Great Ormond St

[minxthemanx]

Am going to try to watch, but DS was in Intensive Care there last year, so I may find it too close to home. What a place.

It will be on Iplayer.

Both Luna and Chiane have websites.

Do you have access to Iplayer,SharpObject? It's available on there.

wannabe - Burzynski is a quack, and I find it awful that the makers of this program have not made that more explicitely clear.

www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-antineoplastons-and-the-orphan-drug-sodium-phenyl-butyrate/

www.quackwatch.org/01QuackeryRelatedTopics/Cancer/burzynski1.html

www.guardian.co.uk/commentisfree/cifamerica/2011/nov/30/burzynski-clinic-cancer-libel-laws

With a k not a c but I'm sure he googles his name!

Not the same person so I've reported my post

Oh, I forgot Marc the Attorney and shall govern myself accordingly.

But seriously, before you consider donating towards this quack's "treatment", read what Cancer Research have to say. It's heartbreaking, seeing what happens to these children, and it's sick that Burzynski has been exploiting heartbreak like that for so long.

I can't understand how so called 'doctors' such as Burzynski,who exploit such vulnerable people can sleep at night,though I know that they don't give a toss about anything but money.

I watched this earlier, it was heartrending. Those poor children and their parents :(

I wasn't sure whether to watch it but am so glad I did. We are so lucky that there are people willing to train to be doctors and perform these life saving operations.

sadly there's always someone who will promise miracles in order to gain notariety (sp? and more importantly, money.

I imagine the programme makers had to walk a very fine line re how they covered this particular treatment, although they were very specific in saying that he has been running it as a trial for the past 35 years and also that the treatment types were unlicenced in both the UK and the US. Although if they're unlicenced in the US I don't understand why he hasn't been shut down?

I wonder whether the fact that this programme focused on just how ill the little girl was after the treatment had anything to do with them saying she wouldn't be suitable for any more of the same treatment.

wannaBe I agree with you about fine line walking.
I saw this programme, bloody sad but inspiring too. The doctors are phenomenal. It must be excrutiatingly hard for them, not just the parents.
I was saddened to see from the link posted by Bisjo that Chiane is trying to go the charlatan's clince.

totally wonderful programme- I was worried about watching it but was glad I did. Amazing paediatric oncologists. Awful quack money grabbing 'doctors' in the US

What get's me is so many of the Drs sem to have English as a second language. Imagine having to learn medical vocabulary in another language. Wonderful people.

Can I just point out that for anyone affected by childhood cancer there is a support thread here on Mumsnet:

m.mumsnet.com/Talk/childrens_health/1368190-Children-with-cancer

Also that these doctors do a wonderful job on meagre resources. There are charities which support the amazing UK research and international collaborations that are helping to fight childhood cancer, which is currently dropping into second place as the biggest killer of children in the developed world. Please see these sites if you are moved to help:

www.cclg.org.uk
www.clicsargent.org.uk
www.childrenwithcancer.org.uk

In the programme it called childhood cancer a "rare" phenomenon. It may surprise you to hear that one in every 330 children will receive a cancer diagnosis before their 20th birthday. Ten thousand are currently undergoing treatment. This does not feel rare enough for me! Ten children are being diagnosed in the UK today and every day. Each day we lose another three of them. Please do all the children you know a favour and visit this site to educate yourself on the signs and symptoms:

www.bechildcanceraware.org

Lastly, you can directly help provide lifesaving treatment to these children, just give blood, and while you're there, sign up to, the bone marrow donation register. If you're having a baby at one of the centres which allow this, donate cord blood. My DD is only here today due to the kindness of her 21 blood donors who allowed her to receive enough chemotherapy to go into remission from leukaemia, where she remains today, six months after her gruelling two years of constant chemotherapy was completed.

I do not wish to diss the above post in anyway whatever but I do wish to question your figures.

The UK statistics for 2006-8 put the number of children diagnosed with cancer / year at 1500/ year. That is 4 diagnoses per day. The number of cancer deaths over the same time period (in children < 16 years) was 260 /year. The number of children in the UK population in 2007 was 12 million.

So IMO childhood cancer is rare but for those it affects totally devastating. Huge advances have been made in it's treatment - in the late 1960s 20% of children survived now almost 80% do but there is lots of work to be done.

There is a lot of information about the epidemiology of childhood cancer on the cancer research site.
info.cancerresearchuk.org/cancerstats/childhoodcancer/

If you are going to donate don't forget the charities who provide support for these families - Ronald McDonald Houses, Macmillan and the Teenage Cancer Trust are all active and have not been named above.

Your stats are bang on, gasman, for children up to the age of 14 and that is a great site for information. However, older teenagers are not included in those statistics and as I understand it there is another spike in cancer incidence in teenage years that brings the overall figures up. Since I know I will consider my DD to be a child well beyond the age of 14 I used the figures I had seen for the wider age range. I apologise if I did not make it clear that my figures included all teenagers, and the 10,000 I quoted is not the figure diagnosed in one year, but the approximate cumulative number of children and teenagers in treatment, including those diagnosed years ago but still in initial and relapse protocols years after initial diagnosis. I obtained my figures from www.bechildcanceraware.org.uk/child-cancer-info/child-cancer-facts/ . Also, I see you are correct that the latest figures show that it is now approximately 80% survival up to five years after diagnosis so apologies for that error. The charities you mention are also very good, the Teenage Cancer Trust's work building dedicated wards for teenagers suffering from cancer is phenomenal and I can only hope they will receive enough funding eventually to build a dedicated area for teenagers in every specialist paediatric oncology centre. My point about rarity really was meant to be that in my experience people tend to think of cancer as something that happens to one in a few thousand children, rather than one in the population of every large school, so a lot less rare than many are aware of. As early diagnosis can save lives I do feel it is important that people do consider it as a real if unlikely possibility and seek medical attention where their child shows relevant symptoms so I wonder what message is given by the word 'rare' without figures as it is a very arbitrary term which means different things to different people.

There are still many people who simply think that children do not get cancer.

yy to www.tct.org.uk

If anyone would like to support their work I am doing a sponsered run in july (it says end of may on my page but it is now 8th July).

I have already had amazing support from MN. I just did some cycling training whilst watching the GOSH programme.

anyway. If you feel able to sponser me, please do. Thank you.

www.justgiving.com/Billiegirl

I watched the second half. Dh couldn't watch it. I saw one of Dd's consultants there briefly (he was doing the op on the little boy).

Dd was seriously injured last year and spent 2 months in intensive care. I watched my beautiful girl go from critically I'll to getting better to home. It took every ounce of strength, I can't imagine how parents deal with the other way round.

But I guess, like every shit thing that happens, you do find the strength and carry one because you have no choice.

Bulletproof, I've been there and done it, like you, at Great Ormomd St. It is impossible to describe how difficult it is - but I hope you found the staff and hospital as wonderful as I did. Glad you had a happy outcome.

I'm another ex-GOSH mum. My Ds was there 9 years ago with kidney failure. They probably saved his life. The hospital and staff were great.

I love GOSH I am an Ex patient

Mrs DeVere, you should be publicising this more. I've given what I can afford, I wish it could be more.

Thank you for your donation rip. It is very much appreciated

Not at all, as I said, you should have this somewhere people can see it.