AN EXTRAORDINARY BOY PART THREE : Living with cancer...Michael shows us how until he can't any more.

'An Extraordinary Boy' - Part Three


Hear Michael singing here.....
http://play.smilebox.com/SpreadMoreHappy/4e4451334d7a417a4e6a593d0d0a?title=&image=4e4451334d7a417a4e6a593d0d0a.jpg

Chapter One

Michael's diary, February 20^th:

"Dad went to hear Christopher sing Eucharist this morning. Mum took me down to the canal, where I finished off another film, no. 3. I wrote all of my thankyou letters, which is one less thing to worry about. I did some cello practice this afternoon. Our web page is coming along OK.

My hair suddenly started falling out on one side this evening, which was a bit of a shock……….."

[This was halfterm week. It was Christopher's birthday and Graham and I felt bad that he was being left out whilst we were so preoccupied with Michael. Graham decided to take him for a 48 hour trip to Disneyland, Paris, for a bit of father-son bonding. This involved Christopher putting Graham on as many vomit-inducing rides as possible - but I think a good time was probably had by all. Meanwhile, I really appreciated some help with the driving to the Marsden. I was shattered. I hadn't realised how much Michael was leaning on me, though:]

Michael's diary, February 21^st:

"Dad and Christopher went off to EuroDisney this morning really early. Grandpa Bob and Sheila came to take me to the Marsden but they got stuck in traffic so Mum took me. Mum went out this afternoon, I had my hair cut although it started falling out on the top today. It is a Grade 1 again. I made some more biscuits with Sheila but they got burned.

I feel I am drifting away from Mum. I think she is fed up with me; all the time I have been ill, I haven't played a game, had a proper conversation or spent any quality time with her."

[This simply wasn't true; but that doesn't matter. It is Michael's perception of it that matters, and I was deeply distressed when I read this after he died. I think we got it right in the end, though. Meanwhile, during halfterm we took Christopher with us to radiotherapy one day so that he could see shat happened:]

From Michael's diary:

"Today Grandpa Bob took me to my radiotherapy with Christopher, so he could see what happens. I had a dizzy attack on the radiotherapy table. Mum took us shopping in Woking where I bought a video player and a robot creator kit. We then went home so that I could have a lie down before we went to see Toy Story 2, which I must admit, I quite enjoyed. I ate lots of popcorn and had a good time."

FEB 25^{TH ( from the website)}

This week has definitely been a better week, and the fact that I have taken a whole week to get around to updating this shows that we've been busy doing other things during halfterm! On the down side, Michael found on Sunday evening that his hair suddenly started to fall out - and I mean suddenly, as it had been fine earlier in the day. That was a bit depressing for him but Christopher tried to improve the situation by returning from a two-day trip to Disneyland, Paris with a huge be-tasselled jester hat.

17) Wearing the EuroDisney hat

 

It made the day of everyone who saw it at the Royal Marsden, where smiles and laughter are sometimes a bit thin on the ground. Apart from that and one dizzy spell, he has been much more outgoing this week.

Good news for me too, because my Dad and his wife have been staying all week and driving Michael to his treatment most days. As a result, while the cats were away in Disney, the mouse went out to play in Oxford for the day, with a girlfriend. It was so nice to have a day out with no clock to watch and without any worry. And with a credit card for company. We went round the colleges and had an hour in Blackwell's Music Shop, had lunch out and generally enjoyed ourselves. Over the last couple of days I've also had some time with Christopher, too. He seems much more settled this week and I've even heard myself shouting at the two of them to stop messing about and behaving like wild animals. Bliss! ( but don't quote me). I don't know how long this will last but going to see Toy Story 2 like any normal family was the best thing we've done since before Christmas and this week will be remembered as a good one. Touch wood at this point, please.

March 2^{nd(from the website)}

Last Sunday was another good day - we went to Brighton for a few hours! We went on the pier ( Michael has his maternal grandmother's gambling instinct as demonstrated on the machines in the arcade…) and Christopher tried to make his father part company with his breakfast on a couple of dodgy rides ( see Disney, above!!), followed by us all eating takeaway fish'n'chips outside the SeaLife centre ( bit tactless, that…).We went into the Sealife centre for an hour or so; it was lovely to gawp at the fish and admire the colours and movement. By that time, Michael was getting tired and so we came home - but it was a good day, nonetheless. Michael also decided to spend all his birthday money on a Lego Robotics 'Mindstorm' kit. This is a scary project involving building a robot and then writing a computer programme which you then download into said robot to get it to do something. He's still mastering the programming bit but it's sure scaring the heck out of the cat!! It's all kept him very busy until today, when he got up feeling less than brilliant and he's been very subdued all day. This is probably the treatment - we're approaching the last couple of weeks now and have been warned that he might be quite unwell for the next couple of months.

Michael himself said yesterday that in some ways he's dreading the end of the treatment, and I can understand that. At the moment we're doing something, but once the treatment ends, that's it: all we can do is wait. And that without the reassurance of going to the hospital every single day, although there is no doubt that they are always there for us at the end of the phone. It's just come as a bit of a shock to see him so tired and fraught today when last night he was in a great mood. Still, that's also a symptom of being a teenager so we have to be careful not to overreact.

