Last week on the 31st of August my little Lucy was diagnosed with a Brain Stem Glioma. To say it hit us like a tonne of bricks is an understatement. It is a very, very aggressive form of tumor and a fucking bastard. Look it up if you like but it's not pretty reading. The prognosis for this type of tumor is 18 months but having done extensive research it's significantly less and if anyone who knows Louise, knows she's researched the hell out of it. Lucy doesn't know the timeline of events right now. She knows she has a tumor and it's bad but we don't want her to know more until we have to tell her.
Lucy is going to have radiology treatment and will improve significantly. She should be able to go back to school and play with her friends, which she can't wait for. However, we don't know how long this will last for and once she begins to deteriorate, it will be rapid.
We know we will need equipment, rooms changed and all manner of other items, we just don't know when and what right now. We will have people to assess and help us but we are still feeling lost about all of this. We would like to be able to make her comfortable as soon as it starts to go downhill, and have what is needed for her. That is the point of setting up this fund.
This fund will not save her life but it might make her last days as enjoyable as they can be.
Anyone who has met Lucy, knows she loves to look after and be surrounded by people. She learns their names and everything about them in no time at all. She has an amazing soul. So, invoking her spirit, any money that we won't be able to use will be given to Temple Street Hospital. The doctors and nurses have been fantastic. They are so kind and amazing and look after Lucy so well. I am indebted to them forever and know, no amount of money will ever be enough.
Lucy is in good spirits and is making fun of her father at every possible time she can. The farts when I move her, in the hospital bed are horrendous. She times it, I swear and then laughs at me. She is sarcastic, dry and while her speech is slow her tongue is not. But, she is also terrified, cries about coming home on a daily basis. and she misses her brother and sister and all the other members of her friends and family.
We're taking each day as it comes and we are taking the small wins when we get them.
I'm going to lose the smiles, the laughter, the cheekiness, the cookies, the buns, the hugs, the kisses. I'm going to lose my Lucy and I am fucking terrified.
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