To campaign and start a petition to get education of symptoms and awareness of childhood cancer put into the materials we receive when we have a child?

[GoJetterGirl]

Just that really,

Those of you who have read my previous threads know that my DS is currently terminally ill with cancer.

Before his diagnosis I had no idea about signs and symptoms that point to childhood cancer, but if I had, I would have been more persistsnt with the GP about his symptoms as most of them were present.

My idea is to start a petition to have parents educated about childhood cancer and the best way I can think of is including the information in the packs we are given antenatally or including them in leaflet form in the red child health record books.. so lovely MNers,

If I was to start a petition online, would you all sign it? The difference between my DS's prognosis was how far it had spread in the 8 months his diagnosis took to be made, perhaps had I known the signs, things may be different, all I see is the campaigns for breast and testicular cancer, and the Be Cancer Aware ones, none of which addresschikdhood cancer.

Bump

Yes, I would sign. You can never have too much information imho

Hope you’re all doing as well as you can be and I hope Christmas was peaceful x

I would definitely sign! As would all my friends and family.

I am so sorry to hear about your little one. Childhood cancer has touched my life twice already, with 2 of my friends children passing due to it. Lovely little Lewis was only 3 - he had Neuroblastoma and my Sons best mate Khaleel was 12 - he had Leukaemia.

Anything that can be done to spread awareness and get the children diagnosed sooner, will be amazing.

Thank you for thinking of others, despite your plight x

www.gracekellyladybird.co.uk/symptoms-and-signs

Have you seen this website, is this the kind of leaflet you were thinking of?

I think in the red book would be good as I think there is so much information about newborn that hard to take more in at that time if in hospital newborn pack. Or maybe the HV or GP could give the leaflet at one of the child's regular reviews?

I'd definitely sign, there really needs to be more awareness.

I am truly sorry about your son.

I don't think that putting this information in print and providing it years in advance of the possible onset of symptoms would make a significant difference to the rate at which children are diagnosed. Additionally, there is a lot of information online regarding symptoms of childhood cancer already. Would digging out the printed copy you were given in a hazy newborn state be realistic?

Could you talk to one of the cancer charities about ways to improve the public health message regarding this issue? Given how much you must have to contend with at the moment, I think that getting some advice from them would be a good idea if you do want to take this on.

Again, I am so sorry for the situation you are in.

Hi OP
I am really sorry to hear about your son. Have you come across Sacha Langton-Gilks? Her son died of a brain tumour and she has spent a lot of time lobbying for the red book to include this sort of information. She’s also a campaigner for palliative care to be available for children and teens and all areas, as currently there is very patchy service provision for this. Maybe you could contact her and work with her?
I hope you have lots of real life support as I can’t imagine how awful things are for you and your family just now

Hi Gojet
I'd definitely sign. @furcoatnaeknickers suggestion of reaching out to Sacha Langton-Gilks is a good one. But concentrate on you and your darling boy for now.

The last thing I would look at with a newborn is a book or leaflets about childhood cancer. If my kid was ill, then I’d do a load of research on the internet. However, surely nothing can prepare a parent for dealing with a seriously sick child.... hope the OP stays strong.