A Journey with Adam

Goodbye

2009-02-15T07:45:00.001Z

This blog is now closed.

Please join us here.

Lynn x

2009-01-16T19:22:00.002Z

Came across this a while back - don't even know where from - had it saved on computer and feel the time is right to share it with you.....

Ask My Mum How Is She

My Mum, she tells a lot of lies
She never did before.
From now until the day she dies.
She'll tell a whole lot more.

She used to tell the truth, a lot
But now it doesn't matter.
I died and went to heaven,
Her life is all a-shatter.

Ask my Mum how is she.
She'll say, 'Yes, I'm fine!'
She wants to beg 'Please help me.
I can't find that boy of mine!'

Ask my Mum, how is she,
She'll say, 'I'm alright.'
If that's the truth then tell me,
Why does she cry each night?

Ask my Mum, how is she,
She seems to cope so well.
She didn't have a choice, you see,
Nor the strength to yell.

You think you know the feeling,
But this cannot be.
For even though you loved me,
You didn't love as much as she.

She will smile and tell you,'It's o.k.
God has a plan.'
But she will turn away and cry
'Cause she just can't understand.

Tell a joke and she will laugh,
But she is not o.k.
She wants to share the joke with me,
But it will not be today.

I watch from here, in Heaven.
Her distress disturbs my peace.
Will someone please take care of her,
And thus take care of me?

'Some day you will feel better.
''Yes I will.' she lies.
She knows this will not happen,
Until the day she dies.

'I was so lucky!
I had him all those years!'
They passed in a minute,
I shed so many tears.

Ask my Mum how is she,
She'll say, 'Thank you. Good.'
She cannot tell you how she feels.
Oh, how I wish she could.

Ask my Mum how is she,
'I'm fine, I'm well, I'm coping.'
For God's sake, Mum, just tell the truth
Just say your heart is broken.

Ask my Mum how is she,
'I'm well, I'm good. And you?'
I'll shake my head in Heaven.
It simply isn't true.

She'll love me all her life.
I loved her all of mine.
But if you ask how is she,
She'll lie and say she's fine.

Her carnival is over.
She's stepped off the carousel.
But, to save you feeling badly,
She'll say, 'Thanks, all is well.'

My Mum, she's not gone mad, yet.
But, oh so very nearly.
Don't ask my Mum how is she,
Ask how is she, really.

I am here in Heaven.
I cannot hug from here.
If she lies to you, don't listen.
Hug her, hold her near.

On the day we meet again,
We'll smile and I'll be bold.I'll say, '
You're lucky to get in here, Mum,
With all the lies you told!

Time....

2008-12-24T14:53:00.004Z

It's funny how the time just flies past you.

It has been over 6 weeks now since we lost Adam but it feels like much longer.

The weeks that have past have been difficult but we have tried to continue the only way we know how - positively.

We had a lovely day at Easter Road a couple of weeks ago. We were invited to the game including hopsitality, it was brilliant the boys got a tour of changinf rooms and met the players again. They also got to meet new signing and have their picture taken with him (first fans to get pic done) so they were delighted. It was a brilliant day - Thanks Amanda!!

There have also been another couple of fundraisers, thank you so very much, we are planning to take the boys back to South Africa next year for a little escape. You have all been so supportive, it is really appreciated. Thank you!

Yesterday (23rd) was the 6th Anniversary of my granny dying and as usual I paid a visit to the cemetry with flowers for her, her ashes were scattered over her parents burial plot, so we hae a place to leave floweres for her. I didn't go alone this year though, Spike and the boys came too, we hadn't told the boys til we got there. After delivering my granny her flowers we then had a walk around the Garden of Remembrance. I am ashamed to admit this is the first time I have been here although both my mum (2007) and dad's (2003) ashes were scattered here. It is lovely, very tranquil and peaceful. We have decided to get a memorial plaque made for Adam as the boys seemed a little lost having not having any special place to go. Not sure what we will get yet, maybe a rose bush or a marble planter......will let the boys decide what they want.

Well tomorrow is Christmas Day and I really am dreading it. Not sure what to be thinking......just hoping we can get though it ok for the boys.

Wishing you all a Merry Christmas and Best Wishes for a better 2009!

Take care and see you all next year!

Lynn, Spike and the boys.

XxxxX

In my mind

2008-12-12T11:36:00.002Z

In My Mind
by Jenn Farrell

Somewhere in my dreams tonight

I'll see you standing there

You look at me with a smile

"Life isn't always fair"

You say you were chosen for his garden

His preciously hand picked bouquet

"God really needed me,

That's why I couldn't stay"

It's said to be that angels

Are sent from above

I've always had my angel

whose heart was filled with love.

Wherever the ocean meets the sky

There will be memories of you and I

When I look up at that sky so blue

All I see are visions of you

"While there's a heart in me, you'll be a part of me."

A massive thank you.....

2008-11-25T17:48:00.003Z

It has been over two weeks now since Adam passed away and it already seems like forever. Life is very strange at the moment and we are all still feeling a little numb. The boys have returned to school and seem to be coping well with their daily routines but not sure we are.

We are trying to sort out all the paperwork that goes along with a death and trying to get back on track with day to day items. Something is missing. It's almost like we can't find something, feels very strange. For the last 6 months our lives have been consumed with Adam, hospitals, treatments, appointments and having fun......... now it's empty. Don't really know how else to explain it......very strange.

It's only now that we realise just how huge Adam's journey has been for us as a family and the intensity of it all. Now there is nothing. How are were supposed to move on and continue our lives, adjust to not having him with us, like I say it's very strange.

I want to thank everyone for their unquestionable support to us as a family. This is anyone who ever read this blog, attended a fundraiser, sent us texts, emails and cards, for the flowers we received, the massive turnout for Adams funeral, the support given to us regarding Adam's brothers, for Spike and David's employers for allowing time off and absences, the boys school for their understanding, nurses, doctor and staf at the Western general Hospital and the Sick Kids Hospital, the list really is endless and I am sorry that I can't mention you all by name - you know who you are.

We continue to have your support in the months to come and are grateful for that, the last 6 months with Adam passed in a whirlwind but we had an amazing time and built some fab memories for us as a family which I hope will help us cope in the future. Please don't underestimate your own part in Adam's journey.

The retiral collection at Adam's funeral raised a massive £2220.00. This has been split between Cclasp and ward 2 at the Sick Kids - both are overwhelmed by your generosity and the funds will be used to help other children and families in similar situations to the one we found ourselves in.

THANK YOU ALL SO , SO MUCH!!

For now, Lynn xx

"The mention of my child's name may bring tears to my eyes,
But it never fails to bring music to my ears.
If you are really my friend, let me hear the music of his name!
It soothes my broken heart and sings to my soul! "

~Author Unknown ~

Funeral details

2008-11-11T08:06:00.002Z

Adam's funeral will take place on Friday 14th November 2008 at 3pm at Seafield Crematorium, Edinburgh to which everyone is invited.

We would request that you wear bright colours.

Famly Flowers only please as a collection will be taken up at the end in aid of CClasp and Ward 2 (Oncology) at the Sick Kids Hospital Edinburgh.

Thanks.

Lynn & Spike
XxxxxX

Our journeys' end.

