about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  make a tribute donation

Click here to go back to the main page.

26th FEB 2013

HAPPY 21ST BIRTHDAY

Tuesday, May 8, 2012 8:27 AM CDT

Alex is well in himself,he is still having seizures etc.

His last two MRI's showed something. The doctors think it could be cavernomas,so we are on watch and wait.

Friday, June 3, 2011 3:50 PM CDT

Sorry I haven't updated in a long time.Alex is well,same old problems but managing to cope.
We are waiting for MRI date,it is the longest we have been without a scan.
Alex is gradually getting his confidence back after being so badly treated [mentally]at Aldercar School.
He is at the moment at Broomfield College and doing well.

I will update when MRI sorted out

Friday, October 29, 2010 9:59 AM CDT

Alex is doing ok.His last scan in Sept was clear.
In the middle of trying to sort his future.

Sunday, July 11, 2010 10:49 AM CDT

Alex is fine except for the same old problems.

We have been on 3 holidays since last update which has been great. We took Nathan and Alex to Disneyland Paris[by train as Alex can't fly],Center Parcs and Bournmouth.Had really good weather.

Tuesday, May 18, 2010 8:05 PM CDT

Latest Scan Results ----OK

Alex is doing well apart from his seizures and short term memory problems.
He recently sat his Math GCSE Exam again and got a 'C'.
he is studying Health and Social Care and doing work experience.

Friday, February 26, 2010 10:25 AM CST

HAPPY 18TH BIRTHDAY ALEX

Wednesday, October 28, 2009 8:11 PM CDT

Alex had a MRI Scan and the results are NO CHANGE FROM LAST SCAN IN MAY.
So scan again in April

Alex is doing ok.Still having seizures,no worse,no better.

He is studying Heath and Social care at school.

It is Ben's 5th anniversary on Monday and my nannas 6th on Saturday,where does time go?

Friday, August 28, 2009 4:57 PM CDT

SEVEN YEAR SURVIVOR

Yesterday 7 years ago was the start of Alex's journey.Today 7 years ago he had his operation.

I don't know where time goes.

I am so glad he is still with us.

Tuesday, July 21, 2009 1:47 AM CDT

Alex has been enjoying the last few weeks.He is still having seizures the same as normal.We have sorted things out at school and he has been on a school trip with them.He has started his treatment for a brace on his teeth.

Tuesday, July 21, 2009 1:47 AM CDT

Alex has been enjoying the last few weeks.He is still having seizures the same as normal.We have sorted things out at school and he has been on a school trip with them.He has started his treatment for a brace on his teeth.

Monday, May 25, 2009 7:56 AM CDT

ALEX'S SCAN RESULT ---NO CHANGE FROM LAST ONE

I haven't seen his consultant yet so don't know when next scan is.

We have just returned from a lovely holiday in the Isle of Bute courtesy of 'Calums Cabin' a charity set up in memory of Calum for children with cancer.
It was such a beautiful place and so quiet.The cabin is fantastic,Alex really felt at home there which made it so much easier for me.The weather was mixed,bit of rain and some sun.It was nice to sit and chill without the stresses of hospital and school.

Talking of school,we had a meeting but we still don't think they really understand Alex.They wanted Alex to drop Maths but I refused as he wants to do it to get a 'c 'and he understands it,just takes time,the school doesn't want to give time.They seem more geared up to 'babysitting' the students who have special needs.
Another meeting in July.

Thursday, April 30, 2009 3:25 AM CDT

Alex is feeling better,he wasn't very well over Easter,he was sick and had dizzy spells.Hopefully it was just a bug.

We managed to go to Blackpool for the day,a lovely sunny day.Had fish and chips,Hot dogs and ice-cream,great seaside food.

I can't believe it's been 3 years since my mum passed away [2nd May]

Next MRI scan 7th May

Monday, April 6, 2009 4:56 AM CDT

Alex is still having seizures,almost everyday but it's hard to know if it's anything to do with any scarring etc or to do with school as he has had problems[new school who don't realise his problems,he is very intelligent but has a severe problem with his short term memory and gets extremely tired]we have another meeting with them in May and someone from the hospital is coming to help.He doesn't have to go but he wants to.

We are still having problems with our next door neighbours[Shaws],they are still being awkward about parking and the mum is jealous about 'me staying at home whilst she has to go to work and pay for her car!!!!' Unbelievable. Oh and she doesn't believe Alex should have a car for his use because he doesn't drive [he's not allowed to]He gets a car allowance for being disabled.I really don't understand her,she has a husband,two sons,a daughter all over 18 and their girlfriends/boyfriends living and staying at their house and most take great 'pleasure' in annoying us.All we want to do is live quietly in our own home.

We're looking forward to easter,all those easter eggs.

Friday, February 27, 2009 8:59 AM CST

Happy 17th birthday Alex for yesterday.

We went to the hospital for the results of the scan.They seem to believe that what we saw in Nov/Dec is not tumour reaccurance but the appearance hasn't changed since then,so we don't really know what it is,it could be scarring.There was a discussion between Tim Jaspan,David Walker,Germany and neurosurgeons.So we are scanning again in 3 months.

The other night we took Alex and Nathan to Alton Towers Hotel to stay.The park wasn't open yet but we enjoyed the entertainment at the hotel.

Saturday, February 21, 2009 3:07 AM CST

Alex had his MRI/MRS Scan,we will not know the results yet,hopefully will find out before next Thursday.It didn't take as long because the Consultant radiologist was in a meeting and couln't look at it whilst Alex was in the scan.

It is half-term here and Alex has been enjoying being off school,we spent an evening in Londons Westend,having supper.Also had a joint birthday lunch [mine and Alex]with the pests eg Nathan,Ned,Ryan [only joking]

Still having problems with our next door neighbours,Shaws.we have had years of them either doing DIY work on the house,think they must have replaced everything in the house five times other.Also they keep 'nicking'my car parking space on the street.We have only room for one car on our drive and our car will not fit into the garage whereas next door have room for 5 cars on their drive and they also own another house on the street with car parking for 3 cars.I know they are entitled to park in the space but I think it's really nasty they're doing this.Most other people on the street agree with me.We live in a cul-de-sac so spaces are limited.

DERBY COUNTY 3 NOTTINGHAM FOREST 1

DERBY DID IT AGAIN!!!!

Thursday, February 5, 2009 12:33 AM CST

EMMA LEIGH BROWN born 20th Jan 2009 8lb 14 1/2oz
Alex's neice,our grand-daughter,Sam and Tonys daughter,Neds sister.

Yet another delay on his MRI,the department that deals with them say there isn't space for his MRI until 19th Feb [I don't believe that, I think the man,whose name is Andrew,is just being awkward,apparently he can be like that.].We have an appointment to see Prof Walker on 26th Feb which is Alex's birthday.I have asked for the results before then if possible.

Alex is still well,still getting fits as usual.

I had to go into school again as they were not going to enter Alex in exams which I dont think is fair,if he is doing all the work then he should be allowed to do the exam.


Derby County are playing alot better now we have Nigel Clough as manager,although they did really well under David Lowe when we beat Man United.The highlight of our games was last night when Derby County BEAT Nottingham Forest 3-2.

Alex has been playing in the snow,building snowmen and bombarding us with snowballs.His school has been shut for 2 days this week.

Monday, January 12, 2009 2:39 PM CST

What a waste of time going to the hospital except I did get a referral for a second opinion to Germany[this could have and should have been sorted out before by telephone.]
I still cant believe there was so much urgency in November and then it seems to be forgotten.I got very angry at the meeting and told the Consultant 'that I hoped he was right because I would not forgive him if anything happened to Alex through incompetance.'
Scan again first week of Feb.

On the school front,I had a meeting with his helpers and sorted a few things out,apparently they hadnt got all his files in their dept.His old school have offered to meet with them and help sort Alex's needs.

He is performing in a school production about the second world war years in a school.

It was my nephew Darrens' 21st birthday party on Saturday and Alex enjoyed karaoke.

Monday, January 5, 2009 8:28 AM CST

Alex had his scan.After lots of delays from Prof Walker I eventually found out there was no change from the scan in Nov.Prof Walker doesn't want to do anything except scan at end of Jan/beginning of Feb.I don't agree with this and have a meeting with him on Thursday.I can't believe he has just ignored the fact it could be tumour growth.I feel as if time has gone back 6 years.I have lost my trust in the doctors again.
Alex already has problems with seizures,memory and balance so it's hard to see any symptoms that may arise from tumour.We didn't have any clues last time.

It was Bens birthday on 16th,he would have been 5.

Alex had a good Christmas,we went to Toby Inn for Christmas lunch with all the family.

Ryan had his first birthday on 29th.

Tuesday, December 9, 2008 3:18 AM CST

We received Alex's scan results 2 weeks ago,there was cyst and enhancement on the tumour bed.Doctors have scheduled another MRI on Thursday 11th Dec.We probably wont know the results for a few days.Apparently a small cyst was on the last scan in July but it was missed at the time.Wish I'd have known because I would have stopped growth hormone,not stopped Thalidomide and wouldn't have had his op to put plate in his head.His consultant was shocked at the scan results and so were alot of other people at the hospital.I am angry that the previous scan was misread,the same person,a radiologist consultant,has read all of Alex's scans.The top man,I'm told.
Alex is very well in himself except for being a little sore from having an op on his tongue,he has been tongue tied since birth,so we decided to have it done.When he was little we had been told Alex couldn't have the op.

Alex is doing ok at school,there has been a trainee music teacher who has been helping Alex and giving him keyboard lessons.

Monday, November 10, 2008 7:06 AM CST

Alex started school last Tuesday,he will be taking GCSE Maths because he got a 'D' before,he hopes to get a better grade.He is taking GCSE English again because although he got a 'C',the school is a Language School and to attend he has to take a language and he wouldn't be able to learn another language.He is studying GCSE Performing Arts and AS level Biology[he received 2 'c's in Science GCSE.]He still gets full support at school.

Alex has a MRI Scan on his head and spine on Nov 20th.
His seizures seem the same and he still is having trouble with wind [burping].

It was Bens 4th anniversary of his passing away.He would have been 5 this year.

Thursday, October 16, 2008 1:19 PM CDT

Alex went into hospital [ward E39]on Monday and had his operation to put a plate in his head where his skull is missing on Tuesday afternoon.He is fine but very tired,it was too noisy at night from the nurses,I think they forgot they were on night shift.I moaned about this on Wednesday morning as Alex and I didn't get any sleep at all in the night,other parents did the same.On Wednesday night I had been told we could be moved into a quieter area of the ward,which we did but then the night shift came on and it got noisy again.I eventually got fed up and moved to the playroom with Alex's quilt[Spongebob]and pillow to let Alex sleep on the sofa at 1am.The nurses didn't like that and at 2.30am we were moved to a side room.The ward was not his usual ward[E38].The op went very well.He will get his stiches removed on 24th Oct,I found out that if someone has had chemo and radiotherapy then the stitches have to be in double the time.Alex and I are now back at home.

Alex's funding has now come through and he will be allowed to attend Aldercar school.He will probably start after half term.

He has stopped taking Thalidomide.
A MRI is being arranged for about 4 weeks time.

Sunday, September 14, 2008 6:13 AM CDT

Well as you all know nothing ever goes to plan.Alex went to Derby College on Tuesday afternoon as arranged [at college the all students have individual timetables.]I collected him at 4pm and he had enjoyed the afternoon,the assistant who was with him was fine but at 5pm I received a phone call from the College stating that they could not ensure his safety as he had a hole in skull and he was small and alot of the students were boisterous and alot larger than Alex.Baring in mind the College had met Alex twice before he had started and now they drop this on us.