March 9^th

This week Michael is really starting to show signs of being very tired and fed up. He's been resting far more and his appetite is noticeably down, all of which are symptoms of the effects of the treatment. The steroid dose has been reduced again, which in itself reduces appetite and lowers the mood, so again I think he's coping with it all very well, really. He's managed 2 very brave things this week; on Monday he went into school for one lesson, and had to face his friends looking in his own words 'like a patchwork quilt'. He opted in the end to keep his woolly hat on, so it was unfortunate that several members of staff told him to remove it before recognising him! He was very worried about facing everyone, but as I pointed out he needs to think about how they are feeling, too. It's great PR for sick people if he can go in and show he's still very much alive and kicking! Just 40 minutes was definitely enough, though, and he slept later on.

On Tuesday was a bigger test - he went out that night to play the cello in a local competitive music festival. This was a huge ordeal for both of us - for him because of standing up in front of everyone when he knew he wasn't at his best, and for me because I was absolutely terrified that he would fall over, have a seizure or something even worse. He actually played very well indeed, but I was not the only person very distressed to watch him when we don't know when we'll next hear him play in public. I was bowled over by his bravery - I couldn't have done it.  Not only did he acquit himself very well indeed - he came third. But there was more to it than that. He has worn his woolly hat all day, every day since his hair started coming out. He got to the concert hall and decided that he couldn't perform in a hat - it wouldn't look right. So, just before he walked up onto the stage, he took his hat off. Now that IS courage. To be honest, even lifting up the cello was an achievement for him tonight. He is quite extraordinary and we are very, very proud of him.

I suspect things are going to get harder now. Michael is beginning to become very worried about the upcoming MRI scan. He feels at the moment he wants no chemotherapy. This will be a difficult one to work through.

From Michael's diary, March 7^th:

"Both Mum and Dad came up to the Marsden today. Did a bit of last minute practice for the Godalming Festival, although I didn't expect to come anywhere. I could hardly play any of the notes! A friend of Mum's came to hear me play, which was nice of her. I was very tired today.

March 8^th:

I was forced out of bed this morning as I was too tired to get up…………"

March 14^{th(from the web site)}

Another week almost gone and only 3 doses left! This week Michael has been extremely tired and has spent much of the day resting in bed. Today we've seen the radiologist who has arranged his MRI for Thursday, April 13^th. The original plan was to wait for 6 weeks, but Michael feels that as his tumour must have grown massively in that time before Christmas, that was too long to wait around. He's obviously nervous about it ('So that's when we find out if I live or die, Part 1') but we just have to be patient. Hopefully we'll get the result very quickly afterwards.

He went into RGS again for 2 lessons on Monday and coped quite well, despite his hat being pulled off by a few older boys who laughed at his hair before throwing it back. I was very surprised at that and rather upset by it, but I suppose we've got to get used to it. He was upset at the time but shrugged it off later. His skin around the tumour site is very burned and raw-looking, and he feels sick most of the time, but other than that he's not showing too many signs of illness. There are some behavioural and memory problems but nothing insuperable. Next Thursday we go back to the Oncologist, and then we start to talk about what, if any, options there are now. Then we get into opthalmologists, endocrinololgists - more 'ologies' than Beattie's grandson…!(The BT advert?…Oh, never mind…)

In short, crunch time is approaching and Michael is feeling very low. We know the next 6 weeks will be tough as his body recovers from the treatment. Still, we're planning a couple of good things to help - a few days away, for a start. I've joined a brain tumour support group via the Internet, and to my surprise Michael emailed the List himself today. Maybe he's got to the point where he does feel he wants to talk to other sufferers. Hope he can cope if all 911 members reply!!

[I was amazed and delighted to find out that Michael had emailed the List. He struck up a real relationship with many of the people on it, although once those that he knew started to become iller he stopped. Once he himself knew that he was dying he never wrote again, but he continued to email fun things to and from some of the Baggies.

This was the time that the radiotherapy ended. No more guarantees, nothing else which would definitely work. We knew that the role of chemotherapy in brain cancer was very much unproven, but we felt we had to give Michael the chance to take it. He wasn't about to be pushed into anything, however, and his first response was 'No'. He was far, far too intelligent to be told what to do, and Graham and I had to agree to abide by his decision. Our only criterion was that we insisted that Michael should discuss all the options thoroughly with the experts. And we MEANT thoroughly.]

March 23^{rd(from the web site)}

Today was not such a happy day. I must say here that Michael's oncologist is a lovely and very genuine person, who today spent an hour and a half with us talking about the various options. It would appear that Michael's tumour is not as straightforward as we had at first thought in that it is not 'pure' glioblastoma. In fact there are two other sorts of tumour cells; ependymoma and pineal tumour as well. I'm not sure whether this is good or bad in terms of diagnosis, but apparently this is often the case in paediatric brain tumours and is what differentiates them from adult tumours. As you know, Michael had said that he wasn't interested in chemotherapy if it wasn't going to improve his chances or improve his quality of life. The consultant spent a very long time talking directly to him, explaining the consequences of this decision each way. It would seem that without some chemo, his chances of even short-term survival might be as low as 15%, but this could double or maybe even double again if he tried some more treatment. What he has in mind is a 3-drug combination called PCV. The 'P' bit is injected, the 'C' and 'V' are oral, and he recommends 4 28-day courses with a couple of weeks in between each. The downside is that Michael would need frequent blood tests as well as the injections, and he is truly needle-phobic when it comes to these injections. One way round this is to have a permanent line inserted under his chest so that his veins could always be accessed easily. This means another operation to put it in and take it out, and by this time in the conversation, Michael was visibly distressed. In fact, this afternoon was the most upset he's been since the very beginning. At one point today he said he feels he's a hopeless case; in fact, the consultant was trying very hard to say just the opposite, but even when pressed the best survivors he could come up with were only four years out from diagnosis. Still, even if we can buy another year, that might be enough for something new to come along.

