Rhabdomyosarcoma

message: Hi Dawn,
I am now 34 years old and was diagnosed with embryonal rhabdomyosarcoma, at the age of 5.It was situated in one of the extra-ocular muscles in the orbit which move the eye.I was given the same odds. I had radiotheraphy & chemo and have been healthy since. Please feel free to reply and ask any questions,I'll help if I can. I was treated at the RVH in Belfast N.Ireland.

message: hi, there are 2 kinds of rabdo our daughter was diagnosed 2 years ago now and have done chemo and radio and now 1 year in remmision so not sure we wernt told of it coming back? hope it helps let us know

message: Hi. My son was diagnosed in 2005 with Alveolar form of Rhabdomyosarcoma at the age of 2. After surgery and chemo he has been in remission for 2 1/2 years. Let me know if you want more info.

message: Hello. My teenage daughter is being treated for alveolar rhabdomyosarcoma. She has had 6 months of intensive chemotherapy, 5 1/2 weeks of radiotherapy and is now haveing 6 months of maintenance chemotherapy. It seems that in England there is a series of treatment proocols based on the type of tumour ( embryonal or alveolar ) and whether there is evidence of spread to other areas. From what I gather, these protocols are European wide - there may be info on the internet about them. We have been told that, at the end of treatment, our daughter will be reassessed frequently with repeat scans.
Good luck with everything. It is great to read about the children who are in remission now.

message: Hi,
My son was diagnosed in 2005 with Alveolar Rhabdomyosarcoma,it appeared as a lump in his neck just below his ear,it was so close to his brain that they were unable to operate.He had 6months of intensive Chemo,5wks of Radiotherapy and a further corse of maintenance Chemo.He still has about 1cm of the lump remaining which the doctors say is dead,as it hasn't changed in size or shape since July 2006.He has been in remission just over a year now,and so far so good.He was only given 25% chance of survival in the beginning.

message: Hi
Its nice to know we're not alone, my 14 yr old son was diagonised last September 11th 2007 with Alveolar Rhabdo. He had a lump on the sole of his foot and after initial scans they found 2 in his neck, one large one in his lung and another in his calf. The two in his neck have shrunk to just a lining and similarly the one in his lung. We re not waiting to see what happens to the other two. We ve just started our second course of chemo which is a lower dose Topotecan for 3 days and Carboplaten for two days every 3 weeks. We were told at first his chances were poor but his doing really well.

message: my daughter was diagnosed on feb 17th 08, she has a rhabdoid tumour in her pelvis, luckily it hasnt spread any where else, she is on intense chemo now and will be rescanned in may to see if it has shrunk enough to operate, then will have more chemo after and radiotherapy, the drs said did say it may come bk but will scan her regularly, its made me feel better to read on here the sucess stories it brings me fresh hope at this difficult time, love to all and hope all suffers get well soon, happy easter,,,, xxxxxx

message: Hi there, my son was originally diagnosed in 1999 aged 15mths with stage IV Alveolar Rhabdomyosarcoma, there are two types Alveolar & embryona, Alveolar being the more aggressive. Stage IV meant it had spread to another site aswell as the primary site & because it was in his leg & lungs it was in a more unusual place, normally occuring in the head & neck region. We were told he had about 6 weeks to live as Rhabdo is a very rare & aggressive form of cancer & doesn't normally affect children so young. He received 6 courses of intense chemo followed by 2 operations to remove the tumour in his leg & the muscle to limit the chance of it returning in the same sight, he was then given 6 more courses of maintenance chemo. Thankfully he responded well to treatment & the tumours in the lungs cleared up. We were told that he had a 70% chance it would return, but the longer he remained clear his chances would improve. If it was to return theyr'e wasn't anything they would be able to do for him as he had had so much intense chemo. When he got to 5 yrs in the clear he was classed in remission, we could relax a bit more, but sadly 9mths later it returned, this time on his spine, his other leg & his lymph glands in his hip. In the 6 yrs since his last treatment research had come a long way but we knew that it was incurable, all they could do was give him palliative care to make him comfortable & give him as much time with us as they could. He had 6 courses of chemo, radiotherapy but still it was spreading. We consented to 2 very experimental drugs, we knew they wouldn't save our boy but they could help future children with this rare form of Cancer. He battled on for 12mths but sadly lost his fight on August 10th 2007 aged just 9. He had received all of his care at Alder Hey Childrens Hospital in Liverpool England which has an excellent centre of oncology, we were very lucky as the doctor who treated our son was a speacialist in this type of Cancer, she gave us all the information we required and over the years I educated myself on everything to do woth this disease. Our son was one of the unfortunate ones who lost his life to this terrible disease. In 1999 there wasn't much known about Rhabdo but medical advances have made it possible to increase the success rate. I don't tell my story to frighten parents with children who have this illness I tell it to give them hope. If my son had been given the treatment that is available today when he was first diagnosed in 1999 he may still be alive today. Never give up hope. I hope with all my heart that other children can be saved from all they learnt from treating my son. My thoughts & prayers are with everyine who is going through this extremely painful & scary time. I found the Cancer Research UK website very helpful & imformative. If anyone has any questions or just needs to let of steam, i'm here, who better to talk to than someone who has been through it too. Good luck to you all & get well to all who are suffering.
XXXXX