Anyway this seems to be a blessing in disguise,we decided to look at Aldercar School[we almost considered this previously]and we were really impressed.Alex loved it,they made him feel so welcome and will sort out a individual plan for him.The only problem now is to sort out the funding from the local authority,but we're ready for the fight.I just wish we had gone to see the school in the spring.He will be able to take some more GCSE's and life skills which is better for him[I think AS and A levels would be a big jump for him at this time]but will still be able to access the sixth form and be classed as one of them.

His old school have been in touch and they informed us that Alex's exam in English Liturature is being sent back to the exam board to see if extra makes are appropriate,he got a D but maybe that can be upgraded to a C

Derby County WON their first league game in a year.They beat Sheffield United 2-1.Alex has attended all their matches and still stuck by them.

I forgot to add we met Cliff Richard at a book signing,I have always loved his songs and we have seen him in concert.
He was really nice.

I wish I could work out how to update photos on this web site.

Monday, September 8, 2008 3:30 PM CDT

First day of College.

Alex enjoyed his first day.This week is spent filling forms out,joining the student union etc.

He is feeling alot better [had a dicky tummy] but still having seizures.

Date for his surgery,to put a plate in his head,is 13th October.

Thursday, August 21, 2008 9:07 AM CDT

Alex has received his GCSE results.

English Grade C
English Literature Grade D [he feels disappointed he didn't do better]
Science Grade C
Additional Science Grade C
Mathematics Grade D
Religious Studies Grade E [he had a large seizure in this and again feels disappointed,was predicted a C]

I AM PROUD OF HIM.I THINK HE DID BRILLIANT.

He didn't even have to go to school and even though he only went part-time until this last year,and battling with his short-term memory,has done really well in his exams.
I think alot of it was in his long term memory from before as Alex reminded me that,when he was 10,just before he was ill,he attempted a couple of past GCSE papers when his sister was revising and he did really well in them.
For people who do not know the grades are A* A B C D E F G and Unclassifed.

He is looking forward to starting college in September.

Tuesday, July 8, 2008 6:14 AM CDT

Where does time go.

Alex is well,he is still having seizures but not as many.
His short term memory problem is still bad and he still needs 24hr care but it could be worse.

He had his school prom.He looked great in his Tuxedo.I would like to say thanks to Elaine from Thomas Ball Charity.

Alex has finished all his GCSE Exams,he took Science,Maths,English Lit,English Lang and RE.He is now waiting his results.Some days he spent the whole day in the exam room,he was allowed 100xtra time and break times.He was in a special room with 2 adults.Unfortunately he had a couple of seizures doing them.
He has finished school.I can't really believe it.He has survived to do this.Alex wrote poems and put them onto mugs to say thank you to all his eco's who have helped him throughout this school[John Flamsteed],without them he would not have been able to go to school.[and gave them a TY beany baby]

He will go to Derby College in Sept to do life skills and modules leading up to taking other courses next year.He will be in a specialist unit for people who need extra help with every day things.He is very clever but needs alot of extra time to process information.He was offered a place at St Benedicts 6th form to take AS levels in History and English Lit,he nearly went there but we had a set back at the hospital regarding his operation on his skull.Alex was promised he would have the op in the summer holidays but there was a mix up between the surgeons secretaries.I am really really angry over this.The op is now scheduled for 13th October meaning that he will miss school/college and if he was doing AS levels there would be no way he could keep up with the work.

He is still taking growth hormones and has growm 1cm,hey it's better than nothing.
Still on Thalidomide,now on 50mg on alternate days.

We went to Scotland to Malcolm Sargent House,it was great as ever,Alex loves going[we all do]and he even managed to go down for supper every single night.

Alex and I went to see the London Gospel Choir last week with The Joshua Foundation and Alex got the chance to sing with a couple of them.A very enjoyable day.

Many thanks to all the people who have sent him post/emails through the Postpals site.He has really enjoyed receiving them.

Alex had a scan on 3rd July but we haven't received any results yet.

SCAN RESULT
NO CHANGE FROM PREVIOUS SCAN.NO TUMOUR SEEN.

Friday, April 25, 2008 2:50 AM CDT

I was just watching a TV program To The Manor Bowen featuring Laurence Llewelyn Bowen and it reminded me that when we last went to London,we were coming out of Fortnums and Masons[we went in to use their toilets LOL]and Laurence held the door open for us to pass through which I thought was nice but then his wife Jackie's PA Donna very rudely pushed straight through Alex,pushing out the way.She seemed to come from behind us.Shook Alex up.
While watching the series,it came across that she was horrible and rude and even Jackie discribed her as never happy.
Over all I enjoyed the series and Laurence and Jackie came across friendly.

Alex has finally started his growth hormones,after I played up at the hospital,the nurse didn't even have his notes flagged up to contact me.I really hope I've made the right decision letting him have them.The nurse managed to make a large hole in the pavement at the top of the drive of the house with her car,the exhaust caught the tarmac.
He is taking 1.4mg and 1.6mg alternate nights.

He is also taking Thalidomide,this has been reduced by his Consultant,50mg every other day.

Alex is still having seizures,we tried to up Zonegran to 100mg but it was too much so at the moment he is taking 75mg night and morning.
Still on Carbamazapine 150mg twice a day,

Yesterday we went to hire his Tuxedo for his Prom on 16 May because we knew it would have to be ordered in,not many stock his size,He is only 4ft 10ins tall.

Beckys just bought a house,so fingers crossed it all goes through and hopefully will be moving in the next few weeks.

Sunday, April 6, 2008 1:31 PM CDT

Sorry it's been so long since I updated.I still have a broken arm,not mending as it should.I'm not in plaster because of my shoulder[it was pushed out of place].

Alex has been really busy.He has been having tests for growth hormones,he does need them and we are waiting to hear from the nurse at the hospital to see what happens next.

Alex had a great birthday,we went to London and had pizza in a lovely Soho restaurant,we also had family meal[on a different day]at a Chinese restaurant.

His seizures have been alot better since he upped his Zonegran medication.

Although we had decided Alex would go to College,after going for his interview,Paul and I decided to look at Saint Benedicts school instead.We found out about it when Alex went to DAB Youth Group.Alex really liked the look of the school and so we applied for him to go there,hopefully he will be able to.He will have to wear 'office wear'eg a suit and tie instead of a uniform because he will be a sixth former.[year 12].

Alex and I went with Paul to Ascot,saw the racecourse, yesterday[he had to go for work],we ended up at Windsor,which was very nice,parked next to the castle.Alex was very tired and slept all the way home[2 1/2 hours].

Everyone else is fine.

Tuesday, February 26, 2008 3:17 AM CST

HAPPY 16TH BIRTHDAY ALEX

Wednesday, January 16, 2008 9:12 AM CST

MRI SCAN RESULT

THE SCAN WAS CLEAR.NO CHANGE FROM PREVIOUS SCAN IN JUNE.NO EVIDENCE OF TUMOUR RECURRENCE.

Wednesday, January 9, 2008 8:08 AM CST

Happy new year.

Alex has been so busy over the holidays

He has been suffering from a cold and sickness bug but decided to carry on 'doing' things.

On Christmas day we went for lunch to Toby Inns[with Sam,Tony and Ned].It was lovely not having to worry about shopping for fresh food for the day[just snack food].
On boxing day we went to the football match and then in the evening attended my neices[Anna]wedding.
Next day we went to York for a couple of days.[Shopping in the sales and sight-seeing]
On Saturday [29th December] RYAN JOE SMITH was born 7lb 9oz.He is Alex's new nephew.He has blonde hair.Proud parents are Becky[my daughter]and Joe.Brother Nathan loves him.
Sunday we went to the football again.
On Monday[New Years Eve]we went to London,stood in Trafalgar Sq at Midnight and watched the fireworks.It was impossible to get on the Embankment with Alex's wheelchair.
Eventually got to the hotel at 3am.
Returned home on Tuesday.

Alex's seizures have been better,the Zonegran does make a difference.

He received his mark on his mock exam for Maths.He was 1 mark of a 'D'.He was pleased with that but wishes he had got that one mark.His predictive grade in Science is 'C'.Not received any mark yet for English but was predicted 'C' before.

My daughter Ssm was taken into hospital with tummy pains,could be appendix yesterday,we are still waiting for news.I saw last night but unable to get there until later tonight because I am still unable to drive because of my arm.

Alex has a MRI Scan tomorrow but as always we will have to wait a couple of weeks for results.

Tuesday, December 25, 2007 12:32 AM CST

MERRY CHRISTMAS

Saturday, December 15, 2007 9:25 AM CST

Just a quick update because I have broken my arm at the top and it has pushed into my shoulder,right through the socket.It is really painful and I'm having difficulty typing.I fell outside in our garden.

Alex is well,still having a few seizures.He has been taking his mock exams at school.Also enjoying shopping for christmas.

We had another death in the family,Pauls grandmother.She had a good life and didn't suffer.

Tuesday, October 30, 2007 4:03 AM CDT

We have been busy again these last few weeks.Alex has found a new youth group to go to through being partially sighted.This is every 4 weeks and it is for young people with disabilities and their siblings.He already attends one from the hospital via Clic-Sargent which he enjoys.We have found that his friends from school have their own things to do after school and he was becoming very isolated.

Alex's bone scan showed that his bone age is equal to his age[15].We have an appt at the hospital with the Endocrinology doctor to check his growth hormone levels and Thyroid. It would be interesting to know if these are right but I don't think I would let him have growth hormones because that has been linked to tumour regrowth in some people.Alex is only 146.5cms tall but I would sooner have him small,healthy and here.

Alex has also been seen by the Neuropsychologist.He had a series of memory tests.It took about 9 hours over 3 days.He quite enjoyed it but I was shattered just watching him.We will get the results later.He does have a problem with processing information[very slow] and has a very bad short
term memory,but he does use information from his long term memory to his advantage.He was very clever before falling ill with his tumour and could soak up information very quickly.Alex tends to put pressure on himself.He loves going to school and doing the work even though I have told him lots of time not to worry and even tried to get him to stay at home if he is tired.Luckily he has someone[adult] with him at school at all times and they keep an eye on him,making sure he gets enough rest and help.

A new shopping centre[Mall] has opened in Derby which has been quite exciting,lots of new shops and food court.Alex loves shopping,even just 'window shopping'.

We have actually finished the garden,it has only taken over 2 years!!!.Can't wait until until next summer so we can use it.

It is Ben's 3rd anniversary of his passing away on 2nd Nov and my nanna's 4th anniversary on 31st Oct.I really don't know where time goes.

Monday, October 8, 2007 1:42 PM CDT

We have been busy the last few weeks,organising Alex's life.

Alex saw a doctor from Great Ormond Street Hospital who is looking after Prof Walkers patients whilst he is in Australia for 3 months.He agreed to carry on with the Thalidomide and ordered a scan for January.Also Alex had a bone x-ray but we will not get the results straight away.

Alex has also seen the Epilepsy doctor who has started him on Zonegran[which I asked for]and to wean him off Epilim.Alex has been well on this up to now.[fingers crossed].At the moment the epilepsy is still uncontrolled.

Alex has also been to Derby college to look round and he liked the look of it.The bit he will attend is a support centre attached to the college which will give him support when he is there.Hopefully he will get one to one support the same as he receives now.He will be able to do his GCSE exams as well as life skills/qualifications.He has been accepted verbally but must attend an interview next March and would be able to start next September[He is in Year 11 now and will leave school next July.]His school has not got a sixth form.Hopefully he will get funding for a taxi to take him there.Talking of Taxi's Alex has just started using one to go to school,it seems really weird not taking him myself.The Teaching Assistant meets the taxi in the carpark and at home time takes him to the taxi[which is funded by the government via school].

On Friday it will be Neds 1st birthday and we are having a party for him.