The good thing about the PCV is that there is no hair loss, minimal or no sickness (easily controlled) and he can go to school and live as normal for however much time we can get from all this. The worst case scenario at the moment is for the scan on April 13^th to show regrowth. That was sufficiently grim for the consultant not to want to discuss it. He did say that it was a shame that we had not had an MRI immediately after the surgery in January, since it was possible that there had been another tumour somewhere in the brain which had been missed by the surgeon. We won't consider that one at the moment.

For now, Michael has 3 weeks to decide whether or not he wants to accept the PCV, and, if so, whether he will opt for the permanent line or rather to have endless needles in his arm. The decisions must be his. He's fighting the disease, after all. Meantime, Christopher comes home from school next Wednesday and we will work hard at having some fun together. Michael is building up his time at the RGS week on week, but we were reminded today that over the next 3 - 4 weeks the 'somnolence' will come upon him and he might sleep for as much as 18 hours in some days.

[Michael stopped writing his diary regularly at this point. I have no idea why; I know that he felt the odds were stacking up against him. Maybe he didn't want to have to think about it. Before long, he had stopped altogether. Meanwhile, all the Americans on the email were urging me to send all Michael's information to Henry Friedman at Duke Hospital in Chicago, who is known as one of the 'greats' in BT treatment.]

APRIL 4^TH

Graham and I emailed Dr Friedman in the States after our last meeting with Dr Bouffet, and, as we had been told he would, he emailed us straight back saying that he would be happy to advise us if we sent all Michael's notes. This led Graham and I to sit down and have some pretty serious discussions over what we were going to do. We have always been of the opinion that the most important thing is that we are a family, and that certainly would not be the case if two of us took off to the States for an indefinite period. However, we felt that we both needed to be absolutely certain that we were getting the very best treatment for Michael - and we were (and are) always being told on the Brain Tumour Support Line that the UK is miles behind the US in BT treatment. So Graham and I went back to see Dr Bouffet again - he very kindly gave us another hour of his time - this time without Michael, who refused to come with us at all. We went right through everything. We told him that we needed to be certain that the treatment being offered was the best, and not just the cheapest, and we wanted to know why Michael's odds seemed to have dropped so drastically. He was very honest with us. It would seem that if the tumour is back by next Thursday then his odds are very low indeed. The longer he can hold this thing at bay then the better his long-term odds are - the mortality rate is at its highest and most devastating in the first few months after diagnosis. Chemo won't cure anything but it might put the final nail into the tumour. It is possible that although the surgeon said the entire tumour was removed, that in fact some was left behind, because a GBM puts out little tentacles into the brain and small, undetectable tumours grow there. To me, Michael seems very well indeed and you'd never guess he is so ill - except, of course, that we didn't know he was ill at all until the day he collapsed.

Anyway, Eric Bouffet has obviously got the measure of Michael and said he'd like to talk to him on his own and he'd be very happy to come to the house to do so - and faxed Michael that day to tell him so. Michael was so bowled over by this that he immediately agreed to go to see Eric again, and yesterday he spent a whole hour (again! What a man!) with him, asking a whole range of questions from survival rates to sterility from chemotherapy . Eric was always honest, as far as I can gather - brutally so, in some cases- and afterwards Michael decided he would take the courses of chemo and have a Portacath ( a line which runs directly into the body underneath the chest, for easy access for drugs and blood tests) fitted, probably in St George's before Easter. I believe very firmly that the fact that Michael has so much time for, and respect for his consultant might be the single biggest factor in his recovery with or without chemo. I wish you could all spend a couple of hours with him - he's so up-front and brave, all backed by an indefatigable logic to all his decisions.

If you are asking how he's different from before; he still has some vision problems; he's quite aggressive - especially towards Christopher at odd times - but on the other hand he craves affection and hugs. His music is causing some problems in that his intonation is suffering, a frequent side effect of right brain temporal lobe tumours, apparently, and he forgets odd things. He's just 'not himself'. But he's also 14 and what teenager IS easy to live with?

We intend to go away for a few days to Poole, to relax as best we can before the scan. Michael hasn't been NEARLY as tired as I expected following the radiotherapy, apart from 3 or 4 late mornings, so we hope he'll be up to it. His next MRI scan is at 12.15 on April 13^th, results should be a few hours later. Please keep your fingers crossed and watch this space.

From Michael's diary:

"Had scan today. No really obvious tumour, but can't celebrate in case it returns. Started chemotherapy today with CCNU. Sick."

