AIBU to not like the petition about childhood cancer.

[Lonelymummyof1]

so child hood cancer is so devastating and no child of family should ever have to go through it.
I am no way saying that childhood cancer is not important.
Recentlty there has been a petition that has gone viral so I know I will be the worse human alive on here for saying it but the petition is to

" make childhood cancer the foremost inportance of the NHS "

Now I have a daughter who has a life limting / threatning disease so maybe I am sensitive.

But I believe there should not be a foremost importance and that childhood diseases should all be just as important as one another.

Each child battling a life threatning condition should not be any less important to the NHS depending on disease.
Research should surely be fair and treatment to ?

So if you are fundraising for childhood cancer you need to be very specific about where you donate it?

If you are fundraising for CRUK, that's certainly true.

Brain tumour funding is woefully underfunded. I only give to specific charities now like brain tumour research or the brain tumour charity as at least I know it is going to the cause I want. (My husband died of a brain tumour at 50) I am also getting involved in raising money for pancreatic cancer having lost a member of my staff after 3 months to it and a colleague died this week of the same thing after 6 weeks ill health.

I guess childhood cancers get relatively little funding because childhood cancer is relatively rare. The majority of cancer occurs in adults, for obvious reasons.

It's time sensitive, too. If you don't treat the cancer in paeds right away, they die very, very quickly. Blood cancers are especially swift because they overwhelm the immune system and the CNS, there is no tumour to target, it's all over the place. My daughter was days away from death when she was admitted. She was sceptic from having an immune system full of myeloid leukaemia.

The treatment very often causes disability and death from it is not uncommon. The disabilities can be severe and permanent, particularly with brain cancers and/or require limb amputation.

And since the treatment is carcinogenic, many survivors of paediatric cancer go on to develop secondary cancers in adulthood or adolescence, which are then commonly resistant to treatment. A significant percentage will also relapse, and again, at that point, treatment is more apt to fail or there is no treatment.

Although 'rare', it is increasing in diagnosis in paeds.

1 in 330 children will get cancer. I wouldn't call it rare. My own daughter was diagnosed with acute lymphoblastic leukaemia at 4. We were 'lucky' that hers was the success story of childhood cancer, but even so 10% of children with ALL will die.
Other childhood cancers, DIPG, for example have a zero percent cure rate. Neil Armstrong's daughter died of this in 1962. Since then, man has gone to the moon but the death rate for this type of brain tumour has remained 100%.
It's generally accepted that childhood cancer gets about 4% of research funds, but last year it was only 1.6%. An absolute disgrace when you consider how quick CRUK are to use children in their advertising campaigns.

I think I accept / expect Cancer & in turn children's cancers to get priority/ focus on funding - they (charities & NHS) have to have some priorities as there needs to be a focus & not enough money to go around.
My DS has a genetic, life threatening disease but I don't expect his condition to be the NHS's priority as it's a numbers game & more children are killed by cancer so this is their focus. It's just inevitable, not fair but anyone, child or not, who has an incureable disease has experienced the sharp end of not fair.

Yanbu.

I am the parent of a life limited child who has serious complex congenital heart defects. It is the biggest paediatric killer but is woefully under researched, underfunded and under publicised yet affects 1in 110 births.

I would worry that if one tragic childhood disease is pushed as 'the number one priority of the NHS' what happens to the rest? Are they pushed aside? They all deserve the same attention and resources.

True, the biggest risk factor for cancer is age. People don't like to admit that truth. My father has had prostate cancer twice, but he is nearly 81. This second time he had a trial treatment, but he could not have any sort of aggressive treatment because he has a heart condition and hard to control blood pressure. Still, as he said, I wasn't fucking 8-years-old.

'Other childhood cancers, DIPG, for example have a zero percent cure rate. Neil Armstrong's daughter died of this in 1962. '

And 55 years on, it still has a zero percent cure rate.

I'm so glad your daughter was in that 90%, Lab. Very glad. I have friends whose children fell into that 10%. Many of them are infants or adolescents. It behaves differently in infants and adolescents and in children who have Down's Syndrome (it is also more common in children with Down's Syndrome).

You could go all over with this. Suicide is a leading cause of death in adolescents and young adults, but funding for mental health conditions is being slashed everywhere.

Re reading this www.alzheimersresearchuk.org/new-study-shows-funding-for-dementia-research-still-too-low/
it seems like the argument is to fund whatever is costly if you do not fund it. "the combined health and social care costs for dementia totalled £11.6 billion – more than cancer (£5bn), stroke (£2.9bn) and heart disease (£2.5bn) combined."

So it sounds like "fund research into dementia because it costs a lot if you don't"?

As someone who spent their late teens/ early 20s recovering from an extremely rare cancer I can assure you there's nothing sexy about it. Especially all those rehab sessions that I spent sweating and crying whilst trying to walk on my new false leg.

Cancer is the main serious disease in children, but it is still extremely rare (thank god) and so many more adults will die of cancer than children do; and that is why adult cancers are better funded.

However, it is very well known that children and, in particular teenagers and young adults, have an increased chance of their cancer being diagnosed late. Luckily (I use that word loosely) this is something that parents of children who nave/have had/died from cancer can help with - raising awareness of symptoms and sharing stories and so helping other children be diagnosed earlier.

Well that makes sense doesn't It? If the country is spending £££ caring for people with dementia, then that's a lot less money available to treat other things.