Tuesday, September 18, 2007 2:34 PM CDT

This is for Catherine Penrose[Alex's consultant on PICU]

DERBY 1 NEWCASTLE 0

By the way Alex is wearing his Derby cap in photo.I need to change his photos to show him in his full kit but having difficulty working out how to shrink the photos to fit.

Alex sends his love xxxx

Tuesday, September 11, 2007 7:51 AM CDT

Alex has been back at school.He has enjoyed it, even stayed for lunch some days.

We enjoyed the classical music concert in the park last week although we got soaked.It was the only night it had rained in the last few weeks.We wanted to go to London[Hyde Park] for last night of the Proms but I was ill so we ended up watching it on TV.I had food poisoning from a restaurant.I was so ill the first night and Alex said 'Welcome to the land of Chemo'It made me realise just what he had been through and I only had it 3 days.

Not much else has happened.Alex has decided to wait until the summer to get 'his head fixed',doesn't want to miss school.

His seizures seem a little better this week but last week we had 4 days of non stop fits,luckily they stopped for starting school.Don't really know why they happened,perhaps he was not quite 100 per cent.

Monday, August 27, 2007 9:52 AM CDT

Five years ago today our lives changed.Alex had a couple of Grand mal seizures and was taken to the childrens hospital in Derby.After they managed to stablise him transfered us to Queens Medical Centre in Nottingham[in middle of the night].All the journeys were made in Ambulances with sirens blaring.I still hate the sound now and feel for the people in them.Next morning Alex was operated on as an emergency.He was kept asleep for 8 days because of bruising to his brain stem.Made all their equipment go 'wappy',he used to take a really deep breath then forget to breath for a while then take another deep breath.He was diagnosed with a GBM.
The good news is that he is still here and enjoying life.We have a 'normal' life[everyone in the same situation understands this new'normal']

Alex has been enjoying the school holidays but can't wait to get back next week.

The neurosurgeon,Michael Vloeburghs,has looked at putting a plate in Alex's head where his skull is missing.We are waiting for a date when Alex can have it done.Alex is still wondering if to wait until he has finished school.

Alex is a survivor.

Saturday, August 4, 2007 3:35 PM CDT

Well we did it again....Derby County beat Nottingham Forest 2-0..It means Derby are the proud owners of The Brian Clough Trophy.
Alex really enjoys going to watch the football matches.

Alex has been busy reading the new Harry Potter book which we queued for in Asda and received at 20 seconds passed the release time.He dressed up as Harry Potter.He has already seen the new movie [on the first day].

Alex went to see the epilepsy doctor and it was decided to try putting his Carbamazepine dose upto 400mg per day[150mg in morning and 100mg at lunch and 150mg at night] whilst reducing his Epilim to 200mg per day[100mg in morning and 100mg at night].Well we tried it for 2 days and we had really awful fits which went on all day.So now I decided to go really slowly and cut the tablets up smaller and take longer to action this change.[I should have known by now that any little thing can upset Alex].

We have an appt with the Genetics Doctor to retake blood regarding Gardners syndrome[the lab messed the last lot up]on Monday.They don't think Alex has it but are just making sure.

Alex had been moaning about the scar on his back hurting him from the cysts and this week we knew why,the dissolvable stitches had not dissolved and had worked their way out of his back protruding from the scar.The nurse removed them along with one under his arm she could see.She also thinks there might be another in his back but we will have to wait for it to work its way out from under the skin.

Friday, July 13, 2007 1:26 AM CDT

MRI SCAN RESULTS

'No tumour recurrence/residuum seen'

It was CLEAR.

Discussed the Thalidomide and doctor decided to reduce to half dosage[now 150 mg]I'm fine with that[he wanted to stop altogether but I'm not ready for that yet.]
Review in 3 months.

Sunday, July 8, 2007 6:04 AM CDT

Alex has been well.He is still having the seizures[got an appt to see doctor about them soon]At school he has been taking his exams[Maths and Science]and doing course work for Maths,English,Science,RE and history.

We have also been on holiday.The weather hasn't been very nice[raining most days]but we enjoyed the time together.

Alex had an operation to remove his cysts again,he is feeling a little sore.

Ned has had another heart scan and he still has the hole but it hasn't got any larger,he will be scanned again ,hopefully before he's one.He is crawling around and almost walking.

Nat's fine,still going to mini-kickers[football].

We all went to Wembley to watch DERBY COUNTY win the play-offs and get PROMOTION TO THE PREMIER LEAGUE.Alex can't wait for the new season to start.

Alex had a MRI Scan last week[28th june]and we are waiting for the results,hopefully get them this Thursday,before going to see the latest Harry Potter film.

Wednesday, May 2, 2007 12:49 AM CDT

I still can't believe how fast time goes.It has been a year since my mum passed away.
I find even now I seem to live from one week to another,if Alex has been well it's great then go on to the next week.
The Youth Group [Clic-Sargent]have invited Alex to join them at the hospital for getogethers,having Pizza and listening to music etc[last month they went ten-pin bowling].This is just what he needs,to socialise with young people who have similar problems.The children are great at school but they have very different lives out of school.

Alex went to see the surgeon regarding his cysts,he will have some more taken out in June.

Ned went for a heart scan[Ned is Bens brother[Alex's nephews]Ben passed away with heart problems]It was found that Ned has a hole in his heart and the hospital will scan again in 2 months,they are hoping it will close on it's own.Most close on their own by 4/5 months but Ned is 6 1/2 months old.

Saturday, March 31, 2007 1:30 PM CDT

Alex is still doing well.He has been practising his singing for a sponsored practise in aid of Clic-Sargent.He and the schoolchoir and band put on an end of term performance of songs from Films and TV.

It is the easter holidays now for 2 weeks.No doubt Alex will be moaning that he hasn't anything to do.He loves going to school.

Becky and Joe have just announced their engagement.Everyone is happy for them.I'd better start losing the weight I've put on recently as they are hoping for a summer wedding next year.

Nathan has started at mini-kickers at Derby County Academy.Ned is coming on a treat,he is such a cutie.

Alex is taking his Thalidomide.Next scan date is June 28th.I don't like waiting this long but can't really argue for one earlier as Alex seems so well except for the seizures which he has had for a long time.Maybe they will get better when he gets the hole in his skull mended.

Wednesday, February 28, 2007 4:42 AM CST

Thankyou for all the cards and presents sent to Alex.He really enjoyed his birthday.It was mine on the 22nd feb and we decided to have joint celebrations.Over a week we went for meals and had a night at Alton Towers Hotel and had a birthday tea-party with Alex's sisters and nephews.

We have eventually got round to getting passports updated and now on a mission to save to go to Disneyland Paris.Alex has been nagging to go for ages.

Alex has been well.His seizures are still happening.
We haven't got anything planned this coming month,just going to take each day as it comes.

Wednesday, January 31, 2007 2:54 PM CST

Since Christmas we have all been very busy.Alex has been going to school and revising for module tests in Science and Maths which he took 2 weeks ago.He is allowed a writer and extra time in the exam.I don't know when we will get the results.Personally I am not bothered what he gets,I am just proud that he wants to and loves doing these things.If it makes him happy then it makes me happy.

We have all been ill again,really get fed up with it.The weather doesn't help,one day it snows and the next it's warm enough to wear just a T-shirt and no jumper.

Because Alex has been tired he has been having seizures most days.They are only small ones but they do leave him more tired.We have to try and regulate his activities which is hard because he wants to try and do everything.

I would just like to clarify that although Alex is not on Chemotherapy he is still on treatment,he takes Thalidomide and still has an open door to his ward[can go in anytime and get treatment if needed].We have to attend and collect his tablets every 4 weeks from his hospital.
A few people have commented that 'life should be back to normal,to how it was before the tumour and that Alex should get on with life and he doesn't need help now he is off chemotherapy' I feel so angry when people say things like that because it just isn't true.Life can never go back to pre tumour.Stresses and strains have altered all our lives.Alex suffers from the effects of tumour and treatment.
He is partially sighted,suffers from short term memory problems,has seizues and uses a wheel-chair for distances.He has to have 24 hour care.The latest scan in Dec 06 was clear,hopefully it will stay like that.
I know we are alot luckier than some people who have taken this journey.

I have just remembered I told him I would include the fact that he has started shaving.He is only 4'10ins and it looks so funny with him using an electric razor trying to look in the bathroom mirror.

It will be Alex's 15th birthday on 26th Feb

Saturday, December 23, 2006 1:24 PM CST

MERRY CHRISTMAS


These past few weeks have been pretty hectic.Alex and I have had the flu.It would have been Bens 3rd birthday on 16th Dec.

Also Alex has been singing with the school choir in Christmas concerts/carol services which take alot of practising for.I have to go with him.

Alex has been busy with his course work for English and Science.

Alex had a MRI scan in early December,we received the results on Thursday,the hospital rang me.IT WAS CLEAR.

Tuesday, November 14, 2006 2:03 PM CST

It's taken me a long time to update because I have been quite upset this month.It has been the anniversary of Bens' death and also my nannas'.I am also struggling with my mums passing away still.I don't want to keep feeling like this,I know I should be happy that Alex is doing so well.

Alex is still suffering from seizures,we have had to reduce the Epilim down again to 300mg,twice a day.
Alex is in the middle of doing 'work experience'two afternoons per week at his old primary school until Christmas.

Ned has had all the tests regarding his heart,head etc and all are fine.He now weighs 9lb 3oz.

Sunday, October 15, 2006 12:07 AM CDT

Alex has been well over all but suffered with a cold for a week which had the knock-on effect making his seizures worse.He is better now.

Sammie and Tony had a little boy on 12 Oct 06 at 12.02PM.
Ned James Brown
weighing in at 6lbs 13oz.

It was a very mixed day for all of us,really happy for Ned but sad for Ben[Sams son who passed away].
Alex looked so proud holding his new nephew.

Thursday, September 21, 2006 3:50 AM CDT

Just a quick update as I'm feeling a little tired and achey[forgot my sleeping tablets last night and spent an hour talking to Alex in middle of night,I disturbed him as I have to sleep in same room as him because of his condition.]

Alex has been featured in two local papers because he won The Princess Diana Award.He had his photo taken with his year of head,Helen Redhead,in his wheelchair outside his school,which he attends part-time,but the paper wrongly stated it was me with him.Alex says that when he sees Mrs Redhead today he'll say 'Hello mum'.

Monday, September 18, 2006 1:01 PM CDT

Sorry for not updating sooner.

We have been on holiday to Scotland[to the Malcolm Sargents house]again.We all had a really good time.Visited the Glasgow Science musuem and couldn't drag Alex away.Everyone at the house was fantastic as usual and we all came back alot heavier[all the lovely meals].Paul and I celebrated our Silver Wedding[25 years]whilst we were there and the staff presented us with a cake,along with balloons etc.It was lovely.

Alex started back at school,he has enjoyed being back.

Nathan made us all laugh by asking Alex about his noras[this is what he calls Alex's auras],so now thats what we all say.Nathan started school,he loves it but all we can get out of him when we ask him what he's done is 'I love playing football,we only play football'.

Alex is really well in himself.

Saturday, August 26, 2006 3:28 PM CDT

Good News.
Alex had a MRI scan on 14th Aug[whole brain and spine].We do not normally get his results for 3 weeks but had booked in to see his consultant[Prof Walker]on 31st Aug.This morning we received a letter which was very much appreciated from the Prof to say he was very delighted to say that the recent scan showed no change from the previous one and there continues to be no evidence of tumour,which is excellant news.It is unusual to receive these types of letters and I took to mean he was extremely pleased and wanted to let me know as soon as possible.

I am so pleased he did as it was coming upto the 4th anniversary of Alex being ill[27th Aug].