2008-11-09T18:19:00.008Z

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

More photos.....

2008-11-01T14:06:00.006Z

Disneyland Paris was amasing and we all had a fab time. Pictures here (hope you got a bit time to spare!!) LOL

Adam had a day at the Hibs training ground, tour of facilities and lunch and met players, those pictures are here.

What else we been up to.......

Center Parcs, was a bit of a wash out (weather wise), but some pictures here.

At last.....

2008-10-16T12:21:00.012+01:00

At long last I can try and get this updated. Things have been as hectic as ever in the Robertson household, between our trips away and computer problems and daily life, there has been no let up lately.

Since the last update we have been lucky enough to have had a few adventures with the boys. Our first trip was to Legoland and then on to Folkestone. We travelled during the night to Windsor to Legoland as we thought that would be better for the kids as it was such a long journey, we just had a nice slow drive, stopping off every couple of hours for tea and fresh air, the kids slept most of the way which was great, we ecouldn't get into our hotel until after 3pm so went straight to Legoland for it opening at 10am.Legoland was just as great as we had been told it would be and more. The boys had a fab time (so did we) I think we appreciated more the time involved in making all the constructions but think that went over the kids heads a bit. The timing was perfect too as most of the English kids had gone back to school that week so the place was quiter than it would have been a week or two before. The weather wasn't too fantstic and we had to wear our waterproofs a few times each day but it didn't dampen our enthusiasm. Most of the out door rides we did it the first 2 days which was just as well because the third day was torrential rain and we did the indoor activities then, before heading off to Folkestone.

Pictures from Legoland are here.
This is too funny not to share....... here.

Our trip over to Folkestone from Windsor was fine and we made it in good time even though it was friday and we had to go via the M25. After arriving at our hotel our friends Paul and Angie came to meet us and we follwed them to their house. Paul had made his speciality for tea, chicken nuggets and chips! LOL....well that's what the kids had....we had thai green curry .... it was delicious! After tea we had a lovely catch up before heading back to our hotel. Adam was very tired but it had been a long day. We had a great few days with Paul, Angie, Paul and Megan. They really made us feel more than welcome and had taken the time to be with us all weekend. Thank you guys - it was great and the boys want to come back! (Must have been the chicken nuggets!!!). On the saturday as Paul and Spike went for a game of golf, Angie took myself and the kids to an adventure play area not far from her house. The boys were all running around daft and then I noticed a familiar face........it was a girl (well a woman now!!) called Steph that I had worked with years ago (before kids). We had both worked for the same company but in different branches she worked in Erith in Kent and I was in the Edinburgh office. We haven't seen each other in about 10 years, although we do keep in touch via the internet. It was just really amazing to bump into her like that. Steph tragically lost her husband a year past in a motorbike accident and I felt so helpless being so far away, finally I was able to give her a huge cuddle. She was there with her two kids Caitlin and Callum, who I have only ever seen pictures off - they are even more gorgeous in the flesh. We had a BBQ on the saturday with lots of other friends, which was great too. Another late night but a nice end to a great day.

Pictures of Folkstone are here.

More to follow...................................

Lynn x

Computer problems

2008-10-06T10:08:00.003+01:00

Apologies to everyone. We have been having problems with PC which should hopefully be sorted today. Have had PC engineer here off and on last 3 weeks, faulty parts, wrong parts etc - ben driving us nuts. Also our mobile broadband been playing up too so had very limited intenet access.

Will update over next few days. Adam is doing well and coping with full days at school.

More later though.

Thanks for continuing to support us.

Lynn x

Another week gone by so fast....

2008-08-30T09:21:00.013+01:00

The weeks just seems to be flying in just now, there is so much happening!

Ok, let's catch up on the last week then, hope you got half an hour to spare!!!

Last Friday was Adam's second day at school and today they had to line up in the playground. He was keen to go in and did so without any problems. He was in from 9.30 - 12 noon today. His teacher said he was a little tired after break but he seemed ok when he came out.

Here he is lining up with Calum.

Saturday we had a visit from our friends' daughter Ashley and her friend Adele. It was great to see them and Adam really enjoyed them being here. Our other friend, Dode, had also given Adam some money that he had collected in tips from his taxi customers (thank you all very much) with this money we bought Adam a battery operated vehicle. His balance is a little off at the moment and he has lost confidence in riding his bike so we thought this was a good option for him, it also helps conserve his energy not having to pedal! Ashley and Adele went over to the local school playground with the boys. Adam in his robot car and the boys on their bikes. They all had a great time as you can see. The boys also found a huge puddle and were happily riding through this........

Here is Marc and Scott after riding through that puddle!!!

And then back home, the boys had to be stripped and put in the bath!!! Ha ha! I am sure a few months ago we would have gone nuts at them getting in such a state. It is amazing how your priorites change! New resolution - a dirty child is a happy child - do you think I could advertise Persil!!!

I also want to use this opportunity to talk about Ashley's dad, Glen. Spike has known Glen for a long, long time and we have only recently been made aware of the fact that he is infact a master baker. Glen has the hidden talent of being able to product mouthwatering scones! I know it seems trivial but to someone like me whose scones turn into rock buns in the oven I am very impressed. He is very modest though - to the point he would probably not even admit to this skill. As he is so modest I have decided to share a picture of his produce with you all.

Glen - you are a legend!!

Sunday was my niece, Ava's dedication service at the Salvation Army, followed by a breakfast and full day party with all the family. It went really well, she is such a wee sweetheart. It was a fantastic service at the Salvation Army, there was singing, and even a puppet show - it really was brilliant. Here are some pictures.

Phew - that was a busy weekend. On to Monday, Adam very reluctant going into school this morning, I had to go in with him, after 15 minutes of crying and disruption to the class I decided to take him home. This afternoon he had his bloods done and again they are all really good, so we can continue with his next cycle of chemo next week. Paul was also off school today as he had an upset tummy. He was ok though, he's having a bit of a tough time just now and is having sessions with the play specialist at the sick kids to help him adjust and understand his feelings.

Tuesday and Adam, Spike and I went into school this morning, he became unsettled again and we thought we were going to have to take him away again but I decided to persevere with it. Spike went away and I stayed with him, once he was settled and involved with a task, I slipped away - he was absolutely fine! So plan is for now that I go with him and stay for a little while and then leave, he knows this and is ok with it. To be honest I think he has become so used to being with us everyday that he is having mild seperation anxiety, and as much as we want to spend as much time as possible with him we also realise this would be unhealthy for all of us and he needs to still soicialise with others. I had a girls night tonight - was great to see you all, sorry I left early but was just really tired.

Wednesday was much better at school, no crying at all and I managed to get away after only 20 minutes, he seems to be getting used to a routine again. Was tired after breaktime but I think we need to expect that.

Thursday and Paul not had a good night at all, found it very hard to settle and was up and down during the night. Adam also had a restless night so we decided that Spike would have a boys day with the two of them. We feel it is important that all the boys spend individual time with Adam as well as family time. The boys had a lovely day and so did I - a day to myself. Went shopping in the morning with Nicola and her mum - thank you both was nice to "escape" for a bit. I also got some beautiful flowers delivered today, which was a huge suprise - thanks Trish and Yvonne!

