alveolar rhabdomyosarcoma

message: Dear Mandy, sorry your son is going through this awful time, like you I suffered awful guilt when my boy was diagnosied with rabdomyosarcoma in jan 07 it was in his sinus and spreading over his face, I did the guilt thing , 4 trips to the doctors, giving him calpol, in the end you can beat yourself up over it all women are good at doing that, but we are also good at being strong, brave, and mothers, so give yourself a break, how could any of us mothers (and fathers) ever of thought our child would have cancer? Treatment has improved greatly over the past few years, so be strong and I wish you the very best, .p.s. my son is now 13yrs old next month.

message: hello everyone.im glad i found this site. i read some truly heartbreaking stories and i really feel sorry for those who have suffered from this terrible illness. I have a 7 y.o dear cousin who is newly diagnosed(may 2011) with rhabdo,.she has a tumor on the back of her right knee.the cancer is stage 4 for it metastasizes already on the bone near the tumor.ct scan showed some nodes on her abdomen and pelvic area. the news certainly devastated us.we dearly love the child that even the thought of her suffer from this illness is too much to bear. i personally had an anxiety attack the moment the dr told me that the prognosis is poor and that survival rate is 50 percent only and they can't promise for cure. the child is so determined to be cured that she even verbalized that it would be ok for her if her leg will be amputated if it is the only way for her to be treated - what a statement from a brave little fighter. i am aware that worst is still to come, yet we are still in the most crucial stage of starting kyle's chemo therapy this may 19 2011. i surely need someone to talk to who could truly understand us during this difficult time. pls add me in FB.send me message first so i would know you got to know me here.here's my fb name Jovie Amor Ranola.thanks everyone for the help

message: Hello, I too am am a mum to a beautiful little girl called Freya who was diagnosed with rhabdomyosarcoma in January 2009, aged just 5. I just wanted to let you know that Freya is living life to the full and a happy 8 year old now! We were totally devasted by her diagnosis, as all parents caught in this total nightmare. Freya's tumour was classed as a Stage 4 and surgery was not an option. Freya endured 9 blacks of chemo and radiotherapy that, looking back, I can only describe as torture. We too went through the torment of guilt at not knowing that the swelling in her cheek was cancer. After an accident at school, we took her to the GP, to A & E, back to the GP, back to the local hospital to see a Peadiatrician and all the time we were fobbed off until I spotted the lump in her gum, two whole months after the incident at school. It was NOT our fault! But, it took me a long time to work that one out, Hindsight is an incredible thing! I just wanted to let you know that there is hope. The hellish 6 months after diagnosis have been worth it. Freya is an inspiration to us. Life, now, is pretty much normal. We have now learned to live with this thing. There are now guarantees about the future, Freya still has to go for tests of some kind every 2 months and the long term side affects are already rearing their ugly heads for us, but, Freya is here, alive and looks fantastic and enjoying life as any 8 year old should! I hope this gives you, and any other parent going through the same, some hope, take care and please do not torment yourself with guilt. Focus on the positive and all the very best for the future x

message: ew days.is it just my computor or is there something wrong with the web site? it has been like this for

message: Hi Gracie
It's the site. We're working to fix it, so hopefully it will better soon. Apologies.
CLIC Sargent Web Team

message: My beautiful daughter was diagnosed with rabdo in august. It took 3 months of us taking her to and from a and e and the gp and being fobbed off and lied to and acused of awful things before someone finally listened to me.Shes just had her 4th chemo treatment and is doing amazingly well. She is at school today and if it wasnt for her hair loss she would look just like everyone else.
You must never feel bad for not spotting it sooner i knew for months she was ill but i had no idea it would ever be this.Shes an inspiration to me she never cries or complains.I on the other hand feel like the most isolated person in the world!My friends and family hardly speak to me and i can only asume its because they dont know what to say and they will never undertand. Ive never felt so low and alone in my entire life. But my daugter is my little star she keep me going every single day.

message: Becky, have you got a clic sargent nurse at your daughters hospital? there must be someone that can talk to you and help you through this, i found this site really helpful although people do not use it on a daily basis. I think the best people to talk to are those who have been through similar, I was offered counselling in my home town but when I asked if they had been through this themselves or delt with it before they had not, so i declined the offer I speak instead to a lady in the next village whos son has been through this awful illness and it helps us both greatly, is there no one you have become close to at your daughters hospital, please ask for the help you need to know you are not alone, or just come on this forum more often, I have been where you are Becky, and it is a nightmare but it will end, take care Grace.

message: Hi Becky, how are you doing? are things any better? I keep checking this forum, i hope things are going well with your daughter, and her treatment. Grace. x.

message: Hi,I would like to introduce myself, my name is Beckie and in 2005 my then 5yr old son was diagnosed with Rhabdo in his neck, with abnormal lymph nodes on the opposite side of his neck,it was inoperable and he was given less than 15% chance of beating it. After a year of intense chemo, 5wks of radiotherapy he went into remission January 2007. With MRIs every 6months and chest X-rays every 3months my son was given the All Clear November 29th 2011. I would like to say that the guilt is natural,it is by no means any fault of yours. I am more than happy to chat and share my experience with anyone. I wrote my sons story on the be child cancer aware website the other day,it has taken me all this time to be able to put it into words,it's easy to tell anyone that your child has cancer,but it's so hard to spread about how you feel inside,unless that person has experienced it.

message: Hi
I have only just seen your response.
we do have a clic nurse but i have not found her to be very helpful. Isobel is the only child at our hospital going through this so there really isnt anybody else to talk to.
Her chemo finished in jan and on 22nd feb we were told she was all clear so were now playing the waiting game. She is back in hospital 21st may for scans and surgery to make sure its stayed away, Fingers crossed.
Thankyou for your reply it was lovely
Becky x

message: Hi becky,thinking of you and your daughter today. try to be positive best wishes to you both. grace.