I have been very stressed this month as well because Samantha,our daughter[Alex's sister] got married yesterday,Friday 25th Aug.It was a fantastic day.She married Tony[thought I'd better put him in some where],he has made her so happy.I was still getting her dress altered the day before and changing suits for the lads,they never stop growing.Alex and Nathan were Page boys[I know Alex is a little old but he looked after Nathan and they looked so sweet in the Prince Edward suits.Alex didn't even wear his cap,[his choice.].Becky[Alex's other sister] and Samantha[Tonys sister] were bridesmaids.Alex was extremely well all day,dancing with his friend Emily,he also wrote a poem for Sam and read it out at the speeches.He did give us a slightly worrying time whilst we were getting changed at the hotel,he fell down the step from the bathroom luckily it only seemed to shake him up and after a 10 mins lie down was raring to go again.
We all remembered absent family and friends in Heaven especially Benjamin,my mum amd Tonys mum.

I will now go and eat some more of the lovely wedding cake,it is gorgeous.....

Sunday, August 13, 2006 2:52 PM CDT

Alex is still quite well.The seizures are still occuring and he is still suffering with wind.
We have spent the holidays just 'chilling' really,going to the park etc.Also getting ready for Sam's wedding[buying outfits,shoes.]

Alex's story has been put on www.virtualtrials.com
click on survivor stories.

Friday, July 21, 2006 3:25 PM CDT

Hi everyone

Thought I'd better update.Alex is well although still suffering from Auras etc.

I 'm feeling a little unsettled today,it would have been my mum's[Ann] birthday.She would have been 64.I spent it with my dad[Ray] and my sisters[Alison and Paula].It seemed really surreal.

On a lighter and more delightful note Alex was awarded the Diana,Princess of Wales Memorial Award for 'who have succeeded against the odds'.

Alex has now finished school for the summer holidays and it has been really hot,hopefully it will last.I can't believe he has finished year 9 and will be returning as a year ten student in September.I remember starting year seven and thinking this might be the last year.I know the school didn't really expect Alex to complete the year and now are astounded that he is selecting his options.He will be taking double English,double science,Maths,RE,PE,PSE,history,plus life skills,typing and singing lessons.

Tuesday, July 4, 2006 1:52 PM CDT

Alex is very well.His seizures are not as bad as before.Also since upping his ranitidine to 75mg twice a day,his wind problems are abit better.I am in the process of weaning him off the Kytril[anti-sickness] one less medicine to take.He is on 200mg of Carbamazapine retard twice a day with Frisium when needed,perhaps every 4-5 days.
He is also taking Thalidomide.
The BBC contacted me to do a story about Alex which is on their web site.
www.bbc.co.uk/health
under Thalidomide.
'Thalidomide took away my son's tumour'
I tried to get more detail about Temozolomide in the story.
I know he isn't cured but it's a start.

We have been to Scotland to the Malcolm Sargent House again.It is such a lovely place,right on the sea front.The staff are brilliant.The weather was sunny.

Alex performed his singing at school,he has been doing a sponsored practice-athon through school in aid of Clic-Sargent who own the Malcolm Sargent house.He is now thinking of what to do next,he wants to raise some money to send to a charity in memory of Thomas who lets us go to Bournemouth.

He has been taking part in disabled althetics and received a medal for this.

Friday, June 16, 2006 2:58 PM CDT

Since my last update we have been on holiday.Alex has enjoyed being on the beach and doing normal holiday things.He has been a little down and very tired.He thinks it is odd he isn't on chemo and is worrying about the tumour coming back[partly because of my mum passing away].Mind you I'm very nervous as well.

He is still on Thalidomide and he is also getting lots of auras and quite a few seizures,it could be stress or it could be because Alex has put on weight.

Friday, May 12, 2006 3:02 PM CDT

We received the results of Alex's MRI scan yesterday.His scan was clear.The tumour has gone.We have all made the decision to stop chemo[Temozolomide]and scan again in August.No-one knows if this is the right decision as Alex's consultant has never reached this stage before and doesn't have any more information than me.A GBM is very aggressive tumour and may come back before then but we have to take the risk as Alex can not be on chemo for ever.

We are happy that we have this result but very sad that it wasn't the same result for my mum.My dad cried with happiness for Alex.


Alex's seizures are worse at the moment but we are hoping they are just due to the stress about my mum.

Please say a prayer for another one of our caringbridge families who lost their son James this week.He was the same age as Alex.

Wednesday, May 3, 2006 3:06 PM CDT

Just a quick update.

Alex is fine health-wise.No results yet regarding MRI.

My mum Ann passed away yesterday[May 2nd],she was suffering from lung cancer.she was not in any pain and was talking to us[me, my dad[Ray],Paula and Alison[my sisters] till a few minutes before passing away peacefully.My mum was only 63.It is so unfair.I can't believe our family has had so much illness.

I will update in detail about Alex soon

Friday, April 7, 2006 3:32 PM CDT

Alex sang lovely at his concert,in fact everyone did,they sang 5 songs from around the world,Alex did his solo.He is the only boy in the choir.The band were really good as well.

On Wednesday Alex went into hospital at 7.30am for his operation to take out 6 cysts[lumps] out of his head,neck and back,they have been sent off for analyst but they do not think they are anything to worry about.He was down in surgery for nearly 2 hours altogether.He was sick a little when he was bought upto the ward but soon recovered and we 'escaped' home late afternoon.He is very well and moaning I will not let him go to school[he still has blood showing under the see through plastic dressings and can not take them off for at least 5 days].The school will be closed for the Easter holidays for 2 weeks starting on Monday.

Still taking Temozolomide every other week at the moment,I want to carry on but I know the consultant will probably want to stop soon.Alex has a MRI scan on Thursday 13 April,the hospital rang me on Wednesday evening to arrange it[bit worrying that they rang out of the blue after the scan has been ordered since December].We will not get the results for about 3 weeks.

Friday, March 31, 2006 11:49 AM CST

Alex has been well overall the last few weeks,although his neutrofils dropped to just over 1.0.He has some more cysts which have become infected so he is on antibiotics and will have them all taken out on Wednesday.

On Tuesday evening he will be performing at his school concert singing songs from around the world and hopefully singing a solo.

We have been very busy,we visited London and did 'the tourist thing'.Also Nathan was on the pitch at Derby County.

Alex received his results in science practice SATS,he got Level 4 for the first one because he wasn't quick enough writing the answers but he received Level 6 on the second one with an adult writing the answers that Alex related to them word for word.So the school are looking to get a writer for all Alex's exams.The average level for his year is Level 4 to level 5 so he hasn't lost his ability to retain information ,it seems to by pass his short term memory and go straight into his long term memory.I am just pleased he is enjoying himself,to be honest if I'd had the chance not to go to school when I was younger I wouldn't have gone but Alex loves it and moans if he is not allowed to go or if I fancy a day out with him.

Sunday, March 12, 2006 1:54 PM CST

Alex has had a really good week.He has been to school everyday except Tuesday afternoon.He has been doing his SATS tests.He puts loads of detail in his answers but is very slow at writing so the school are looking at whether he will be able to have a writer instead of writing it all himself.

Yesterday he went on the pitch again at Derby County with Rammie[mascot]this time before the match,he managed to run around and kick the football for about 10 mins then had photos taken with the Derby players.Derby won 3 goals to nil against Burnley.Nathan enjoyed watching what to do,it's his turn next time.

Nathan has been ill yet again this week.So has my mum[she is suffering from lung cancer and spent 2 days in hospital].
I'm starting to feel really at home in all the different hospitals.LOL

Plans for Sammies wedding are coming along nicely.going to get the bridesmaids dresses this week[already know which ones].

Alex has started singing lessons.He had them before he was ill when he was about 9 years old.Hopefully having a lot deeper voice now will not hinder him.

I will update the photos as soon as I work out how to shrink them to a smaller size[had no problems with old computer but can not seem to find the correct program on this one.]

Sunday, March 5, 2006 6:43 AM CST

Alex had a lovely birthday,we went out for a Chinese meal.He took his friend Emily.It was my birthday the previous Wednesday and we all had a little tea-party with Nathan.

Alex has been well.He has been able to have his chemo again[after having 3 blood tests,1st one clotted,then 2nd one leaked].

Busy revising for his mock Sats,got them over the next two weeks.Alex has trouble with his short term memory so he has to go over everything more than once.

Sunday, February 26, 2006 2:10 AM CST

SUNDAY 26TH FEBRUARY


HAPPY 14TH BIRTHDAY ALEX

Monday, February 20, 2006 10:55 AM CST

Been a bit of a mixed week again.Alex has been well for some days and ill again for others.I am hoping it is the virus not tumour.There are alot of other people with the same symptoms but it does worry me.When he is ill it makes his seizures worse.

He went to school on Valentines day,gave a card and rose to a girl in his class and received a rose but not from the same girl.[school were selling roses].

Alex had his eyes tested and will have to wear glasses for reading and watching TV.His fields test was exactly the same as last year.[he hasn't lost anymore of his peripheral vision].

Went to the hospital on Thursday for a blood test[finger prick] and the nurse dropped it after we had gone and it clotted,so Alex had to go back again on Saturday[we didn't get chance on Friday,we were in Birmingham looking at wedding and bridesmaid dresses].His blood results were ok for chemo.HB 13.9 WBC 4.3 NEUT 2.67 PLAT 282 .

Alex has also been looking for birthday presents.My birthday is on Wed 22nd and Alex's birthday is on Sunday 26th Feb.He will be 14 years old.

Friday, February 10, 2006 7:59 AM CST

Alex started off ok last week,managed to go to school and then on Monday he felt really tired in the morning,we had been to Evie's christening on Sunday so I didn't really think much of it.Alex decided to go to school in the afternoon but during science[in which the class were doing an experiment about smoke-so smelt horrible]Alex was sick all over the desk.All his class were great and were worried about him.He has been off school since with a cold and cough as well as an upset tummy.Apparently there are two virus going around the whole of the midlands,where we live,some schools have been shut down so many people are off.In Alex's school there are 7 members of staff off and lots of students.

Sammie became engaged to be married on Saturday to Tony.I'm glad she is finally sorting her life out and hope she will be happy.Since then they have booked the wedding on 25th August 06.

Alex caught me thinking about things and he said "You shouldn't think it's dangerous when you do"

Thursday, February 2, 2006 12:16 AM CST

Spoke too soon Alex woke up at 5am the day after the last journal with seizures every 30 minutes for two days.I think it was because he had another tummy bug and his meds just went straight through him.He is fine now,back to normal but it was quite worrying.

Alex received his school report and it was excellent.

We have just come back from the hospital after having a blood test.His blood is fine HB 14.3 WBC 6.4 NEUT 2.29 PLATELETS 214,so he can have his chemo[TMZ]tomorrow.

I still haven't got a date for the scan,I'm torn between making a noise about it or keeping quiet and just waitng for the date because it is the scan to decide whether to come off chemo or not.

Tuesday, January 24, 2006 3:19 PM CST

Alex has been well again this week.He attended school everytime he should have.This did make him a little tired at the weekend so we had a lazy two days,watching films.

Alexs seizures seem to be under control,he is having about 4 small auras a day,best it has been for quite a while.

Alexs' blood was fine for chemo so started TMZ on Friday.

Still no date for scan!!!![daycare said they are on the case.]

Tuesday, January 17, 2006 2:08 PM CST

Alex is really well this week.He is going to school everyday.

On Wednesday he went to see the eye specialist who is arranging a field test at yet another hospital[I don't know why the apparatus isn't at that hospital].

On Friday Alex went to the dentist and had two baby teeth out which were growing under his adult teeth.At lunch only wanted soup[which I expected] but at tea Alex had a plateful of chinese sweet and sour chicken and rice[I didn't expect that].Nothing seems to put him off his food.He now weighs 7st 5lbs.

On Saturday we went to see Derby v Crewe at football.It was an exciting game and Derby won 5-1.

