First thanks to @Mumsnet for setting up
the children’s cancer chat. I have posted under other names before and had so few replies. I asked in Young Lives if there was anywhere for prebereaved/anticipatory grief parents to get support, and then thought Mumsnet might help. Am delighted there is now a children’s cancer topic. So here I am. (Under a new name).
we have been told DD is chemo resistant and nothing more can be done. No timescales, and DD is well, at school, no lines, no medication, no knowledge of what is to come. An Immunotherapy trial drug will be made available when her tumour markers start going up
again. So we are effectively waiting for her to die.
I am trying tolet her live a normal life. I get her to take some supplements and am trying to feed the family a v healthy diet as have been sucked down some of the adult ‘eat your way out of it’ cure pages in FB. We haven’t told other people because she doesn’t know and we don't want her to be treated differently.
of course we remain hopeful about the immunotherapy. Some days I convince myself that the diet and supplements are keeping it at bay.
But the ache of sadness never leaves me. It is not right to watch a child go from ‘normal’ to death and I have no idea what to do with it. By which I mean the sadness, the pain, the fear. So much ‘she looks so well!’ from well meaning family and friends. But I know there is residual disease and an official relapse is weeks/months away.
Within our ‘being normal’ we are trying to have fun and enjoy life, and I echo the gentle parenting comment mentioned in the ‘new thread’. I am a different person now entirely and cannot unsee or unhear the things experienced (especially on Lion) and I don’t think anyone can understand.
Am hoping others from the YLvC chat will join here so we can support each other through this nightmare.
sorry for the long opening message 😫