Weʼve raised £2,211 to help fund a trip to America where 15 year old James Andrews is going to receive Proton Beam Therapy
- Birmingham, United Kingdom
- Health and medical
- Time left
- Funded on Monday, 13th November 2017
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On Sunday 15th October I will be running my first (and hopefully only!) marathon to help raise money for James Andrews. I know the Andrews family through my job and I have worked with Karen (James' Mum) for a number of years. James has undergone 3 brain surgeries in the past 10 months, and is now facing a lengthy trip to America for Proton Beam Radiotherapy. Although the NHS fund most of the treatment, there are aspects of the trip that the family are trying to fund themselves (such as flights for James' siblings to enable them to spend some of the time away as a family). When raising money for charity I know it can be frustrating not to know exactly where your funds are going, but in this case every pound raised will have a real impact. Your money will go directly to the Andrews family to allow them to spend time together in America at the start of James' treatment. Compared to multiple brain surgeries, running a marathon seems easy....well not easy, obviously, but certainly not as impossible as I once thought. Training has been ok, and despite some sores in strange places, I can't grumble! To quote Billy Ocean, 'when the going gets tough, the tough get going' and I've found that James' courage has inspired me on my longer training runs.
UPDATE: Tom Jarvis (friend and fellow 1st time marathoner) is also running for this very worthy cause. Thanks for getting on board Tom and your family and friends.
This is 15 year old James' story in his own words:
'In December 2016 I started getting a few headaches and blurry vision at school and feeling tired. I thought my glasses might need changing so I had my eyesight checked, but actually my vision had improved!
On Christmas Day I had a headache and was very badly sick on the way home from visiting my Grandpa, although I felt fine afterwards. The same happened on New Year’s Day.
On the 6th January I didn’t feel very well in the afternoon and as I came out of school and started to walk round to my Mum at work I was very sick and felt very unwell. A very kind lady stopped to help me. I started to feel sick more and more in January 2017 and the headaches were getting worse, and felt like they were crushing my head. My doctor had done some blood tests but he said he thought it was just a stomach bug as nothing untoward showed up in the results.
The pain in my head got even worse and I started being sick everyday so we went back to the doctors and asked him to arrange some further blood tests. These were done on Monday 23 January and we saw another doctor who took one look in the back of my eyes and said “don’t go to school this week, stay at home and I will arrange an MRI scan” to which we asked how long it would be and he said “they are done in order of priority”. On Friday 27 January I had an MRI scan at Worcester Royal Hospital where they found a brain tumour, cyst, and severe hydrocephalus, which is a build-up of fluid, in my brain. I got transferred to Birmingham Children’s Hospital that evening. By now the headaches were really bad and I started to get black out moments and numbness and loss of feeling in my arms and legs and face.
On Wednesday 1 February I had my first surgery and the neurologist performed a craniotomy to release the pressure in the brain and to drain the cyst. I had another MRI and CT scan to see how much the pressure and fluid had gone down. I came out of hospital on Wednesday 15 February after being in there for 19 days. Although they had been able to remove the cyst they hadn’t been able to remove the tumour because of where it was located and how it was attached to my brain. I was diagnosed with having a craniopharyngioma which is a rare benign brain tumour but one that is difficult to treat because of the area of the brain in which it is located. The tumour grows on the pituitary gland stalk and although it does not spread, it is very sticky and attaches itself firmly to the surrounding tissue and puts pressure in a delicate area.
Unfortunately, because the tumour had crushed my pituitary gland I have been left with a lifelong condition called panhypopituitarism and will forever have to take medication to replace the hormones that my body is no longer able to produce. I will also have to have treatment to allow me to grow and develop normally and carry an emergency steroid kit with me wherever I go in case I become unwell or am injured. I also have a condition called diabetes insipidus as my body doesn’t make a hormone that helps my kidneys work properly.
On Wednesday 29 March I had another MRI scan that showed another cyst had grown and the tumour had doubled in size. On Tuesday 9 May I was admitted to hospital and I had a transphenoidal operation where they go through the nose rather than the top of the skull. This was done by the neurosurgeons and ENT team and this time they successfully removed the solid mass of the tumour and all but a small part of the cyst wall which was stuck to some delicate parts of my brain. On Friday 12 May I had an MRI scan to check the success of the operation where they confirmed the results and I came home on Thursday 18 May.
On Friday 9 June I had an MRI scan. When we saw the Oncology team they said everything was fine and that they had removed all of the tumour so we should go and live life to the full and that there was no more chance of me getting it again than someone who had never had it.
On Monday 14 August I had another MRI scan and we went away thinking all was fine still, but when we saw the neurosurgeon we found out that a new cyst had grown and had doubled in size from the 9 June scan. I was told I would need another operation to drain the cyst which would this time be followed up by Proton Beam Radiotherapy in America.
On Tuesday 5 September I got admitted to hospital for a third time and on Wednesday 6 September I had another operation where a burr hole was made through my skull to drain the cyst.
I am currently waiting until Friday 29 September for an MRI scan to check that the cyst is still small enough for me to go to America for proton beam therapy and if it is I will be going to Jacksonville Proton Beam Centre on 9th October 2017 for 9 weeks with my Mum. I am really hoping that this prevents the tumour or cysts from regrowing and have been told that this is the only way to guarantee it. '
Updates appear here
Katie Parsons and Tom Jarvis started crowdfunding
Leave a message of support
Oct 27, 2017
Well done Katie!
Indra van Mourik
Oct 26, 2017
What an amazing achievement. Congratulations and well done.
Oct 25, 2017
A belated well done for completing the marathon. Xx
Oct 19, 2017
Oct 15, 2017
Fabulous achievement Katie, you are wonderful. Chocolate cake on its way to the office as you definitely deserve a treat! Very well done.
Oct 15, 2017
Oct 15, 2017
Well done Katie!All the very best for your treatment Tom.
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