:51They're like gold dust.
0:40:51 > 0:40:53After two months on the etoposide,
0:40:53 > 0:40:57the oncology team want to see if it's stabilised Luna's tumour.
0:41:05 > 0:41:09Erm, the April scan on the left and the more recent scan on the right.
0:41:09 > 0:41:12The angle is slightly different
0:41:12 > 0:41:17but really it doesn't look like there's any change in this lesion.
0:41:17 > 0:41:20- So that's on the left four, then. - Two months.- Two months.
0:41:20 > 0:41:26Would it be fair to say if this can back quite rapidly post-surgery,
0:41:26 > 0:41:28- that it's stable?- Yeah, I think it's stable.- So...
0:41:28 > 0:41:31- I think we've done something. - Exactly, exactly.
0:41:31 > 0:41:35- You know, I mean, if we had growth of a new nodule in three weeks...- Exactly.
0:41:35 > 0:41:38- ..and we've got stable disease in two months...- Exactly.- ..we've got an active agent.
0:41:38 > 0:41:42It looks as if the etoposide is active in this tumour.
0:41:42 > 0:41:47- Yeah, it could be and, you know, she might be one of the 40% to which it is.- That's good.
0:41:50 > 0:41:55I'm hoping that the scans and the discussions will convince them
0:41:55 > 0:41:58to carry on with the treatment
0:41:58 > 0:42:03that seems to be doing the most that you can expect a treatment to do in this circumstance
0:42:03 > 0:42:08but it's a question of marrying up the expectations
0:42:08 > 0:42:13and if they think that this is great, but it's not what they want -
0:42:13 > 0:42:17you know, what they want is me to be saying, "This is fantastic,"
0:42:17 > 0:42:19you know, "We're back on track for cure,"
0:42:19 > 0:42:23then it's managing that expectation and that conversation, I suppose.
0:42:25 > 0:42:28So we looked at scans really carefully throughout three trains
0:42:28 > 0:42:32and we got the new radiologist doing it and they think it's the same.
0:42:32 > 0:42:34- Oh, OK. - So, I mean, if it was doing that...
0:42:34 > 0:42:38and now it's doing this, then something...
0:42:38 > 0:42:41- And the etoposide's OK... - ..is working, yeah.
0:42:41 > 0:42:47- So my vote would be for... to continue the etoposide.- OK.
0:42:47 > 0:42:52- There's loads of things that you could do. - Yeah, but we don't know...
0:42:52 > 0:42:55But we don't know what the results are going to be
0:42:55 > 0:42:59and I know that if we dump them altogether into one big cocktail,
0:42:59 > 0:43:02which has never been tried altogether before,
0:43:02 > 0:43:05- we're not going to have somebody who looks as well as she does now.- No.
0:43:05 > 0:43:10And there's no proof that that's going to be of benefit to her,
0:43:10 > 0:43:13and so it's trying to sort of put something together
0:43:13 > 0:43:16- which is as effective as it can be but is also sensible.- Mmm.
0:43:18 > 0:43:20Yeah, it's how long for, isn't it?
0:43:20 > 0:43:24- Sure, absolutely. Nobody can predict that.- No.
0:43:24 > 0:43:26We can all hope but we can't predict.
0:43:26 > 0:43:30- You're a bit of a mystery, aren't you, Luna?- She is really.
0:43:30 > 0:43:31Yeah, definitely, will do.
0:43:31 > 0:43:33The etoposide is working
0:43:33 > 0:43:37but Lucy and Mario are determined to find a cure.
0:43:37 > 0:43:41Lucy has started fund-raising for Luna to go to the Burzynski Clinic.
0:43:41 > 0:43:45So what needs to be done in order for her to get this treatment?
0:43:45 > 0:43:48All we need to do, not "all"... We need to raise £100,000,
0:43:48 > 0:43:51which is £20,000 for the initial assessment,
0:43:51 > 0:43:55but they want to do their own MRIs and tests, just to make sure she's a suitable candidate,
0:43:55 > 0:43:56which we're pretty sure she is
0:43:56 > 0:44:00and also that her body can tolerate certain levels of drugs
0:44:00 > 0:44:02and then once she gets accepted,
0:44:02 > 0:44:05we need a further £80,000 for the drugs for the year.
