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Deb25

My Son 23 recently passed away from a rare sarcoma and my frustration is why was he offered non government funded treatment when it was to late! Shouldn’t that option be put on the table straight up? We asked the question but it seems no one wants to answer the question , is this just us or is anyone else out there thinking the same or been in the same situation? Is it just about the $$ until funded treatment is exhausted and then offer the pay yourself option ? I know my son is gone and nothing will change that but maybe I can make a change for someone else .

Deb25

Hi Shelley thankyou , Sadly I to lost my son on the 28th July , we did bring him home as he didn’t want to be in hospital anymore and I am very grateful we did bring him home as this was a better environment he was surrounded by a lot of love , thanyou for reaching out , I hope you and yours are doing ok also ❤️

Deb25

Hi iloveyoudearly7, because my sons cancer is rare they tell us that we can only do treatments in a specialist cancer centre , we live almost 2hrs from hospital so that makes it harder this is 2hrs in good traffic ! he can be managed at home better I agree so the aim is getting him home hopefully soon , we will then hope his platelets recover enough to start the form of treatment offered 🤞 The treatment offered was not funded so he had to be an out patient but bloods failed him , This is like a security blanket of possible treatment has been ripped from under him ! It’s a waiting game. Thankyou for response talking helps

Deb25

Hi I am a mum of a 23 year old son with sarcoma , this is the toughest and most frightening Existence as a parent I want to take it all away 😞 we have just been told my son can’t have the treatment he needs due to platelets being too low , this could be a combination of treatments of time and bone disease , we are shattered but still have hope that he can recover better at home after being in hospital for almost 4 weeks , I just feel helpless any other parents out there to talk to ?

Deb25

Hi there I totally get you! My son was diagnosed in 2017 aged 21 Synovial Sarcoma he went through 6 months of chemo then disease was stable for 10 months then he did 13 rounds of radiation in his pelvis and leg to stop spread again , then in Jan of this year 6 months of chemo started he got to round 5 and chemo stopped working scans showed considerable spread so radiation for another 14 rounds fast forward to now June 19 and here we are again about to go into chemo !! He has shown courage and determination ❤️ As a parent I totally understand all you are enduring it has to be the worst nightmare ever that you don’t wake up from! Try to connect with people and find time for yourself i am here for a chat talking really helps 😉

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