Lily-mai's Disney wish
Our world dramitcally changed on the 15th july 2014, i was practicing cruising and i fell, banging my head, i went very sleepy and started to vomit, my mommy thought i may be concussed so called 111, who sent the ambulance team out. we were rushed to hospital and i was incubated so i could have a CT scan to rule out any bleeds on the brain...they found a brain tumour the size of a tangerine and hydrocephalus. I was rushed to BCH to have an emergency EVD put in to relieve the fluid and pressure on my brain. On the 18th july i had my 8 hour operation to remove the tumour, however, they couldnt remove it all as its attached to the brain cortex, a later MRI scan showed another piece also remains, that leaves about half left. On the 19th july, 9 hours after my op, my left lung collasped,oxygen levels went down to 19%, i could have died if the amazing staff hadnt of acted to quickly... i was incubated again, so that machines could breathe for me whilst i healed on PICU. i also lost the use of my right side, but with amazing physio team, mommy's and my hard work it came back. i also have a unsafe swallow, a silent aspirate, which means my body doesnt recognise food or liquids going down to my lungs, so im now fed through a NG tube...the angels are certainly looking out for me.
On the 25th july, my mommy had the devasting news that the tumour is malignant... a brain tumour called MEDULLOBLASTOMA. The best treatment for this is radiotherapy but as im already very far behind we are using a french baby protocol, an intensive course of chemotherapy over 72 weeks. We dont know my prognosis, its anywhere from 30% to 65% survival over 5 years. I have has a pernament shunt put in to help keep the fluid building up on my brain and a Hickman line put in for treatmen, I have regular MRI scans, lumbar punctures, weekly blood draws, blood and platelet transfusions, eyes, ear and kidney are checked, lots of hospital stays.
I would love to be able to go on a special holiday to meet Minnie mouse and all the Princess's, to swim with the dolphins, i loved swimming and ive now had to give it up, i miss swimming so much so this would be very speacial to me. It would also mean i have something to look forward to once my treatment is over or tp give my mommy,sister, brother and daddy a happy to memory in case i gain my angel wings.
Please help my mommy make this dream come true as it would make me so happy... Just £1 would be so much help to make this happen, every princess deserves a happy ending. All your generosity is greatly appreciated, thank you everyone, lots of love Lily-Mai xx
I'm currently in hospital, I was in Worcester royal for 6 days and I'm now in Birmingham children's. I keep having very high temperatures that have reached 40.5. I have had a uti and c-diff, so currently on 2 lots of iv antibiotics. Hope my temp goes down so I can go home xxx
Lily is now terminal, her original chemotherapy hasn't worked, it has grown along with a new growth and its spread to her spine. Lily has 'months' to live. We have started a very low dose chemo to try and prolong her life. She has also had a peg to help with feeding. She is still a smiley little girl, America is out of question now, so we are doing Euro Disney and plenty of other trips for her such as peppa pig world, Blackpool illuminations ect xx