0:44:07 > 0:44:10I'm sure Ski's not going to be very happy but I know,
0:44:10 > 0:44:12I know he'll understand why.
0:44:12 > 0:44:17But from a professional point of view, I know he doesn't agree with the treatment.
0:44:17 > 0:44:20So I don't expect him to say you know, go.
0:44:20 > 0:44:25But he's not going to give us our blessing but I'm sure,
0:44:25 > 0:44:28he's a really nice person, I'm sure he'll understand why we're doing it.
0:44:28 > 0:44:30You know, there's no other option.
0:44:30 > 0:44:33If he if he could have told us something else that he could try,
0:44:33 > 0:44:38I would definitely try that rather than going out there
0:44:38 > 0:44:41because it would be here and it would be free
0:44:41 > 0:44:44and it would be the best place for us to be.
0:44:44 > 0:44:48But there isn't anything so that's why we're going.
0:44:56 > 0:44:58Lucy and Mario raised enough money
0:44:58 > 0:45:01to have an initial consultation at the Burzynski Clinic.
0:45:01 > 0:45:05They've been told that Luna is eligible for treatment.
0:45:05 > 0:45:08Hiya! Looking very tanned.
0:45:08 > 0:45:12And they've come to tell Dr Michalski they're going ahead.
0:45:12 > 0:45:14Luna how was your holiday?
0:45:14 > 0:45:17- Did you have a nice holiday? - Did you have a nice time?
0:45:17 > 0:45:19Did you go swimming?
0:45:19 > 0:45:24What were you told would be the outcome measures of this?
0:45:24 > 0:45:26Like the evidence base and all that sort of stuff?
0:45:26 > 0:45:31- He said he'd had some good results with it.- 30% chance of it.
0:45:31 > 0:45:37He said 30% of people have a good reaction, whether it's stable or it's shrinkage.
0:45:37 > 0:45:41- And I know how you feel.- What's that? - I know how you feel about it.- Ah!
0:45:41 > 0:45:43I know. He's the only person who's said something.
0:45:43 > 0:45:48- I know that is part of their thing. - Yeah.- You know, but...
0:45:48 > 0:45:51You know, I suppose what I'm struggling with is that
0:45:51 > 0:45:54when you come back she's going to be on a treatment which
0:45:54 > 0:45:57I don't understand, the toxicity of which I can't interpret
0:45:57 > 0:46:02and it's going to be difficult for me to know how to look after her.
0:46:02 > 0:46:06- Yeah, I know that.- And it's... - I know that, I know that.
0:46:06 > 0:46:09You know, and if I genuinely believed it was going to work,
0:46:09 > 0:46:13- then I'd be wishing you well. - You don't genuinely know it won't.
0:46:13 > 0:46:17Well, if you haven't got the info and you're asking me
0:46:17 > 0:46:20a scientifically honest question, "Can I prove it doesn't work?"
0:46:20 > 0:46:23- Well I can't prove it cos I haven't got the information.- Yeah.
0:46:23 > 0:46:26But actually is there anything in the method of action
0:46:26 > 0:46:29which gives me any idea that it should work? Nope!
0:46:29 > 0:46:33There isn't. So I mean I am in a difficult situation with it.
0:46:33 > 0:46:38The only time I've actually seen a response in somebody on this, they've also been on the Etoposide.
0:46:38 > 0:46:40And we know Etoposide works sometimes.
0:46:40 > 0:46:43- But we can't stay on Etoposide. - No, you can't.- That's the thing.
0:46:43 > 0:46:48There's families we've been in contact with on the Ependi Care website that are at Burzynski
0:46:48 > 0:46:51and there are a lot of kids that have been on Burzynski
0:46:51 > 0:46:52- that are doing really well.- Yeah.