April 13^{th(from the website)}

Michael had his MRI today and the consultant came to see us straight afterwards. As he says, he is not a radiologist and so his impression is not set in stone at all. However, the cautiously good news is that there is no obvious sign of a tumour at present. There is a lot of scar tissue, which is to be expected at this stage . What he doesn't know for certain is whether that scar tissue contains even the smallest amount of suspect tissue, and we won't know that for certain until the expert from Atkinson Morley has reviewed the scans with Michael's surgeon on April 28^th. If there is any doubt about any of that scar tissue at all, then the decision would probably be made to operate again.

So we can breathe a very small sigh of relief. BUT, and it is a very big BUT, it is important to remember, as Michael's oncologist told us, that this does not by any means mean that we can relax. This tumour is fatal more often than not by a very large margin, and can come back with a vengeance at any time. After all, it only took six weeks to do most of its growing in the first place. So Michael is very keen that no one should get too excited because he still feels very threatened by it all. And he still feels pretty ill most of the time, too. All this means is that we've got on to the first step of the ladder - which is a lot more than some people are able to do, so we do feel very fortunate to have done so - but we know Michael could be back on the ground all too quickly.

He is starting the chemotherapy tonight with several tablets of CCNU; next Thursday is another horrible day for him because he is going back into hospital to have a Portacath inserted ( a permanent line through which the vincristine can be injected and bloods can be taken ). The 3^rd chemo drug is called procarbazine and will also make him feel quite grotty if he eats the wrong sort of things.

I hope all this doesn't sound too miserable; we feel a whole lot better than we did this time yesterday!! -but we are just too superstitious/realistic to start celebrating this early on. We are expecting Michael to feel a bit rough after starting the chemo tonight.

 

18) After the end of radiotherapy, April 2000

From Michael's diary,April 18^th:

"Looked for house in the state agents'. We had our house valued. It would be good to move house. Especially if there was room for a snooker table…"

[We had made the decision to move house. We had lived at our current address for over ten years, and we felt we wanted a new start - and we wanted to do it while Michael was well. So on Easter Sunday, we put our house on the market. Just as the market collapsed…..]

April 21

Yesterday and this morning have been dreadful. Michael is feeling marginally better at the moment ( but only marginally). Yesterday he spent most of the day at the hospital, He hates injections and he had to have a canula put in as soon as he got there, very painful!!. Then they took some blood. An hour later they decided that one of the blood samples needed redoing, more pain. At the same time they gave him 4 injections as part of the chemo, again more pain. At about 4pm, he went up for the operation to put the Portacath in the right hand side of his body, returned about 5pm to the ward, in considerable pain, not only where the box had been inserted under the skin but where the line had been connected to the vein. The area is swollen, bruised and muscles have been pulled. Various painkillers were given but with little impact, and at about 7pm in the hospital he was sick. Eventually got home by about 9pm, still in pain and feeling sick. Then he had to have something to eat for he had to take the next chemo drug, Procarbazine.

At about 4.30am this morning he was sick again, and every 20 mins for the next 2 hours he felt nauseous and tried to vomit. He has slept for several hours this morning and is feeling not so nauseous, but he is still in a lot of pain and has no appetite.

He's thoroughly fed up.

Email:

Subject: Re: The Verdict - Necrosis vs New Growth

Date: 26 April 2000 07:00

Dear Sandie, [one of the 'Baggies']

I was relieved to see your name on the list of messages this morning -! Thank you for your explanation of necrosis. Today I am GOING BACK TO WORK !!!!!!  This may seem a bit mad, this joy, but I really enjoy what I do - I'm Head of Keyboard Studies at a Boys' Grammar School. I do 3 days a week ( lots of time for my other concert work etc ) but am going back for just 1.5 days for now. Michael is also going to start coming in for the subjects he's choosing for next year, so that by the end of the term he should have built up to nearly full time. I feel that he's doing so well AT THE MOMENT - no promises - that we have to try to be a bit normal for a while.

Christopher went back to school last night but still isn't very well. He's getting blinding one-sided headaches. I've always thought he was prone to migraine and this confirms it, really. I'm sure most of it is stress but I bet I know what he's thinking. I've asked Matron to get him to the GP this morning (he's registered with the school doctor) and to make sure she briefs him before Chris goes into the room, so that he can be reassured he doesn't have a BT.

Househunting goes well now that I'm a 'nethead' and can surf right here at home. We fell in love with a house on the 10^th green of a golf course, but given the fact that the roof was leaking and needed replacing we abandoned that. Back to the drawing board!

Well, I'm off to shout at my little angels who've probably not touched the piano for weeks. It gives me a feeling of power to berate all these immaculately-uniformed 18yr old schoolboys. Know the feeling?! Michael's coming in this afternoon for Maths, History and French. Look out for Mr Grumpy!!

Love to you and Jennifer,

Bj

April 29^{th(web site)}

Michael is continuing to be unfortunate. He has now recovered from the Portacath insertion, only to be told by his neuro-oncologist that he is not totally convinced that the showings on the MRI scan are all scar tissue. He has asked a paediatric neurosurgeon at another London Hospital for his opinion. This man is not sure; he feels it could be 'necrosis' ( dead or scar tissue) and recommends that Michael should have another operation to have it removed in order that the cells can be tested. We are now awaiting Michael's neurosurgeon's and the paediatric neuroradiologist's report, which will be received by end of next week at the earliest. It now seems likely, as it is viewed better to be safe than sorry, for Michael to have another brain operation in two weeks time.