Still waiting for scan date!!!!!

Alex is at the hospital[QMC]on Thurs for a blood test to see if he is ok for chemo[TMZ]on Friday.Still on 7 days on then 7 days off.

Tuesday, January 10, 2006 2:44 PM CST

Alex has been well this week except for the occasional headache.He got sent home from school on Friday afternoon with one.His seizures became worse for a few days and he became quite 'dippy'.Thats what I've started to call him LOL.[That was due to changing the amount of seizure tablets,so back to giving him 150mg carbamazapine retard at night and the same in the morning,roughly because I have to cut a 200mg tablet up into 4,the smallest tablet they do.I have asked to go back on normal carbs but not got very far at the minute,will try again soon.]Still waiting for the date of the MRI scan[Alex's daycare nurses and doctor[not Prof Walker,just the others] are a bit forgetful since Hazel left to have her baby[if you reading this Hazel hurry up and come back please].They have also forgotten this last 2 months to order tablets,ring Thalidomide survey line on time and even forgot Alex had to have a blood test.Hazel never forgot.

Alex's consultant was on TV last night taking about teenage cancer wards,he said it was a good idea for the teenages to be seperate from the younger children but it costs too much money within the NHS and can only be done by people raising money for this.The Prof has raised lots of money for childrens cancer causes.Neil Sharples a teenage lad from QMC was also very brave to go on the same program explaining his fight with cancer.

Alex has got an appointment with the eye specialist tomorrow in Derby[we were supposed to see the one in Nottingham but they messed up at that clinic and forget to let us know when the appt was.]All these clinics and appts certainly keep us on our toes.

My mum finishes her radiotherapy tomorrow and her doctor is pleased with her progress,she will wait 2 months and scan again.She is doing really well.

Wednesday, January 4, 2006 3:23 PM CST

Alex had us really worried over christmas.He started with headaches every day,woke up with them,had a red ear and said it felt like something was in his right eye.We spent time at the hospital getting him checked out,had blood tests for infection which didn't show anything.Another cyst has appeared ,this time on his left arm.The headaches lasted for 2 weeks.Two days ago his dad started with the same symptoms and his sister has been suffering as well.Now we realise it must have been a virus but it was very frightening.

Apart from this we had a good xmas.Alex continues to eat really well and has put weight on[so have I].

He went back to school today,he couldn't wait.

Tuesday, December 20, 2005 4:05 PM CST

Just a quick update.Alex has had the 'usual bug' it seems to keep going round between Alex,Paul,Sam,Becky and Nathan.
Alex's seizures were worse for a while but I think his dosage of meds was too high[hopefully sorted this time].
He has been to school this week,missed last,he wrote a poem for his English teacher who was retiring and had to read it out in front of the whole school,it has been framed and he presented it to her this morning at the Christmas assembly.In the afternoon we went and watched the staff talent show.It's only a smallish school but alot of the teachers can sing and play instruments.

Alex's friend Joanna[Jo]passed away recently and I daren't tell him.She was a lovely sweet girl who always had a smile for everyone.

It's been really hard to get into the spirit of Christmas maybe because we missed the church service or haven't really been shopping with Alex being ill.We will try and make up for it these last few days.

Saturday, November 26, 2005 8:37 AM CST

Alex's cold is better but his seizures are still the same,having at least 10 per day sometimes 30.We saw the epilespy doctor who is now going to try dropping Lamictal and upping Carbamazapine again[round and round we go].

Been to see new Harry Potter film on the first day of release.

Alex still on chemo every other week.

I really hate this GBM brain tumour.I feel so sad that in the last month 8 people,both off the groups I belong to and within our village with the same type of tumour have passed away.

Wednesday, November 16, 2005 7:03 AM CST

Alex is fine except for yet another cold which unfortuantly passed to Nathan,so they are both off school this week.Both were fine before.

We have all been busy yet again,this time moving Sammie out of her house.Alex has been going to school everyday except this week.Alex also had his connexions meeting last week[I think it was a bit early to decide what he wants to do when he leaves school,doesn't leave until 16 years old and only 13 now.].We have yet another meeting at school regarding his progress tomorrow.

We were very lucky to be invited with 2 other children suffering with a brain-tumour to meet Mike Tyson yesterday.He was really lovely and great with the all the children[6 in all].Mike had photos taken and then sat down and had a tea-party with them.[making them all laugh because he ordered milk with his cookies and calling crisps potato chips.].He spent about 1 hour with all of us.There was an auction later in the evening which we didn't attend and some of the proceeds went to Brain Tumour Research at Nottingham University.They had organised for us to meet Mike.It was a fantastic evening,Alex enjoyed it.He even managed to get an autograph for his friend.I just hope no-one catches his cold.I will put some photos on when I get chance.

Saturday, October 29, 2005 4:18 AM CDT

Another two weeks have passed so quickly again.The first week we went on holiday to New Milton near Bournmouth.It was through the Thomas Ball Charity in memory of Thomas.It was a lovely place.We didn't know we were going until last minute.Becky,Sam,Nathan and Alex all enjoyed their time there.There was everything you could possibly need there,the lodge catered for any child who is ill.Alex did alot of walking especially round Stonehenge.The down side was Alex was having quite alot of seizures,not really deep ones luckily.He started eating heartily again.Nathan has just started to realise whats going on abit more and has been saying he feels 'funny' and copying Alex having a fit.Alex is his hero.I had to explain to him it wasn't very nice to copy Alex on this occasion.
Paul and I enjoyed the holiday as well,it had the added distraction from waiting for Alex's MRI results.I was so nervous this time.I hate having to wait for weeks to find out.

MRI RESULT
Good.The consultant overall was pleased with the result,the cavitity is filled with fluid not tumour.The only thing was Alex had a slight bleed in centre of head showing,they think it must be due to radiotherapy weakening the vessels[it can happen a long time after radiotherapy].We are carrying on the chemo[TMZ] and Thalidomide as normal and scanning again in January.

Since our return Alex's seizures have reduced to the odd absence each day.He has now come off Frisium.At the moment he is on 35mg Lamictal at night and 100mg Carbamazapine and 30mg Lamictal plus 100mg Carb in the morning.He had suffered a temperature for a few days and his bump has been up[he has a hole in his skull from original op,this fills with fluid].Alex is unable to have his chemo this week because his neutrofils are down to 0.9.He will have another blood test on Thursday,hopefully he will give more than last week,could only get minimum amount even after three attempts.His platelets are 208.

Alex,Becky,Nathan and Paul went to see Wallace and Gromit at the cinema.It has been half-term from school this week.

It will be a year on 2 November since Benjamin passed away.I can't believe it has gone so fast.

Saturday, October 15, 2005 5:23 AM CDT

Another busy time,where does time go?

Alex overall has been well but has suffered all yesterday with largish seizures[not limb-shaking but jaw chopping and sickness and his eyes really wide,staring].He has one this morning.Not sure if a bug again or if it is connected to strobe lighting,he went to the theatre on Thursday evening to see Macbeth,he was fine during the performance except for a couple of slight 'feeling funnys'[which have been happening[slight auras].
I hope it is nothing serious,we do not get the results of the MRI for another two weeks.

Alex has had alot of stressful days recently.We had a falling out with school because his Art teacher who happens to be his form tutor and should know better told Alex off for not doing his homework,he said being tired and forgetting to do it was not an excuse.[Alex is actually excused homework and doesn't even has to attend lessons if he is too tired,he could if he wanted have a home tutor but he likes going to school].The school at this point said they would treat Alex has normal,Alex will never be 'normal'Apart from the brain tumour he takes lots of medication which also muddles his brain.It seems the problems have only surfaced this year they had forgotten how ill he is.Anyway we send a detailed letter explaining yet again about Alex's condition and have had a reply detailing a hand out for all staff explaining how to treat Alex.So he will return to school on Monday.

Alex has had his school photo taken,the photographer showed me the image ,she managed to take it without his cap and at an angle with doesn't show his hair missing.Can't wait to receive the actual photo,Alex loves having his photo taken.

Alex and his friends in pop-choir sang at an open evening for school and at their autumn fair.

We went for a meeting at the hospital with the epilespy doctor,we are putting his Lamictal up slowly and maybe look at the frisium if get more control over seizures.We were seen by the original doctor who treated us in Derby when Alex was first rushed to A&E.She has moved to Nottingham QMC.She had been following Alex over the last 3 years.

We have also been to see the surgeon with regards putting a plate in Alex's head,it is a possibility down the line but not at the moment.I'm not worried about it,maybe we might cause more problems.Alex has never had to have a shunt whilst his skull had a hole.The surgeon will review next year.

Alex has surprised us yet again with his blood results,we were all worried because his platelets have been low and they have come up.HB 14.3 WBC 3.7 Neut 1.79 PLATELETS 200

Sunday, October 2, 2005 4:35 PM CDT

Alex has been really really really well!!!!!

He has been having only 1 or 2 'feeling funnys'[auras]a day.He started Chemo again on Friday.I have been abit worried because his platelets were 119,I wondered if his new seizure meds [lamictal]were making his platelets low because when he was on Phenytoin that made his platelets low.

Since Alex has come off Topamax,he has been 'the old nice Alex'When he was on it he was short tempered and not really Alex.

Alex has been to school,he has been singing in the pop choir.He has made spaghetti bolognase in cooking it was lovely.He made me laugh because he walked down the path from school pushing his wheelchair with his bag on his back,instead of being in his chair with his bag on the back of it.He never ceases to amaze me.

When we went to the hospital on Thurs the BBC were filming for a program called Inside Out about teenage cancer wards[the ward Alex goes in has an age range from babies to 19 years]Not sure if Alex is on film but I think Jo,Alex's friend is.Alex and Jo have been friends since they were both diagnosed.Jo is a very brave young girl.She and Alex are the same age.

Alex has a MRI on Thurs at 9am so we have to be at the hospital at 8am[a very early start]

Sunday, October 2, 2005 4:34 PM CDT

Saturday, September 24, 2005 7:55 AM CDT

Alex started school ok,he has done really well except he got a bug on Friday that resulted in him being sick so unable to go to school that day.He was disappointed because he was supposed to be making sweet and sour turkey in cooking.He caught the bug off Nathan and Becky again,they always seem to have something.I sometimes wonder if there is something wrong with Nathans blood,maybe his WBC are high enough to combat bugs.

He still is having problems with seizures[auras].He is experiencing at least one every 30 minutes,and whilst he has been ill sometimes having upto 7 in 30 minutes.Most only last a few seconds.

I forgot to mention my neice Kirsten has had a little baby girl called Evie May.She is lovely.She weighed 5lb 13oz.

Alex has had chemo again this week,it doesn't really affect him whilst he is on a low dose.

At the moment he is playing on his Sponge Bob TV game which he enjoys.

I have had a lot of problems with my Yahoo groups e-mail lists,sometimes I can't read them and I have problems with replies bouncing.I know there is a problem with Aol and I also have a problem with BT line which is situated outside my house.Anyone is welcome to pass Alex's website address on to others,especially new patients.

Sunday, September 18, 2005 3:23 PM CDT

Where do I begin,we have done so much since I last updated.

Alex has been really well,he has had Emily round to his house and been back to Emilys[a friend from school].We have been going to see Derby County,even though sometimes Alex forgets which way they are kicking when he has an aura[seizure].
Nathan had a birthday tea party,he was 4.
We all went to Birmingham bullring shopping,I could spend all my time there.
Alex,Paul,Sam and I went to Darley Park classical concert.It was really warm and the fireworks at the end were great.Alex loves classical music.
Alex went back to school for 1 day before we went to Malcolm Sargent House at Prestwick Scotland.We all really enjoyed our time there.Alex always seems so different there,confident and eats everything that is dished up.He went swimming,riding bikes,playing crazy golf,playing table tennis,pool,air hockey,bowling, shopping in Glasgow.The staff are fantastic and we all came back refreshed.Alex also sang for them again,he really loves that.It is so nice to see Alex doing normal things that other children take for granted.

