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Mother of a Malignant Rhabdoid Tumour survivor....

Posts: 1
Joined: Jun 2014

Hello! My beautiful nearly two year old boy was diagnosed with MRT in 2010. He followed the European protocol for this type of tumour and he's now a healthy, bursting with life, wonderful six year old. I feel like the luckiest mother in the world. However, every now and then, I experience complete terror of what the treatment has done to his little body (nothing so far, but perhaps in the future) and of the cancer coming back (unlikely given the time that has passed, but still...). I was wondering if there were any other parents out there in a similar situation or any long term survivors with happy news. Life is so amazing now but I think the trauma we went through with our boy has had such an effect on me. I'm just looking for a little support, I guess. It's such an unusual situation to be in and in the UK, (where I live) I think there is little in online community support.

Thank you so much in advance......

Posts: 2
Joined: Dec 2014

You are not alone!  My son was diagnosed with rhabdomyosarcoma of tonsils, soft palate and neck in 2002, when he was seven years old.  He is now 19 years old.  I am so thankful he's here.  Let me know if you have any specific questions.  We have many of the same concerns.  We also have a fourth cousin who was diagnosed with rhabdo in her buttock at five months old.  She is now 23 years old.

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