We are all praying that it is just scar tissue.

Michael returned to school on Wednesday and did a few lessons on Thursday and Friday as well in between hospital visits. He is glad to be back and keen to start having a more normal life than he has had to date this year.

Berrie is away for a few days having a much needed break to recharge her batteries for the next series of medical treatments.

[I went to Guernsey with a girlfriend for 48 hours. Wonderful - although the plane journey was something else…]

[Every now and then in life, nice things happen - totally unexpected things which make you feel life isn't so bad after all. May 4^th was one such day. Michael and I had been to the Marsden and were on our way into the Royal Grammar School. Having missed lunch, we popped into MacDonalds in Guildford High Street. As we left, Michael saw someone familiar outside the restaurant. I had introduced Michael to the television sci-fi comedy 'Red Dwarf' several years ago, and he was hooked instantly. He knew half the scripts off by heart. So when he saw one of the stars outside he wanted to say hello. I walked away. 'I do NOT ask people for autographs!' I said - and left him to it. He walked over to Craig Charles - for it was he; star of 'Red Dwarf' and 'Robot Wars' and Michael's hero!

'What are you looking at?' said Craig Charles. 'You,' said Michael. 'Do you know who I am?' asked the man? 'Yes,' said Michael.

'I don't know who you are,' said Charles. 'That's because I am travelling incognito….' Said my son. And Craig Charles laughed. I think he must have realised that Michael wasn't well for they had quite a chat before he moved away. Michael was on cloud nine. He moved up to cloud ten when someone we knew, who knew Doug Naylor, got in touch with Mr Naylor, the programme's creator, and several parcels full of 'Red Dwarf' goodies arrived for Michael. He was just ecstatic.]

From Michael's diary, May 4^th:

"Went to the Marsden for a blood test. Then went to school for one lesson. Me and Mum went to MacDonalds afterwards and when we came out, who should we see but Craig Charles, so I got his autograph.'

[This is almost the last entry in Michael's diary,. He stopped seeing it as necessary or relevant, I suppose.]

MAY 13^TH(website)

After the entry for 29/4, we started to unravel plans for this term and to face the prospect of another operation. We went back to see the consultant last Monday expecting to discuss a date, and in fact were told that the neurosurgeon who operated on Michael back in January had now seen the scans and was of the opinion that it too soon to operate again at the moment. This doesn't mean he doesn't need it, just that his brain is currently still recovering from the effects of the radiotherapy and the surgery and there are still changes going on. Michael was not particularly pleased by this, because he trusts his oncologist, and if he feels there might be another tumour in there then Michael wants something done about it. We were told that the surgical team felt there was every reason to suppose it could be scar tissue and that it would not hurt to wait for a while. Michael will have another scan in 8 weeks time and if the white mass we saw on the MRI is still present at anywhere near the same size, then everyone is agreed that an operation will be needed then. So this has necessitated a huge rethink  - again.

Unfortunately Michael has not been feeling well, either. He is feeling sick all the time and this week actually started vomiting. As a result he won't eat or drink unless coerced to an extraordinary degree, and this has become a source of real concern. He's taking in fewer than 350 calories most days and the medics feel that if things don't improve, then he will have to be fed by naso-gastric tube. This has scared him, of course, so it's been agreed to give him 2 weeks to try and up his intake. Sadly at the same time he seems to have become depressed or at least so lethargic that even moving around the house takes more energy than he can find. Again, we have been told that this could still be the late effects of radiotherapy and not to be surprised if he starts to sleep for nearly 14 hours a day. We are still anxious about the mark on the scan, of course, and hope this horrible week can be put down to drugs etc and not down to tumour.

 The Saga of the House Move is even more traumatic; at a time when we are told houses don't even appear on the market before being sold, ours is the house proving to be the exception to the rule, and we've even taken Michael out during viewings so as not to frighten the horses. Actually it's more to do with the agents than us, I think; Graham has gone into Stress Mode as a result of which the For Sale board finally arrived at 10.45 one night. We have found a house which we love and which would be perfect for Michael but the vendor wants us to complete within the next 30 seconds so I see it all unravelling very swiftly and then it'll be tears all round. So if anyone wants to buy our house please get round here PDQ. All in a good cause.

Hope this long update will get me off the hook with you all. This week we have more blood tests, a few heavy sessions to try to get to the bottom of the sickness saga and possibly starting the next round of chemo. On a nicer note, Christopher's school is having a huge fundraiser for the UK Brain Tumour Society at Eton in July, at which Princess Alexandra has agreed to be the honoured guest. Michael has been asked by Chrissie's Headmaster to be the other honoured guest and to present flowers/make conversation etc. Really nice. And if he's too ill then his little brother is Number 1 reserve. Expect an 'accident' in the car park that night.

