23rd November 2012

Well, we are on our way, a mixture of emotions, terrified, nervous, most of all excited for a new future for Steven, but also sad at leaving everyone who has supported us and made this possible. We know you are all routing for Steven though. we just want to bring everyone along for support. Arrived in LA in thick fog, thought we were passing through clouds and then bump, felt the wheels touch the runway but we were still in the “cloud”. We had a fantastic stress free time at the airport and on the plane, thanks to the lovely Richard Branson. It could have been a very much different experience for Steven and we are so grateful that it was good for him. Picked up at LA by limo supplied by Skull Base Intitute and taken to Best Western in Thousand Oaks – thank you Angie for arranging that, it is perfect and really close to the Hospital. Long day over, we were all in bed by 6.30 pm, but it would have been about 2am in London.

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Sunday 25th November

Spent a couple of days settling in, getting hire car and familiarising our selves with the location of our new home for the next month. Steven has not had a good couple of days, he is sleeping excessively and it is such an effort for him to do anything, the 6th December still seems like too long away.

Monday 26th December

Christina from the Skull Base Institute rang this afternoon to tell us that they have a slot that has become available for surgery on Friday and we are to go in to Dr.Shahinians office tomorrow morning for pre-op consultation. The operation that will hopefully turn Stevens life around is now in 5 days time. Steven is pleased that we doesn’t have much longer to go but obviously apprehensive about the surgery but we know that he is going to be in the best hands and he has us, you and his nan in heaven to help him through this.

Tuesday 27th November 2012

Picked up today at 8.45 am for a 10am appointment in downtown LA, but the freeway was jammed and we didn’t arrive until after 10.30. Very grateful for the limo ride there as I think we would have had problems finding it ourselves. A lot of forms to fill in and then we meet Dr. Shahinian an impressive man with a fantastic manner. He carried out some Assessments on Steven and went over his history in detail. he then went over the MRI scans of Stevens tumour and pointed out areas of concern, grey areas which he will not know what they are until he goes in. They could mean that the tumour has infiltrated the mid brain area or it could be even scar tissue from previous treatments or swelling around the tumour. The tumour is sitting slightly to the right it is not dead centre, hence the symptoms that Steven has been having are focused on the his left hand side. Surgery will not be easy, and there are no guarantees that everything will go smoothly, but we are reassured that Dr. Shahinian will do everything he possibly can to remove as much of this tumour as he can safely do. We are absolutely 100 per cent sure that we have come to the right surgeon. Dr.Shahinian is compassionate, kind and direct, his parting words to Steven were “You hang in there for a couple more days Buddy, and I will go in and dance with this tumour”

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Friday 30th November 2012

We wake up to rain and it looks like English weather in LA only not cold, arrive at the hospital at 7.15 and Steven is taken to be prepped, lots of neurological tests are carried out so that they can do them all again afterwards to assess how he is responding after surgery. We meet the anaethetist and other theatre staff that will assist Dr. Shahinian and then just before Steven is taken to theatre Dr.Shahinian comes to see us to answer any last minute questions. He is going to keep us informed on what is happening during the operation every hour. It is not possible to tell how long the surgery will take but it could be an hour or more before it actually starts due to the preparation involved and then a good few hours after that. Once again, his calm, professional, confident manner reassure us and as Steven is taken to theatre we go to begin the long wait in the hospital lobby. We are all in for a long stressful day and are comforted by the amount of good will messages that are flooding in from home. We feel like we have bought everyone with us.

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At 12 o’clock comes the first phone call from theatre, they are just starting the operation. An hour later, another call, Dr.Shahinian is in and making his way towards the tumour, it is not visible yet, but Steven is stable and it is going well. Next call comes to say that Dr. Shahinian is now eyeball to eyeball with the tumour and it is all going really well. The tension is building now and When the next call comes I can’t take it and Paul goes to the phone, Dr.Shahinian can now see the whole tumour and is working away at it, so far it has gone superbly. We are watching the clock for the next update and praying that Dr. Shahinian does not walk into the lobby as that would mean that it was something important that he needed to discuss with us and there would be decisions that we would have to make. Then the phone call we have been waiting all day for, he is closing now and just stitching up, and he will be out to see us in about 45 minutes.

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Dr. Shahinian bought with him some awesome photographs of inside Stevens brain and the tumour exactly how he saw it and after it had been taken out. He told us that he had taken out 2.7 cm of tumour which is the size of the tumour on Stevens last MRI scan and Steven was in recovery. He has able to remove as much as was safely possible and he was pleased with the outcome and that he is not easily pleased. For Steven, waking up ok is crucial and then they can start the obs to assess him. It has been along day for everyone, Steven, Dr. Shahinian and his team and for us waiting, the relief that Steven has come through this and the realisation of just how skilled this doctor is hits hard. I am not the best at expressing how I feel but I just want to give this man a hug, but instead I just say thank you, how inadequate! Steven is awake when we see him and looks good, considering what he has just been through, what a relief, what a day and what a fantastic outcome. The nurse goes through his observations and asks him questions, most of them he answers with the rights answers but doesn’t seem to be able to recall my name after a few tries the nurse says “What does your dad call your mum”? to which he replied “Dipstick” , well I suppose he did get it right! After a while Steven is transferred to his room where he will be constantly observed all night.