message: My 3 year old boy was diagnosed in december 2007 after what seemed to be a never ending cold,after repeat visits to the doctor and 2 hospital visits he was finally diagnosed.He had a large tumour behind his nose,in his left eye socket and it has spread to the lining of the brain and the nearby lymph nodes,when he was diagnosed he had days left as the cancer was that advanced. He had to have a tracky fitted as his airways was extremely compramised and the whole thing was terrifying.
He started chemo immediatly and hasesponded well so far but we have been told that if he doesnt have radiotherapy his chances are minimal and he wouldnt be here in the next year.
He starts his rt in 6-8 weeks and im pretty damn nervous because of the complications that it can cause him. He has a 30-40 percent chance at beating this but the docs have been very vague as to what the maintanance period consists of and my son is also showing symptoms of the tumour coming back, maybe im a litte paranoid now but thats what this disease does to you,wouldnt you agree?
Im new to this childhood cancer and i have no-one who understands so id really appreciate any kind of response from someone who knows

message: Hi there. It seems this terrible tumour isn't as rare as I thought and there are lots of families seeing their beautiful children undergo months and, sadly, years of treatment. It is heart breaking to hear of children who have lost the battle and my heart goes out to you. Your letter of hope is important for us, and for you to know that your son's fight was not in vain. It is very brave of you to write about your son - it must have been a hard message to write. Thank you. x

message: i keep reading the messages on this site hoping that someone could shed more light on this disease.Ive so many questions that the doctors just cant and perhaps wont answer.Ive asked so many times what stage jamie,s cancer is,they said the worst and that hes extremely high risk,yet they tell me that the cancer hasnt spread so how can it be the worst stage? Also after they told me it hadnt spread i found out he had metastatic lymph nodes, im no doctor but my understanding of that means it has spread to those areas as the primary tumour started behind the nose.I feel that if i knew what i was dealing with then maybe id have the capabilities to deal with it better but all the while im in this land of uncertainty then i just cant get to grips with anything. Ive asked the doctors so many times about jamies prognosis and instead of hard fact i get told we are not out of the woods yet.Im really worried that the tumour is resisting chemo as when he got diagnosed he was snoring badly and his eye was sore,lost its focus and drooped and bulged like he had suffered a stroke,he use to rock his head from side to side and hes doing that again so violently,he had such a snotty nose that wouldnt clear up and hes had that for the last 4 weeks,hes complaining that his eye is sore too,i told the doctor and he said keep an eye on the symptoms.Im so scared and i have no-one to turn to.What do i do?

message: Hello

If you feel like you would like to talk to someone about your experiences -you can contact the CLIC Sargent Helpline on: 0800 197 0068.
The Helpline is open Monday to Friday, 9am - 5pm
Our trained helpline staff offer both emotional support and practical information when you need it. For anyone coping with the trauma of cancer, it fills an important gap.

Anyone is welcome to call the Helpline, families, friends and professionals alike.

Best wishes,

Sally, CLIC Sargent Web moderator

message: To neaney,
Firstly I am so sorry to hear that your son is batteling this awful disease, and Iunderstand how scared and confused you must be feeling,
I know from experience that this disease is so unpredictable. Perhaps the doctors just won't commit themselves to a definate answer, which doesn't help you as a mother, because they can't predict how Jamie will respond to his treatment, but they could at least explain the different stages and signs to look out for to tell that the treatment isn't working. My doctor for Sean was very straight with me, I told her I needed to know everything as I would be better prepared to face what we were dealing with, wether it was good news or bad, I needed to know. As Sean had originally been diagnosed with Rhabdo in 1999, I did as much research on this type of Cancer as I could. The Cancer Reasearch website helped alot. All I know as a parent of a child who suffered this illness twice is that depending on where the tumours are, if they have spread determines how bad the stage is. If it has spread from primary site on diagnosis, this isn't great news, but this doesn't mean treatment won't be successful. the most common place for it to occur is head and neck, anywhere else makes it more complex to treat. Also each child is different and will respond differently to treatment. Giving chemo helps target the cancer cells throughout the whole body, especailly lymph nodes,Radiotherapy just concentrates on the main site of tumour. This has it's drawbacks as it can interfere with the development of that area. From my experience if the tumours continue to spread whilst treatment is being given then the prognosis isn't good. But like I said this is just my experience and un educated knowledge as a parent of a child who suffered this cancer twice. I don't mean to alarm any parent or cause more stress and worry I just know that being in a situation where your child has this dreadful disease is very scary and you have so many questions, and no where to turn to. My advice is to speak to your doctor and stress that you need more imformation about your sons stage of illness, no matter how awful the news may be. You need to know the worst case scenario if treatment fails, what do they have planned next. You have a right as his parents to know. I know I lost my son to this illness but if I can be of any help and support to anyone who is going through the nightmare I too went through then i am glad to help. I take comfort that Sean may have helped someone elses child to beat this disease with all they learnt from how the illness progressed with him and the new treatments they tried on him. If you need to chat or have any worries I will glady be of help. I visit this site often.
Take care and my thoughts are with you and all other parents who are going through this terrible time.
I hope everyone who is suffering finds the strength to beat this disease and makes a full recovery.
X

