Hey there. I've been at home with my little one for 13 weeks now and I'm struggling, she's been laying in bed since we came home as she had 10 days of seizures. It's been the worst 3 years for us all. Evie was brain damaged at birth, the. Diagnosed with eye cancer and has been treated her whole life for cancer, as well as battling the crippling effects of her brain injury, leading to severe brain damage. All that aside she is amazing, full of smiles sounds and personality until she had a massive seizure 14 wks ago. It's just so so tough, she has leptomeningeal carcinomatosis and therefore is terminal. It's just so so hard watching her slowly deteriorate. I'm really struggling to see her now as the cancer In her eye is now pushing her left eye out. She's so skinny, we massage her everyday so gently, she lays on a sheepskin and we have avoided bed sores, it's just she's not rousing at all now, she's mostly calm, I don't really know what kind of support I'm looking for really, just really so so sad and confused and desperate for her suffering to end but terrified of her being gone...... Thank you for reading xxx
omg I'm so sorry to hear this. my daughter has leukaemia so I have a slight idea of how u feel. I'm not to sure what to say, but feel free to message if u need anything.
Love be of love and hugs
I feel like a silent and long hug would be the best thing here...but of course we can't do that. This is so hard for you and your family. The massage sounds wonderful, if difficult, because it gives you and your daughter that amazing closeness of touch. That same feeling you have had from the moment she was born. She can feel you and you can feel her and she knows your touch. There's so much comfort in the slightest touch from someone who cares about you and you're sharing that with her as she takes this journey.
I've faced it. You're not alone although it may feel like it at times. You don't have to be strong all the time. Lean on those who support you, this is a great way of reaching out in your time of need.
There are no appropriate words right now. I sense your sadness and despair. Thinking of you.
"A broken crystal still leaves rainbows on the wall....."
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