Our journeys' end.

It is with great sadness and a heavy heart that I write that Adam's journey in this world has ended. He passed away very peacefully with both of us and my brother and his wife with him at 1.25am on Saturday 8th November.

Although we had been told his condition was incurable it was often very hard to imagine our lives without him and so we have never stopped doing things with Adam and his brothers. If you have been following his journey then you will know that we never really took time to draw a breath in between our adventures over the last 6 months and 10 days since he was diagnosed. We have pretty much done everything we could possibly think of in our given time.

Adam's progression started to become apparent to us when we were at Center parcs a few weeks ago, he had become unsteady on his feet for a few weeks before we went but otherwise he was just our wee Adam, never sitting still for very long. While at Center parcs he became weak down his left hand side and could not stand or walk very well without assistance and he also started complaining of headaches again. He started to be sick and became quite weak. we packed up and came home early with Adam and myself going straight to the Sick Kids Hospital.

At hospital he was assessed and started on steroids to reduce the pressure of the tumour and referred to physio for exercises for his left arm and leg. An MRI scan was arranged for the following day and unfortunately this showed some progression from his last scan in July. We both got to see his scan pictures and have them on disc. This helped us to understand the areas the doctors were talking about and we could see the differences ourselves.

We got him home on Friday 24th October although he was still weak and had a busy week that followed with physio, dietitian, occupational therapy, etc . He seems to pick up a little and we worked through that week.

On Saturday 1st November both Adam and Paul had a tummy bug and had sickness and diarrhoea (which Marc had on the Thursday night and Scott ended up with on the Sunday night). This really floored Adam and he had a restful day on the Sunday, He was able to eat and drink on the Sunday although he just lay on the sofa all day. On Monday morning he wasn't eating or drinking so when the community nurse arrived for her appointment we agreed the best thing to do was give him a liquid feed through his peg. We started of slowly to build up his tolerance and he was on it all day, he still hadn't had a drink so when his feed was finished we gave him water through his peg before starting an overnight feed. Unfortunately he was very sick and we stopped his feed, gave him calpol for a headache and tried to settle him, after an hour he was still complaining of headaches so we phoned the hospital for advice and gave him some ibuprofen. After about 10 mins he was sick again so we took him to the hospital where after a few hours in A&E for assessment (as it was out of hours) we were admitted to another ward as ward 2 was full.

His steroids were increased and he was put on a drip to rehydrate him. In the morning we were moved to ward 2 and given a cubicle. We wanted to take him home but needed to get a bed from the hospital as his bed at home no longer suitable. His progression was very rapid and changed from day to day, on Wednesday we were told that his progression was much faster than anyone had anticipated and that we were probably only looking at weeks by this point Adam could barely speak, we then planned to bring our Christmas forward to 22nd November. On Wednesday evening when Spike brought the boys up to visit Adam was waving and smiling at them and we got him up into a wheelchair and went to the playroom with them, we all spent about an hour there and I really think Adam had fun even though he was limited, by this point his speech had gone completely. On Thursday Spike and I went to Rachel House, the children's hospice in Kinross with a view of taking the boys there for a few days respite. That place is a wonderful place, and we quickly signed up to go in a couple of weeks time. Feeling quite positive we returned to the hospital and spent the rest of the day with Adam and the boys. Adam appeared to be having problems focusing on faces and we were told he probably had double vision. During the night from Thursday to Friday his breathing changed and he was making noises like he had phlegm stuck and as he couldn't cough to clear it it was almost gurgling (very strange sound). I was awake from 3.15am that morning and couldn't get back to sleep so start to listen to our iPod and chose a could of songs to include in his forthcoming service. At 6.40 I text Spike and told him that I think we should keep the boys off school as we needed to tell them about Adam's progression and the timescale we had. By 9.30am I was chatting to his consultant who then told me that his breathing was an issue and that we only had days (if that). Spike arrived, we chatted and broke the news to the boys. We then decided it was in Adam's best interest to stay in hospital, all through his illness we were adamant that he would be at home at the end but when the time came we knew we would not be able to give him the specialist care he needed in his final few days.

We were moved to a more private room with en-suite facilities so we didn't even need to leave his room if we didn't want to, we decide Christmas was now no longer 22nd November but infact the following day 8th November. So off I went Christmas shopping with our good friend Sharon and go a few goodies for the boys and my nephew and 2 nieces, a Christmas tree and decorations, as we had text all our family and close friends we had a few visitors that afternoon and evening and I made use of them by getting them to decorate Adam's room. Adam's breathing had become very noisy and we were concerned. My dear friend Nicola came up later when everyone else was gone and wrapped all the presents for us and our close mate Jason sat making paper chains. It was very peaceful and quite festive. Later on when we were alone with Adam we were told in a very gentle way to expect the worst soon. We were then constantly with Adam. Stuart and Dionne had the other 3 boys for us. As the evening progressed Adam became weaker and although his breathing looked very sore we were assured he was in no pain and had no complaints from him so his morphine was working, although his dose was very small, it showed it was enough and that his pain (if any) was minimal. I tried to have a nap but after less than an hour I was woken with Adam being sick, after he was cleaned and changed his breathing became very noisy, gurgly and his whole body was lifting and his bed was shaking with all his hard work to get enough oxygen.

As time went on and we were both holding his hands we remembered that someone had told us that young children especially need permission to go. So we started to talk to Adam about my mum and dad, who both passed in the last 5 years. We asked him if he could see Grandad Bob playing golf and that he would be waiting for a game with him and we asked him if Granny Livvy was playing the piano, to which he responded with a huge nod of his head. Deciding that this was a positive response (which we had not had from Adam in almost a day) we kept going. We asked Adam if he could see Granny getting closer to him and if he could he was to take her hand, to which he responded by squeezing my hand with his left hand that he had had no power in for almost 3 weeks. We told him to start walking with Granny, to keep walking, keep walking after a little while his breathing slowed right down , almost as though he was relaxing, he had taken about 8 breaths like this when Stuart and Dionne arrived and shared his last few breaths with us - their timing was perfect, it was lovely to have them with us.

It also gave us a sense of peace, Adam had in fact been very lucky in that he avoided alot of the nasty progression symptoms that go with this tumour. He never lost his sight, he never lost his hearing, he did not become incontinent, he did not have any seizures and didn't have the severe headaches. Apart from his loss of mobility and double vision, he had no suffering for which we are very, very thankful. Things could have been very, very bad for him.

We spent some time with Adam after and David and Spike's mum came up to see him and say goodbye too. He was moved to the chapel were we saw him again then we left the hospital.

We headed home at 5.30am before heading to Stuart and Dionne's for 7am to be there for the boys wakening up and to break the sad news that their brother had gone to be with Granny and Grandad.

Although Adam's journey in this life has ended we are sure that he will be running around, playing golf and tennis and having fun with all his new friends.

I suppose in a way this is the start of a new journey for all of us now as we try to adjust to a family life without him.

I want to thank everyone who ever read this blog, who shared our journey with Adam and for all the wonderful support that we have received and continue to receive from you all. You truly are amazing and we are very, very lucky to have you all in our lives.

Thank you from the bottom of our hearts, Adam's journey would not have been as full this last 6 months without all of you.


We love you all.


We will post details of Adam's funeral when we have them.

Lynn, Spike, David, Paul, Marc and Scott
XxxxxX