Allana and Gemima Journey
Forwards and backwards my mum took me to the local GP, but nothing I was a hypochondriac!!
As months went on I was constantly asleep, from the minute I sat down or walked into the house, there I was again- asleep!
My drinking any fluid also increased rapidly, from anywhere around 4-7litres a day or more. My family knew something was not right.
Forwards and backwards God knows how many times, but everything got worse from bad blurry vision, to an increase in weight and my balance was always on edge.
Can you even believe this diagnoses was being allergic to cheese!! I LOVE CHEESE haha.
It got to the time when all my friends would be having trouble and complaining about there ladies monthly cycle, which I never was able to relate to, and still to this day I can't. GP kept saying come back next year, or come back when your over 18?
Then the most embarrassing came, where a 16 year old became incontinante! It got to the stage where I would not go to work, to the shops basically anywhere where there was public!
No diagnoses was made of this and I was put on a medication called "oxybutynin" and then fobbed off again!
Twitchy eye started in my right eye " she's winking at me again" my family would say ha ha! This was due to my oxybutynin medication.. Wrong!
On the 21st May 2015 my opticians finally and luckily transferred me to the emergency hospital eye clinic where my mum broke down (embarrassing) which saved my life..
Within 10 minutes of the specialist Doctor seeing my mum in a state I was having a CT scan which then rapidly I was having an MRI scan.
Before I know it I was told the devastating news.
I am a 17 year old with a Craniopharynigioma ( which I call Gemima ) it consists of a solid tumour which has a large cyst attached also. It is situated on my pituitary gland and pushing against my optic nerves to my right eye.
On the 22nd May 2015 (morning after) I was in my first operation which was to release the fluid on my brain which was left draining for a week.
28th May 2015 was my second operation to remove as much tumour as possible without causing any life threating damage to myself.
Unfortunately where Gemima is situated they have had to leave a mass of a 4cm tumour, which is nothing before surgery she was 15cms!!
I recovered well with slight problems and swelling. Oh and with one eye, but I soon sorted that when I was told it will never open. With some determination I used masking tape daily to cellotape the eyelid and try to get my muscle working again.. It worked!
My next steps are where I hope I can have some help ASAP.
I am due to go to America to undergo Proton Radiotherapy treatment after Christmas/early new year; this treatment is a specialised type of radiotherapy, which reduces the radiotherapy effecting surrounding normal tissue, potentially this can help no life time or long term side effects.
NHS England, once approved will fund for me and my mother to go for 3 months. NHS is unable to pay for immediate family, daily living expensise over in the US and also upfront payments that are needed.
There will also be spare time where it's possible to hopefully go for day trips and also visit Disney Land Florida during my once in a life time experience.
As much as I don't want to be writing my story and asking for help, I have too! The last 6 months have been the hardest for my family and friends and most of all me. I have been truly blessed with love and support and would have never been able to do this without any of you. This is why I will fight this, and come back fighting with every downfall to prove to you all and also myself I'm a fighter and will over come this horrible illness.
I have a family Friend who just in the last few weeks had their daughter go through the very same surgery. The father posted this story just now on Facebook and said he would love for his daughter Lizzy to be able to talk to Allana. Is there anyway we could make this happen, she is also a young girl, and is currently having her radiation treatment I believe. Here is her FB page https://www.facebook.com/groups/1209945679032048/?pnref=lhc I think it would be amazing to get the two in touch, as they are going through similar situations. Anything would be amazing, even just a Hello or Hi. Regardless Allana is inspiring people and girls like her to get through this. God bless you and your family!
Hi ya Allana, all my love and best wishes xxx Mrs Randle (Sharon ) St Giles Junior.
Hi There, We have a nephew who went through the same diagnosis and treatment when he was 8 yrs old, he is now a strapping 20 years old and lives here in New Zealand. For most of the time he lived in Los Angeles and was operated on there twice and also had similar treatment to you. He manages with one eye, is doing college courses and hoping to go to university soon so with all the love and help you are getting I am sure your outcome will be the same. Wishing you every success and we will pray for a good response to your treatment. Blessings Sue