message: I just wanted to say thankyou for taking the time to respond to my post,it must of been very difficult for you and i appreciate your kind words and your advice.I did manage to sit down and have a chat with jamies doctor and he tried very hard to answer all my questions. He told me that if the tumour was returning now whilst jamie is still undergoing treatment then there isnt a great deal that can be done for him,i think we would go down the clinical trials route if that is the outcome. if the tumour returns 6 months after treatment then again we are in trouble,he couldnt be more specific than that but jamie is due a scan on monday and the results cant come quick enough although im nervous at the same time. This is such a evil thing to happen to our children and i think you are amazing for taking the time out to reassure families going through this.Again thankyou so much,ill put a post on when we have jamies results so until then,fingers crossed.x

message: I have all the sympathy in the world for yourselves, your story about jamie was for me deeply touching, my daughter had all the same symptoms, and having been unwell since october was not diagnosed until january, like jamie she also only had a week too live, my daughter's scan date is the 4th of august. my heartfelt thoughts are with you and i hope and pray jamie had a positive scan, xx

message:

Hi, Hope you don't mind me asking how Jamies scan went. I have been thinking about you and been hoping with all my heart that you had good news and Jamie has been responding well to treatment. If ever you need to talk, i'm here.
Wishing you and everyone else on this heartbreaking journey peace and hope. X

message: hi,i just wanted to post on jamie's recent mri results. His tumour has reduced in size and the consultant said that the abnormalities found on the scan are more than likely scar tissue from where the tumour was, although hes not ruling out the possibility that there are cancerous cells still within the site. He said that the radiotherapy should kill them. He was very pleased with the scan results and said even though we are not out of the woods yet its a good start.

Jamie started a 6 week course of radiotherapy last week and so far the side effects have been minimal, he's a little more tired than normal but as he's having a daily aneasthetic I should imagine that tiredness is to be expected. He will be having another scan no sooner than 6 weeks post radiotherapy and hopefully it will be good news.

Even though things are still so up in the air and the future is still so unclear the fact that the doctor said that jamie has responded to treatment has given us a glimmer of hope. I know that this disease is unpredictable and that the worst still could happen but to get where we are now after being faced with jamie having days left back in december means there might be a light at the end of the tunnel, we are so far away from the words all clear but we are closer than we was and that is the most amazing feeling ever.

Jamie is such an inspiration to me, my family and friends and he just gets on with whatever is thrown his way, he's a little fighter and I'm so proud of my boy, whatever happens I know he has given it his all at beating this disease and even though these past 9 months have been so hard, we have shared some wonderful times with him and seen a strength in his character that we never knew was there.

Our local paper has been covering jamies story and a 23 year old girl got in touch as when she was 3 she had a rhabdo alveolar in the head, she lost an eye due to the radiotherapy but has been all clear for years, I've spoken to her on the phone and to hear a positive story from all them years ago gave me and my family so much hope, I only hope that if anyone out there is new to this that they get the same hope from this story as i did. Don't give up, the one thing my boy's consultant said when jamie was first diagnosed is remember two things, your child is seriously ill but cancer can be cured. After hearing stories and doing my own research i found that his words are true.

Jamie was placed in the high risk group and his prognosis is poor but that changes every time results show an improvement and as many people have already research has come such a long way in the last ten years.

Good luck to everyone out there who is walking this dreaded path, i wish you and your families well.

message: hi, and a huge thankyou for replying to my post, especially at such an anxious time for you and your family. How is your daughter, is she coping with everything that has happened over the last few months?

its so hard as a parent but this website has been a godsend to me, so many of my friends avoided me when jamie got diagnosed,i assume they felt uncomfortable around me! Ive spent my time trying to find out as much as i can about this type of cancer and even contemplated alternative medicines, anything just to get my boy back to good health but hopefully the radiotherapy will see this cancer off for good.

Has your daughter got to go for radiotherapy, im sorry,how old is she?
I really do wish your girl all the luck in the world and i hope you have the support of your friends and family through this tough time, please let me know how the scan goes and i will keep updating news on jamie.

If you have access to facebook i have made a group for jamie with photos and updates on it. i made it after i set up an especially for you fund in jamies name for CLIC Sargent, anyway, i wish you all the best of luck for the future. take care

message: dear neaney, i am so very happy for jamie and yourselves, fantastic news about the scan, all the best for the radiotherapy.on to us, my daughter alycia is 6, 7 in october. alycia has had 9 doses of high risk chemo and 32 sessions of radiotherapy, her radio began way back in april,please dont be alarmed but half way through alycia became very poorly, she became very tired, no energy and stopped eating for 6 wks, but all children are different, so pleased dont be alarmed for jamie, but the respect i had for her every day was immence, she was more courageous than i shall ever be. because alycia has been poorly they brought her scan forward by 1 wk, so we got the results last wed, the 30th of july. Unfortunately it hasnt shrunk as much as they thought it would, back in march at her 2nd scan the tumour was 10.5 cms at its widest, it is now at 5.5 cms, I am sitting here at 5 in the morning cant sleep feeling devastated at the moment, because alycia has to have another biopsy today, the thought of it, for her sake has me reeling, more bleeding from the nose for a few wks. Has jamie any problems with his sight, unfortunately alycia is blind in her left eye, though they tried to be positive, that she would regain it, we now know that it wont happen. It hasnt been all doom and gloom neaney, though i sound as though it has, Alycia is also a fighter and her spirit is still there, its because im feeling very low at the moment, once again in the land of waiting. It took me a long time to come on to this site, but i am so, so glad i did, all the positives have helped. I have thought of you and jamie often, and it has given me a lift to read your wonderful message, all the very best for all still to come and if you could please keep us informed, wishing you all the best, bye for now