0:46:52 > 0:46:55That's not just to say they wouldn't have done well,
0:46:55 > 0:46:58we don't know that, but to keep reading about these,
0:46:58 > 0:47:01I mean the treatment itself does sound horrendous, you know,
0:47:01 > 0:47:04the actual giving of it and the pump she has to be hooked up to
0:47:04 > 0:47:08all the time and things like that, but if it works...
0:47:08 > 0:47:12As a parent, if someone is offering you a glimmer of hope,
0:47:12 > 0:47:15because Etoposide, as far as we're concerned is palliative
0:47:15 > 0:47:18and causes leukaemia so she can't stay on it for 2 or 3 years.
0:47:18 > 0:47:21- No, she can't.- So it means we could have a year of being stable.- Mmm.
0:47:21 > 0:47:24- And then what?- Well, the hope is of course it'll have done something
0:47:24 > 0:47:27to the tumour that keeps it stable forever.
0:47:27 > 0:47:30What percentage of patients is that going to happen in?
0:47:30 > 0:47:32A very small percentage. I can't...
0:47:32 > 0:47:34- It does happen sometimes? - Well, occasionally it happens.
0:47:34 > 0:47:41It's down at the kind of, you know, very, very rare end of the spectrum
0:47:41 > 0:47:47and I don't want you to be so into the concept of a chance of cure
0:47:47 > 0:47:50that we actually lose track of her on the way.
0:47:50 > 0:47:53- No, we're not. We're not. - Yeah.- Are we?
0:47:55 > 0:47:58- Cos she's been great over the last few months.- Mmm.
0:47:58 > 0:48:01- Really, really good.- That's why it's probably harder, I know.
0:48:01 > 0:48:03I know.
0:48:05 > 0:48:08What you hear quite a lot is, "If there's one chance,
0:48:08 > 0:48:12"how do we know that he or she is not going to be the one?"
0:48:12 > 0:48:17You know, and the phrase that makes my heart sink is,
0:48:17 > 0:48:20"We'd never forgive ourselves if,"
0:48:20 > 0:48:22and actually it's not about them forgiving themselves,
0:48:22 > 0:48:26it's about them doing the best for their child.
0:48:26 > 0:48:30You know? Erm and, and the focus really should be on what's
0:48:30 > 0:48:34happening for the individual child rather than the parental emotions.
0:48:34 > 0:48:36And it's tough because it's so understandable
0:48:36 > 0:48:39I, thankfully, have never been in that situation
0:48:39 > 0:48:43but it's so understandable that you're going to do everything
0:48:43 > 0:48:46in your power to hunt down the last chance of cure.
0:48:46 > 0:48:51But where that becomes a futile exercise is a difficult call,
0:48:51 > 0:48:53a difficult line.
0:49:08 > 0:49:12After four weeks of radiotherapy, Chiane is back in for a scan
0:49:12 > 0:49:15to find out whether the treatment is working.
0:49:24 > 0:49:27It's actually looking really good.
0:49:28 > 0:49:32This is where the lesion was.
0:49:34 > 0:49:38It's looking really nice and clean.
0:49:41 > 0:49:43What I'm seeing at the moment is a scan
0:49:43 > 0:49:48which is showing where the tumour was and where it's been taken away.
0:49:48 > 0:49:53So looking at that, it's as good as it gets.
0:49:55 > 0:49:59Chiane's scan means that she's now eligible for the next step,
0:49:59 > 0:50:02a very toxic high dose chemotherapy.
0:50:03 > 0:50:06We'd already discussed you know, what do we do if it's better
0:50:06 > 0:50:08if it's the same or if it's worse?
0:50:08 > 0:50:11And we're in the very fortunate position
0:50:11 > 0:50:13of being able to say it's better.
0:50:13 > 0:50:17We're very pleased with the results of the MRI.
0:50:17 > 0:50:20- It's a good start. - It's great start.
0:50:20 > 0:50:25What that means is that we are still trying to treat her curatively,
0:50:25 > 0:50:30but standard chemotherapy carries a risk,
0:50:30 > 0:50:33high dose chemotherapy carries a higher risk.