May 23^rd;email to Sandie

Dear Sandie,
Another day on the ranch. Michael has been about the same today in terms of mood but he did manage to eat a fried egg and sausage for lunch.
I was very grateful for both your letters - sometimes I just need to say how I feel to people that I know and understand how I feel. I rang the hospital this morning and I'm going to take Michael to see the consultant on Thursday. He's just not himself but I'm not sure how I'm going to put that across - I'll start with the physical symptoms and leave them to ask the rest, I suppose.
You know that Michael has decided he really wants a dog when we move. He's chosen the breed - a Keeshond. Like a samoyed but greyish and bigger. VERY hairy! We went to see the dogs today - Michael thought they were absolutely terrific, of course, and Christopher was on the floor covered in dog within 30 seconds. They were full of fun and Chrissie got stuck right into playing with them. His coat needs a good grooming now! Fortunately the owner has no puppies at the moment or else you could have guessed what was going to happen.
Afterwards we went to see my grandfather's wife who, by coincidence, was moved into a Hospice near the breeder last week. She was asleep when we arrived - she is suffering from myeloma - so we didn't stay. What surprised
me, given the fact that Michael had asked to go and see her, was the fact that Michael was obviously quite upset about it and asked me if I thought he'd end up there or somewhere similar. I said if it came to that it
would be up to him. Shows what's on Michael's mind though. Anyhow, tomorrow he's supposed to be playing in a concert. Hopefully he'll be up to it. Christopher is off up to London for the day with his Confirmation group - an excuse for an outing but never mind, he'll enjoy it.
Bj

May 24^th:email

Dear Sandie,
I went out last night with a couple of friends. While I was out, Christopher snuck downstairs for one of his post-bedtime snacks (!) and Michael was sitting in the kitchen crying his eyes out. I think he's clinically depressed as
opposed to just a bit fed-up; that and/or a combo of everything. Graham tried without success to cheer him up - he said everything is awful and he doesn't see much point in trying to fight on feeling like he does. Then at
8am this morning the phone rang to say my Grandfather's wife (the one in the hospice ) died this morning. This has shattered Michael - he was very fond of her but I think the death of someone he knew from cancer since he's
contracted it himself, and having seen her yesterday, is particularly scary for him.

Anyhow, he fell asleep in a chair at school today, and then slept in the nurse's office until I brought him home, and he's in bed now. I go back to the hospital tomorrow and I think I'll say we really need help with whether this is a treatment thing or caused by the disease. Hopefully the latter.
 
Still dithering about the puppy. The Keeshonds were so gorgeous but this lady won't have any more till November and Michael is worried that that will be too late….And what's wrong with my choice of 'Widget' as a name, anyway?
 
Best wishes and warm fuzzies,

Bj

May 31^st(website)

The last two or three weeks have been very traumatic for everyone. Michael has felt less well than at any point since after the surgery, really. He coped OK whilst on the chemotherapy, but once he'd come off it he started to feel nauseous and then sick, and started vomiting without much warning, particularly in the mornings and evenings. We went back to the hospital, where everyone agreed that Michael didn't look at all well, and gave him more anti-emetics. Unfortunately by this time even the thought of food was making him feel ill, and as a consequence he wasn't eating anything and was fast losing weight. We went to see the dietician and the psychologist, both of whom recommended feeding by tube to take the pressure off the constant nagging (mostly by me ) to make him eat, which was making the situation worse. Michael was understandably very resistant to this, so we made a deal by which we would keep a food diary of EVERYTHING (except toothpaste!) which went in his mouth for 2 weeks. That's up later this week, and he'll be weighed again to see if he's managing to sustain his weight at all. I've done as I was told and left him to eat as and when he wanted. As a result he survived for the first week on a few Pringles and a couple of Frubes. This last week has been a bit better but still nothing like the 2,500 calories a day he needs. At the last count he was taking in about 300. He has also started to suffer from total exhaustion, sleeping once or twice in some days, and falling asleep at school. This is probably due to the after-effects of the radiotherapy, and last week he was put back onto the steroids in the hope that it will lift his mood, keep him awake and help his appetite.

At the back of our minds is always whether there is a more sinister cause for all this. The next scan is on July 4^th, which will be even worse than the last one for being nervewracking. Over half term we have been to France for a few days. For the first 24 hours, Michael was very, very tired and distressed; we had a long drive to Graham's vineyard ( well, where he rents a row of vines ) not helped by being in a Paris traffic jam for hours. We arrived at the hotel at midnight, which was just too much for him. The next day we moved on to Futurescope, and after a long rest he was able to enjoy that, but again we had to pace things very carefully indeed.

His hair is starting to grow back in a couple of places!! That will cheer him up a bit, but I have to say that at the moment he looks very frail and sallow. He has found walking a huge effort and he has spent most of his time lying down and resting. Still, on June 7^th he will be what the Americans with this disease call a 'five month survivor'. I can't believe it's been that long, though time tends to stop under these circumstances, but with this particular tumour every month survived, especially in Michael's circumstances where he has no real deficits and is still definitely 'Michael', is a cause for celebration. Many people with gbm don't get nearly that much or, if they do, are blind, deaf or paralysed. We can't say this will last; this last fortnight has been awful because he has seemed so ill, but today he seems much brighter again so hopefully it was a blip and not a trend.