message: dear neaney, i am so very happy for jamie and yourselves, fantastic news about the scan, all the best for the radiotherapy. On to us, my daughter alycia is 6, 7 in october. alycia has had 9 doses of high risk chemo and 32 sessions of radiotherapy, her radio began way back in april, please don't be alarmed but half way through alycia became very poorly, she became very tired, no energy and stopped eating for 6 wks, but all children are different, so pleased don't be alarmed for jamie, but the respect i had for her every day was immence, she was more courageous than i shall ever be. Because alycia has been poorly they brought her scan forward by 1 wk, so we got the results last wed, the 30th of July.
Unfortunately it hasn't shrunk as much as they thought it would, back in march at her 2nd scan the tumour was 10.5 cms at its widest, it is now at 5.5 cms.

I am sitting here at 5 in the morning can't sleep feeling devastated at the moment, because alycia has to have another biopsy today, the thought of it, for her sake has me reeling, more bleeding from the nose for a few wks.

Has jamie any problems with his sight, unfortunately alycia is blind in her left eye, though they tried to be positive, that she would regain it, we now know that it wont happen.

It hasn't been all doom and gloom neaney, though i sound as though it has, Alycia is also a fighter and her spirit is still there, it's because im feeling very low at the moment, once again in the land of waiting.

It took me a long time to come on to this site, but i am so, so glad i did, all the positives have helped. I have thought of you and jamie often, and it has given me a lift to read your wonderful message, all the very best for all still to come and if you could please keep us informed, wishing you all the best, bye for now

message: just thought i would leave a quick message, about the biopsy. All my fears were unfounded, no bleeding, thank heavens. Alycia was neither up nor down, just wanted home as per usual. She is feeling really well today, which always gives me a lift, making things easier to deal with. Take care, i am thinking of youselves

message: Dear pwilliam,
Hello again and I'm sorry that you haven't had the best news recently, i hope by the time you get this post that you will have had some more positive news and not in that dreaded uncertain and not knowing zone. i can't believe how quick alycia had her radiotherapy, it really surprised me when you said it was april. Jamie had 9 rounds of high risk chemo but he had many infections along the way that meant the next due lot of chemo had to be put back until he was better.

He's now had 3 weeks of rt and he's just starting to get like a red rash across his face, he has complained of his mouth being a little sore today and hes very tired. The docs said that the side effects would be gradual but more so in the latter half of the treatment and it seems to be pretty spot on so far. We were warned that there was a huge risk to jamies eyesight when we was told of side effects of rt,we was also told that it would be immediate so im hoping that the risk has been and gone by now although they did warn us that many of the side effects of the rt are a year or so down the line. How did alycia lose sight in her eye? was it due to the rt? she sounds very brave, have the docs said what the next step is for her? i do hope the biopsy comes back with more promising news for you, this is such an evil thing for any child to go through and its so difficult as a parent to watch.

I was so niave before this happened,i thought children got leukeamia, that adults got cancer, how ignorant and wrong was i? I understand what you mean by saying you feel low with the waiting, throughout it all with jamie i found that to be the hardest part, i had to know what everything meant and what would happen or what the next step would be with every possible outcome because for me i needed to know as much as they did about my boy, it's so hard, and as much as friends try they really don't understand, how can they?
i really do wish your daughter well, please keep me posted with any news, i would love to hear from you and your little girl is in my thoughts as are you, wishing you the warmest of thoughts, hope to hear from you soon. Janine.x

message: dear pwilliam,
I am so pleased that Alycia got through the biopsy without the complications that you feared and im glad to hear that you are feeling a little better,have you had the results back yet? i really do hope its positive news for you both,my thoughts and prayers are with you,please stay intouch as id love to know how little Alycia is getting on.much luv,janine.x

message: dear janine thanks so much for writing so quickly, my heartfelt thoughs are with you, as i have travelled your road already, im hoping that jamie doesn't fair too badly, they tried to tell me alycia was so unwell because she had, to have one chemo session in wk 3 of rt.after that wkend alycia went downhill rapidly, most of the time she was in bed, but on a positive note she is gettin better now. the rash on jamie's face will disappear quite quickly, but make sure of a very soft toothbrush as his gums will be very sore for a while. Alycia was only getting 9 rounds of chemo, and the 6 wks of chemo but there is so many different protocols.We go to see the consultant on monday the 18th, hopefully the results will be back. Alycia went blind because of the pressure from the tumour, on the nerves, though on the whole it doesn't seem to affect her too much, but she has had a lot of infections at her left eye, so we don't know what will happen in the future, but she may have to get a false eye. but we shall cross that bridge when we come to it. I was like you, very niave or maybe just thoughtless, when i saw kiddies on tv, i always though poor little things, then the thought was gone, but until cancer enters your life, nobody can understand fully the devestation it brings, especially when it is happening to your child. This may sound so crazy, but back then i probably was, when i was watching alycia sleep, all i wanted was to suck the tumour out of her and give it to myself instead, total nuts. Wishing jamie all the best for the rest of his rt, keep your chin up, i shall be thinking of you's. Tracy x

message: Hi, I feel so sad when I read everyone's stories on this site, I want my story to give you hope.