0:50:33 > 0:50:37Where it becomes really hard today is that
0:50:37 > 0:50:44nobody has proposed a treatment that COULD actually kill her.
0:50:44 > 0:50:50And that's where I think this high dose is so frightening,
0:50:50 > 0:50:54because we will do everything we can to get her through.
0:50:55 > 0:50:59But if you both agree then we go into it as a team.
0:51:01 > 0:51:04- OK.- And we do everything we can to support her through it.
0:51:06 > 0:51:10We decided from the word go that we're going to do everything
0:51:10 > 0:51:14we can because it's just it's easy to say,
0:51:14 > 0:51:18"Well no, let's stop now," but then in a year's time,
0:51:18 > 0:51:23- we might turn round and go, "What if we did high dose?"- Yeah.
0:51:23 > 0:51:28- What then? - To stop now would be insane.
0:51:35 > 0:51:38The awful truth is this is the situation we're in.
0:51:38 > 0:51:41We are making a decision for a child and it's what
0:51:41 > 0:51:46we do all the time but it's ghastly when you think about it.
0:51:48 > 0:51:51Because you're making the decision to put a child
0:51:51 > 0:51:53through something that you don't want to have to do
0:51:53 > 0:51:56because they've got this horrible thing.
0:52:00 > 0:52:03I've seen too many children die of cancer
0:52:03 > 0:52:08and I've seen too many children die of toxicity
0:52:08 > 0:52:10and it weighs very heavily.
0:52:10 > 0:52:15You know, you know what you're asking them to say yes to
0:52:15 > 0:52:18and you know what the risks are.
0:52:18 > 0:52:21So I feel quite humbled by it all really, now.
0:52:31 > 0:52:35After three weeks of treatment at the Burzynski Clinic
0:52:35 > 0:52:38Luna has returned to Great Ormond Street.
0:52:41 > 0:52:45Firstly, how is she? She doesn't look great.
0:52:45 > 0:52:50Yes. She started on the treatment and she was fine.
0:52:50 > 0:52:52So then the next day at the apartment,
0:52:52 > 0:52:55she just slept all day. Yeah
0:52:55 > 0:52:58And she looked gray and her eyes were just rolling.
0:52:58 > 0:53:01I was scared she wasn't going to wake up cos she just didn't look right.
0:53:01 > 0:53:04- Mmm.- So we took her to, we took her to the emergency room
0:53:04 > 0:53:11and her sodium was 178 and her potassium was 1.2, I know.
0:53:13 > 0:53:16So the left side of her face on day two completely went.
0:53:16 > 0:53:19I mean, way worse than it is now,
0:53:19 > 0:53:21dropped down and she was just drooling.
0:53:21 > 0:53:23We were suctioning her every couple of minutes.
0:53:23 > 0:53:25They did an MRI and it came back
0:53:25 > 0:53:29and it was horrible it showed I mean the brain stem was like that.
0:53:29 > 0:53:31It was crushing it, it had enlarged it had grown by 15%
0:53:31 > 0:53:35and she's obsessively like, "I need a drink!"
0:53:35 > 0:53:40But what I've noticed is that she's like weeing ridiculously,
0:53:40 > 0:53:44even when I'm not pumping the water into her.
0:53:44 > 0:53:47You don't get a sodium of a 170 unless you...
0:53:47 > 0:53:48In one day. The day before it was OK.
0:53:48 > 0:53:52Unless you've peed out pure water in huge volumes. So you know...
0:53:52 > 0:53:55- She was.- She had either far too much salts gone in and I don't know what's in...
0:53:55 > 0:53:59- Well it has.- The fact that she's still walking around and switched on
0:53:59 > 0:54:05is pretty astonishing because that's a pretty, pretty sporting sodium.
0:54:05 > 0:54:07I know, I know.
0:54:07 > 0:54:09But I don't feel comfortable you just going home
0:54:09 > 0:54:13and having the occasional blood test at home at the moment.
0:54:13 > 0:54:15- I think, I think we need to be on this.- OK.
