AUGUST 2013

Well, it is now 9 months since Steven’s surgery and it is about time I wrote an update.  At the time of writing this the website has had almost 130,000 hits since we set it up a year ago now.  That to us is phenomenal.  Thinking back to this time last year seems like a bad dream, a nightmare, the high dose chemotherapy had almost taken our sons life and we were faced with the fact that his brain tumour had grown, all our hopes were fading and we were desperately afraid at this time that we were going to lose him.

How far we have come since then.

We left LA for home on the 29th December,  Steven was unable to walk and the journey home was difficult, but we couldn’t have managed it at all without him being able to lie down in Upper Class thanks to Richard Branson.  It would have been impossible for him to sit for 12 hours. After almost 6 weeks the hotel in Thousand Oaks had come to feel like home and although we were pleased to be home it was also a bit daunting knowing that we were now a long way from the expertise of Dr. Shahinian.  We felt safe knowing that he was so close, Thousand Oaks Surgical Hospital (TOSH) was literally five minutes away from the hotel.

We came home to a belated lovely home cooked Christmas dinner, (our real Christmas dinner had been “subway” at Venice Beach).  After settling back in and making a fuss of our two German Shepherds who had really missed us, the reality of what we were facing hit us.  Steven still had brain swelling and he had become immobile, our house is two floors with bedroom and bathroom upstairs, so the settee had to become bed for him until we could arrange for him to go to rehabilitation.   After five days of trying to cope at home, he was admitted to Charing Cross Hospital. During the month he spent in Charing Cross an MRI showed that he had developed hydrocephalus due to tumour debris blocking the third ventriculostomy that he had before surgery. Due to this a VP shunt was fitted (a shunt that goes from the brain to the stomach) to relieve the pressure in his brain.  This really helped with his communication problems and mobility issues and he was able to hold a conversation straight after, and the physios began working on his mobility.

Progress after brain surgery is a slow progress and things can continue to change for a long time afterwards.  It is also not a straight line after surgery as Dr. Shahinian told us, and there have been ups and there have been downs.  We have kept in contact with Dr. Shahinian, he continues to review Stevens MRI’s which he has had three of up to date and each one shows an improvement to the area that is left with it reducing in size.  He is very pleased with Stevens progress and reminds us to be patient.  You tend to think that because surgery was months ago everything will have returned to normal, but that is not so. It is brain surgery after all and the brain is a very delicate organ.  He told us after surgery that now we have to rebuild Steven, not just from surgery but from everything he went through during his treatment.

Gradually, over the 9 months Steven has returned to being “Steven” personality wise.  We truly felt as though we had lost him before the surgery and didn’t know how much of him we would get back, if anything.  To see him gradually return to his old self is the most amazing thing and we know that if we hadn’t taken him to Dr. Shahinian he would not be here today.   We will never ever be able to repay the gift that he has given us.  As Steven celebrated his 26th birthday we knew that it could have been so different  if we had listened to his neurosurgeon here when we told us that no-one, anywhere could do this operation and we would be wasting our money taking him anywhere.   He was sent home with a death sentence and I thank God every day that we did not accept that.  He is here today and he is thriving, he still has problems, some of which are difficult to overcome, but he is here.

Your continued support and donations are very much appreciated, due to the urgency of treatment needed we had to get Steven to LA before we had raised the amount needed for surgery, currently we have raised just over £50,000 of the £100,000 needed.