My son was diagnosed with an Embryonal Rhabdomyosarcoma of the bladder and prostate when he was 3 years old. After 6 months of chemo the tumour had shrunk enough to enable surgery to go ahead and he had his bladder and prostate removed. Two more months of chemo then followed. He was diagnosed in November 2003 and is now nearly 8 years old!! So 4 years in remission!

He is an inspiration to us all, he will have lots of hurdles and operations to get through as he grows up because he now has a stoma, but my son is GREAT! I want the world to know that this horrible disease will not stop us - watch my son playing in the park and garden!

I would be really happy to be in contact with anyone who just wants to chat about what they are going through or have gone through, because as a parent the experience never leaves you, but please stay positive and keep going because you WILL get through it...

xxx

message: written by: Louise71
posted: 18.08.2008
message: Hi, Just wanted to let you know that I have been keeping up with Jamie and Alycia's progress. Thinking of you all the time. I know I have come to the end of my tragic journey but I feel so much empathy for both your situations. I know how emotionally draining and stressful this whole experience can be. Your children are extremely brave having to deal with all that is happening to them. When my son Sean was poorly it amazed me how he kept bouncing back, no matter how much pain he was in he kept that beautiful smile on his face the whole time. I can honestly say that it was Seans spirit that got me through all the waiting of test results the worry of the treatment, and i'm sure your childrens bravery and positive attitudes are keeping you both going. It's amazing how resilliant children can be, they can teach us aldults a thing or two about never giving up. I wish you both love & support and wishing your children strength and courage to fight this.
Thinking of you all.
Louise Mom to angel Sean XX

message: well, we had the most fantastic news on monday, the cancer IS IN REMISSION, we went to see the consultant with a great feeling of dread, because not for one minute, did we expect that kind of news, i am still coming to terms with it. The consultant was also so very amazed, because the size still remaining, in their experience, indicated the cancer was still there. I sincerly hope that Jamie is doing fine with his rt. I am realy sorry that this is so short, but just can't seem to get my head together. When the old brain is working again, i shall be back in touch, but for now take care, all my best wishes, Tracyxx

message: oh my god! that is sooo fantastic,i am so pleased for you and little alycia,i cannot believe the effect that news has just had on me,i sat and cried when i read your post so it must be almost sureal to you,that is such a huge thing to happen,wow. you can almost get your life back now and dare i say even make plans for the future,something that you are completely stripped of when going through this awful journey.You must be so overwhelmed with emotion,just hearing that alycia is doing so great is so comforting and has almost given myself abit more hope for jamie. he finishes rt next week which im pleased about,hes now in pain with the redness and hes been given special cream to ease andsoothe it,im hoping that this is as bad as it will get but so far hes coping so well. im not sure what happens after the rt,the doctors have been very vague as to what the maintanance period etc consists of but im sure ill manage to find out soon enough.
What happens now with alycia,have they said? i really am over the moon for you and your family,please keep intouch,it would be nice to hear from you again.big hugs to your brave little girl,what a little star.well done.xx

message: Hi

After reading these storys just would like to add my sons story who is battling a rhabdomysarcoma for the third time. He is now 4 but was first diagnosed on his 1st birthday sept 2005 with the aveolar type on his bladder he had 6 sessions of chemo then surgery to remove the tuma but also had to have his bladder removed. He then had three more sessions of chemo and 5weeks of radiotheraphy. He was in remission for 6mths only for the cancer to return in one of his lungs, another 6 sessions of different chemo followed and more surgery and part of his lung being removed. He was then in remission for 18mths and following a routine chest x ray the cancer had returned again, we were told there was nothing they could do. We had a choice of go home or go home on pallative treatment, we chose to go home with treatment. The weeks that followed were terrible the thought of losing our son was unbearable, but two our amazment our sons breathing started to improve where as before he was very breathless. We returned to see our consultant on his next appointment and to our amazment the tuma had shrunk. he has had another 6 doses of this pallative treatment and is facing a operation again in september. Just seeing our son out on his bike and playing with his little brother gives us strength to keep on fighting this horrible disease. What i am trying to get across there is always hope no matter what you are told.

