NORTON, Michael. On 1^st December 2000 at the Royal Marsden Hospital, aged 14 years, after battling a brain tumour with courage and dignity. Ex-Head Chorister at Guildford Cathedral, where his funeral will be held on Sat. 9^th Dec. at 10am. All Welcome. Family flowers only. Michael asked that donations be made to UK Brain Tumour Society, c/o G. Boutell &Son, 50 High Road, Byfleet. KT14 7QL.

I can't believe I'm having to write this.

Michael died this morning. We thought we were losing him yesterday
afternoon but he hung on and on; at 2am he slipped into unconsciousness but
Graham and I sat holding his hands and talking to him until, at 7.50am,
Michael took his last few breaths and quietly slipped out of the room.

For the record, the brain tumour did NOT kill him. It wasn't near his brain
stem. But
he was blind, frail - unable even to prop himself up on one elbow - and
confused in so many ways. But he KNEW he had had enough and refused totally
to accept any fluids after Sunday night. I think he felt the disease had
taken everything but he wasn't going to let it take his dignity. And it
didn't. This boy was staggering to the bathroom and demanding privacy in his
last 24 hours, even though he didn't seem to know who we were or where he
was. And I will treasure the hug he gave me, quite spontaneously, on
Wednesday night - for ever. So the disease didn't take him, he left the game
on his own terms when he had had enough. As we always knew he would

An extraordinary boy in every way and his courage and dignity were
outstanding.

His funeral will be at Guildford Cathedral next Saturday morning, December
9th, at 10am. I would implore those of you who are able, please to come;
there will be no memorial service later on; Michael planned his funeral down
to the last detail and in a way it is his own memorial to himself. I know he
wanted as many of you as possible to be there - you have walked this journey
with him and I think Graham, Christopher and I need you to help us walk the
last few steps together.

Family flowers only, please, but we would welcome donations to Michael's
fund at the
UK Brain Tumour Society,
c/o Fiona Redpath-Potter,
22, Hunter Street,
Rugby,
Warks CV21 3NS

or at the HQ which is:
UKBTS,BAC House,Bonehurst Road,Horley,Surrey, RH6 8QG

I can't thank you all enough for everything which you have done for us and
for Michael-
but you know all that, don't you?

At last we are back on line after a most difficult move.

The new house is lovely and Michael was very happy in his 'penthouse'
bedroom, livingroom, bathroom and WC) despite his visual problems.

Unfortunately last Wednesday he had a brain haemorrhage, and probably
another on Thursday. We transferred him from the local hospital to the
Marsden last Friday, by which time he was confused, disorientated and very,
very angry. He has almost stopped speaking to us which is partly the fact
that he doesn't have the energy and partly the disease, which is making him
difficult and quite aggressive. All he kept on saying was 'Want to go
home' - over and over again.

We finally got him home on Tuesday, and I think he was pleased to be back,
at least with his cat if not with us. I won't upset or frighten you with
what went on in hospital but I can give you an idea of the situation now.
Michael is, we think, blind now - or at least his vision is so vague that it
isn't any use to him. Even with one eye patched he is seeing double, triple
or who knows what. But worse than that, he has no concept of time or space.
He can fumble his way to the toilet door, and despite his huge fragility he
slams it in the face of whoever is trying in vain to help him. Then you see
the door open and have to stand by as he repeatedly bangs his head into the
wall because he can't understand how to turn himself round to come out
through the doorway. If you touch him he pushes you away and tells you to
leave him alone, he can manage. He remains fiercely independent despite
being so weakened. He is dehydrated from lack of fluid and vomiting, and
despite everyone's best attempts to regulate the pain relief we are lurching
from crisis to crisis, continually upping the basic morphine dose whilst
still needing to give emergency injections when the breakthrough headaches
come, which are sudden and acute, and each one with the unspoken threat of a
major bleed and sudden death. The paranoia is not so obvious now but he is
holding us all at bay, and I find this deeply hurtful and distressing
although I KNOW it is the disease, it ISN'T Michael.

I am trying to hold on to two pictures. Last week in the hospital before the
paranoia began, Michael was euphoric and kept asking for Christopher.
Christopher came to the hospital and Michael kept on saying how glad he was
to see him, how special it was for him. Finally, after holding tight to
Chrissie's hand and watching him carefully for a long while, he asked
Christopher to get onto the bed and lie next to him while he went to sleep.
We turned out the lights and listened as the two brothers talked quietly
about the puppy, Christmas and being together. If Michael had slipped away
that night we would all have been at peace.