Friday, school went fine, no problems at all. He had a really good day his teacher said, I am so pleased. When Adam was first diagnosed and we were told he was incurable and would die, my initial thought was "why bother with school, he would be better off just having fun than learning stuff he will never need", now, however, seeing him at school makes me so proud of him and what he has already been through. School is very important from a social point of view not only educational. We would like to thank St Ninian's school staff, teachers, helpers, parents, children and anyone else connected with the school for their support and understanding - you are very special people and we appreciate everything. Thank you all!

Ok, my fingers are sore after all this typing so I am off, we are away next week to Legoland and Folkestone with the boys so will no doubt have loads more to share with you soon.

Lots of love from all of us!
XXxxxx

Adam started school today!

2008-08-21T20:25:00.005+01:00

I am so pleased I couldn't wait to post to let you all know. He was a little reluctant to start with but was ok and seems to have enjoyed it although they were only in for an hour!!!

Here are a couple of photo's from this morning of the boys.

Lynn x

Marc, Adam, Scott and Paul

Adam

Paul, Adam, Marc and Scott

Calum and Adam

What a week!

2008-08-20T19:33:00.003+01:00

Well we had a lovely week in Muthill, near Perth, at the Cclasp respite cottage. It is a really nice little cottage in a quite village so it really was a break away from everything. The weather unfortunately was not too fantastic but we still made the most of it.

On arrival on Monday we unpacked abit and the boys started to play. Spike and I set about building a climbing frame to go in the garden, we got the main part done but then the rain started and kept on all night. Had a nice quite night in front of the telly with only 4 channels!!! It was like returning to the dark ages, we are so spoiled with our digital tv at home.

The weather on Tuesday wasn't much better, we had a little drive into Perth and got in some supplies then back home again. The boys were able to play pool in the summer house while we were in the house.

Wednesday and we decided to go to a local wildlife park before we set off I noticed that one of the car windows was smashed. We are not sure how this happened, the boys all deny all knowledge of it so we have no explanation. We then had to go to Perth to a VW garage to see about getting it replaced, they do not deal with commercial vehicles and as we have a transporter this is classed as a van/minibus so the nearest place was Edinburgh. We phoned and ordered the window to be ready for our return of Friday, then headed off to Homebase to buy MDF, plastic sheeting and tape to secure the window for a few days. We did eventually make it to the wildlife park, it was great, loads of animals to see, an old fire engine for the kids to play on, a cafe and shop, the wether also cleared up and became very warm. So all in all we still mamanged to have a good day.

Thursday we went to a Christmas shop near by and the boys all picked a special tree decoartion for this christmas. I tried to explain that this was going to be a special Christmas as it may be our last with Adam but I think it went over their heads. Was a beautiful place and glad we went. After that we just to Crieff for a wander, had lunch then home to the cottage, the boys played for a bit then we all headed up the the golf course where Spike, Marc and Scott went round the course. Adam, Paul and I waited in the club house as they were only playing 9 holes, it was lovely and sunny and was a pleasent wasy to end the day. Home for tea, showers and a DVD.

Can't believe Friday came so quickly, we could easily hae stayed longer. It is so quite, the neighbours are all very friendly anfd was a nice change of scenery away from hospitals etc. But , all good things must come to an end so we packed up and came home. Window wasn't in yet for the car so Spike having to go back on Saturday to get it fitted.

Saturday, weather wasn't too bad, didn't do too much though, catching up with washing etc and just chilling.

Sunday again was relatively quite we went out late afternoon for our dinner with David, Roxzhan, Val, Auntie Celia and David's mum, Caroline as a birthday celebration for David. He is 21 on Monday. Can't believe where the years have gone, I met David when he was almost 9, seems like another lifetime. I also checked our bank account online tonight to discover 2 items not made by us. Somone has booked themselves a flight and travel insurance at our expense!

Monday and we decided to have a stay at home day again mainly due to the weather and getting kids clothes all ready for starting back to school on Wednesday. I phoned the bank about the 2 items and they have now launched a fraud investigation and I amy need to be inteviewed by the police!! Bloody cheeky gits - £672 they took!! We should hopefully get that back soon though. Adam had his bloods done this morning and they are all fine. He is having a little trouble going to the toilet but I think that could be the chemo also his appetite has taken a bit of a nose dive so need to keep an eye on that.

Tuesday we went to the bowling with the boys, had our lunch and they played about on the machines for a while, went to the shops to get packed lunch supplies to later find out our school was closed due to strike action! Boo Hoo!! I was so looking forward to them going back, needless to say they were all delighted!!

On to today, Spike and Scott went back to VW garage to sort out the broken wing mirror from months ago and to get new car seat covers fitted. They then had a nice boys tiem and went for lunch. I stayed at home with the other boys who just played around in the house because - yes, you guessed it - it was once again pouring with rain!!!

I meant to mention before too that Spike has played a couple of charity golf games recently, one was a PRO-AM in aid of the Sick Kids Hospital and the other was for Marie Curie Cancer Care. He was delighted to be able to play in these competitions and to be able to give back something, especially as we are getting so much support from all around us.

We have also still been receiving collections from people for Adam and I wanted to say once again how grateful we are for this. We are delighted to be able to take the boys to Legoland and Disneyland Paris next month. Things that would not have been possible without your generosity. Thank you all so much for everything, we are building up some wonderful family memories and collecting some great photos along the way.

I promise to post some new photos very soon.

Lynn x

PS Adam starts school tomorrow!!!

We are off....

2008-08-10T20:59:00.003+01:00

... on a little break tomorrow for a few days. We are lucky enough to be staying at Cclasps new respite cottage in Perth from Monday til Friday. So we are hoping that the weather will be kind to us. Not really got much planned will take each day as it comes.

Monday was pretty uneventful, Adam and Scott went to the holiday club at the community centre and the rest of us had a chill out day. Adam restarted his chemotherapy for 3 weeks. Paul, Marc and Scott went to a Siblings Evening at the Sick Kids tonight. This is an annual event for siblings to meet others in a similar situation, to see around the hospital, to chat about their worries and ask questions about treatments etc. They also had a craft time and pizza! Paul is making up a special Memory Book with Pictures of him and Adam with the help of Helen , the play specialist from ward 2.

Tuesday we went to West Calder, it was 20 years since my granny had died and we went to the cemetry with flowers then we went to visit my Auntie Jean for lunch but as we were arriving unannounced we took lunch with us. The boys enjoyed running around playing in her garden. They then had a birthday Party at Clownaround so it was all go!

Wednesday we had our biannual family outing to the dentist! They must love it when we go, we take over the place. LOL As the weather was pretty bad we decided to go to the cinema with the boys to see Wall-e. They had been asking for a few weeks to go and it was really good. A nice story and some really funny bits. I love kids movies!

Also while I am talking about the cinema I forgot last week that my lovely friend Nic took me to the cinema to see Mamma Mia, it was great - just what the doctor ordered a real feel good film, although Pierce Brosnan can't sing! Cheers Nic!

Thursday, another quite day. David came and took Paul and Marc to the cinema to see The Dark Knight, which they seemed to really enjoy.