message: Hi i would just like to say that as the grandmother of a little person who was first diagnosed with a rhabdomysarcoma a week before his first birthday it has been a rollercoaster of events.There have been time when my lovely son and his wife could have run and locked themselves away somewhere never to see daylight again.But they did'nt.My advice is stick together as a family and draw strength from each other as we have done.Never ever give up the fight.We havn't and never will.I just wanted to tell you how proud i am of my family and when my grandson has his op in september to remve a tumor for the third time i hope and pray my family can get on with thier lives. . My thoughts and prayers are with you all

message: hi seans mum first time ever using this site (do not even use the computer), I think I met you last year in Alder Hey my son Joshua had beeb diagnosed with a rhabdomysarcoma you explained Seans condition to me and ressured me at the same time. I have often thought about you and Sean who was the same age as Joshua, after Joshua,s chemo finished as we were
leaving oncol; you gave me a hug and wished us well, I have never forgotton you and you are continuing to inspire others after everything you have gone through. I hope you rember me.

message: hi seans mum first time ever using this site (do not even use the computer), I think I met you last year in Alder Hey my son Joshua had beeb diagnosed with a rhabdomysarcoma you explained Seans condition to me and ressured me at the same time. I have often thought about you and Sean who was the same age as Joshua, after Joshua,s chemo finished as we were
leaving oncol; you gave me a hug and wished us well, I have never forgotton you and you are continuing to inspire others after everything you have gone through. I hope you rember me.

message: Hi Gracie, I do remember you and Joshua, what a nice surprise we meet again. I'm touched that you remember me and my Sean. I hope that Joshua is well, it breaks my heart to know of other children suffering this terrible disease. If I can be of any support to others who are on this frightening journey then I feel I am keeping Seans memory alive and doing something positive. I remember so well how scared and alone I felt when Sean was ill. I am so glad that I helped reassure you when we met, I didn't want to frighten you or appear all doom and gloom. When you are in hospital coping with treatment it helps to talk to other parents. How is Joshua doing? Thankyou for writing to me, , always here if you need a friend. x

message: Hi Louise,glad you got my message,Joshua is doing well thankyou. His treatment finished in Februarywe had a scan on Tues/2nd so far so good. I did ask about Sean many times, I was so sorry to hear the news. How are you and your family doing? I remember you had a bay with you. I wish I would have found this forum early on in diagnosis it would have such a help during those awful first dark days, not that dark days have gone, they just get less at the moment. Let me know how you are Louise keep in touch.

message: I had posted a report 2 or 3 wks ago, but unfortunately both were not put on the site, feelin a bit peeved about this, as neither post contained anything bad.

anyway, i have been thinking of you both, hoping you are coping ok, and Jamie is calming down. I also hope Jamie is eating a little better, but if Alycia is anything too go by, Jamie won't be.

Janine i would dearly love to be able to contact you in person, but how to get our contact details exchanged, remains a mystery to me.

Please take care Janine, be strong, even though it can be so hard, you and Jamie are in my thoughs, ttfn xx

message: Hi Louise, i'm sorry to hear your child to lost the fight against this rare disease, i havent been on here since Feb and it made me sad reading my last message when i was feeling a little positive, my son adam lost his fight against this disgusting disease on 13th September 08, he was only diagonised on 11th September 07, he was 15 when he died. We were told he had very little chance from the beginning, the tumours appeared to be shrinking but once he had had as much high dose chemo as he could have and went on to the lower dose, the tumours soon began to grow back (aggressively!) he had a weeks radiotherapy towards the end of maintenance chemo, they thought it may help his swollen leg, the tumour in his groin had blocked fluid making it swell. It never helped though, he deteriorated very quickly after this and i dont think there were many places in his poor body that didnt have a tumour. They did say in Adams case it could have been 'gene' related as on his paternal grandmother's side there are several cases of cancer in her family. It is a life changing experience watching your child suffer from such a heart breaking illness, fighting their hardest but not winning the fight and just having to watch their struggle. He was terrified of dying. It is helpful knowing your not alone as a parent in this situation. xxx

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message: It has been very emotional reading all these posts and I am really hoping that someone out there can help me.

My son was diagnosed with an alveolar rhabdo for which he received 6 months intensive chemo, 6 weeks radiotherapy and 6 months maintenance chemo. He's been off treatment (and in remission) for almost two years.

He looks wonderful, really healthy BUT he has trouble keeping up with his friends, is rarely at school because either he has a virus or he just doesn't want to go, and just seems below par all the time.

I am wondering if this is as good as it gets now?

I feel like I have no support where this is concerned. The consultant seems almost dismissive and thinks either I'm making it up or my son is.

message: Please let me start by saying how very sorry I am for your loss. Another innocent life taken by a cruel and increasingly common disease. I truly know your pain so please don't feel alone, thankyou for sharing your story, it must have been very difficult to write about losing your son, especially so soon. Putting it into words doesn't make it any easier to accept. I still feel numb and disbelief that my boy has gone.The way your sons illness progressed sounds very similar to how Sean was. He too had tumours in his leg, groin, lymph glands and also had swollen legs. By the end he was riddled with tumours, it just devoured his entire body. Watching your child being taken from you in such an horrific, painful way is very disturbing. I remember watching Sean in so much pain constantly, it felt like my heart was being ripped out. Unfortunately this type of cancer can be very aggressive and sometimes unbeatable. I live in hope that one day they will find a way to stop children like our boys becoming victims, and help them to become survivors! I find it very sad that in this day and age of modern medicine children are still suffering and dying of cancer. On this forum I read of how many other families are suffering but I hope with all my heart their stories have a happier ending. I find comfort here with other families in similar situations, I strongly feel that we all need to support eachother as the outside world has no comprehention of what life is like for parents of cancer sufferers. If i can be any help to anyone, a listening ear, then I feel I am doing something albeit small to make a difference. My heart goes out to everyone here. Try to stay strong. Keeping you all in my thoughts. XXX