After this awful week, yesterday Michael managed to get out of bed and was
sitting in his living room 'watching' the video of 'You've Got Mail' which
he loves the music of. He let me sit with him, a huge leap forward for me,
and we were companionably side by side. He hasn't volunteered a single word
for a week now, but he did give one word answers to a couple of questions.
After a while I left him in peace. Then I heard him coming downstairs - a
huge undertaking for him, taking a long time, as he can't see and doesn't
really understand what stairs are anymore. He arrived in the living room and
held out a tube of white chocolate buttons. I took it and opened it. There
were two left in the bottom. 'What are these for?' I asked.

'You and me'.

You won't be surprised to know I cried.

But maybe God is trying to tell me that my little boy is still in there
somewhere, inside this person who looks like Michael but isn't anymore.

Have just gone into his room - the CD of You've Got Mail is on. His eyes
are shut but his mouth is moving to the words.........

Christopher gets his puppy tomorrow. Are we mad? I think I might be.

Michael just isn't well at the moment and being with him on my own,
especially when he is at school and I am teaching but I know he is in the
building as well, is very stressful. Graham finds the same. Plus he is
disorientated and confused very
often, which is distressing not only for me but I suspect at some level for
him too. We have been to the hospital today and have been told that we can
expect him to lose his remaining vision in the next few weeks, and that he
could become physically very helpless- needing to be fed, unable to move or
communicate much etc - but not in a
life-threatening way , and so could remain so for some time
before moving into the last phase of his life. This does not thrill us
greatly to say the least, but we are as ever dealing with one hour at a
time. There has been a lot of coverage in the UK of CJD victims and it
reminds me rather of that.

But there are lots of good times still; his school friends are brilliant
with him when he goes in for lunch and they escort him about willingly and
with good heart. He has been advised to wear an eyepatch to help get over
the problems of double vision, so with his scar and baldish patch he looks
tiny but VERY mean! He is talking less but we still get the occasional
flashes of Michael smile; he loves to listen to music still - he can feel it
in the very centre of his being. We took him to the opera last week and
although he couldn't really see it or follow the plot, he was obviously
moved by the singing.As he was when we took him to hear his brother sing at
St George's Chapel - it was all religious music which he had sung as a
chorister so recently and his eyes were closed but his lips followed the
words throughout.

6^th November

At the moment Michael is becoming more vague day by day. He can't remember
many nouns so everything is supported by masses of arm waving as he tries to
'draw' what he wants to say. I showed him a picture of an elephant. He told
me he could 'see' the word in his mind but he can't read it, of course. He
knew there was a letter in the middle with an upward stalk (h) after one with
a downward stalk (p), he knew it had a long (arm wave) and two (arm wave
again) on either side of the first (arm wave) , and could even tell me the
difference between ones from India and ones from Africa........it would be
fascinating if it wasn't so AWFUL.

He's going into school for an hour a day to see his friends, but is losing
sight fast now. So soon he won't be able to make himself understood or to
see, and his memory is so bad he can't think of things anyway. He is,
though, SO peaceful and serene that he is lovely to be around.

We went to see the Keeshond puppies again yesterday; we'll
collect ours after the move. To see him burrow his face into the fur and hug
a small bundle makes the hassle worth it. If he can't see he can still FEEL,
and you don't need a big vocabulary to hug a dog.

We ARE back from Paris early. And I don't think I will ever go again.
Eurostar was fine but by the time we got there Michael was exhausted, so he
had a sleep in the hotel before we set off ( by taxi) for an evening look at
the Arc de Triomphe and supper. We walked round the bottom of the Arc and
watched as the police prepared for a military parade, discussed the Tomb of
the Unknown Warrior and admired the traffic jams. Then we crossed back to
the Champs-Elysees and went into a brasserie for supper, as Christopher
hadn't eaten for at least 45 minutes which meant starvation was a real
worry.

'Pizza, pasta or omelette, Michael?' I asked. Silence. Michael was looking
at me as though I was speaking in Martian. He'd put the menu to one side
because he couldn't read it. 'What's an omelette? I've got a feeling it's
something I used to like but I don't know.......'

Christopher was sitting next to Michael and I was aware that what happened
next was going to be hugely important. Graham ( my husband ) and I realised
that not knowing WORDS was a new symptom and both our brains were in
overdrive as we tried to get our heads round that.

