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 ?

Children can be placed on trial ... of course they can. I know of 100s who've been on trial including my own child.

Not with a brand new drug not trialed in adults.

Doublesnap - it's really, really hard.

T1Mum3 it is, as is supporting anybody with a chronic/life limiting/terminal illness. to anybody who is.

YANBU. Cancer in children is dreadful and I wouldn't wish it on my worst enemy. But their are other equally life limiting/threatening illnesses that don't get the funding or publicity. Cancer wards get the best facilities abs teenagers with cancer get their own wards. What about the other teenagers who have to spend months on wards full of babies and toddlers. They get very little in the way of support. Their parents have to sleep with them on the wards as they are not allowed to have access to the large house for oncology parents across the road. for anyone who has lost a child from any illness.

Toddlerteaplease, that is certainly not the case everywhere. My son's treatment was all on a general paediatric ward with no big house opposite. I'm not entirely sure that would have made it any more pleasant to be honest. We did have private rooms for oncology patients, but - like with dedicated wards - that wasn't because they were seen as more special than other children, but because they had no immune system and needed to be in isolation in order to protect them from others.

This thread is so difficult to read. My ds finished treatment for high risk neuroblastoma but still is in hospital monthly with one side effect or another. He was 11 months when he was diagnosed and his consultant has been very open with us that we don't know what the future will hold. If he doesn't relapse (which is highly likely and incurable), he is likely to suffer a litany of side effects throughout his life. If he doesn't get another cancer due to his treatment, he is likely to have cardiac, renal and lung issues as he grows. We are not in the UK but the situation with research funding and available supports compared to adult cancers is the same.

From a purely economic perspective it makes sense to dedicate research to developing new paediatric meds and treatments as the lifelong side effects are exorbitant. From an ethical perspective, it is simply wrong to give babies drugs designed for fully grown adults with no real understanding of the damage it can do. From a mother's perspective, I remember wishing he would get any diagnosis other than this. In our time in ICU we met parents dealing with so many horrible, life shattering events that I realised how little I knew about other conditions.

We had a single isolation room for him to keep him alive, it wasn't special treatment. It was essential treatment. And yes I think all immunocompromised children with other conditions should get them too.

Just don't sign the petition but make sure you get your facts right before adding to misinformation and a general misunderstanding that paediatric cancers are well resourced, well understood or easily curable. Because they are not.

YANBU. I wouldn't sign for the reasons you give.

Toddlerteas very few hospitals have teenage cancer units.

The one my child was at was having one built and he managed to stay fiir one week a month before he died. I stayed with him every night on a chair because there are no pull down beds in the unit. My son was too ill to leave. There was a house that could be used for parents of long term ill children, not just cancer kids. I couldn't use it because my child was too ill to be left.

For the six months we were in after his diagnosis we lived full time on the paediatric oncology ward. This was meant to be a sterile unit. Windows could not be opened. No flowers or plants allowed in the unit. Most of the time school age siblings were banned from visiting because of the bugs they bought in. If a parent was ill, had a cough, cold or upset stomachs they had to leave the ward immediately. Many times we were out in isolation, maybe two kids and their parents in a room.we had to keep the door shut at all times and not leave the room. These measures were to try and keep all the kids alive so they could be given treatment that in all likelihood would kill them if the cancer didn't.

There was a washing machine on the ward. But if you had been put in isolation you could put your clothes in there to wash. If your child was sick down you, (usually daily) you couldn't wash your clothes in the machine in case your child had a bug and it wasn't just chemo vomit. You couldn't risk another child. Clothes were thrown away daily as there was no other choice.

There was no space, no privacy, no special treatment. All measures were to try and keep them alive whilst going through treatment that meant they had no immunity.

Your post seems to have glamorised cancer wards. Trust me there is no glamour to any of it.

Washing machine - you couldn't put your clothes in if you had been in isolation. Damned autocorrect.