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

Well, I joined the forum a couple of months ago in relation to my little girl's diagnosis with rhabdomyosarcoma. Freya had her MRI scan coming up and I was beside myself with worry and received some lovely messages of support from forum members. I now find myself seeking support on my behalf. About 3 weeks ago I noticed some white ulcer type lesions on the right side of my tongue, 2 blobs and some white pimples next to them and some kind of white marble effect going on towards the underside of the tongue near to the lesions. Basically the right side of my tongue doesn't look nice and pink and smooth and healthy like my left side. What concerns me is that these lesions weren't sore or red or blistery like ulcers and they just aren't going away. In recent days my tongue is becoming sore or irritated by teeth touching the lesions. I went to the Dr's on Monday and he told me to come back in 2 weeks if the lesions did not go away, he would then refer me to a specialist. With what happened to Freya just 13 months ago I just didn't feel comfortable playing the waiting game. Since Monday I have been on the internet and am now convinced that the lesions are suspect and am worrying like hell. I just keep thinking about Freya and Esme, my other little girl who is just 3 years old. I need to be fit and well especially for Freya who is 6 months post chemo and rt. I rang the maxfax consultant's clinic who helped diagnose Freya,for some advice and they have arranged an appointment for me on Monday next week (the day I'm supposed to be starting work again!) saying that the doc may wish/need to perform a biopsy. I am grateful that they will fit me in and my GP is writing a letter of referal for me to take to the appointment but I just don't know what to think. All info on the net seems to refer to SCC as almost the only probable cause of white lesions that are not like ulcers etc. I thought they may have been due to me having a cold virus and being a bit run down generally. Any advice or support would be most welcome. Freya is doing well at the moment - her chest xray last week was clear and her next mri in March. Thanks, Keren.

Hi
Try to remain positive. Looking on the net is bad (and I know we all do it) but there is lots of wrong things out there too. Wait until the doctors have seen you and take one step at a time. A friend of mine had very similar condition and it only turned out to be a bacterial infection. Let us all know how you get on. Remember stay positive.

Hello Keren
What great news that Freya is doing well. That's beaut.
From your experiences over the past 12 months you know the stresses that go with waiting and wondering. It's agonising but throw in a touch of internet-itis and you have trebled the worry.
No matter what the outcome is going to be, there is absolutley NOTHING you can do, one way or the other until you know what the situation is. It's difficult I know, but while you have your mind way ahead of where you're really at, you aren't there now for your little ones.
Try to keep yourself in the moment and deal with any news, good or not so good, when you get to it.
I'll be thinking of you and sending positive vibes for you all.
Cheers from Down Under
Deborah

Hi Keren

I have always been the scaredy cat, wuss, "glass half broken" type in my family, so when my cancer adventure began, my extremely level-headed sister told me NOT to do any research on the internet. Everything she'd seen about tongue cancer seemed to emphasise the high mortality rate and the inevitable disfigurement that accompanies even mild cases. Don't get me wrong, there are some things for which the internet is wonderful: cookie recipes, finding good coupons, and celebrity gossip. But for health research for Joe or Jane Average, forget it--the worst case scenario is par for the course.

I'm glad that Freya is doing well. (I adore those names, by the way.)

Please let us know how everything turns out.

Julia

hi keren
sorry i have just got round to your post about freya,as a parent myself i know that what affects them is so hard to cope with.i am so pleased that the scans were good news and wishing her a speedy recovery bless her.now you have fears of your own and that is even more stress for you.i hope it is all ok for you,you mentioned was it caused by all the stress and being run down i hope that is what it is and nothing else.about 11 years ago my sister's husband suddenly died on christmas eve and it was a terrible time for her and her 3 boys and she was so eaten up with grief and stress and she lost a lot of weight.she said she couldn't eat because of pain in her mouth,i asked her to show me and it sounds gross (and it was)her tongue had about 7 deep green spots,honestly i have never seen anything like it it's hard to really describe it.but after being sent to an ent doctor it was soon cleared up and the cause they said was stress.so it can affect our bodies in so many different ways.good luck and please keep us informed of the outcome and ofcourse freya's progress.love shirl xxx

To Saraha, Deborah51, Julia and Shirl

I just want to thank you all for reading my message and for your support and good wishes for Freya and myself. You have all helped me to put my fears into perspective and I am feeling better than a couple of days ago when I was getting myself into a proper state. I used to think that only cancer happened to other people until, of course, little Freya's diagnosis. I believe only about 60 children in the UK and a couple of hundred in the US, per year, are diagnosed with Rhabdo so talk about being hit by the crappy stick! I think it must be because of Freya's diagnosis I can only see the worst case scenario for myself at the mo but, trying to focus on the positive, I am being proactive in my own health - not ignoring potential problems like I might have done in the past. I know that I can deal with anything relating to my own health after what I witnessed Freya going through. She is my inspiration. My fear centres on not being well for her if she needed me in the future, if you know what I mean. Anyway, up until I hear otherwise, I am ok and ready to go back to work a week on Monday. Freya and Esme are doing great and that, for now, is all that matters.

Thanks girls, once again for helping me deal with my worries and I will, of course let you know how I get on and little Freya x