On the opposite side of the table, Christopher moved smoothly from the role
of little brother into the new role of protector. 'Well, I can tell you that
you can make omelettes and they are very good. You always use 2 eggs and
butter..........' and he chattered on, rescuing the situation and at the
same time changing the family dynamic for ever. Two minutes later the parade
went past the cafe window. 'Look, Michael, they are going to the Arc de
Triomphe!'

'What's the Arc de whatever you said?'

As we left, Christopher realised that Michael's eyesight had taken a turn
for the worst again and put his hand through his brother's arm and gently
guided him around the French masses. When we got back to the hotel, it was
Christopher who realised Michael couldn't find the light switches and gently
and unobtrusively put the lights on when necessary, and equally quietly
propelled him away from the bathroom door when he actually needed the
bedroom door, etc.

We got to the Louvre yesterday morning and he saw the pictures and
sculptures he had been waiting top see. But by yesterday afternoon he was
quite distressed by the people, by his inability to recognise any of the
signs ( even tho' he can't read any more, he can recognise things - but
obviously not in another country), by his tiredness...... Finally last night
we decided to bring him home, and this evening he seems much brighter. So we
are starting the VP16, 24 hours early, and hoping like hell it brings some
short-term relief.

He can't identify colours any more, though he knows what they ARE. He just
can't match the name to the colour. He can't remember much about Paris and
indeed I expect tomorrow he might not remember we went.

Meanwhile, I am ashamed to say that I went into Notre - Dame yesterday and
for the first time in my entire life wasn't sure that there was anyone there
listening to my prayers. I don't know how anyone gets used to the idea that
they are moving from a family of four to a family of three. But for the
record, my 11 year old is a boisterous, rumbustious, affectionate,
maddening tomboy with the voice of an angel and the mischief of a devil
however well he behaves when he's singing in Chapel!!) and as he shot down
the banisters outside Montmartre on his stomach I screamed at him. When I
caught up with him I said to him 'I can't BEAR to watch you put yourself at
risk like this! Not now! '
He looked at me, straight in the eye.

'I noticed', was all he said.

We saw the neurologist this morning, and she was clear from the beginning of
the session that she was dealing with a large area of new tumour, quite
separate from the original tumour site. Apparently there was a large case
conference this morning and everyone concurred. It would seem that at some
point there was doubt ( before the scan, when I first told them about
Michael's visual
symptoms) and they thought it might be anxiety-related! Unbelievable that
anyone could think that Michael
should decide he couldn't read on that basis, but anyway.......

So the long and the short of it is that we are dealing with a fairly
swift-growing recurrence.
The 'good' thing about it is that it can grow a fair bit more without
causing headache or other distress, other than to his vision, which he may
well lose altogether - and that could be a very swift decline. So there
should be a reasonably lengthy period before it gets into the rest of his
brain - but, of course, with gbm no one really knows. What WAS clear today is
that Michael has lost a significant amount of vision just since last
Thursday.

From all this, well, the endgame is now certain. We are probably talking a
matter of months, but how many no one can possibly say. He will hopefully see
this Christmas but after that we don't know. The Professor wasn't
encouraging us to buy him a birthday present. His birthday is in February.

Michael himself is subdued and white-faced. We discussed treatment options
which are:
1 to do nothing at all, or
2 to take a course of palliative chemotherapy. This will be a course of
low-toxicity chemo ( atopa - something??? with another - must look at the
pills when I pick them up tomorrow and then I can tell you) which will
possibly dampen down the symptoms for just a short while - weeks - and give
him a little bit of respite in terms of 'quality time'.

We asked all the questions about other drugs, and any trials for which
Michael is
eligible, and everyone who has met him agrees that for him, it is quality
not quantity of time which will matter to him now. What has been agreed is
that we will a psycho-neurologist who can identify the precise areas of
brain which have lost function and then try to help us to work around them,
so that Michael can still find some way of dealing with the written word and
music for a bit longer. The longer he can go on playing the cello, the
better.

We are advised to go off to Paris for 3 days as planned on Saturday, which
we will do. I can only thank God we had such a good summer holiday.

Before you good friends all hit the 'reply' button with lots more treatment
ideas, we have talked over the last couple of weeks to some of the best BT
brains around in Europe and everyone is agreed that Michael's personality
combined with the way the tumour is growing and affecting his music and
reading ( his only real loves ) are such that to put him through long drawn
out chemo with the same result isn't in his interests. And he agrees.

