Mam of 18 month old recent ependymoma removal.

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Hi I'm new to this and it's all really daunting.

My daughter had an Ependymoma removed 24th May and followed with 6 weeks of Proton Beam Radiotherapy. Both thing's considered went by with ease. I'd been advised she's been through the worse. 

She had her first round (out of 7) of Chemo this weekend and I just don't know how to help her. She has a rash which I believe is caused by the Chemo but that's a debate in the hospital. It was all over her tummy, back, neck, scalp and left hand side. 

It's mostly aggressive on her left leg which I'm struggling to stop her from itching. 

They have her on piriton twice a day but just doesn't ease her leg, she's not drinking much neither which I'm led to believe would help. 

She has a dual hickman so baths are hard.

I feel helpless to my tiny human Disappointed any advice would be amazing. Thank you in advance xx

  • Hi zcejc

    a warm welcome to the group. So sorry to hear about all you and the wee one are going through. Scary times.

    This isn't an area I have any personal experience of so I feel a bit helpless in what I can say to help and support here. My experience lies in supporting my husband with his stage 4 brain tumour journey. I can't begin to imagine how hard it is to see your daughter going through this as I know how hard it is watching my other half.

    This is a really safe and supportive group so I am hopeful that someone else will be along with their words of wisdom shortly. I did check the wider MacMIllan site for any information that might be of use to you. Here's the links to what I found The experts in childhood cancer | Advice, resources and support for families affected by childhood cancer | Funding vital research into childhood cancer | Children's Cancer and Leukaemia Group (cclg.org.uk)   and Ependymoma | Macmillan Cancer Support. You've perhaps already checked these out.

    With regards to the itching, my husband had really itchy skin after his radiotherapy treatments, and we tried aloe vera gel so perhaps that's something you might want to consider or perhaps a lavender-based gel. Perhaps irrelevant but thinking back a good few years to when my daughter had horrendous chicken pox it was Kamillosan cream I was advised to use to stop her scratching as it puts a layer over the rash,

    As for encouraging her to drink more liquid, maybe try buying her a new cup with a favourite cartoon/Disney character on it to get her interested. Just a thought.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now though, I'm sending you both a huge virtual hug and lots of positive energy, healing, love and light.

    Love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Really sorry to hear about your daughter Frowning2

    I actually have terrible itchy skin myself and tried lots of things - I have recently started trying Aveeno and it’s working

    redness has gone, the flaking is reducing and it’s much less itchy 

    it might be worth a try

    i think there is a baby version if you didn’t want to try the standard stuff 

    xx