 

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6th December 2012

Well, it has been almost a week now since Stevens surgery and although I have updated the Facebook page I am guilty of neglecting the website updates. Today would have been the day that Stevens surgery was due to take place before it was bought forward. I am writing this in bed, the print is very small and my eyes are tired so if there are spelling mistakes I am going to correct them tomorrow. During the couple of days after surgery Dr. Shahinian came to see Steven regularly, even though it was the weekend. There were a few issues that became apparent, one being that Steven was having problems swallowing. He can swallow food perfectly well but has a problem with liquid. The nurses tried various things, thickening up liquids, drinking on the left side, turning his head to the left before he tried to swallow and lemon, which automatically makes you swallow and drinking on the left side seemed to help. His left side is also still very much weaker than his right and he is unable to stand unaided at the moment. His left side was very weak however before surgery. His eyes have improved, the double vision has improved although there is still some blurriness at the moment. there is still a lot of swelling though which will take a while to go down and we are noticing an improvement, albeit small ever day. Every step is a step n the right direction.

20th December 2012

Now I have left it even longer to update, I have kept everyone up to date at home through Stevens Fighting Fund Facebook page and I am sure that those of you not on Facebook have probably had the news relayed to you one way or another. we originally thought that Steven would spend 2 nights in hospital but he wasn’t ready to come out and he spent 5 nights there. He improved slightly every day and we began to realise just how slow his recovery was going to be. He would communicate with us sometimes and other times we had difficulty even getting him to open his eyes. He remained unable to support himself when standing and was very weak. Dr. Shahinian came to see him every day, often more than once. On Tuesday when Dr. Shahinian came to see us, he told us that he had some fantastic news for us – the pathology result had come back and it showed that the tumour was DEAD, no active cancer cells, just dead, necrotized tissue. That news was what we had longed to hear for so long, our son no longer had cancer, would not have to go through any more chemotherapy and now we just had to rebuild him and let him recover from everything that he had been through over the past two and a half years. The months of research, worrying whether we were doing the right thing, even though we all knew in our hearts that this was Stevens destiny, this was where he was meant to come, and this was the man that would give him his future back, all culminated in this one overwhelming moment. This brilliant skilled surgeon had made our hopes and dreams come true. We will be grateful to him for the rest of our lives.

All the nurses and staff at Thousand Oaks were amazing, Steven had excellent care, nothing was too much trouble, the rooms were great more like hotel rooms than hospital rooms and Paul was able to stay with Steven every night. They even arranged for Steven to go to another hospital Los Robles TCU about 2 miles Down the road for rehab when he left TOSH for physical and occupational therapy to strengthen him to return home at no extra cost to ourselves.

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He continued to improve slowly in Los Robles, and was soon walking to the end of the corridor with the aid of a walking frame and help from the physical therapist, the staff here were wonderful as well and he was very well looked after. Each day he would do his therapy and we would take him out in the wheelchair for some fresh air and sunshine. We were due to fly home on the 20th December so he was released from Los Robles to come back to the hotel room with us on the 15th December. It was lovely to have him back but very difficult to continue the rehab as much as we would have wanted to as he was unable to stand unaided and was still very weak and extremely tired. We did manage to get him out every day and just about managed to get him from the wheelchair into the car but his mobility declined so much that we didnt feel he was up to the 11 hour flight back on the 20th. After contacting Virgin, they kindly re-arranged our flights home for the 29th December to give Steven a bit more recovery time. We were going to spend Christmas in LA!

Steven had his follow up appointment with Dr. Shahinian on the 18th December and he removed the staples, it would have been fantastic if Steven could have walked into the room and shook his hand, but that was a bit too optimistic, one day he will do it though. We told him that we had extended our stay and he would like to see Steven one more time before we fly home. Unfortunately that afternoon Steven had what appeared to be a small seizure and I had to phone Dr. Shahinian who decided that he should take an anti-seizure medication and to let me know straight away if it happened again.

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We did manage to get about a bit and visited Paradise Cove, Malibu , Santa Barbara, Long Beach and went to Santa Monica Pier on Christmas Day and ate Subway for lunch at Venice Beach! Stevens desert at Paradise Cove was called “The Works”, it turned out to be a piece of Chocolate cake the size of a house brick! He was so tired the day we went to Santa Barbara that he fell asleep eating fish and chips.

We had our last Appointment with Dr. Shahinian on the 28th December before we left LA, a very emotional meeting. How do you thank the man that has given you back your son. He feels sure that Steven is going to make a good recovery, it is just going to take time, and more rehabilitation when we get home. he has been through so much, not just the surgery which was a big deal in itself, but all the toxicity of the chemo and effects of the radiation. It doesn’t matter how long it takes, because now we have time, something that was fast running out before, Steven was deteriorating very quickly and we knew that surgery was becoming urgent and we couldn’t wait any longer. The main thing is the tumour is out, it was dead and now we can move forward and focus on Stevens recovery. Dr. Shahinian will continue to check on Stevens progress and wants to Skype with Prof Seckl and us, to make sure that Steven gets rehab and gets another MRI done ASAP. He wants to continue working alongside Stevens doctors here as he said to Steven ” we are bound for life now buddy”
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It was like saying farewell to someone we had known for ever, we all had a hug from this amazing man. We love you Dr. Shahinian, you have performed a miracle for us.