message: hello again, its so nice to hear from you as i've often wondered how both you and alycia are doing. jamie is doing ok at the moment, he finished radiotherapy and was really quite forunate to come away with only mild complications compared to what we was warned about. the post radiotherapy scan is this thursday and if im honest this is the scan that is terrifying me most as he has now received all of the aggressive treatment and is now only being given the low dosage maintanance chemo.

he seems very well in himself considering although he does have bad days and ive had a few scares that perhaps the tumour has come back, although i do beleive that this will remain a fear forever now. jamies behaviour has calmed down alot, it did take some time but slowly he started conforming to normal household rules again, his eating was very tricky but hes slowly getting the taste for foods that he loved before the illness, i'm also alot less lenient as i dont want him eating crisps etc, i tell him he has to eat meals and that he will get rewarded with the sweet stuff, so far so good!

my thoughts and prayers are with you and alycia,love to you both,janine.xx

message: Louise
Thank you so much for your reply it is so comforting to hear from someone who truly understands, to hear that someone knows how it feels to see your child in pain and what it does to them and how it hurts to see their bodies failing and your right the outside world just cannot comprehend. I feel very lonely in so many different ways its hard to begin to explain to the outside world. You sound like a lovely lady and mum, all my love Rachelxx

message: Hi Rachel,
Just wanted to let you know of a child bereavment forum I joined some months back. It's for anyone who has lost a child, whatever their age, whatever the circumstances. I find it very supportive and comforting because the other grieving parents know exactly how I'm feeling. Everyone is at different stages in their grief, you can just rant and rave or ask for advice. They are so friendly and welcoming, no one will judge you, I have found it a great help on days when it just all gets too much to bear. It may not appeal to you but I just wanted to let you know, of course you can always chat to me here, we all have to stick together. You may not be ready for something like that but just wanted to give you the choice. The site is called The Child Bereavment Charity. Take care of yourself and take each day as it comes. Louise xx

message: well its been a hard week waiting for the post radiotherapy scan results and i suppose i had a mixture of feelings wondering whether the radiotherapy had worked or not and where we go from here. we got the results on tuesday and to be perfectly honest they were a little disheartening. jamies scan after the radiotherapy was no different to the one before radiotherapy,with abnormalities detected at the bottom of his skull.its unclear whether the abnormalities are scar tissue or remaining tumour and because of the location of it,a biopsy is not possible,niether is the more detailed PET scan as he has too many glands around that area to get an accurate reading.so,this means that we have to have repeat scans every 4 months to see if there is any change or growth.we are unlikely to find out whether there are cancerous cells remaining until (god forbid) it grows back which our consultant said there is a very high chance of and that if that happens treatment options are very limited.Jamie has had as much of the best treatment that his little body can handle and unless some wonder drug is found then he would be moved into palliative care.he finishes his maintanance period in february and after that its a waiting game to see if my boy has beaten this disease. Im not sure what i expected from the scan but whatever the results were i thought they would be a little more certain than if buts and maybes.as always its the not knowing that drives me crazy and i really did believe that this scan would give us a true indication as to whether treatment has worked.to be honest im so confused as i dont know whether this is positive news or bad,to me its niether,we still have no idea what the future holds.

message: Hi
I have just read your post about your son being under par the whole time with no energy and I was wondering where he had his radiotherapy. My daughter had a similar chemo/radio/chemo regime, with radiotherapy to her face and sinuses. We were told that the radiotherapy may affect her pituitary gland and, if so, she may need growth hormone supplements. Even though she is a teenager and has probably stopped growing we have been told that even as adults we need some growth hormone to boost energy levels and for a feeling of well being. Anyway, she is nearly 6 months post treatment and had a test two weeks ago that shows she is not producing enough growth hormone and may need supplements.
So, I was wondering whether your son had radiotherapy in a similar place and if so whether he has been tested for growth hormone deficiency.

Has anyone else had experience of their child needing growth hormone? We are seeing the consultant next month to discuss it and I would be grateful for any ideas as to what questions I should be asking.

I also want to say how so very sad it is to read about the children who have lost their lives to this awful cancer. A day doesn't go by without me thinking of you.

message: Janine, my heart goes out to you, in a very big way, i am absolutely gutted for you, the lump inmy throat is choking me. I washoping against hope that the results would be conclusive, but alas you are still living in no man's land, this dam disease is so soul destroying, it's scary.

I know that some people will, be giving you the usual platitudes, but they don't really know exactly what you are going through, but it is you that is living with the uncertainty,and that is so, very, very hard.

It has now been a year since this horrible disease, entered our lives, what a year it has been. I never once imagined that would be someone going through exactly the same thing as Alycia, at nearly the exact same time aswell, spooky really. At least for us there has been a closure of sorts.