Friday another quite day, weather was pants! Saturday weather was still pants! LOL Paul went to the cinema with Madge, Frank, Alan and Liam to see The Mummy 3 - had a lovely time - thanks for taking him!

Saturday night I managed a night out with some of my playground chums, a chance for us to chat up before we hit the playground a week on Wenesday. Not the I am counting or anything but it is only 10 sleeps til they go back! woo hoo!

Today was spent getting ready for going away and to give Adam a chacne to relax today, he been a little under the weather with an upset tummy but seems better today.

Anyway am off for now, will catch up again soon!

Lynn x

Another busy week!

2008-08-03T19:43:00.009+01:00

Well, here we are at the end of another very busy week, it's all go at the moment and we are hardly getting time to draw breath!

On Monday we decided to take the boys to the zoo. The weather looked a bit dull and wet but we went anyway. We took Adam's wheelchair but he walked most of the way up the hill and down! I think we were more exhausted than he was. The sky turned blue and it got pretty hot, we saw every animal in the place and had a great time, took about 500 pictures again so I wont bore you with them - you all know what animals look like! Here are a couple of the boys though....

On Tuesday Adam had his MRI scan, this was to give everyone an indication of how he was, how his tumour was behaving and what effect the radiotherapy had had on the tumour. We were in the hospital all day as Adam had to be put to sleep for it to make sure he lay still for the scan. We got home about half past 6, he had been very good in hospital, it was a long day for us, sitting around waiting .

On wednesday Spike and I went back up to the hospital ourselves for the scan results, I had been feeling sick all night and all morning. In one respect I was desperate to know what it had to reveal and in another I was dreading knowing. Well the news is pretty good as far are we are concerned. In the thirteen weeks since diagnosis the tumour has not grown, this means that the radiotherapy has done some good. It is not any smaller though although the edges of the tumour now have little fluid filled pockets (cysts) which is what appens when cells die - they disolve into fluid - so that is great news for us. Adam is also still very well clinically and this is great as it means we are definately looking at a picture a little brighter in terms of length of time. To be honest it is much better than I expected to hear so we are very, very happy with this result. He restarts chemo tomorrow (monday 4th) for 3 monthly cycles of 3 weeks on and 1 week off. Afteer these 3 cycles we may get another scan done to see if chemo having any effect. We need to remember that this type of tumour doesn't respond well to chemo and his chemo is a trial so may have no effect, in which case it may be withdrawn and let nature take it's course but that is for future thought. At the moment we are delighted!

On Thursday it was the official opening of the Cclasp Respite Cottage in Muthill, Perth with Adam being VIP and cutting the ribbon. We were stopped at the entrance to the village by the police and Adam and I got to ride in the police car, with an escort, flasshing bllue lights and siren to the cottage. Adam was given a police hat to keep, he loved it! The cottage was opened by Adam and Gavin Hastings. It was a beautiful day, loads of sunshine and we had a nice time, chatting to other parents and meeting other kids with similar conditions to Adam. The boys enjoyed themselves too and we are going up to stay there in a week or two for a break before the schools go back. The village is lovely, very quite a real retreat. It really is a lovely spot to "ge t away from it all". The cottage has been gifted to Cclasp for 50 years by a very generous Edinburgh business man.

Ok, on to Friday, what did we do...... loads of running around! Then a well earned rest as we went to our friends Dode and Sharon's new house for our dinner. It was lovely, the boys were out playing with their grandson Lewis while we grown ups were chatting, it was a lovely relaxed evening - thank you!

Saturday Adam was mascot at Easter Road for Hibernian v Middlesborough game. We were given complimentary tickets for all of us and again we had a fab day (even Spike enjoyed himself - being a jambo as he is!) We were really looked after and got to meet players, managers, tour of changing rooms, photographs and autographs, comfy seats to watch the game........ it was just great! Adam became a little upset leading up to it so Scott was drafted in too, so they both got to do it! Just a shame that hibs lost their 2-0 lead and ended up getting beat 2-3 but it was only a friendly!!!!

Today we were at Cclasp's annual picnic - well Adam, Scott and I were. Granny Val and Auntie Celia came with us. Spike had a golf outing with the 32 club and David took Paul and Marc to Sunderland v Ajax game at the Stadium of Light. So we were scattered all over today.

The weather wasn't very kind to us at all, although we did have bright sunny spells throughout the afternoon. We all had fun anyway - hopefully next year we can all go!

Especially for Glen and Jennifer.....

2008-07-27T22:09:00.014+01:00

...ok.ok......I know...been ages again but all I can say is sorry, we are having so much fun I can't get time to get on to keep this as up to date as I had hoped.

Our friends Glen and Jennifer have told me they check this twice EVERY day and are not happy that there is nothing new to read....I think they are really just worried that I will post their pictures from Jedburgh. Oh look....here they are here. Hee Hee!

Anyway let get things updated....what have we been up to the last few weeks.

Well we have been to haggerston Castle for a holiday and then to Jedburgh "camping" for a wet weekend except that we were in a caravan unlike the two families we were with!!! Jennifer loved it though and can't wait to do it all again!!! ha ha!!! i think the tent is on sale on ebay!! LOL

Pictures from Haggertson are here.

We have also made the papers....we had an article printed in the Edinburgh Evening News, you can read it here, there are no pictures online but when I get them from the photographer I will post them here for you.

There have been 2 fundraisers this weekend too to raise funds for us to take Adam and the boys to Legoland and Euro Disney. Thank you so much.....peoples generosity is amazing. It is certainly easing things financially for us in that we are able to do lots with the boys during the holidays that we would otherwise not be able to afford. Thank you, thank you , thank you!

We have got quite a busy week ahead too, hoping for nice weather tomorrow as we want to take the boys to the zoo, on tuesday Adam is scheduled to have an MRI scan, this will give us some indication on how sucessful the radiotherapy has been, wednesday we get told the results, so fingers crossed that it has worked as well as it could have, thursday we are up in Perth for a special opening ceremony where Adam is VIP cutting the ribbon for CCLASP's new holiday cottage, friday should be quieter and we are going to our friends Dode and Sharon's for dinner. On saturday Adam has been invited to be mascot at the Hibs v Middlesborough game at Easter Road, we are all going, and then next sunday, Spike golfing all day, David is taking paul and Marc to Sunderland to the Ajax game and Val, Adam, Scott and I are all going to CCLASP's annual family picnic......so I think you will agree a busy week ahead, will try and get back on as soon as I can and post pictures of those adventures.

Adam is still coping quite well, in the last week he has become a little unsteady on his feet and puts his head to one side to look at things - these are normal symptoms of his tumour. He is very tired and we need to take his wheelchair most places now if we have walking to do, he seems to enjoy it though am sure we would all cope with getting a "lift" every now and again, eh? Don't quite know how we are managing all this but we have to keep going, can't waste a day!

Ok am signing off again for now.

Lynn x

Am so,so sorry....

2008-07-09T19:19:00.005+01:00

...but we have been so busy having fun that I haven't had the time or energy to keep this updated!! So apologies to those of you who have been checking in regularly to catch up with us.