We have not sold our house yet; the house we wanted has now gone because the vendor took another offer of a let. This has really depressed all of us -  but particularly Michael, who really wants to move while he is still well. We very much wanted to be settled quickly so that he could have a peaceful and happy summer, and this has upset all of much more than we expected.

June 12^{th(web site)}

I think maybe things have been a little bit better since I last updated you from the point of view of how Michael is - and worse from every other point of view. He is back on the chemo, but as a result of juggling the timings of the medication and the anti-sickness pills, has managed without any vomiting! He is still feeling sick a lot of the time, but he is keeping his food diary still, and he is managing to graze on crisps and things during the day even though he doesn't often eat what you or I would call a meal. Last night he ate a whole pizza, though, in a restaurant, no less, so that was a big plus for the week. Since being back on the steroids he is definitely much more cheerful and positive about things, and although he is still getting very fatigued he is able to do much more than previously - including school exams, much to his chagrin. He could have done more work than he did ( by a factor of several hundred per cent ) but those of you who know Michael at all well will know that he has always been a lazy toad. However, he is also a very intelligent lazy toad who won't let a chance of a good skive pass him by!!

His hair is now visible on most of his head, apart from over the tumour site which had by far the most radiation. There is a chance that it might never come back there - but since 'never' might not be a long timescale we won't worry about that yet. Today he nearly gave me a heart attack in the car on the way to school. He suddenly felt 'that funny feeling' from the very beginning of all this in December. Thank heavens it was only for a split second, and not accompanied by strange smells or noises like before - and probably nothing at all - but it makes you stop and think for a minute. The scan is three weeks tomorrow and such a lot rests on it.

Yesterday was Christopher's day, though. He was confirmed at Evensong at Windsor Castle. The sun came out, the music was wonderful and Christopher's family and close family friends were gathered together to make a fuss of him. It was lovely and I think he really enjoyed it. Michael struggled to keep awake throughout the service, but at least we were all there - another plus. The next big occasion is the concert at Eton on July 7^th - Michael has been asked to join the drinks party in the interval to talk to Princess Alexandra, and I think he will prove to be an excellent ambassador for the Brain Tumour Society. Hope he doesn't drop the bouquet at the end of the show…!

STILL no buyer for our house - every other house in the galaxy has been sold. I'm beginning to take it personally. On Friday we lost the house we wanted - £1000 poorer and back to square one - but that was comparatively good news compared with the other news of Friday - that Eric, Michael's French oncologist, has accepted a job in Toronto. Michael is very distressed by this, as are we all, since he is that rare thing - a brain tumour expert, and just about the only person who has given Michael any chance at all of surviving the gbm. Even Eric told us that most medical people would say Michael is absolutely certain to die from this, but he thought that Michael stood a chance with aggressive treatment. As time goes on we are part-relieved that Michael seems to be so well, and part-terrified that he is about to deteriorate. We need some good news…….

June 13^th: email to BT List about positive thinking:

"I have no idea whether positive thinking is proven to help. I can only tell you that on days when Michael is feeling positive, the whole world feels an OK place to be in for me too. And the converse applies. Michael has certainly drawn huge comfort from the fact that his oncologist at the Royal Marsden has told him he believes Michael IS the one in 20 who can survive a paediatric gbm. Not might be, but IS. Of course, if he's wrong Michael won't
be around to complain about it, but that kind of thinking has kept Michael going and so far with no deficits.
That's why I'm so sad that this doctor is off to Canada very shortly.
I might then be able to tell you how much difference it makes.
Good luck!!
Bj m/o Michael, 14, gbm"

June 19^th:email to Baggies:

"Last night was really hot here - 16 degrees all night and today the hottest day for 25 years. Poor Michael is finding it too much - I think his internal thermostat got taken out by the radiation - but today we went to Garter Day. It's the day when all the Garter Knights and most of the Royal Family go to the Chapel at Windsor Castle and give thanks for there being an order of the Garter. Christopher of course was singing in the choir - 102 degrees in shirt, tie, cassock and surplice - but I was given tickets for Michael and me to go, and we were right by the door in the cool-ish breeze. As it turned out we had the best possible view of the Queen Mum, Charles and Anne as they left - Michael was pretty much holding the door for them! So he feels he's had a nice day but certainly a hot one. How that old lady managed in all her robes and hat I can't imagine. I was as near to nude as possible and I was still wilting. Michael was very smart in his blazer and structured haircut!! Don't think Prince Charles knew what to make of it.
Night night!
Love Bj

June 21^st(website)

We went back to the hospital today. Michael's blood count seems to be much better than last week, which is good, and we were able to have a chat with Eric. He said to Michael, 'I heard that you were very cross with me as I am leaving' - in such a way that meant Michael couldn't be cross even if he wanted to be! He also said that his last clinic is actually July 3^rd, but he is coming in on July 4^th to see Michael's MRI ' so the very last dictation I shall do will be for you!'. The less cheerful thing is that he seems very certain that whatever was on the last scan will still be there, and he feels that we should then push hard for it to be removed. The scan will probably be sent to the States for another opinion but he obviously feels strongly about it. He asked when we are due to go to Florida but he didn't seem to think flying so soon after a brain surgery would be a problem. Possibly not  - but then he won't be on the plane panicking with me!!