So we enter a new phase, but this time the end is clear, and is coming into
distant but obvious focus.

Please pray for all of us tonight because the future looks so desperately
sad.

To cut to the chase, no one can agree on whether or not it is tumour. It was
rather like that speech from the 'Mikado' where the Lord High Executioner is
deciding whether or not to cut off his own head and every sentence begins
with, 'But on the OTHER hand.......'. The trouble is there are two problems
which at first sight are unrelated; the first is a large new area of
enhancement on the scan on the OPPOSITE side from the original tumour and in
a different part of the brain (white matter rather than grey), and the
second is the gamut of neurological symptoms which have suddenly developed
over the last 2 weeks, which have now left Michael unable to read words or
music because although he can SEE the letters and notes, his brain cannot
make any sense of them at all. Interestingly, he cannot tell the time from
an analogue clock or watch, either.

So this is the problem:

1) When there are such serious symptoms after brain tumour treatment, the
first thought must be that it is recurring disease

2) The first course of action is an MRI

3) After the MRI , if the disease is obvious, it is treated

4) If there is NO sign of disease, then the symptoms can be regarded as
radiation damage

5) In Michael's case, the MRI DOES show significant change in an area of
earlier concern, where the earlier decision was eventually not to operate
but to 'wait and see'

6) BUT the area of concern is not typical: it isn't an obvious mass and,
more significantly, it is not in the area which is responsible for the
symptoms Michael has got.

7) Even if we regard it as radiation damage, firstly it is pretty much
unheard of and secondly it doesn't address the VERY real problem of what the
area of concern actually IS.

So we have to see a neurologist ASAP, hopefully in the next couple of days.
The neuro-radiologist inclines to the view that it is disease, the
oncologist to the view that it's radiation damage and no one apart from Eric
in Canada thinks it might be chemotherapy damage.

Whatever, we don't know if it's permanent or reversible and meanwhile
Michael himself is becoming lower and lower. He is far more tired and
lethargic, very spaced -out a lot of the time and running out of patience
with the whole thing. The only solution is to see a true brain expert, have
another barrage of tests and see what the conclusion is. The absolute last
resort will be to have a brain biopsy. The ONLY thing cheering him up at
the moment is the prospect of going back into school for just a few lessons,
armed with dictaphones, amanuenses and people to stop him getting lost. This
is way above the call of duty for the school in many ways, but for Michael
it represents a real vote of confidence in him and in the chance of him
having a future, and he is determined to crack it somehow. But not having
any answers today has really upset him again, and I can appreciate that at
times he wonders if the medics have any ideas at all as to what is going on.
All we can do is hope this appointment is soon AND conclusive ....

But this evening he's decided he'd rather be a duck. I expect the next
update will be winging in from Birdworld.

I don't really know where to start. We have seen Michael's scans, and the
area in the lateral ventricle that caused a little concern last time has
changed quite dramatically; at the moment the neuro-oncologist is not
absolutely whether it is further radiation damage or new tumour.

He has told us that the symptoms Michael is having, which are getting worse
each day ( memory/double vision/ balance problems plus a tendency to do
strange things eg switch off a light by pressing the door handle) are not
explained by the situation of this new area.

He feels that a straightforward tumour would show a mass and that swelling would be evident behind the optic nerve, whereas this is more like an area
of infiltration - and that, as we know, is one of the delights of gbm. Therefore he is consulting with the neuro-radiologist and the radiologist who did the treatment, as well as a neuro-surgeon, to see if it could be radiation damage. He has told us that tumour is the more likely option, for which surgery would probably not be the answer, and chemotherapy might not,
either. He told us that from the look of things and from reading about and meeting Michael, his overriding concern would have to be providing a decent quality of life for the remaining time available.

So we wait for another week while he gathers the information he needs, but in the meantime he was more than happy for us to forward the scans to Canada to Michael's previous consultant, and I await FedEx as I am writing this. So still a small straw to cling to, but realistically this is not good, and as he said, even if it were not tumour, the symptoms Michael has are not going to be easy to live with.

We have decided, therefore, to see if the hospital school would be prepared to take Michael back ; he needs to be free from pressure but still to see
his friends. And we will try to keep him playing the cello while he can.