Firstly, we are all well. Adam has now finished his 6 weeks of radiotherapy and chemotherapy and we are now on a 4 week break from treatment. He has also graduated from nursery, our last child leaving nursery - quite a moment for us, we've been supplying kids for the nursery for 7 years !!! But alas no more!!! School uniforms are all bought and awaiting the 20th/21st August....yipee!!!!

Ok, a quick round up and some photos for you all.......

Local community organised a fundraiser and raised an overwhelming amount of money for Adam, everyone has been so kind and generous. We also had a day out (27 of us!!) to Blair drummond Safari Park, which was all paid for by various companies and businesses in the grassmarket area. Huge thank you to you all - it was a great day and Adam loved it!

The last week of his radiotherapy, June decided to pop off to Spain!! Ha ha, arranged ages ago, just so happened it landed on Adam's last week. We did, however, have the fabulous Hazel for a week and knowing the things that June had Scooby and Scrappy doing she had her work cut out for her. I have to say though, she did a great job. On our last day we had a wee party, we had also woken Adam's best pal Calum up early to take him to hospital with us. After the boys had a tour of the hospital (or so it felt) they got some pics taken with the radio machine and having a party with Scooby and Scrappy. I must add though that on the Tuesday that week, Adam had a wee cry to himself - he wanted June back! Awww! Get the hankies out! He really missed her that week. Anyways, Calum's Nana made a lovely cake for all the nurses and staff at the Western to say thanks and we took in some lovely chocolates - which I think were well recieved!!

After that it was school's out for summer!! Oh No....7 weeks of no school - what am I going to do???!!!

Plan was to go to Haggerston on Monday 30th, as Adam has no treatment scheduled and we had also booked it back in January. All was well until 3.30am Sunday 29th, Adam woke us up and he was very hot. I too his temperature 38.8 (101 ) and gave him some calpol, after half an hour I took his temperature again and it was the same, phone the sick kids and they told me to bring him in. So off I went at 4.30am with Adam to hospital, thinking we would be in and out in a couple of hours - how wrong was I! Spike and the 3 boys went to Haggerston on Monday as planned but Adam and I were in hospital until Wednesday lunchtime! He had an infection of the blood and needed IV anti biotics and was also given a platelet transfusion. Was a tough few days but we got through it and made it to Haggerston for the rest of the holiday. Thanks to Susan and Megan for "chuming" me on my first long distance drive (was a bit nervous as I haven't gone that far before) and for staying with us for the night, was nice to have you with us. Also David and Roxzhan came down on Saturday for the day/night - a shame that they brought the rain with them but they are forgiven!!! LOL Will post haggerston stuff after this as we took over 500 pictures and I need to sort through them first!!

So back to the grind again - the boys are all booked in for the holiday club at the community centre, so that is good. It's monday - wednesday 10am - 2 pm for 5 weeks.

Some news too - we had an article printed about us in our community paper (will try to scan it and upload for you all to read), a way to let everyone know how touched we are of the support we had been receiving in the community from all directions. It has been unbelievable.

More exciting news - Adam had been asked to be VIP at Cclasp's official opening of their new holiday cottage in Perth at end of the month. He will cut the ribbon! This is also being covered by the Evening News so watch out as we shall be appearing in that soon too!

We are off to Jedburgh this weekend too with our friends and their families, they are camping but we are hiring a caravan, looking forward to it.

Thanks for sticking with us and for your patience!

Lynn x

Time flies when you're having fun!!!

2008-06-21T15:18:00.018+01:00

Time flies when you're having fun!!! Well that's my excuse for not posting on here for a week!! Craig and Kira have been here and there has been so much going on, kids got trips etc at school.

Anyway, all going well to date, Adam is getting quite a bit of discomfort around his ears now and they have a red (sunburnt) looking ring around them, this is a result of the radiotherapy and possibly the sun too. He has steroid cream (mild dose - so no demon child!!) and also a moisturising cream. Other than that he is still holding his own, and still very active - we were looking for signs of tiredness but we are still looking!!! Typical Adam, can't do anything by the book!!!

Here is a round up of our activities over the last week and a bit and some photos too. A few of Scooby and Scrappy too of their antics the last week!

Thanks for taking the time to check this blog and special mention to Jim (man we met at the Western) - thanks for remembering and taking the time. It is appreciated - and yeah you are right I can eat!!! LOL

Ok, where did I get up to before.....??? errmmm..... oh yeah, sportsday......so next ...

THURSDAY (12th) - Today we had our weekly trip to the sick kids, Adams bloods were fine again this week but we were upset in learning that Dr Buddy was returning to Dundee the following week, boo hoo, he is great. After the sick kids we had our local community newspaper visit us as they would like to publish a story about Adam to let people know how he is etc, and also gives us the opportunity to thank everyone locally for their continued support too, using the latest school picture in the paper too, it is lovely.

FRIDAY - After school today we went bowling with Craig and Kira, Kira has never bowled before and I think she really enjoyed it, needless to say Uncle Craig won - I mean he couldn't possibly let one of his nephews beat him, he would never hear the end of it!!

SATURDAY - This was our community funday at the community centre, I took the boys round and Paul and Marc were in charge of a stall, thanks Michelle for making loads of tablet for us to hand in, it is so lovely the boys bought 10 bars back!!!

SUNDAY - We had a BBQ at Stuart and Dionne's, it was a lovely day and Uncle Ron and Aunty Ann were there from Kilmarnock and Auntie Jean was there too. The kids ran themselves ragged for 4 hours, they had so much fun.

MONDAY & TUESDAY - These two days were a little quieter as Craig and Kira decided to go up north for a day or two, borrowed the car, tent and sleeping bags and headed off. Normal routine for us though!

WEDNESDAY - What a great day! After radio therapy we had to go to school with Adam to "Meet the Teacher", he is very lucky he will be in the same class as his best mate, Calum, and they are very, very lucky to be getting Mrs Howie as their teacher - she will have to keep an eye on those two cheeky monkeys!! After leaving the school we took adam, Calum, his mum and nana for lunch at Brewsters - it was brill, the boys were arguing over silly things, brought a tear to my eye seeing them acting so normal with each other - ha ha. After lunch we popped into Ocean Terminal shopping centre and paid a visit to the build a bear workshop where Calum and Adam bought each other a teddy/monkey for starting school. Adam got a monkey, which he named Ollie after calum's toy monkey Ollie and Calum named his teddy Adam after his best mate! So cute!

Ok, a few more days still to go, will pop back later to do these - I promise!!!!!

Scooby and Scrappy.................what have they been up to?????

Monday - bowling/skittles

Blowing bubbles on Tuesday

Scrappy in training - skipping on Wednesday.

Thursday was gun fight at the OK Corral - water pistols!!!

Friday is card day - playing snap!

Lynn x

Two thirds done!

2008-06-14T18:25:00.009+01:00

Well this is the end of week 4 of Radiotherapy and I can't believe the time has gone so fast.

Another very busy week for us, look forward to getting away from it all in a few weeks time.

So, lets see, what we've been up to....

TUESDAY - This was the annual taxi day out for kids. One our many amazing friends Dode (taxi driver) took Adam, Scott, Spike and myself to Yellow Craigs for a fantastic day out. We were also joined by Dode's wife Sharon, daughter Shelley and grandson Lewis.

