Up until Steven’s brain tumour was diagnosed in August 2010 life was normal, he was a happy, outgoing 23 year old who was russian brides com review enjoying life with his friends.  All that changed with one sentence “I’m afraid you have a brain tumour”.  However, Steven was positive, believing that an operation (albeit brain surgery) would get rid of it and everything would be ok.  It was just a “blip” in his life. Nothing much to worry about.

And so began the appointments at Charing Cross Hospital and a work up to surgery. At the end of September he was scheduled to have the tumour removed, but an MRI done on the morning he was having the operation revealed that it would be too dangerous to attempt to remove it because of its location and a biopsy was carried out to ascertain what type of tumour it was.   The tumour was located in the deepest recess of the brain the pineal gland which is at the very centre.

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In October he had an appointment to see a consultant in the radiology department and from the amount of people who had gathered in the room it was obvious it was not good news.  When they told us it was malignant, a germinoma, it took us completely by surprise, we were really not expecting that.  They were optimistic however, as this type of tumour is highly responsive to both chemotherapy and radiotherapy and he had a 95% chance of a complete recovery.  “As brain tumours go, this is one of the best types to have” we were told!

Over the next 8 weeks Steven underwent chemotherapy every weekend as an inpatient, even spending Christmas Day and New Years Eve in hospital, there was no deviating from the schedule.  Additional chemotherapy was given by lumbar puncture every two weeks during this treatment so that it would get through the blood brain barrier and directly reach the tumour.

Hopsital bed

At the end of  this he had stereotactic radiosurgery where he was fitted with a specially made tight fitting mask which was then clamped down to a treatment table whilst a precise beam of radiation was delivered to the tumour.  An MRI scan a month later showed that although there was a tiny fragment visible it was most probably just debris which would dissipate on its own.

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Radiotherapy

It was over, he could start to enjoy life again and be a normal 24 year old, and for the next year his strength gradually returned and the old Steven came back, but gradually there began to be some worrying symptoms, blurred vision, headaches, sleeping more and after another MRI the professor confirmed our worst fears that it had recurred.

This time the outlook was not so good, and he was given a less than 50% chance of beating it  The news knocked him sideways, but he continued to remain sure that he could beat it.  From then on the treatment was going to be intense and the professor was going to throw everything he could at it.  Steven started salvage chemotherapy, again with weekly intrathecal chemo (lumbar punctures) and a build up to two treatments of high dose chemotherapy with stem cell transplant began.  The high dose involves giving much higher doses of chemotherapy which completely destroys the bone marrow.  Stem cells are harvested before the treatment starts and transplanted after treatment ends to enable the body to start replacing it.  In the meantime there is a period of time when the body has no immune system, and therefore is unable to fight off even the smallest infection.  Steven ended up in intensive care for almost two weeks fighting for his life after contracting a particularly bad infection.  Being the fighter he is, he pulled through, but the news is not good, the tumour has not shrunk, in fact it has grown and we are now faced with the fact there is not much else can be done here.  During a consultation with a neurosurgeon at Charing Cross Hospital we were told that surgery to remove or even debulk this tumour  is impossible as if it didn’t kill him it would have a devastating effect and severely disable him and that no-one anyway could safely carry out this operation.  There is no way in the world that we can accept this news, there has to be something that can be done, we refuse to accept a death sentence for our son.

We have carried out many hours of research and this has led us to Dr. Shahinian of the Skull Base Institute in LA, the pioneer of endoscopic brain surgery.  He has successfully carried out more than 4,500 fully endoscopic brain surgeries and works alongside Nasa to develop the next generation in endoscopic tools. Although neurosurgeons here have deemed this tumour inoperable, a skype consultation with Dr. Shahinian has given us hope as he is confident that he can help Steven. Dr. Shahinian is our light at the end of a very long dark tunnel and we are now on a mission to get him there for surgery.

After speaking to Dr. Shahinian, we were given a tentative surgery date of 28th November and a package fee for surgery of £100,000.  Hotel, flights and car hire would be extra.  We could have chosen a later date after Christmas but we did not know how much Steven would deteriorate and we knew that it was crucial for him to be operated on as soon as possible.  We had three months to raise £100,000!  Everyone we knew and a lot of people we didn’t know jumped into action and arranged fundraising events and supported and helped us.  We are truly blessed to have such wonderful people around us. and we can never ever thank them enough for everything they did. In the meantime, we had to sadly deal with the loss of Steven’s dear Nan, but we were so thankful that we were able to tell her that Dr. Shahinian was going to be able to operate on Steven and that she didnt pass away not knowing.

UPDATE…….

We arranged to fly out to LA on the 23rd November and after replying to a tweet Richard Branson arranged the flights for us with Steven and Paul in Upper Class, what a wonderful kind man he is.

By the time we flew out we had managed to raise £40,000 of the £100,000 needed,

Steven had his surgery in LA by Dr. Shahinian on the 30th November, it became apparent that Steven was deteriorating quickly and surgery was an urgency.  We could not afford the luxury of time so we borrowed the remaing £60,000 to make this a reality for Steven and this brilliant surgeon performed a successful surgery and gave Steven back his future.  For that we will be forever grateful to him. We were very fortunate that people came forward to lend us the money for the surgery but we obviously now have to repay them for their kind gesture, so we need to continue to fundraise in order to do this.

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If anyone has any fundraising ideas, please contact me suzanne@stevensfightingfund.co.uk  – Thank you.


 


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