Alex is still having trouble with his seizures and we are still playing around with meds[he is on 4 at the moment].

We have had a meeting with Prof Walker and he is very pleased with Alex.We are looking into having some sort of plate put in Alexs head,at the moment he has a quite a large hole in his skull from the original surgery.Also Alex has some cysts on his head and body that need taking out.He has also been referred to the eye specialist.
Prof Walker said he will consider discontinuing the Temozolomide in the new year,Alex will have been on it 3 years then,but he has not made up his mind,there is no data for or against staying on or coming off.I don't know either.
Alex has got a MRI scan booked next month maybe that will give us some ideas.

Alex is back to school tomorrow

Sunday, August 21, 2005 2:26 PM CDT

Alex is fine,still having auras.We saw Dr chow last week and she has started him on Lamictal[Lamotrigine] 10mg twice a day.He is on Carbazepine retard[tegretol]100mg twice a day,Frisium[clobazam]2.5mg at night and 5mg in the morning,we are reducing Topamax[Topiramate] from 150mg twice a day slowly over a few weeks and going to start increasing Lamictal.We had a couple of bad days and 1 really bad night with long auras since he has been on 4 meds.He says he feels sick and starts heaving but luckily not been sick.

We have been busy going to hospital appts[blood tests etc] and even managed a day out with When you wish upon a star,they invited us to a fund raiser with Asda at an aerodrome where we got to go in sports cars around the race track averaging 125 miles per hour.We were treated to air shows and even got to sit in a barracuda RAF plane.We met Jeremy Spake[from Airport TV series]he was very nice and brillant with the children.Nathan came with us and really enjoyed the quad bikes.Alex prefered the football shooting[after the cars of course]

My mum has been having a rough time but Alex has been to tell her that you have to be strong and she will be ok.

Wednesday, August 10, 2005 4:23 PM CDT

Alex is well.Still unable to stop auras,now on 150mg Topamax,100mg Carbamazapine and 5mg Frizium morning and night.Appointment next week with Dr Chow.
Alex had to take anti-viral tablets because Nathan had Chicken Pox,luckily no-one else caught them.
Alex is also having anti-biotics to try and get rid of three spots which have developed[on his head,back and neck].

We went to Mablethorpe to Bens Den and really enjoyed it,the weather was fine.Nathan and Alex spent time digging in the sand and eating loads of fish and chips.

My mum[Alex's nan]has just been diagnosed with lung cancer[grade 4]I can't believe something else has happened to our family.She starts chemo tomorrow.We are all remaining positive.

Sunday, July 24, 2005 3:46 PM CDT

Just a quick update.
Alex is fine,been having a few problems with auras but nothing serious.
We have been off line for a while due to having builders and decorators in the house from the previous flood.Alex and I have been staying at Sammies.
Alex and I are going on holiday tomorrow,Paul's had to stay at home to sort the rest of the house out.
Will update in more detail at later date

Wednesday, June 22, 2005 6:04 PM CDT

We have been really busy recently.Alex very well.

Went to Center Parcs for a holiday,managed to stay this time!!!!.Great.Alex did loads of activities,pool,archery,cycling,swimming[in a fashion],crazy golf.The weather was great.Nathan,Becky and Sam came with us.[Paul,Alex's dad, got the short straw of sharing a room with Nathan,so was woken up at dawn every morning].

We had to go and stay with Sam when we got back,the plasterers came to replace the ceiling,we are still sorting the damage from the big leak we had at easter.

Alex still having the auras,not sure if they are getting better or not.Still dropping carbamazapine.He is also suffering from hayfever.

Had a meeting at school regarding funding,don't know result yet.

Sorry if I haven't replied to e-mails,I have been struggling to cope recently and have had problems,sometimes I find I just can't go on the internet and all I want to do is be with Alex.

Thursday, June 2, 2005 7:01 PM CDT

Alex received his MRI results today.It was 'NO CHANGE' I'm OK with that.At least it isn't increasing.Still don't know whats tumour or scarring,no one knows.
Alex is doing very well.Staying on Chemo[Temodal] and Thalidomide and he will have another scan in 4 1/2 months.His consultant is very pleased.[when he wrote the form out for next scan he put previous GBM].

Sunday, May 29, 2005 1:22 PM CDT

Alex has been very well again this week,upped his Topamax[Topiramate]to 100mg in the morming.He isn't having so many auras.It makes him a little weepy.Hopefully when we drop the carbs that will go away[he is 3 meds at the moment for seizures.]
His blood count was fine for chemo again this week.

On Friday we took Becky and Nathan to Stockport for Chris's[Nathans dad]funeral.It has been a while since his death and the family were eventually given permission to hold his funeral.The song,Gangsters Paradise was played and his sister recorded a song to be played in the service.

Thursday, May 19, 2005 5:38 PM CDT

Alex has been very busy,he has been going to school most days,still part-time hours.He has stayed at school for two lunch times,he really enjoyed that.His eco's were with him and they all ended up playing football on the school field with Alex and his friends.The headmaster even came and sat with him and had a chat whilst he was eating.I worried all the time but he was fine.The school have discussed trying to get an electric wheelchair for Alex to use,he gets tired and the school is over a large area and the children have to use outside paths to get around.I think the eco's have trouble pushing him now he has put weight on.Made trifle in cookery.

Alex had his MRI Scan last week,not had the results yet,will be another two weeks.Apparently the machines are MRS scanners.The headphones were not working properly so Alex couldn't have music piped through,he didn't seem to like it as much,normally sails through the scans.

He has just completed another week of chemo.Still having auras but not as many as before.

Alex won a bravery competion through our local paper to go and watch Derby County play in the 'play-offs'against Preston.He was featured in the paper and his photo was printed.He also went on the pitch at half-time and took penalties against Rammie[club mascot].He scored one out of three,not bad,he was extremely tired.He normally goes to bed at 8.30 pm and he was on the pitch at that time.Pity Derby didn't get through to the final.

Saturday, May 7, 2005 10:17 AM CDT

Alex has been great this week,he managed to go to school.He has had an improvement in his auras since taking the new anti-seizure med.I have noticed he doesn't eat as much,I know that is a side-effect.I'll keep an eye on that,although I won't worry too much,he has a lot of excess weight for his height.[weighes 7st 6lb and is 4'6" tall.].

He took part in a fund raiser for CLIC-Sargeant Charity at school.He had to take 5 penalties[football]and he scored 2,not bad when some of his mates didn't score at all.

Last week his friend gave him some beanies she bought from Florida.He thought that was really cool.She is actually a friend whom we met at a local slimming club and she has had treatment in the past,Alex says she is like a granny and also she understands how he feels.If Alex has a choice of talking to adults or children he will always choose adults.

Alex has got a MRI scan on Thurs 12th May,then an appt with his doctor,but we will not get the results for 2-3 weeks.He will have to have a canula inserted into his hand this time to put the contrast through,now his hickman line has been removed.

Wednesday, April 27, 2005 10:21 AM CDT

Well we are back at home,waiting for the building work to start,most was covered by insurance but not all.

Alex has been suffering from a cold but ok now,bit of a squeaky voice.Have carried on having Temodal[chemo]every other week.His blood work is ok,neutrofils a little lower than normal.

Alex had a test in Science and he got a really good mark...level 5/6,above average.
Alex has made Victoria Sandwich and Bakewell pudding at school.They have been really lovely,couldn't stick to my diet.

Alex has had a lot a auras just recently.We went to see Epilepsy doctor and started on Topiramate 50mg increasing to 100mg twice a day.Then hopefully reducing Carbamazapine.

On a sad note Nathan[Alex's nephew]who is 3 years old lost his dad,Chris,he was only 19 years old.Such a young age.I feel so upset that Nathan has had so much sadness in his life[Uncle Alex being ill,Cousin Ben and dad Chris dying].He is such a lovely little boy and I feel guilty I can't change anything.

Wednesday, April 6, 2005 9:39 AM CDT

Alex,his dad and myself have been to Malcolm Sargents House in Prestwick Scotland.Alex said it was wicked.He was singing again.We went to castles,lochs and seaside locations.The house is fantastic,everything you can possibly think of is made available to the families.Alex came on in leaps and bounds again,playing football,riding bikes,playing table tennis and pool.He met lots of new friends.Of course he gets tired and has to have plenty of rests.

Alex started chemo on Saturday,a day late because we had been away.

We arrived back home to a water leak from our attic,flooding upstairs and into our lounge downstairs,destroying our carpets and ceilings.
Oh well we should be used to bad luck by now!!!

Alex and I have gone to stay at his sisters house,we have left his dad to sort the mess out!!Not on internet but will check when I can.

Wednesday, March 23, 2005 0:52 AM CST

Alex has been ill with a cold this last week,only managed to go to school Mon and Tues last week.Restarted school this Mon afternoon.He has been very tired,but we have managed to fit quite a few fun things in.
Went to Bull Ring shopping centre and had a meal at the noodle bar at Selfridges,Alex really enjoyed that.Sushi next time.
Nathan came to stay for his first sleepover since Alex has been ill.
Alex was invited as a guest to a service at a different church from ours on Sunday which we both enjoyed.
School holidays start on Thursday.Looking forward to doing lots of things over the next 2 weeks.

Monday, March 14, 2005 3:13 PM CST

Alex went back to school today.He is feeling a little better.His sister [Sam] has caught his sickness bug.He is not really having seizures as such,more like auras.

We received the results of the MRI scan.There has been a slight improvement since Nov 04.

Going to carry on the treatment the same as before.The doctor said Alex's liver enzyme count was ok.

Alex had a massage at the hospital on Thurs.Also he helped the teachers at the hospital school make cakes to sell for red nose day[comic relief].

Alex has received his new wheelchair,it is slightly larger than the last one.It is easier to push.

Monday, March 7, 2005 3:20 PM CST

Update continued from earlier.

Sat 26th Feb--- ALEX'S 13TH BIRTHDAY.
Alex was in hospital,he really enjoyed his birthday,luckily we had taken some of his friends out for a pizza last week,and he has still got an outing with another friend to come.He received presents from the nurses and they sang to him.His sisters and nephew visited him.Alex gave pieces of cake[with his picture on] to everyone on the ward[and nurses].He wore his Derby County football shirt because they were playing against Nottingham Forest,the match was a draw 2-2.Alex's nurse Ryan was working and he supports Forest.Another lad Rhys on the ward supported Derby as well wearing his shirt.
Sun---Alex very well,managed to escape for a while to the shops,Alex wants a fish tank with his birthday money.
Mon---Discharged from hospital in the afternoon.By the evening Alex feeling ill,he was sick at night.
Tues---Alex was sick today,felt funny all day.
Wed---Alex not sick today but felt it.
Thurs---Paul[Alex's dad]very sick today,must be a bug.Alex and I went to the hospital for a blood test.HB 15.5 Platelets 187 WBC 6.2 Neut 3.07.Alex's liver enzyme up again.His blood ok for chemo again this week.
Fri---Stayed in,didn't do much,had a chill out day.
Sat--- Went to the football match at Derby.
Sun---We went visiting[mothers day.]Alex bought me some roses.Watched dvd's at night.
Alex seems well,he is still getting auras[not quite seizures].He hasn't returned to school yet.

Monday, March 7, 2005 1:21 AM CST

A lot has happened since last update.