In himself, he is mildly euphoric; we had tears this morning but at the moment he is planning the best way to maximise his remaining time; the words
'Ferrari' and 'Harley Davidson' were bandied about at one point. For some this is black humour taken to extremes; for he and I ( but emphatically not
Graham) it is a way of saying what we feel we need to say in a 'safe' way.

What he does feel is that he doesn't want to suffer or to be gradually and increasingly disabled. Whatever turns up next week, we have to respect that. And we will. IF - and it's still if - this is new tumour, then we will go for a short but glorious burst of life over a long drawn-out battle if
that's what he wants, even if it's hard for us. Watch this space - Michael said way back in January that if it came to it he would go down with all
guns blazing..........

4^th October

One piece of good news; today we met a lovely Italian paed. neuro-onc who's
come over from Italy until a replacement can be found for Eric. He was very,
very nice and had actually read ALL Michael's notes - very refreshing. He
did all the neurological tests; he can see something behind the left eye,
but said that could be a relic from surgery. He could see that something
wasn't right, but he said that the symptoms ( or combination of them) were
unusual and he couldn't immediately point to what is wrong.

The bad news is he feels the most likely explanation is a new tumour, and if so it must be moving at a fair rate because Michael is worse today than
yesterday, worse tonight than this morning he has just crashed into the toilet door; he can see it but can't seem to work out how not to walk into
it.

This neuro-onc will go and look at the scans straight away ( hallelujah!) and tell us what he thinks, but he did say that one possibility is that the
tumour is diffuse and small bits are blocking, for example, the optic nerve. He didn't want to put Michael through a CT scan today; he started him back on our old friend Dexamethasone in the hope that it might reduce any swelling, and meanwhile we wait. No guesses as to treatment options because there are no guesses as to what is going on.

The move is precarious; the people at the bottom of the chain have decided to start messing about, but our solicitor is getting tough and pushing for Nov 1st come what may. I had decided to abandon the puppy idea altogether but am being told to wait and see what evolves over the next few days.Probably very wise.

Michael looks thin, sallow and ill. He's very very docile tonight - he doesn't want to talk and I'm not sure that he realises what is going on, in many ways.

He's still sparky, though. We had to have some bloods done today and Lynne, the nurse, uncertain of what sort of tests we were having, walked over to him and said,'What's it to be today, then, Michael?'

Michael furrowed his brow.
'Well,Big Mac and double fries, if you're paying!'

30^th September

A bad news day here, I'm afraid.

Michael has started to see double most of the time, can't walk in a straight line and is drifting through school like an alien.

I looked out of my teaching room at midday to see him lurching into the wall, over and over, on his way to the music department. I went out to talk
to him and I could see he wasn't sure who I was at first. I held up 2 fingers and said 'How many fingers, Michael?' He said,'3 on THAT hand, and
one' gesturing into open air 'over there'. This went on for a bit - so I got on the phone to the hospital. His teachers from this morning said he had been spaced out all morning, able to argue the rights and wrongs of separating Siamese twins but not able to read a short sentence. He tried to switch off a light this morning and ended up pressing on the hinge of the door 8 inches away.

The hospital told me to bring him home for a rest and to take him up to see the neurologist tomorrow morning. They can't bring forward the MRI but they could in extremis do a CT scan - not that that will tell them much. It's possible it's intercranial pressure, but he's got no headache and he doesn't
feel sick - patently since eating 4 Mars bars a day
We are being told to prepare for the worst.

I can't believe it.

Things here are not so good at the moment. Michael has become very tired,
which I would expect after 3 weeks back at school full-time, but more than that he has started to have trouble reading and writing words again; sometimes he writes down a word and then realises it is nothing at all like the word which started out from his brain to travel down his arm.

Now his memory seems to be impaired; he has been found several times wandering in the corridors, unable to remember where he should be. Yesterday his form tutor found him and he couldn't remember whether he was on his way TO a piano lesson or on his way BACK from it.

Now, today, his eyes have started to slip in and out of focus. He is still going to school and trying to keep up with GSCE work; he enjoys being with people and seeing his friends, and, indeed, being 'normal'. In a way it only works because I am on the staff and everyone is therefore aware of the situation - plus I am on hand if needed. I don't know if I'm doing the right thing or not; the hospital agree that he needs another MRI ( next Thursday -a week for the results, though) and unfortunately today we found out that his Tegretol level is normal - I'd kind of hoped it was that that was the problem. One doctor told me that it couldn't be radiation damage causing the problems because the treatment was too localised.

