Our 3 year old little boy has just been diagnosed with rhabdomyosarcoma

Hi, we are new to the group and just seeking anyone with similar experiences as us and some advice on what to expect really.

On Friday we were told that the biopsy from our sons tumor taken from his testicle has shown signs of spreading through the margin line although his chest is clear but he has to have a minimum of 9 cycles of chemotherapy. He is due to have a bone marrow biopsy and Line inserted this week along with with PAC test and then chemo starting next week. This has all happened so quickly as the lump only appeared in June and we thought after the surgery they removed the whole tumour.

So far our son is fit and healthy and doesn't know what's going on really as the lump has now gone. What should we say to him? He's only 3 so we don't want to scare him but how quickly will he start feeling sick from the chemo and lose his hair? 

Has anyone been through the same with their little ones?

Would appreciate any advice please.

  • Hi  and welcome to the online community

    I'm really sorry to read about your son's diagnosis. Any cancer diagnosis is devastating but it must be very hard for the whole family when the person with cancer is so young.

    I've had a look using the search bar at the top of the page for others who have rhabdomyosarcoma anywhere in the community and found these posts. You could have a read through some of them to see if any are similar to your son's diagnosis and reply to any of the poster's that you feel might be able to help you further.

    You could also post your questions in the ask a nurse section of the online community and one of the specialist  nurses will reply within 3 working days.

    When you feel up to it, it would be great if you could pop something about your son's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. 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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  • Hello, I'm not sure if this is helpful to hear, but I had rhabdomyosarcoma as a child and would be happy to answer any questions you have. My treatment was 20 years ago and things have changed since then, but in case it's helpful to hear from someone who has been given the all clear :) Does your hospital ward have a play specialist? They were incredibly helpful in explaining things in a way I could understand and helping me to have fun while feeling ill. All my best wishes for your son's treatment x