Tues 22nd Feb---My birthday,we went to wheelchair services to order a new wheelchair,Alex has grown.Told it would take 6 weeks to come.After we took Becky,Sammie and Nathan out for a meal to celebrate birthday.It was snowing.
Wed---Didn't do much,Alex tired.
Thurs--- MRI scan[will not know results for about 3 weeks].Alex had a blood test,unable to get any out of his lines.Took blood cultures to grow to see if line infection.HB 13.9 Neut 4.79 WBC 6.3 Platelets 203.Alex called at Asda on the way home to collect his birthday cake,one with his picture on,he started with a temperature of 38.3.We rang the hospital and had to be admitted to have iv antibiotics[Ceftazidine,Flulcloxacillin,Tricoplanin.Found out that he was overdosed on them and it made him sick on Fri morning at 7am].
Fri---Saw his consultant[now a professor]in corridorhe asked why Alex had been admitted and decided to remove his hickman line[this was at 11am]luckily Alex hadn't eaten on drank anything since 8am,he was at the hospital school.Alex was operated on at 3.40pm.I was really scared in case anything went wrong,it was the day before his 13th bithday.He was put to sleep via his hickman line not the mask,it was horrible,no time to say see you later and he coughed and all stuff came out his mouth.It really freaked me out.Later the surgeon came to see us at about 4.15pm,my heart was in my mouth when he walked through the door.He had been expecting to see Alex in the room and said he had been out of surgery since 4pm.Alex had been entertaining the nurses in the recovery room,talking about his TY beanie collection[he has about 500].Alex had a canula in his righr hand to carry on having his antibiotics[only had Teicoplanin now].

Unable to carry on updating at the minute will resume later

Monday, February 21, 2005 2:37 AM CST

It has been half-term from school and we have been very busy.Alex has been well,only had a couple of seizures.
Monday--didn't do much,I had a migraine.Tuesday---Took Alex to complete his field test on eyes,he had a sight test and photos of his inner eye last week at opticians[I have given up chasing the appt at the hospital,been waiting over a year].Alex is slightly short sighted but not enough to have glasses,his eyes look healthy but has lost a lot of his side sight[which we already knew].Wednesday----Alex went to the park with his nephew Nathan and RODE his new BMX bike he had for his birthday.He was very wobbly and only went a little way but he did it.Alex had a full BMX helmet which supported his head where his skull is missing.Alex's consultant had suggested the bike as exercise[as he does a lot of cycling for Brain Tumour research].Alex never really mastered the art of cycling before he was ill now we know why.We also went to visit Alex's grandparents and saw his auntie and cousins.Thursday---Went to the cinema to watch Meet the Fockers and then had to go to the hospital to collect tablets which they had forgotten to get ready[Hazel the nurse who normally runs everything brilliantly was off].Alex had a blood test[finger prick,his line didn't work again]Ryan,Alex's named and favourite nurse did it.HB 12.8 WBC 5.3 PLAT 229 NEUT 2.03.Alex had his line flushed and guess what? Alex had a temperature when we returned home.He had it all night but back to normal in morning.Spoke to the hospital we all definately think it's a line infection,got to go in next week to sort it out and if he gets anymore temperatures to go straight in.It's been every Thursday for the past few weeks.Friday----Alex took a few friends out to Pizza Hut for a early birthday lunch.It was a pleasure taking them.Alex was tired in the afternoon and went to sleep.Saturday-----Took Alex to the park again to ride his bike,he just got on and rode off down the path,no problem,didn't get as tired.Has more trouble walking than riding.He still struggles to walk any distance at all.He stayed with his sister Becky for about an hour in the afternoon.Sunday-----Alex took Nathan to see Sponge Bob Square Pants.Alex is really into the cult thing,he has loads of Sponge Bob Things.He was laughing all through the film.
Monday--back to school to day later.

Sunday, February 13, 2005 2:25 AM CST

Just re-read previous entry,it should have read 5mg of clobazam not 50mg,if I'd gone with that Alex would have spent all his time in bed.Oops.Actually we swopped the dosage round with doctors knowledge to 10mg at night and 5mg in morning.It seems to be working,only had mild auras on some days,clear on others.

Went to the hospital on Thurs saw same doctor as before,no mention of previous conversation regarding stopping treatment,in fact he upped dose of TMZ because Alex has put weight on since summer.Weight now 44.9kg Height 136cm grown 1cm in 4 weeks.Had results of bone x-ray,when taken Alex was 12yrs 10mths,and his results showed his bones were 12yrs 6mths.Really good.

Alex had been complaining of being tired but I wonder if it is mostly in his mind.On Friday we went food shopping which Alex normally loves in morning Alex said he was really tired,went and lay down after for 10 mins.I suggested going to see his old school[Street Lane],he jumped up and when we arrived ran into the playground to see his ex teachers.They were having a Tsunami day with activies to collect money.Alex took penalties [scored 5 out of 6],no problems with kicking a ball.He also went and played with the pupils not bothering about me or being tired.

On Saturday Alex went ice skating at a temporary rink which had been erected at our local town[Belper]for a couple of days.I had to go on with him.

Alex has sent his friend Jo a valentine card and a RED ROSE.It cheered her up.Alex is so sensitive and loving.

Sunday, February 6, 2005 1:13 PM CST

Alex had a lovely weekend last week,he saw Dr Chow re seizures and we upped his anti-seizure meds to include clobazam 10 mg in morning,no seizures until Wed,then he had a seizure at lunch time.He had one on Thurs in afternoon,and on Fri.On Sat he just felt abit tired but on Sunday had lots of seizures all day.We spoke to dr who advised adding 50mg clobazam at night.
Not sure if Alex is coming down with a virus again,Nathan has been sick with a temp yesterday and today.
Blood fine for chemo on Fri HB 13.1 WBC 5.1 Neut 2.6 Platelets 201.
Alex had a massage last week with Ginny at the hospital.
MRI now booked for 24th Feb,two days before his 13th birthday.
I have had problems with e-mails getting through to the brain-tumour groups,they are bouncing sometimes,sorry if anyone does not receive reply to queries.

Thursday, January 27, 2005 4:42 PM CST

Alex went back to school today,he has not been for a week.Has been tired and still having seizures.Alex was really well this morning,even had PE at school,but then was showing off to the nurse,who came to flush his hickman line,and fell off his chair onto his bottom,it shook him up and he started having seizures.He's such a pest!!!LOL.Wouldn't swop him for the world.
Managed to get his hair cut on Tuesday,most of cradle cap has cleared for now.
Have been sent two MRI dates from the hospital,will have to ring them to cancel one.[It's amazing that you have to fight to get one and then get send two within a week of each other].

Sunday, January 23, 2005 4:53 PM CST

Another mixed week.Alex went to school Monday and Tuesday[part-time],even had his first PE lesson,played table tennis.He became very tired on Wed and hasn't been to school since.He had vomiting,temp and seizures again on Thurs night[2 weeks on the trot],we had been to the hospital for a blood test,don't know if it something to do with stress or if just poorly again[both his sisters have been ill again].He has had seizures most days put we hardly notice them except for thursdays batch.
Alex blood fine for chemo,his neutrofils are above 4.Started again Friday for 7 days.Kept him quiet over weekend.
Still having trouble with cradle cap on his head,trying to clear it up before taking him to have his hair cut.
Bone x=ray still not turned up at hospital.

Monday, January 17, 2005 4:12 PM CST

Another mixed week.Had a few days [Mon,Tues,Fri,Sat]without seizures,which was great.Alex had me worried on Thurs,he had a temp,vomiting and seizures,he was fine at the hospital early in the day but started being ill in the evening and all through the night.He is ok now,must have been another bug.Very tired on Fri[no school] but managed to go to disco at night,friends birthday party.[I'd forgotten what girls do at that age,spend all their time in the toilets].Alex managed a few dances with girls.Moaned at leaving early,but no way would he have been able to stay late,in fact he was almost asleep in the car home.He felt a bit better on Sat,played table tennis.
The more seizures Alex has,the worse his short-term memory is.Sometimes he makes us laugh when he can't remember and other times it upsets us.Yet on occasions he remembers things I have forgotten about.I suppose it's swings and roundabouts.
MRI booked for 28/02/05.Hospital have lost bone x-ray,may have to have another.
Oncologist threw an upsetting statement at us on Thurs,he has been considering stopping TMZ[chemo],partly due to financial[Nottingham health trust don't want to pay-in fact we were told our doctor was the only one who prescibes it and he thinks everyone should have it to start with],and partly due to effect it has on blood work[but Alex's blood is as high as it has ever been,higher than mine.He said Alex has had good scans,I agree but we have had nothing to show tumour has gone or that there are no cancer cells in there.There are alot of people still on TMZ 3,4,5 years down the line and there has been proof you shouldn't come off it too soon.I argued Alex's case,actually I had thought about increasing dosage because Alex has put weight on.The doctor has prescribed another months medication as normal and I'll wait and see what he says next time.I don't want to stop,It's too soon,The tumour has already grown back once because the hospital didn't do the right thing in time,I'm not prepared to let it grow back again when we can do something.
I hate all the argueing and having to fight for all Alexs treatment,why when something is working we can't be left alone to adminster it and enjoy what time we have together.
On another sad note,one of Alex's friends from the hospital passed away last week,she was very brave,he doesn't know[he would get too upset and worry ].

Saturday, January 8, 2005 8:34 AM CST

Alex is still having seizures most days,looking back they seemed to have started continuously since Bens funeral.Had a blood test to determine anti-seizure meds levels.Got to see consultant about what to do next.Alex's lines are still not working so having to have a butterfly needle stuck in his hand.HB 13 WBC 4 NEUTROFILS 2.2 PLATELETS 202.His liver enzymes keep up and down.Still on chemo every other week.
Alex still putting weight on,now 7st.Costing me a fortune in new clothes.
Alex has just starting to feel a little better[ill over christmas and new year with a tummy bug],is taking an interest in his christmas presents.
Haven't had results of x-ray yet,should get them on Thurs,also need to arrange a MRI.

Tuesday, December 28, 2004 4:17 PM CST

Another mixed up week.Alex still having seizures,a couple of them quite long,especially one in the night on 23rd.
Saw Dr Walker on Thursday[check up],did a bone x-ray on Alexs wrist to see what age his bones are.May have to have growth hormones.Staying on same treatment[Temozolomide and Thalidomide.]
Alex can't be left alone for more than a few minutes because of him fitting and he gets very muddled still.It is not as bad as when he was first ill but still quite exhausting.I suppose things become the 'norm' and you end up living a management day[you just get through that day].He still sleeps with me because of the risk.
Some people have got the wrong idea about Alex,they think he is cured because he looks so well and he goes to school.But Alex still has a very agressive brain tumour which measures roughly 3cm x7cm.It is most deadly of the brain tumours.He is still on very strong chemotherapy every other week.He only goes to school on a very part-time basis,sometimes only 30 mins a day,other times he goes for one lesson then comes home for a rest,going back for maybe another lesson.He doesn't do alot of the work,he can't write very well,his eco's do alot.Alex could have a home tutor but he believes his tumour to be gone and has always loved school.We are very lucky that the school have been very supportive.In fact they persuaded me not to have a home tutor when Alex got very depressed.There is no way Alex would be able to attend school without all their help.

Wednesday, December 22, 2004 3:42 PM CST

Alex has had a cold this week,started Friday.Increased his anti-seizure meds,seems to have stop the continous seizures.Can't stop him eating,at least it's not all sweets and rubbish.He's put weight on again[maybe I should begin to limit a little,trouble is it's nice to see himm eating proper meals.]
Alex sung in end of school assembly with the pop choir.
He is really forward to christmas.
Merry Christmas to everyone who visits Alex web site.

