Another new day!

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?

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.

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!!

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!

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?

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...

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.....

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.