We started of getting picked up by Dode at the house, going to the Western for our Radiotherapy (even Scooby and Scrappy were at the beach today!!!!)

and then onto Murrayfield Stadium to join the procession of taxi's all dressed up with hundreds of balloons and stuff. It was a sight to behold.

During the drive all the way down to Yellow Craigs, we stopped off in Musselburgh at Luca for ice cream and a water fight. Everyone had water guns and as we had been skooshing people all down the road we had run out of water so had to quickly refill and be ready!

On arrival at Yellow Craigs there were marques set up with food and drinks for eveyone, pony rides, shows, chaplins disco bus and loads more. We had a ball, even made it down onto the beach!!

Thank you so much to everyone for such a fun day,especially Dode! You are the man!! Ha ha!

WEDNESDAY - Another busy and interesting day, Uncle Craig and Kira came with us to the Western this morning to see our daily process of treatment with Adam. Think it was a little early for them both though!! Ha ha!!

After his Radiotherapy we then went to the school as it was sports day for the boys,

Scooby was up for the Egg and Spoon race but Adam just beat him!!

The boys all did really well at their sports and got loads of 1st, 2nds and 3rds between them. To top it all their house group, St Nicholas, won!!! Woo hoo !!! Go the reds!!!

Adam with his "sister" Megan (in yellow) and her cousin Rosie at sports.

More to follow tomorrow, I am beat!!!

Lynn xx

So much to tell.....

2008-06-10T17:38:00.007+01:00

Apologies once again, had a busy few days.....am exhausted!!! So where are we?...

Friday - had a great day with June yet again. Scooby and Scrappy were up to no good again! This morning we found them playing dominoes!!

After the hospital Adam went to nursery, when we went to collect him we were greeted by a few of the mums and the staff and given a card and envelope. The card was from everyone telling us to have a day out on them! Inside the envelope was a large sum of money which had originally been raised for the nursery garden by the kids doing an obstacle course. After collecting it all, they decided to give it to us instead. We were very taken aback and reluctantly accepted it.

THANK YOU SO MUCH EVERYONE AT NURSERY!

We realise that so many people want to help us but can't do anything physically so are helping to ease our situation financially, especially as Spike is not working at present. It has been very difficult to accept the generosity of everyone but we do understand it and would do exactly the same if the shoe were on the other foot so to speak!

Saturday - Adam and Scott went to the youth club on saturday morning and had a great time. Spike was away all day for a golf outing with the 32 club to St Michaels at Leuchars in fife. It was Leith Gala day too but I decided not to take all 4 boys on my own so the boys just played in the garden. Saturday night Spike and I went to the Lochend Golf Club for a Race Night which had been organised as a fundraiser for Adam by some very dear friends (dont need to mention names - they know who they are and how much we love them all), this night was a great success, it gave us an opportunity to see some friends whom we have not seen since Adam was diagnosed. The support we are getting from you all is amazing! Thank you so so much. The amount raised on the night staggered us! We were both in tears more than once, again at people generosity and the support. We are very lucky to have the friends we have! Adam would love to go back to South Africa and we would love to take him, the money raised on saturday alone would pay for us all to go, need to look into travel insurance for Adam though as it is a very long way to travel, maybe have to go somewhere closer like Euro Disney.

THANK YOU FROM THE BOTTOM OF OUR FEET TO EVEYONE WHO WAS REMOTELY INVOLVED IN SATURDAY NIGHT - YOU ARE AMAZING PEOPLE!

Now - on to Sunday - Uncle Craig and Kira are here!!!!!

We had quite a lazy day on Sunday, all tired after a long saturday and so we just had a nice chilled day.

On to Monday - when we arrived at the hospital this morning Scooby and Scrappy were having a party for Uncle Craig and Kira coming, unfortunately Uncle Craig and Kira were not with us this morning so we ate all the cakes ourselves!!! Hee Hee, the were delicious - June made them specially for us and Scooby and Scrappy had party poppers and everything - I forgot to take the camera but have a couple of pics on my phone but not been able to bluetooth them yet so use your imagination!!

We then took a trip through to Livingston to pick up a parcel, which we discovered they had tried to redeliver to us! We went to the shopping centre, had a walk around bought a few things then came home. Boys went out to play in the garden.

We are still here!!! Honest!!

2008-06-05T20:22:00.004+01:00

Apologies, I have been so tired the last few days that I have not had the inclination to pop on to update, so sorry if you have been checking daily!

Everything has been going really well this week, think that is why I haven't been on here much too. Adam seems to be on an "up" at the moment. He is very upbeat and gets very excitable in the mornings about going to the Western, although that may be something to do with June, our fabby nurse. She never ceases to amaze us every morning with Scooby and Scrappy doing something different eveyday.....they have been playing football, playing golf, having a BBQ, having a medical to play for Sunderland AFC, been at the library, having a long lie and still in bed when we arrived, they were even hiding from us one morning and Adam had to go "seek" them! June is making our time at the Western very pleasant, as is all our "sleepy" doctors (anesthetists).

He had his bloods checked again today at the Sick Kids and they are better than last week so we are very, very happy. He seems well, a little tired maybe, but he has been in to nursery 3 times this week so far, which is brilliant and we have left him there and picked him back up so that has been even better!!

We also had a special visitor to the house today, David has been friends with Darren McCormack for many years and Darren just so happens to be a young, up and coming footballer with Hibernian FC, he has very kindly given Adam his football shirt that he has worn this season and he has signed it for him. Here is Adam with Darren's shirt and with Darren himself. Cheers Darren!

Only got 3 more sleeps until Uncle Craig and Kira arrive!! Craig says that Kira is very excited, I just hope she wont be too cold, not used to our Scottish weather, so I hope she brings the sunshine with her.

Thanks again to everyone for their continued support, feels like we have been on this journey forever already and it's actually only been 5 and a half weeks!

Will update again in a day or two!

Lynn x

End of another week!

2008-06-01T10:26:00.008+01:00

Well. it's the end of another week. 2 down 4 more to go. All in all we had a relatively good week this week. Adam is becoming more accustomed to hospital every morning and even knows he does not have to go Saturday and Sunday.

Friday went well, after our daily trip to the Western and getting his gripper needle out we headed for nursery. They were having an Art Exhibition of all the childrens work. We got juice, tea and coffee and cream scones and chocolate crispies. After looking around all the artwork we had to negotiate with our artists a price to "buy" the pieces. All funds raised were going to our sister school in Africa. He had a great time, hopefully this is us getting back into the going to nursery routine. Going to take him a couple of times next week again, so long as he is feeling well enough.

So these pictures are priceless works of art now, which we will treasure for a lifetime.

On Saturday, Adam went to the local Youth Club for ages 5 to 8 years olds which is held round the corner from us at the Community Centre from 10.30am - 12.30pm. Scott already goes there every week but Adam only just started since turning 5. It's really good for them and I also leave them, so it's great that Adam and I are getting some time apart too. He was really excited and did really well, he joined in with most activities and was well behaved. Unfortunately at 12 noon, I got a phone call to say Adam had been sick, only bringing up his juice, so again, I think it was more the excitement than treatment. I went round and picked him up and he was munching on snack!! He felt fine!

