Hiya

[Despina]

Hi Sandra May,

Welcome to the forum. My name is Despina and I’m Georgie’s sister. He also had Rhabdo when he was two years old. He went on to have Chemo and Radiotherapy. Did your son have radiotherapy as well?

I know exactly where you are coming from when it comes to speaking with ‘people in the know,’ we found the same thing over the years. I’m glad that you have found this site now and I’m sure you will find great support on here.

Please keep in touch and let us know if anything else develops.

Despina

[sandra_may]

Hi Despina,

My son didn’t have radiotherapy. When they operated they got clear margins on all sides, albeit quite close on one side. Because of this, the fact the rhabdo hadn’t spread, the fact his tumour was on his temple so very visible and obviously because of the LFS we decided not to risk it. I think the oncologist would have agreed to it had we wanted to but we really didn’t.

Sandra.

[pennysophia]

Hi Sandra,

So so sorry to hear of everything you have been through. I’m very glad to hear that your son is doing well and your girls are fit and healthy – long may this continue.

My paternal uncle (Georgie was my maternal cousin) also has a gene mutation but he is over 50 years old and has not had any major health concerns to date (I’m touching wood whilst typing this) I genuinely hope this is the case for your children too.

I have complete faith in my uncle Pan and the work he plans to do with the trust so stick with the forum and I’m sure real changes will be made on the screening front one day in the future.

take care x

[Author]

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