A poster above said 1 in 330 children get cancer. The figure I was told for adults was 1 in 4. Obviously we all have to die of something but this is one reason the funding is divided up the way it is.

Thank you expat She is 3 and a half years post end of treatment, so I'm not complacent as know of children who relapsed after this. Relapsed ALL is the 4th most common childhood cancer and the odds are only about 50% if a child does relapse.

I'm so sorry about your daughter. I followed her story, as our friend's son was going through AML treatment at the same time. Ultimately his too was unsuccessful.

When I say 'lucky' I just mean that ALL has benefited from research that has seen its survival rate increase massively. All childhood cancers should be given that chance.

I'm so sorry, zee. It is 'rare' but not extremely so, and diagnoses have definitely increased. And yes, MANY are diagnosed late and so indeed, further training of GPs to spot the signs, too, is paramount. We were 'lucky' in that our GP was an old one. He had seen several cases of leukaemia in his career, so when our daughter presented with that classic paetichae bruise indicative of cellulitis, but with no break in the skin, no bite, no cut and all her jabs up to date, alarm bells went off in his head. He prescribed high dose oral ABs but made an appointment for her to come back in first 24 hours later, then the next day after that, a Friday morning, first thing. And (we are very rural) called for an ambulance to take her to the nearest children's hospital, some 2 hours away, and rang the haematology department, our lab having a 48-hour return on bloods, with his suspicions. I thought it was overkill, but went along with it because he seemed to find it necessary. It was. She was in the onco unit in hours with IV ABs, sceptic. Her cons came in, 'I dread to think what may have happened had he left it over the weekend. I think she'd have died.'

I know countless families who live with extreme amounts of guilt, having been fobbed off, and what if's that will never be answered.

Based on averages, but an adult who dies from cancer loses 15 years. A child loses 71! So despite fewer children than adults being diagnosed, in terms of lives lost the impact on children is far greater.

Just to add, my daughter was one of 3 with ALL at our GP practise, and ten months after she was diagnosed, a little boy at nursery with her, was diagnosed with stage 4 neuroblastoma. Thankfully he is also doing well.

Zeezeek - "Cancer is the main serious disease in children" This is wrong. I think the incidence of childhood cancer is 1 in 500 (not sure where the 1:330 comes from).

Type 1 Diabetes, for example has a slightly higher incidence rate, but a much higher prevalence because it is incurable. In the teen group it has approximately the same mortality rate c. 40-50 p.a. I don't have figures for death rates amongst the younger age group.

Expat - I'm so sorry for what happened to you. I think the problem is that most GPs only see very few cases of childhood cancer in their career and I fully believe that in most cases, for both adults and children, they just don't think cancer quick enough (I have done some research in this in the past). So although funding for better treatment of childhood cancers is important, for the children that are being diagnosed too late now - it is imperative that GPs increase their awareness and think about cancer sooner.

T1mum - I purposefully didn't quote any stats because I'm not sure of them. But if we think about childhood diseases and illnesses I'm pretty sure that even if cancer isn't the biggest killer, then it is one of the most serious.

However, it does no one any good to fight over which disease is worst and fund accordingly, does it.

Care for children with type one diabetes is appalling with only 6 per cent of children managing to achieve NICE guideline target outcomes.

Any group is going to want to spare their child suffering and all cancer is horrendous.

But OP YANBU to think that one disease group should not be prioritised over another.

Why is this a race to the grave? This is not a progressive disease in most children, it is acute and aggressive and necessitates swift and often highly invasive or toxic treatment, it's the nature of the beast, so to speak. That eats up huge resources. It necessitates a large degree of specialised treatment. I even had people I met from other units grumble to me that we were 'lucky' to have a private room with ensuite, that they had to be in a ward. This was because my child had no immune system following every round of chemo, and each round was all-inpatient, there was no other way round it. You couldn't have a child receiving such toxic treatments in a ward where others could be exposed to it, same as those undergoing certain rounds of radiotherapy - they were a fucking biohazard! The nurses had to come in with full gear in pairs to handle those drugs.

I even had people grumble to me when she was in ICU. 'Well, at least you got a side room, we have to be . . . ' For real?! She was in a side room because she had no immune system. No special treatment, children who have no immune system or certain diseases (the boy next to her had E.coli) are in side rooms. She died in that room.

Zeezeek - according to Children with Cancer UK, cancer (which is obviously a group of different types) is the biggest killer of children. I totally accept that. I'm just pointing out that there are other, incurable serious diseases out there with higher prevalence and poor outcomes.

Some types of childhood cancer have a 100 per cent survival rate. Type 1 diabetes has a zero per cent cure rate. It's complete organ failure and requires 10 blood tests a day and six injections a day on average. It's serious.

I'm going to admit something terrible. I went to a Teenage Cancer Trust gig and I cried myself sick. I hated myself because I was jealous of the support the youths with cancer were getting. That's not nice and it's not right. But children with type one diabetes go to bed every night not knowing if they will wake up in the morning. Every single night for the rest of their lives. And they and their families rarely get counselling or support.

I know that sounds horrible. I recognise that I'm lucky that my child gets the chance to live even with constant monitoring and treatment and that children rarer forms of cancer don't get that opportunity.

But that's the sort of thinking that happens when you start saying one group of diseases is more important than another condition.

So OP is not BU.

It's 1 in 330 before the age of 20.