Tell me how to help?

(1 Post)
oxcat1 Mon 09-Dec-19 23:06:15

5 years ago my 3-yr old niece was diagnosed with a benign brain tumour. She had proton therapy in America and appeared to do well, although the effects from the treatment itself were heavy.

Since then, she has been 'medically fragile', with several strokes (requiring further neurosurgery) and horrible additional side effects, but the tumour was stable.

Suddenly, that has changed, and her hospital admits she is beyond their experience - despite it being a world class specialist hospital.

She needs urgent brain surgery, but the surgery is likely to kill her, or leave her horribly damaged and potentially even vegetative. They are holding off until after Christmas, if they can, as many don't believe the surgery should even be attempted, and her care should instead be palliative. Her timeframe would be short, and her suffering quite intense in those last few months if left, but positive outcomes from surgery look unlikely.

How can I help? What can I do to help this little girl and her family? I don't live nearby and I have significant medical problems which means I cannot provide practical help. But what might be useful?

Should I start preparing a small bag of tiny cheap activities (crafts/'stocking fillers' etc) to keep her busy in the inevitable future hospital stays? Or will that just make a mockery if she is too poorly to do anything? They are pretty used to hospital stays, but I guess maybe small distractions are always useful? Her sight is impaired already so things like stickers are no good....

What can I possibly do to support her parents? There is surely nothing that can begin to help here? But I can't do nothing. For my own sake, I need to help, however poxy and small.

Any ideas at all please?

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