Well that's not what our consultant told us - but of course he's now in Canada and we have no BT expert on hand. I am already planning on sending these MRIs out to someone but I have to say that I am worried. If it ISN'T radiation damage then ............ and yes, I've always known the odds but we've had such a lovely summer I kind of hoped we'd have a bit more.

Mind you, he went for a complete change of scene last night and had his first-ever golf lesson. One of the other teenagers asked him what the (still - bald) patch on the side of his head was for. 'Well,' says Michael, 'Put it this way - don't upset the instructor.....!!'

Sorry, folks, -it's been a long time. And we have been very busy. Michael is now halfway through the 3^rd course of PCV with no side-effects, thank heaven. His hair has grown back everywhere except over the actual site of the tumour, and even there, there is some sign of a little hair returning. So that helps him to feel a bit more normal. He has had an exciting time since I last updated. I wanted you to know that Michael celebrated being a six-month survivor of a glioblastoma in style!

Christopher's school, who were performing their end-of-year show in Eton College's theatre, had kindly asked Michael if he would nominate a brain tumour charity to whom the School could donate any profits they made from
ticket sales. Michael decided on the UK Brain Tumour Society, a charity just over two years old dedicated to funding research in the hope of finding a cause and a cure for this awful cancer . John Redpath, the Society's Chairman, came down to Eton for the evening armed with folders containing information about UKBTS, its aims and plans for the future, and on the front of each folder was a purple ribbon on a safety pin which will be the symbol of the charity in the way that pink is for breast cancer and red for AIDS .Michael and John stood in the foyer handing the folders out as the audience arrived - to much greater effect than Graham and I, I have to say. John is a
big man and Michael is a small boy and I think people were drawn to the two of them by the force of their determination to get people to understand about UKBTS. I was moved to see people pinning on their ribbons after
talking to them.

During the interval we were invited to meet the guest of honour, Princess Alexandra, her husband and other dignitaries. Michael talked to them all and answered questions with gravity, dignity and great honesty. I think the
Princess was quite taken aback when she asked his favourite school subject and he said 'Religious Studies'. She asked if he was religious and he said, 'Well, I am a Christian but I enjoy studying other religions and I'm very interested in philosophy.' They discussed that for a while before moving on to music and his cello playing. She was delightful. At the end of the concert, she went up onto the stage and Michael presented her with flowers. I think he got one of the biggest cheers of the evening. Then John made a short speech about UKBTS and the Princess then presented them with a cheque for £2000!!!! Graham and I were quite overcome - we never thought when this was first discussed that Michael would be well enough - or even here - to do this. He was a credit to himself, to the charity and to cancer sufferers everywhere and we were SO PROUD of him. Boasting - but I don't care! And then the next week, he got a handwritten letter from the Princess - handwritten envelope included - which he will treasure, I'm sure.

Anyway, he hadn't finished there - Michael managed to wring another £120 - about $200? - out of the hospital
school parents this week. There was an art evening with refreshments at the hospital school, and Michael sold purple ribbons. After that he played the cello, and that combined with the profits from food and drink managed to
raise a little more. it all helps!

Meanwhile, Christopher has also been mixing with royalty. In his case, 12 of the boys went to sing to the Queen Mother for her birthday in a private party at the Queen Mother's house in the Great Park. They met her 2 corgis ( stars of the pageant on TV ), had refreshments and were shown over the large summer house given to the princesses 60 - odd years ago in the garden. Apparently she was lovely to the boys and they certainly liked her. Then Christopher went on to win the 400 metres at Sports Day and the Middle School Art Prize on Speech Day, so that cheered him up a bit. It is hard for him because, obviously, everyone always asks about Michael. Similarly, a friend of ours knows Doug Naylor, writer of Michael's favourite TV series 'Red Dwarf', so Michael has ( to his absolute ecstasy) been given some Red Dwarf Tshirts, books, posters and even a mug and watch. I think Christopher is sometimes quite wistful about it all -especially as , at the moment, Michael looks perfectly healthy and well. It is hard for other people to understand, and for us to explain, that this disease can return and devastate his brain at quite literally ANY moment. And we can name quite a few children to whom just that has happened. We have to live for today.