You and Jamie are often in my thoughts, and will continue to be there, a BIG MASSIVE HUG, for you and Jamie, take care, Tracy xx

message: Hi
I am the mother of a now 8 year old, who when she was 4 was diagnosed with embroyonal paramengeal rhabdomyosarco. She had 10 months of chemo and 6 weeks of radiotherapy. It was inoperable. I thought she was the only one out there!!!! She has growth hormone injection every day (radio destroyed her pituartory gland) - blind in her right eye - it wont come back, and walks badly (one of the chemo drugs) BUT!!! she is still here!!!! We have regular 3 month check ups, and even after 3 years its still a nightmare.
If there is anyone who is going through this wants more info, let me know. Good luck!!!!
We learn to deal with things on a day to day basis - Good day today she is in school!!!!

xx

message: Hi, just read your message to rosie, re; tiredness. My son also had radio/on his face as the tumour was in his sinus, he was just 9 when he had the radiotherapyno one has mentioned growth hormones to ourselves, maybe this is somthing further down the road, it is 10mts since he finished his chemo; he was always one of the bigger boys in his class, He has not grown much over the past 18mths I put that down to his chemo? Also for adamsmum I am so sorry, to read of your loss;

message: Hi, just read your message to rosie, re; tiredness. My son also had radio/on his face as the tumour was in his sinus, he was just 9 when he had the radiotherapyno one has mentioned growth hormones to ourselves, maybe this is somthing further down the road, it is 10mts since he finished his chemo; he was always one of the bigger boys in his class, He has not grown much over the past 18mths I put that down to his chemo? Also for adamsmum I am so sorry, to read of your loss;

message: hi tracy,thankyou so much for your post,i cant even begin to say how much your empathy means,im sorry ive not spoke for a while,ive been to and from the hospital with little man as his face puffed up so much that there was cause for concern over a bloodclot,after a weeks treatment and an xray,an echocardiagram and finally an MRI scan the treatment was stopped as there was no bloodclot dtected.his face is still puffy,the docs are really confused as to whats causing it but at least a secondary tumour and a bloodclot has been ruled out.hes now on piriton to see if its an allergic reaction to something,i personaly dont think it is but only time will tell.how is Alycia? i tries putting contact details on and i even emialed the site moderators to ask them to pass on my email address to you but my contacts got deleted and the site moderators havent answered my post,id love to know how to get intouch with you personaly! Jamie is back in nursery now,hes coping really well and his eating has improved so much,tiredness is an issue sometimes but ive got him in such a tight routine,he goes to nursery at 10,comes home at 1 and goes to bed till half 2 so at least hes got the time to catch up and not get overtired.its working for us anyway and hes settled into the routine very well.im not sure when the next scan will be,im assuming it will be at the end of treatment in feb/march time so until then we just have to take each day as it comes although im nervous now that the next scan will give us more fears rather than a definate answer.anyway,i do hope you and little alycia are well,my love to you both and i hope to hear from you soon.much love,janine.xxxx

message: Dear Neaney I just wanted to let you know of a lady I met last year on the oncology ward, while my son was having his chemo; Her daughter had been given only a 5% chance of beating her cancer when she was only 11 yrs old, she is now in her late 20's, I hope this will help you at your difficult time, as it often helped me.Best wishes to you. Gracie.

message: i am so excited i just have to tell the world.....we got told yesturady that jamie is free from cancer...hes in remission.Its almost like a dream and i am having to pinch myself to know that its really happened. Jamie has fought with everything hes had inside of him and hes won his battle...he was so very poorly and his prognosis was so bad but hes done it....please please dont lose hope if any of you have a child going through this,jamie has taught us that miracles can happen.xxx

message: i am so excited i just have to tell the world.....we got told yesturady that jamie is free from cancer...hes in remission.Its almost like a dream and i am having to pinch myself to know that its really happened. Jamie has fought with everything hes had inside of him and hes won his battle...he was so very poorly and his prognosis was so bad but hes done it....please please dont lose hope if any of you have a child going through this,jamie has taught us that miracles can happen.xxx

message: what wonderful news. For any one new to this childhood cancer this forum can surley lift there spirts and offer such hope at a time when it is so needed. Only parents like ourselves can know how much it means to hear such a positive story, all the best to you and your family Gracie.

message: I just wanted to say halllo and to pay tribute to my wonderful daughter Natasha who was diagnosed with rhabdomysacroma on 7 November 2007. She has had a 9 months of intensive chemo, 6 months of maintenance chemo and 6 weeks of radiotherapy. The tumour was the size of a rugby ball in her chest and as she was was only 2 years 8 months at the time it was obviously incredibly huge for her small body.

We were told that she wouldn't last the night a couple of days after she was diagnosed, I sometimes find it difficult to remember those times, I think we were in complete shock and that was what got us through the early days, we were just numb.

She hasn't just endured all her treatment, she has risen above it all and I find it impossible to say how proud we are of her.

She still has a wee bit of tumour left which is inoperable but as far as we can tell is dead. She has regular scans to keep an eye on it.

I fully appreciate how lucky we are to have her with us and my heart breaks for those parents who have lost their beautiful children, there but for the grace of God go I.

Thinking of you all