Once they came home from the club we all had lunch. Paul and Marc had been out on their bikes for the morning too and had a good time together.

Spike was golfing at his old club, Swanston, yesterday and not teeing off until after 1pm, so I took the boys to Portobello Beach as it was scorching here yesterday. I thought they would maybe like to go paddling, walk on sand and have an ice cream - how wrong was I !!

They went in swimming!!! I had only taken 1 towel with me too, ha ha. They had a great time though, Paul ended up in his boxer shorts as his jeans got soaked. We did have an ice cream though.

We came home and had a BBQ in the garden with our neighbour, Vicky, her sister Becka and daughter Mia. It was a great way to finish of a lovely day. Spike was back from golf about 7pm just as I was getting the boys organised to come in from the garden. He had a good time at golf too.

Was a lovely day had by all.

Almost feels normal!

Lynn x

7 more sleeps 'til Uncle Craig and Kira arrive!!!

Another new day!

2008-05-29T20:17:00.004+01:00

Firstly....HAPPY BIRTHDAY CRAIG!!! It's my brother's birthday today.....he's 21 again!

Secondly, apologies for not updating as often but I am just too tired to do it everyday.

Adam is coping well with his treatments, his blood counts for this week are still ok and we have no hair loss yet either. He has been sick a few days but not at regular times and we think it is more likely to be because of "yucky" medicine and flegm as he has a chesty cough than the treatment.

We managed to get him into nursery on Wednesday which was great, everyone was so delighted to see him, he didn't want to leave!! He even stayed and had his lunch!!!

He is addicted to his bike just now, which is great but it tires him out quite a lot, he is having an afternoon nap almost daily now as the treatment starts to kick in.

Only 10 days until Uncle Craig and Kira arrive for a holiday. The boys are so excited, I think Adam would rather be going to South Africa though to see him but he can't.

Not much else for now, am so tired, hope to get an early night tonight and a decent sleep!

Thank you all for taking time to read this and for your continued support.

Lynn x

What day is it?

2008-05-27T17:05:00.006+01:00

Ok, where are we? What day are we on? Oh yeah, it's tuesday today!!

Monday was another busy day for us, back into the daily routine of getting boys to breakfast club and then heading up to the Western for our Radiotherapy. June, our lovely nurse, was asking Adam all about his weekend and how the BBQ went on saturday. We took in our giant Scooby Doo to show her too. Not sure if I mentioned before or not but June has her own Scooby, a small one that when you press his tummy he giggles and talks. Well our Scooby and June's Scooby swapped places for a day and had a sleep over at each others. We decided to take pictures for June to let her see exactly what her Scooby had got up to! Here they are........

Playing the Wii !!!

Having a ride around the garden!

Sunbathing!!!!!

On the trampoline!

Sound asleep after their busy day!

After our Radiotherapy, one of our fab friends, George (Dode), had organised for Adam to go to Easter Road Stadium and meet the Hibs manager, Mixu Paatelainen. We were supposed to meet Dode at 1.45pm to go into stadium and have a wee tour and meet Mixu etc. However at 1.30pm, Adam was sick and we were unable to go! We phoned to explain why we couldn't go and within an hour or so our friend arrived at our door with a Hibs football for Adam, signed by Mixu himself. Adam was delighted!

Here he is with his ball yesterday, when he was feeling much better.

All in all we had a good day, apart from Adam being sick.

I suppose we just need to go with the flow each day and not try to plan too many things as they may not get to happen!
Lynn x

The end of our first week.

2008-05-25T14:34:00.003+01:00

Well we made it! One week down, 5 more to go. Adam has been doing better everyday, in the way he is responding and acting towards treatment and hospital. He does get very anxious and was worried on Friday that removing his gripper needle was going to hurt. I had to explain it would be taken out when he was asleep so he wouldn't feel a thing - don't think he trusts us completely anymore!

We have managed to have a relatively "normal" weekend too. On Saturday our friend Judi celebrated her 50th birthday and had a BBQ at the Pavilion at the Meadows. We were not sure if we would be able to attend or not but as Adam was doing so well we decided to go for a little while. Adam got fed up pretty quickly but the other boys had a great time playing with all the other kids and it was great for Spike and I to catch up with all our friends that we haven't seen for ages. Adam sat in the car twice watching a DVD, I tell you - that was a very good investment for us that DVD player!!!

After we got home Adam was a little sick and then went off to bed, to be honest I have lost track of his sleeping pattern as it is so erratic. All I know is that we NEVER get more than 4 hours without him wakening these days. I think my brother and sister-in-law get more sleep with my 5 week old niece!!!

Had a nice relaxing day so far today, Paul away playing in a football tournament and Spike golfing. Other boys been out playing in the garden and also in playing with Mia downstairs. Wer going to meet Spike at the golf club ater for a juice and Adam wants to cycle down instead of taking the car, that should be interesting!!

Back to the new regime tomorrow again, boys at breakfast club and us at the Western.

Thank you to everyone for collections that have been made on our behalf. It is a very difficult time for us but we are also finding it difficult to accept peoples generosity, we have been completely overwhelmed! We are not used to being on this side of the collections. It is all appreciated greatly as Spike is no longer able to work due to our new circumstances.

Thank you so much, we are very lucky to have you all as our friends.

Lynn, Spike and the troops!
XxxxxX

The steroids have stopped!!

2008-05-22T18:57:00.006+01:00

Yippee!! We are off the steroids again (for now), and glad to see the back of them. The way they change moods and behaviour is unbelievable. Not that Adam was ever the perfect child but you get my meaning! Ha ha!

Whatever way we look at it, he has become himself again, let's hope the headaches stay away this time, at least for a longer period, otherwise he will need to start them again.

Radiotherapy was good again this morning, he still gets a little upset before hand but I think that is more anticipation of what he thinks is going to happen rather than what actually happens. As he is asleep he is still a little confused as to what exactly goes on when he's sleeping.

Left the Western and then headed home again before going up to the Sick Kids for his first full blood count. He will need to get this done at east once a week to keep an eye on different cell levels. If his red cell count is too low he will need a transfusion and if his white cell count is low then he will need antibiotics to help fight any infections he may come into contact with. I forgot to phone back this afternoon to get his results so will need to wait until tomorrow now, but they must be ok otherwise I am sure they would have phoned us!

After a run around in the garden for a while after school with the boys, he had a wash and had something to eat and is now getting settled for the night. Hoping he sleeps well, had a reasonable night last night although Scott slept in beside his dad while I slept in the room with Adam in Scott's junior bed - not recommended as I was very sore this morning not being able to stretch out properly.

Coming to the end of our first week or Radiotherapy tomorrow, it's gone in so quick.

The days are slipping past us too quickly - how do we slow this roundabout down?

L x

David, Marc, Scott and Adam feeding the ducks and swans at Arthur Seat.

Today WAS a better day!

2008-05-21T19:28:00.002+01:00

Today started out nice and early like every other morning lately, up just before 6am, again having had a restless and somewhat sleepless night. Our bodies seem to be getting used to functioning on under 5 hours a night.

