Radiation & Steriods

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FormerMember

3 Apr 2015

We are on our second week of aggressive radiation treatment, we are on steroids (prednisolone) to try reduce the inflammation around her brain from the radiation, seems you have to treat the treatment as well as treating the tumour! Kee is being amazing, truly brave little soul enjoys playing with the other children. GOSH is an amazing hospital, can't thank the nurses and doctors enough, very supportive and they love Kee.

We have started to have some trouble with words, she seems to slur and forget words, when she is normally very chatty and bubbly. Hopefully the radiation will bring back some of her speech, fingers crossed it shrinks the tumour so we can spend more time with her.

FormerMember over 9 years ago

Hi Penny

I just left a reply on the other thread for you if you ever did want to chat at all...are you under Darren Hargrave at GOSH?

I really hope the radiotherapy is going OK is she being put to sleep each time with a port? or being very brave and lying still in the mask. My daughter changed a lot and also went quieter through treatment, its difficult to tell whether its radiation, steroids or disease that makes the symptoms worse but about 80% of kids do improve with RT, my little girl did get back on her feet for a short while.

The steroids whilst useful were really quite horrendous with weight gain and the 'roid rage' ...such an awful experience...the night waking..its such a difficult time unless you've done it I really don't think anyone could explain. Anyhow fingers crossed you get some good quality time back with your daughter.

All the best Amanda
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FormerMember over 9 years ago

Hi Amanda, I did come across of abbies army during my frantic search on google, also james fisher journey and layup lauren, who have both sadly passed recently. She is being put to sleep each time, so it's a long process every time we get radiation.

We have been warned about the steroids, the way they make you gain weight and cause bones to thin.

Thank you for contacting me, it's nice to hear from other mums who know what it's like. It is a very isolating time at the moment.
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