Hollie is a bright 6 year old who has everything to live for. She was diagnosed with a Brain Tumour called a craniopharygnomia when she was just 5.
In December of 2011, Hollie developed severe headaches, she was taken to her local GP on numerous occasions to be told she had child migraines or was possibly making them up as they only happened on a school morning and went within about 30 Min's.Believing what the doctors tell you we carried on with day to day life with the headaches for the next six months. Until one day in June Hollie developed a squint in her left eye, I then took her back to the GP who suggested we go to the opticians, By the time we managed to get an appointment hollies eye had got a lot worse and she could now see double. After the initial appointment we then saw numerous people, I asked what was going on to be told Hollie had a mass behind both her eyes and we should go to A&E at The Royal Berkshire Hospital. On arriving there with all of us including Hollies two older sisters age 10 and 12, We were seen straight away. Hollie was then give a CT scan (or the polo as Hollie knows it) and left to wait for the result. We were then given the devastating news that Hollis had a Brain Tumour. That day our lives changed forever.
We were then sent straight to the John Radcliffe Hospital where Hollie was sedated and taken for an MRI and had numerous bloods taken and many tests.To us our world had fallen apart.
On the next day 15Th June 2012 Hollie was taken for surgery. She had a biopsy on her tumour and a tube inserted so the fluid could drain. This needed to be done before there was any thought of removal of the tumour wall.The tumour had grown so large that it had filled the whole space in her Brain sticking to major areas and starting to travel down her spinalcolumn. Hollie remained in hospital for the next ten days while a horrid treacle like substance drained. In these days we were given a full diagnosis of which type of tumour Hollie has, a very rare tumour called a Caraniopharyngioma.
Hollie was then allowed home for three days, where she was christened and visited by everyone who loves her.
On 29Th June 2012, we returned to The John Radcliffe Hospital for Hollie to have major brain surgery, to remove what her consultant could of her tumour.
We waited six long hours not knowing what the outcome was going to be. The prognosis was very bleak, being told that the Hollie we had, would not be the same as, the Hollie that would return.
To our amazement and gratitude to Hollies consultant and all the staff, Hollie woke up to be the same beautiful, bright, cheeky little girl who went down. words cannot explain how I felt when she recognised me. (got goose bumps as I'm typing this). Her consultant had managed to remove most of her tumour apart form bits sitting on her pituitary gland, optic nerve and very close to her brain stem. removing these would of cause severe damage to Hollie's quality of life.
Weeks have followed and Hollie has remained reasonably well, she was put on hydrocortizone medication as they thought she had a deficiency to her immune system and developed Diabetes Insipidus.Meaning any little illness she got she was admitted to Hospital.
After meeting with the radiology department at the JR we were told Hollie needed radiotherapy to stop the tumour from regrowing, it will never be removed but needs to be zapped to stop this. At this point we were told we could be eligible for Proton Therapy Treatment which is only available in Jacksonville USA. This radiotherapy is a lot safer than treatment offered in the UK, causing less damage to healthy brain cells.It would mean Hollie and I leaving our lovely girls behind in the UK twelve weeks. After a lot of deliberation and discussions with family we decide it was the only option for Hollie.
We are currently in the USA and have been here for four weeks,the first week here Hollie had an operation to put four screws into her scull, so they can line the Proton Beam to hit the correct spot, she also needed to have her mask made that week too, however Hollie found it all to distressing. We then travelled to St Jude's Hospital in Memphis, for Hollie to be fully checked over, she was put through so much while we were there, and yet through all this she still remains our beautiful, smiling angel.On our return to Jacksonville Hollie had to be sedated for her mask to be made. The good news from all the tests has discovered that she no longer needs her medication and is fit and well for her proton therapy to begin Tomorrow 4Th February 2013.
We have had a long journey so far, so many ups and downs, we miss our girls desperately and still have a long way to go. Hollie will never be cured and the radiotherapy will cause her to have many development issues.The good out ways the bad .... shes still here with us.
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