Paul and Scott back to school today but Marc still off til next tuesday (after his delicate operation last week). Had to get granny up early this morning to help us out as times don't work too well around school times. Have got the boys organised for the breakfast club though from now on, so granny wont have to get up that early every morning, although she did offer, so did David!!

Adam was in a great mood when we got to the Western this morning and it almost lasted until we got taken, had to wait about 10 minutes this morning and he was starting to get unsettled, we then got taken through and he had his "magic sleep". When he came round this morning he was fantastic. No crying or moaning, not hitting or kicking, it was just Adam, our Adam! Not the horrible devil child who seems to invade his body every now and again. I maybe should have said but his steroid dose has been halved today and what a difference this has had on his behaviour. It's official we all hate the steroids!

Infact, he was so brilliant, that he admitted he was starving and we went to Morrisons for breakfast! We had hoped to pop into the nursery to see all his friends but ran out of time. Too busy munching at Morrisons!! Hopefully pop in on Friday morning though.

He was a little sick tonight just after 6pm but I think that was because he got himself into a flap because I wouldn't let him back down to the garden as he was having a bath. He has been eating since though and not been sick again, so hopefully it wasn't any of his drugs making him sick. Will need to keep an eye on that.

So, all in all, quite a good day for us today. He is in bed now watching a DVD, so hopefully be asleep in next hour , then so will I be I think. Spike and Paul watching footie and other boys in bed too.

Once again, thanks for support and messages, all are really appreciated. Infact we are overwhelmed by the whole situation.

Love to you all.

Lynn, Spike and the clan.
XxxxxX

A better day?

2008-05-20T19:15:00.003+01:00

Well that is what we had hoped for anyway. Again sleep seems to be something we are having to lose out on for now, Adam was up and down again almost every hour (worse than a newborn)!!

Anyway, up early again and chemo given, still showing no signs of nausea so that is good. We were all in good form going to hospital, when we arrived he asked if he could show his brothers the treatment room today while we were waiting for the anethetist to arrive. Having been told times were not flexible, we then had to wait 40 minutes for her to arrive,by which time Adam's good mood had gone and he was starting to get upset, fed up and generally peed off. He started crying and moaning. Spike took the other boys out to the car to watch a dvd while Adam and I waited some more. She eventually arrived and Adam was taken through for his "special" sleep and radiotherapy. His waking today was much much better than yesterday, he was still moaning but not the demon child like before.

He has reduced the amount of steroids so we are not sure if it is because of this or because he was exhausted and cried out waiting around before is treatment. Either way it was a much better time for him on our journey home today.

Here's hoping things are about to settle into a pattern now.

Boys back at school tomorrow so granny having to get up early to help out. Will need to sort out the breakfast club at school for them too.

Again, thanks for messages and emails. It's great knowing we are not alone on this journey.

Lynn x

First day of treatment...

2008-05-19T15:30:00.003+01:00

Well today was our first day of treatment. Adam had quite a bad night last night, didn't sleep much so needless to say, neither did we!! We were up bright and early to get organised for the hospital, half 8 start at the Western. The boys were on school holiday today so they were not too happy to be dragged out of bed earier than usual.

Adam had his first chemo drugs at 7am this morning and so far doesn't seem to have had any reaction to them, no sickness anyway. I have to say though, the steroids turn him into a demon child, he hits, kicks, screams and shouts.....he has also sworn a few times! We know it's not him and that it is the steroids causing these behavioural changes but it is really hard to deal with.

This morning at the Western, he was very upbeat as we took all the boys, even David, with us to let them all see where Adam would be going everyday while they were at school. All went well, the boys got to see the MRI machine (or huge donut as they call it). A few pictures....

Adam was then taken through to the Radio room with me and put to sleep with a little gas, once alseep they fitted him with a gripper needle (into his main line) and then administered his anesthetic. Had his radiotherapy and gradually came round, was very peaceful to start with , then the demon child appeared and we had a fight on our hands. He became very aggressive and was screaming that he waned to go home, they couldn't let him go until he calmed down, so it was a very distressing time for us all. He did eventually calm down and we came home and he was like a different child - himself again.

Can see it's going to be a long hard ride over the next 6 weeks but we have to stay strong for Adam and the other boys, and ourselves too.

Thanks for all the support, financially, emotionally and physically that we have received from everyone. You have no idea how much we appreciate it and have been overwhelmed by everyone's kindness and generosity.

Love to you all from all of us.

XxxxxX

The Journey so far.....

2008-05-17T19:52:00.004+01:00

Monday 28th April 2008, unbeknown to us, this was the day our lives would changes forever.

Adam had been complaining off and on for a few weeks of headaches, various times of the day and the medicines we were giving him seemed to have very little impact. Having had Adam at the doctor 3 times and having blood samples taken, we were no further forward. The last time we saw the GP she was sending a referal to the outpatients clinic for further investigations.

On Sunday 27th April, we had a birthday tea for Marc, who was 8, and my Auntie noticed that Adam was a little unsteady on his feet along with low tolerance for noise and light. Monday morning came and I decided that enough was enough. I took him to the Sick Kids Hospital to A&E. I had decided that it would be better to get things checked out by them. If I was over reacting then I would happily accept a slapped wrist for wasting their time. I wish now that it had been so simple.

After a full physical examination, the doctor there could find nothing that my GP had missed, I started to feel like I had over reacted. She then suggested doing an MRI scan just as a precaution and if nothing showed they would treat him with migraine. I remember sitting thinking at the time "God . I hope he doesn't have migraine" as a sufferer I wouldn't want that for him.

The MRI was arranged very quickly and within 2 hours he was being scanned. The scan which was supposed to last 20 minutes actually lasted and hour and a half! Adam was brilliant, he just lay watching Tom and Jerry on TV while wearing a cool mask like a stormtrooper from Star Wars!

The results in, the doctor came to discuss things with me, to cut a long story short, I phone Spike to come up to hospital and arranged for Granny to pick other boys up from school. Adam was admitted to Ward 1 and we were given the devastating news that our son had a brain tumour. Now I wished he had migraines.

We were told that the tumour was causing pressure and that was causing his headaches. They quickly started him on a course of steroids to reduce the swelling and thus stop the headaches.

I stayed over at hospital with him while Spike had to come home and care for the other 3 boys and try to digest the news we had been given. It was very difficult being apart from each other at this time but it gave us both time to take in the situation and what it would mean for us as a family.

Tuesday 29th April, this was when we discovered the full extent of the situation and I have to say, that almost 3 weeks on, it still seems surreal. Adam has a brain stem tumour (pontine glioma to give it it's official name) there are only 40 children a year in the UK diagnosed with this type of tumour. Due to the location of the tumour it is inoperable and far to dangerous to even take a biopsy as the brain stem is the part of the brain that joins with the spinal system and the main control area for many day to day functions like breathing and swallowing.

His prognosis is not very good, but better with treatment. He starts radiotherapy and chemotherapy capsules combined on Monday 19th May for 6 long weeks. In preperation for this he has had a mask made for radiotherapy - this is to hold his head completely still while receiving the radiation lasers, he had had a central line put in his chest for anesthetics and to allow bloods to be taken, he has also had a feeding peg (button) inserted into his tummy - to allow medicines and any additional liquid feeds he made need in due course. So to date we are all geared up for Monday to get things moving.