0:54:17 > 0:54:19If it is the treatment that's doing this,
0:54:19 > 0:54:23you have to make a decision about whether you think it's worth
0:54:23 > 0:54:25- carrying on or not?- Yeah.
0:54:25 > 0:54:27And I think you know my feelings on that one.
0:54:27 > 0:54:29I do know your feelings on that,
0:54:29 > 0:54:31and we saw amazing results on this stuff over there
0:54:31 > 0:54:35with the kids that just picked up and that's what's so hard.
0:54:35 > 0:54:38You know, I know everyone's sceptical about it
0:54:38 > 0:54:42but things that we saw, kids that came in like dribbling messes,
0:54:42 > 0:54:46not even able to walk and in two weeks were like running around.
0:54:46 > 0:54:49We're kind of damned if we do and damned if we don't really, aren't we?
0:54:49 > 0:54:51Cos we know it's growing. You know?
0:54:53 > 0:54:56We know that her long-term future is....
0:54:56 > 0:55:00Well, she hasn't got a long-term future, really.
0:55:01 > 0:55:04We don't know that she's really going to, erm,
0:55:04 > 0:55:08we'll lose her if the tumour is as big as and growing as fast
0:55:08 > 0:55:13as, erm, we think it is, but it's how that happens.
0:55:21 > 0:55:25Lucy has asked Dr Michalski to review Luna's most recent scans
0:55:25 > 0:55:28and see if another operation is possible.
0:55:28 > 0:55:33Dominic's been in a few times and it is a very difficult operation.
0:55:33 > 0:55:35What would we be achieving by say trying to take half
0:55:35 > 0:55:37or three-quarters of the peripheral region?
0:55:37 > 0:55:42I don't think any neuro-surgeon would go for the intra brain stem lesion.
0:55:46 > 0:55:48The difficulty is that she's got this thing
0:55:48 > 0:55:51growing into the centre of her brain stem
0:55:51 > 0:55:53and the best way of imagining it,
0:55:53 > 0:55:57it's like a really high definition fibre optic cable
0:55:57 > 0:56:01where a millimetre or two is hundreds of nerves you know?
0:56:01 > 0:56:06And so it's the growth into that area that's the issue.
0:56:08 > 0:56:12'OK. Well it's not great, is it?
0:56:12 > 0:56:14'Any suggestions?
0:56:14 > 0:56:18'Anything we can try medication-wise, your end?'
0:56:18 > 0:56:22Well, I think it in terms of it all depends what we're trying it for?
0:56:22 > 0:56:25- Erm, if we... - 'Time, really.'
0:56:25 > 0:56:28- Time? Well...- 'I guess.'
0:56:30 > 0:56:34- Yeah.- 'We've run out of cures haven't we?'
0:56:34 > 0:56:36Yes. I mean...
0:56:38 > 0:56:41Have you accepted that completely?
0:56:41 > 0:56:42Cos if you have I was wondering
0:56:42 > 0:56:45about the continuation of the Burzynski thing?
0:56:45 > 0:56:48Well, I don't know because if we get time
0:56:48 > 0:56:50maybe Burzynski could work, couldn't it?
0:56:53 > 0:56:55Yeah.
0:57:00 > 0:57:03There comes a time when you know that realistically,
0:57:03 > 0:57:07children in a given situation are unlikely to be cured.
0:57:07 > 0:57:11Where it'll be a miracle if they got through it.
0:57:15 > 0:57:20So hopefully, sticking with them and being there for the child
0:57:20 > 0:57:24and the family, sort of walking the walk with them, if you like,
0:57:24 > 0:57:28lets them know that you've got their child's best interest at heart.
0:57:28 > 0:57:31- Hello.- Hello, how are you? Good to see you.
0:57:33 > 0:57:36But you desperately want nobody else to go through that again.
0:57:36 > 0:57:40And the motivation to try and understand the disease better,
0:57:40 > 0:57:42change the treatment appropriately,
0:57:42 > 0:57:46tailor it better, comes from when you haven't won.
0:57:52 > 0:57:55- You don't like it? You don't like your fire truck?- No.
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