Tuesday, December 14, 2004 3:53 PM CST

Alex sang lovely last Tuesday at his concert.He has been abit better in himself.Sammie has been ill so it looks as if last weeks sickness was definately a bug.
Alex had to go to the hospital on Thurs for a blood test,his lines did not work again.His blood count was ok for chemo so started again on Friday,although one of the liver enzymes was slightly high,will recheck that next week.
His neutrafils were high,no problem.
Alex is still having the very mild seizures,he says he can sometimes fight them,I will have to check with epilepsy nurse,he has put alot of weight on in the last 2 months and maybe the dose of the anti-seizure meds isn't high enough.
Alex is getting all excited about christmas and wants to go shopping.His memory seems to be better this week again.
Went to the football match on Saturday[Derby County v Nottingham Forest Derby won 3 nil .]Alex was really excited.Two years ago Alex was a mascot for Derby County leading the team out on to the pitch,when they played Nottingham.Alex supports Derby, often wearing his cap and shirt at the hospital which is based in Nottingham.

Monday, December 6, 2004 11:20 PM CST

Alex has been sick this week,the dreaded tummy bug reappeared.He has seemed abit out of sorts again.It is always up and down.
Alex decorated the christmas tree at school on Monday.He has his christmas concert on Tuesday.singing with the choir.
Alex has been depressed since Ben died,worried about being ill.It has made it worse because Sam has been staying with us,she decided to move back to her house.This has made me feel guilty.I feel torn between them both.I need to get positive again for Alex,to get him happy again.He has been complaining about not hearing again,hopi-ear candle time again.
Wish upon a star rang and asked if Alex wanted to go to Lapland for the day,but Alex isn't allowed to fly.He was disappointed[overheard the phone call.]
Hopefully will have a better week next week.

Saturday, November 27, 2004 4:34 PM CST

Alex had his results of his MRI
The tumour is shrinking again.
Everyone at the hospital was pleased,they have never got this far before with a GBM IV.
It looks as if Temozolomide and Thalidomide is working,hope and pray it carries on.
Alex's blood count was high enough for chemo this week.Hopefully he will be back to school on Monday for a little while[was off all last week except for pop choir.]

Monday, November 22, 2004 3:35 PM CST

Alex has been unwell this week from an upset tummy,I think it is a bug.His blood count wasn't high enough for chemo this week,his neutrofils were only 0.84.The rest of his count was fine.
We have all just been muddling along since Ben passed away,people say time is a great healer,I hope so.
We will get results of the MRI on Thurs.

Sunday, November 14, 2004 3:29 PM CST

This is a very sad update.
I haven't been able to words on the page before.
Alex's nephew,my grandson, Benjamin Luke Cooper-Baker,aged 10 months passed away on 2nd November 2004.He had been in intensive care for nearly 3 weeks.We visited him everyday.His funeral was on Friday 12th November.It was a beautiful service and he is buried in our local church.Samantha, my daughter,is staying with us for a few days until she is ready to face living at her house again.
Alex has been really brave especially when I had to leave him with his dad,Paul and Becky[his other sister].I found that really hard,felt torn between both Alex and Ben.Alex has also had quite a few seizures this month,but I think it's to do with stress.
Alex's blood results have been good enough for chemo,although his Hickman line has not worked for 2 weeks.
Alex had a MRI scan on 4th November but we do not get the results until the end of November.

Friday, October 15, 2004 1:52 PM CDT

Alex has been well this week.No problems taking his chemo.He has still been eating vegetables;on Sunday he had 7 different ones on his plate[carrots,peas,green beans,spinach,broccoli,brussel sprouts,baby sweetcorn],I was speechless,he has also tried cauliflower since then and moans now if he doesn't get atleast 2 veg on his plate at mealtimes.
On Friday he sang in the pop choir at the school Autumn Fair.Then we went shopping[retail therapy] Alex loves shopping.Even found a dvd of the book he is studying in English at school[Holes],it makes it easier for Alex because of his short-term memory.
Did more retail therapy on Sunday and Wednesday,Alex doesn't always buy things he likes looking.
Had one bad day of seizures.Got a bit upset about Ben[his nephew-10 months old],he is back in hospital,lost another 1lb in weight,down to 8lb 4oz.At last we are getting something done,Ben had a NG tube fitted yesterday.
Didn't have a blood test this week,Alexs nurses said his blood was very high last week and they weren't expecting it to drop alot.
Alex has made a necklace for me in technology at school.
I am really proud of him.

Thursday, October 7, 2004 2:46 PM CDT

This week has been a bit up and down.Some days Alex has been well but others have been a bit fraught.
On Wednesday 29th Alex finished reading the latest Harry Potter Book.It has taken him over a year because of his short-term memory.He was of the first people to get the book[12 minutes after release].He also has a signed copy from JK Rowling.Normally Alex would have read this book in a week[before being ill].It has been a big achievement.
Alex has also been taken over by the 'vegetable bug',he has decided he loves veg,even eating spinach[he said'why did you not give me this before?!!!].We have tried to feed him veg and fruit all his life but he would not even entertain it before[his sisters love all fruit and veg].He wants to try everything,also fish.Hope he keeps it up.It has made a big difference in his blood counts.
Alex had a count today ,his platelets are 178 and neutrafils are 1.54,WBC 3.2,HB 12.3.High enough for chemo,so start again tomorrow.
Had quite a few seizures this week and also sufferered with a bad cold over the week-end.
On some days he was raring to go,although he tends to get tired quickly.
Alex had a check-up at the hospital last week and they have increased the Thalidomide to 300mg per day.

Monday, September 27, 2004 2:30 AM CDT

ALEX DANIEL COOPER[GBM IV]

Alex has been very wobbly this week.He has had a lot of seizures.Started chemo[TMZ-50mg per day]on Fri.
Didn't manage much school,but he still tells me how to spell[he is very good].
Alex still tired,had breakfast in bed everyday.It seems the more tired he is,the more clingy he becomes.
He has been worrying about Ben[his nephew],who has Barth Syndrome,problems with his heart.Think we have to hide how ill Ben is so Alex doesn't worry.
Alex has been eating really well,even had a 'Sunday roast dinner'with vegetables!!!!.He now weighes 5st10lbs.


I forgot to mention in previous pages Alex lost the right and left fields in his eyes[bit like having tunnel vision],his right eye is not as bad as the left eye.Think it was due to surgery.Alex has compensated alot and can play pool and darts,he just gets abit confused in crowds and when people approach from behind or from left.

Sunday, September 19, 2004 2:36 PM CDT

Hi everyone

Alex managed to go to school every day last week,mostly only for a little while.Hasn't got the same eco and he got very confused and very tired.
Alex can not have his chemo this week,was supposed to start on Friday morning.His platelets were 161 but his neutrofils were 0.94 instead of 1.00.Blood test are easy using his Hickman line[when it works]
Because Alex was tired this weekend we did not do much.Had to go to bed at 8pm with him.He isn't ever left on his own due to him having seizures.
We have got a meeting at school regarding his hours for support on Tuesday,it seems as if we have to fight for everything for Alex[schooling,treatment,everything we should take for granted.]
Alex seems well except for being tired,he has started to eat more healthier foods[at last].

Sunday, September 12, 2004 2:24 PM CDT

SCAN RESULT-Stable,nothing really changed.We were hoping for another shrinkage,maybe next time.
Alex,Paul and myself have been to Malcolm Sargents House in Prestwick,Scotland.It was really lovely,the weather was warm and sunny.Everyone at the house made us feel welcome.Alex was feeling wobbly when we arrived and very tired,had been for a while,but over the course of the time there with the help of the staff Alex bloomed,he started walking more,even walked down to the sea and paddled.He was more confident at the end.On Thursday Alex opened the crazy golf course with Stuart Wilson[amature golf champion].We also met Andrew Merry who sang in the British Eurovision Song Contest.Also Alex met Nicola Benedetti,[the famous violinist],got their autographs and had photos taken with them.Alex also sang for the people at Sargents including Nicola.

On Sunday we went to Drayton Manor Park and zoo with P.A.S.I.C [a charity at the hospital].Alex enjoyed looking around the zoo and took his nephew Nathan[3]on the kiddies rides.Alex can't go on the big rides.
Alex blood results are ok this week.
First day back at school tomorrow,don't know yet when Alex is scheduled to go in,if and when he is able.[Alex loves school and they are good with him,he didn't have to go,could have had a home tutor,but he really wants to go.]

Wednesday, September 1, 2004 5:29 PM CDT

CONTINUED FROM PREVIOUS

June 04
Started on Thalidomide 200mg per night [every night] and TMZ 25mg in morning[7 days on it then 7 days on]
July 04
Increased dose of TMZ to 30 mg
Anti-seizure meds not really working.Alex has been on Phenytoin and Carbomazapine[they work against each we have just found out]Tried Keppra[no good]
Aug 04
Increased TMZ to 40mg
Stopped Phenytoin and went on to Carbamazapine retard[up to now it is working]
MRI -on Aug 10- haven't got results yet[takes about 3 weeks]


Although Alex has been poorly,he has wanted to attend school [part-time].
Alex has kept me going and sane[Alex doesn't know how ill he is or that the tumour came back and I hope he never finds out].
We have had lots of up's and downs over the last 2 years but we are still fighting on.

Wednesday, September 1, 2004 4:55 PM CDT

Just started to get organised,so decided to update Alex web site.

April 03
Had another course of Cisplatin[iv] and TMZ[Temozolomide]150mg per day for 5 days
May 03
Another course of Chemo
MRI-Tumour now 4.8cm x9.0cm
July 03
Course of TMZ and Cisplatin.Alex has to have platelet and blood transfusions on regular basis.
Aug 03
TMZ and Cisplatin
Oct 03
TMZ and Cisplatin
MRI-Tumour now 4.3cm x7.3cm
EEG-Alex not affected by flashing lights
Dec 03
TMZ and Cisplatin
Jan 04
TMZ 15Omg per day for 5 days.Had to stop Cisplatin due to slight hearing loss[only on high notes.]
March 04
TMZ 150mg
May 04
TMZ dropped to 120mg,Alex platelets haven't been coming up to 100 very quickly.
MRI-had to fight to get the scan,doctor only relented because I wanted more treatment for Alex,they were prepared to give up again.Result-tumour now 3.3cm x 7.3cm.
Considered Dendrictic Cell Therapy in Belguim.

Friday, August 13, 2004 4:29 PM CDT

ALEXANDER DANIEL COOPER GBM GRADE IV
BORN 26 FEBRUARY 1992.
Alex always was and still is a lovely sensitive boy,he was so happy before he was ill.

AUG 27 02-Alex woke up with a headache,never had one before,felt sick after lunch.At 5pm he was having a seizure.Admitted to Derby Childrens Hospital,had CT scan and transferred to QMC Nottingham UK.
AUG 28 02-Alex had emergency surgery for a brain tumour.Didn't replace his piece of skull[didn't think he would survive,nearly lost him in surgery].
SEPT 02-Kept Alex asleep as his brain stem was bruised,he survived due to the care of Catherine Penrose who was the consultant on PICU.After 8 days Alex was gently woken up and eventually transferred to a normal ward.Discharged 2 weeks after surgery.
Oct 02-7 weeks after surgery Alex finally started treatment[radiotherapy then a few doses of vinchristine].The hospital have admitted the wait was too long.Alex tumour had grown back even bigger than before.
Dec 02-Grand -mal seizure,Alex ended up at Derby Childrens again[QMC refused to admit him,even ambulance men tried to take him there].
JAN 03-Grand-mal seizure,Alex admitted to DRI Derby,given a CT scan,we were told Alex had between 2 days and 3 weeks to live.The doctors got us transferred to a different ward at QMC[ward 38]and because Alexs normal doctor was not available,found us a new doctor who after I said I wasn't going to give up on Alex found us new treatment.Alex started on Temozolomide 200mg per day for 5 days.It was the turning point.
FEB 03-Alex had his Hickman line put in.
MARCH 03-Alex had his first round of Cisplatin and Temozolomide together.

Friday, August 13, 2004 4:18 PM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----