Hello

I would like to introduce myself on behalf of my beautiful little girl, Freya who was diagnosed with Rhabdomyosarcoma, a soft tissue sarcoma, on 5 January 2009, aged just 5 1/2 years old.

Despite the fact that this "thing" has been a part of our lives for nearly 12 months, I am still struggling to come to terms with the past and the future.

It all began 12 months ago, after Freya had an accident at school, sustaining an injury to her right cheek, the swelling caused by this never went away. Trips to the GP and local hospital ensued. No x-ray took place and we were still waiting for an appointment to come through to the Maxillo Facial Specialist when, 3 days before Xmas I found the lump protruding from her gum. An emergency biopsy and MRI took place and we had the agonising wait over xmas and New Year for the result. It came and shattered us completely. Surgery has not been an option for Freya. The tumour was not only in her gum, but her soft palate and cheek. 6 months of chemo and 6 weeks of radiotherapy took place and ended mid July. There are still some "abnormalities" present which her Consultant hopes is just scar tissue. Freya's next MRI is due next week and I am beside myself with worry. I have also noticed that her face seems slightly swollen on her "bad" side and I just don't know what to do. We are aware that localised swelling post RT is quite common and as she seems to be coming down with a cold, we are hoping that it's nothihg sinister. Freya is adamant that she doesn't want to go to the hospital to get checked out and I don't know what to do for the best. It's never ending anxiety and we feel that we just want to carry on getting on with life after a diffiult year. She has been so incredibly brave and reilient. Freya is enjoying getting back to school and having some hair back! I just hope that this scan is clear and we can continue gaining strength and confidence that we could just beat this damn thing. From Freya's Mummy.

Hello Rossi

Try to remain positive for Freya and take heart from Georgia's story. She is doing fine and I also have a patient who is in his forties now, having had a cancer in the roof of his mouth when only 9 years old. He wears a denture plate but is otherwise living a normal life. Children are versatile and heal better. Let's hope for a positive scan and a good outcome for Freya.

Best wishes
Vinod

Dear Vinod

Thank you so much for your reply. I have read Georgia's story and it has helped me to feel more positive. Georgia is a gorgeous little girl and it's so great to read about such a positive story. As a parent you don't tend to read about the positive outcomes on the internet which is difficult because, when times are tough, it can make you feel that there may not be much hope. Future's can be bright. I hope for us too! Thank you once again and best wishes to Georgia.

Hi Rossi, so sorry to hear your story. I hope the scan goes ok and your daughter goes from strength to strength. There is always hope so stay strong, keep us updated. Hagg.

Hi Hagg

Thank you so much for your message of support, fingers crossed for next week. I will update the message board with, hopefully some good news! Thanks again.

Hi

Just to let you know that Freya's scan was good - no change! Yippeee! It's such a relief, it's given us some breathing space till January. Thanks to those who have supported us xxx

Hi Rossi

That's wonderful news for you and especially for Freya.

Julia

Hi Rossi, I'm glad it went ok. Breathing space is always good to have . Hagg.

Good news for little Freya!
Now at least you can put it asside and enjoy this christmas! x