Today my incredible little girl rang the end of treatment bell at our local hospital after receiving her final infusion of chemotherapy. She has endured 18 months of being poked, prodded and injected with toxic drugs, yet not once has she complained.*
*That’s a lie, she complains about the nil by mouth procedure every time she has a scan because, and I quote:
“it’s too long to go without food and when I wake up I’m starving my head off”
Unfortunately due to the nature of Eleanor’s condition this won’t be the last time she rings this bell and we are facing the prospect of more chemotherapy. If we are REALLY lucky she might avoid chemotherapy and the next treatment will be radiotherapy – or hopefully proton beam radiation therapy – when she is around 8 years old.
We’ve reached a point that feels like an end and we’re cheering because we’ve finished this leg of the journey. Everyone is pleased and we’re pleased, it’s a huge accomplishment because I cried for months and could never imagine being here feeling remotely OK with the hand we’ve been dealt, yet here we are.
However… despite the massive and amazing achievement, we have the haunting, looming shadow of knowing that something bigger, harder, scarier could potentially leap out at us at any point. It’s hard to feel too good and my stomach ties in knot at random moments when the thought enters my head. It feels like we’ve been sent on our way with our little girl who has a ticking time bomb in her head only we aren’t doing anything about it now!
The next phase we enter is called ‘watch and wait’, As I explained in my previous post Eleanor is scanned every 3-4 months and if the tumour shows sign of growth chemotherapy is resumed only with a different combination of drugs. All we can hope for right now is a good chunk of time where her tumour remains stable and her little body is given the chance to recover.
Today is for you my little hero. You’ve opened my eyes over the last 18 months and without even knowing it have taught me what real strength is.
Eleanor, a true warrior princess.
My daughter. My whole world.
I love you x