Ewing sarcoma

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Hello, I have just joined this group as my 28 year old son has a rare form of Ewing sarcoma. He is handling it better than me, bless him. He started his chemo 2weeks ago. 

  • Hi  and welcome to the online community

    I'm sorry to read that your son has recently been diagnosed with Ewing sarcoma and I know what a difficult time this will have been for the whole family. 

    I don't have any experience with this, as I had a different type of cancer, but I noticed that your post hadn't had any replies yet and by replying to you it will 'bump' the post back to the top of the discussion list.

    I hope you don't mind me suggesting that you might also benefit from joining the family and friends group which is a safe and supportive place to share your worries with others who have a loved one living with cancer. If this is something that you'd like to do clicking on the link I've created will take you straight there where you can join and post in the same way as you did here.

    While you're waiting for replies it would be great if you could pop something about your son's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi  my ten year old daughter was diagnosed with Ewing's last month and she has just finished her second cycle. There's not much I can say from my vantage point since we are also coming to terms with everything. I'll do as  suggested and update details in my profile in case it's useful

  • Hi I'm 26 and have also just been diagnosed with ewings sarcoma, how is your son doing, would love to chat!

  • Hi Tibby. I'm so sorry to hear you've been diagnosed with Ewings Sarcoma. I can 100% understand how you must be feeling right now. 

    Know that you WILL get through this. You have age on your side, and from this point on I can only say that attitude is everything. Hold your head up and know that you will smash this. 

    I've not posted on here before but my 14yo daughter was diagnosed with Ewings on the 10th October last year. It was in the 6th vertibrae on her spine. The tumour caused pressure on her spinal cord which meant that she lost the use of her arms and legs. She had an emergency op within 24 hours of diagnosis in Bristol Children's Hospital. After weeks / months of physio and occupational therapy her arms and legs started working again. From November 21 through to Feb 22 she had chemo, then Feb to April she had chemo + radiotherapy, followed by a few more weeks of just chemo. In May she rang the bell, and enjoyed the last few weeks of school before breaking up for the summer. We went camping in the summer - just me and her. She started back at school a couple of weeks ago. She had an MRI in June which showed no evidence of cancer. It was her 15th birthday last week, she had a sleep-over with about 6 of her friends. She's 100% back to normal, happy, smiling, dancing and running. Her hair is growing back she's the same old girl she was before all of this. She has a scan next week, and I'm certain that it all comes back clear again.

    For months I was a complete wreck - her future was just a complete unknown to me. It hit me and her mum way harder than I think it hit her. 

    It never stops being a horrible shock, but there becomes a new norm for a bit. It's not great but it's tolerable. If I could say anything - never read anything about it online. Don't read stats - they're meaningless. Attitude is everything. My daughter was literally dancing in her room whilst connected to the drip giving her chemo. Cancer still sits on my shoulder like a shadow, i think about it a lot, but it's not as scary for me now as it once was.

    I completely get how super-scary it will be for you right now, but this will ease a little as you get better, and you will get better.

  • Hi,

    My son has been diagnosed with Ewings Sarcoma 7 weeks ago. 
    He has had his first round of chemo 2 weeks ago.

    He is dealing with everything really well, much better then me and my husband.

    I go from positive to absolutely petrified. 
    I have never felt so helpless.
    I want to be best support for him, that I can be. 
    Have you got any advice?

    So happy to hear that your daughter is doing well. Heart

  • Hi, i'm so sorry to hear your son has been diagnosed with Ewings. I can't really offer much advice.  I was so insecure about everything, I wasn't sure whether my daughter would see another Christmas, or her next birthday. I was worried sick (literally) and catastrophising all the time. I woke every morning at about 4am and thought "this isn't real. This can't be happening to my daughter, she's so young". All I can tell you is what I wanted to hear at the time. I wanted to hear that she would be ok, but nobody would tell me that. 

    I always felt that the nurses and doctors seemed pretty relaxed about things, whilst I was pulling my hair out with fear at every point. I was entirely helpless and completely at the mercy of the hospital as they tended to my daughter whilst I could only stand by and watch. Now i see that maybe this is because they know what they're doing, they do this every day, and my panic / catastrophising was not helping.

    What I can tell you is that, one year on, my lovely daughter is still here, she's  absolutely thriving, loving life, and doing amazing. She has more friends now than ever, and loving school. She went through chemo and radiotherapy - looking back, they were both way less scary than I expected them to be. She's back at school, her scans are coming up all clear. Her hair is growing back now. A year ago she couldn't walk - now she's in the school hockey team (against my better judgement - but she's 15 now and adamant that she wants to live her life). She looks more like her old self, only she now "seems" way stronger. I feel much more confident and positive . I still think about cancer a lot, i'm still scared of it (she isn't) but I feel like i know she's going to be ok. I have some counselling from a therapist - just trying to talk to somebody about what i'm feeling. 

    I work with a guy in his late 60's who had cancer. It spread to his lungs and thyroid glands. 20 years later, he's still with us - cancer free.

    About 20 years ago, my father-in-law was also diagnosed with cancer. He's still here - in his 80s now. Cancer free.

    I play in a band and the female singer in our band got breast cancer about 5 or so years ago. She's still here - now cancer free.

    My aunt had breast cancer about 25 years ago - still here. Cancer free.

    I know now that children cope with all of this treatment WAY better than us adults do, yet adults make it through this, so children have an even better chance. People beat cancer. The treatment and understanding of cancer that hospitals have now is so much better than it was 20 years ago. I hear of MANY stories of people who had Ewings when they were younger, and they're all still here. That's what I wanted to hear - that people come through this and they're ok afterwards. 

    So, try and hold on to hope. I know exactly how horrible it is right now but gets easier. Look for some positivity from something - i know how impossible this seems.

    I don't know how old your son is, but I guess my advice would be to make him laugh, keep his spirits up, and keep him distracted from all going on around him with positive things. Make sure you try and get some school work from school for him - its a good distraction and will also stop him getting behind. Try and make sure he doesn't lose contact with his friends. My daughter sometimes felt pretty little lonely because one by one her friends stopped texting. Watch TV with him, bring him a treat. He'll get though this and you will too. 

    I'm so sorry you have to go through this. I do hope you're ok. Sending you all my best wishes and thoughts.

  • Thank you so much for taking time out to reply to me.

    So much of what you felt, is identical to what I am feeling at the moment. 

    My son is 18 and was about to take time out of education to have some fun, travel and then decide,  what he actually wanted to do in the future. His friends are either at university or doing exactly what he wanted to do. So far, they have been very supportive, but I do remember what it’s like being that age.

    Your message really helped me and I’m so happy that I did reached out to you. I don’t normally post anything. I know, that your story will help anyone going through this.

    I do wish your daughter an absolutely wonderful future. She sounds like an amazing girl.  My dad used to play ice hockey for our county.
    Sorry if this message is a bit difficult to read, English is not my first language.

    Thank you so much again. Heart

  • There are so many people on your side you through this. Try and find some positivity and strength to get through this bit - it will get easier, and you and your son will get through it. Take care.