We had an offer on our house last week - not as much as we would like, but better than nothing. We had found another house but OUR buyers have to find a buyer for THEIR house before we can confirm anything, so if someone else gets to the house we want with the cash first - then it's back to square one again. Graham has been on the QE2 cruise liner in Scotland for 2 days this week watching the Open Golf Championship. Corporate hospitality (corporate hostility as I call it ) so he's now sun burned. Ha ha ha. He continues to massage his dodgy finger and it continues to hurt, but the surgeon won't operate while we're all in trauma here. Unusual for a surgeon not to be taking money from someone?!

I hope this VERY long update will mollify all those who have been bombarding me with emails asking what's going on!! We go away on August 4^th. We'll have to visit a hospital for blood tests, but I truly hope that it'sONLY for blood tests. I'll TRY to update before we go - but otherwise you'll have to wait till the end of August. Still - remember, no news is GOOD news!!

July 4^th

I took Michael to school this morning, and phoned the hospital to ask who I should take Michael to see; what was the next step etc. As I was driving home, I got a call on my mobile from the outreach nurses to say that they
had checked the Day Unit and the MRI was up and running - and it was worth me giving them a ring. So I pulled into a lay-by and phoned them and was told if I could get Michael to the hospital by 10.30 they'd scan him. I
turned round, shot back to the RGS, picked him up and hared up the A3, getting to the Marsden at 10.33. Michael heroically had a line put in with no local anaesthetic to save time, and we got to the MRI unit by 10.40.
It was a long lunch hour, but we saw the consultant at 3.00. The amazing news is that the 'suspicious white blob' that we were told would DEFINITELY be on the scan today has HALVED IN SIZE and is only just there ( according
to his inexpert eyes - we must wait for next week's written report before we're sure.Look what happened last time). The consultant told us that no neurosurgeon would operate because there's nothing significant to operate on.

Now for the strange bit. We were absolutely delighted, as you can imagine, because we have been fearing the worst and our emotions have roller-coasted in the last 24 hours, never mind the last few weeks. But the consultant was
strangely subdued; he has given us a copy of the scans which we are being encouraged to send for a 2nd opinion - though what on, I'm not sure. He told Michael that there are significant changes to the brain visible on the scan
which have been caused by radiation, and that he should expect to find next year's exam results not as good as last years; that he will develop slowness of thought which will need to be accommodated with extra time in exams.
He also told Michael again that he cannot guarantee anything; that in the UK, treatment for high-grade glioma is palliative rather than the aggressive approach often found elsewhere; and as Michael himself said, the tumour may
not be present in a mass at the moment but the most likely scenario is that it will return and at that point there will be nothing more that can be done that would do any more than try to buy some time.

So once again, no champagne by request, please. But for now, we can have our holiday without brain surgery ( look out Mickey Mouse, here we come!!!) , Michael can plan his puppy and we can relax that no one thinks our house is
worth living in because we have another couple of months' grace. It's 6 months since Michael became ill, and that amount of survival is in itself a mini cause for celebration. I know the consultant was amazed that the 'blob' has become smaller. I don't know if that proves it is tumour rather than scar tissue; can anyone tell
me, does scar tissue on the brain shrink? I like to put it down to the power of prayer of the huge number of people wishing Michael well. For that we can't thank you enough. We still can't guarantee he'll be here for Christmas, but he's here today and tomorrow and for the Summer, God willing, and we are going to try and enjoy every last minute of it. 

Just a note to tell you that we had a phone call at 5.30 today to say that the MRI machine has crashed, and it won't be fixed for at least 24 hours.Therefore Michael's scan tomorrow has been cancelled.
You can imagine how we feel. This is very bad news for us because his consultant leaves tomorrow and won't have seen the scan. I spoke to him briefly this afternoon, and he told us that he knows he is in the minority
in pushing for more surgery on Michael and he will let us know who in the States we should approach for advice.

More to the point, I have to see who will be taking care of us now, when we can see that person and how it leaves the chemo. PCV is a 28 day protocol and we leave for the State in 31 days. Do we start chemo, do we wait for the
scan, who will help us make the decision and how long will we have to wait for the results of the scan when it happens? This sounds like the cliffhanger from a Dick Barton radio story. But Eric looked at the scans on
the same day - I have no idea what will happen now. Michael is like a punctured balloon. And he hasn't even had the chance to say goodbye to Eric. Just for the record, despite this he walked onto the stage 2 hours later and played 'The Swan' absolutely beautifully. Attaboy.