At the moment I can't begin to think about it. We have to wait and see what shows up, Michael seems not too bad - he passed all his exams except Chemistry (which appears to have been so bad it wasn't even marked…). But since he hasn't had any science lessons at all since 1^st December I suppose I should be grateful he got 60% for Physics and Biology. Imagine how well he'd have done if he'd done some work! He is still very tired and the hot weather did nothing at all towards his recovery. He does seem to be slowing down a bit, but that's probably a combination of all sorts of things. He finished the 2n^d course of PCV today, so I will watch carefully. This is when he started to feel so ill last time and now we are weaning him off the steroids.

Email to Baggies, June 28^th:

Dear Gang,
I HAVE HAD IT UP TO HERE WITH STICK INSECTS!!!!!!! I have just picked NINETEEN off the curtains and walls in my study and I have absolutely NO idea why I should be forced to share my work environment with several hundred wooden toothpicks with the charisma of dental floss and the biological development of the inside of a toilet roll tube.

Michael started off with five about a year ago. He's kept all the eggs for six months and Lo! It came to pass that several hundred children were born. Michael is obviously to house building what Mozart was to rotation crop devising because these things are in an indoor propagator which he promised me had the ventilation shafts SHUT. Every morning I find one stick insect version of Steve McQueen re-enacting the Great Escape up the curtains, but I can live with that. Now they're all on the rampage. It looks like an episode of a Hitchcock movie in here and I am NOT amused. No wonder we can't sell our house - I should think we'll have the Pest Control van here in a minute and before you say anything, Sandie, I am NOT frightened of them, not even of the big ones that are 4 inches long. But if I wanted to be an entomologist I would have studied the subject at University. I've given Michael a few minutes to sort this lot out and then I start stamping on them. Then I shall take the container down the garden and liberate the lot onto the privet hedge.

So when you read on the news that a new breed of SuperSticky the size of cats is moving through the sewers of Southern England and eating babies,remember:
YOU HEARD IT HERE FIRST.
Bj, cross and sulking.
I feel MUCH better now.

[Michael's collection of stick insects remained a bone of contention between us until we moved!]

[Michael's MRI was due on July 4^th. The build up to an MRI is incomprehensible to those who have never experienced it. Because brain tumours are so often symptomless until the last minute, the only way you can tell whether or not it is regrowing in the early stages is to have a scan done. Hence you know that the results are crucial for your peace of mind. We had been waiting with increasing anxiety for this scan as we knew the likelihood of tumour regrowth from this point onwards was so high.]

July 3^rd(website)

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.

[ From the time that Michael was first ill, he said that when he was well enough, he wanted to play 'The Swan' at a school concert. He said, 'There won't be a dry eye in the house.' Little toad! Of course, he was right. And he never played at school again. We have a recording of that evening, and the poignancy of this sick, half-bald boy playing the beautiful tune of the swan whose song is at its most beautiful just before its death was not lost on anyone. Nobody who was there is likely to forget it. I am in tears thinking of it now…..]

July 4^th(website)

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 2^nd 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.

 

19) The two brothers, side by side at Christopher's school , July 2000

Email to: Lisa

Sent: Monday, July 10, 2000 8:41 AM

Subject: Re: Re: OT: DECLARATION OF INDEPENDENCE -- USA

Dear Lisa,

I am now seriously behind with my mail…..I know just how you feel!! Thank you for all your messages over the last week. It has been so frantic here I've barely switched the machine on other than to send out emails about
Michael's MRI, but haven't had the chance to sit down and read the incoming ones. That's also because I've been trying to cram 6 months' work into the last week of term, plus end-of-year concerts, meals, leavers' services etc
etc.

So here I am on Monday morning coming down to earth with the summer stretching ahead of me. The good news being Michael doesn't need an operation, of course, but I know that the long term is as grim as ever it
was, if not worse. And as someone said to me yesterday, it's the not knowing. The constant strain of praying for Michael to be the one that makes it but knowing how remote that chance is, is starting to cut through to me now. And somehow I have to get a grip on myself and tell myself to live for today and not for tomorrow - and I have never been that sort of person. I need to be planned out for weeks ahead, but if I live like that now I'll not be able to appreciate the 'today' because I'll be too busy worrying about the 'tomorrow'.

I was asked recently to ring a musician here in England last week. His son has just been diagnosed with a brainstem gbm, aged 8, and it's inoperable, untreatable pretty much and they've been told he has 6 months at
most. I don't think he feels able to join the List or really to do any research on this; but what I found incredible was that he said he felt his situation was easier than yours or mine in that they know what will happen and they can prepare for that together, rather than in our house where Graham and I seem to be like a weather house - he's positive when I'm negative and vice versa - the defining thing being that we swing between poles of thought like a rubber ball. ( Mixed metaphor there - sorry!!).

So now we have the summer to look forward to with no immediate operation.

And you're right, one can spend far too much time at the screen and keyboard but sometimes it's the only way I can get through the day, by talking to other people who understand and by reminding myself that on this List most people are a hell of a lot worse off than I am. Which is both good and bad - good because it stops me moaning and bad because I then get anxious about what the future holds for us.

Take care and have a wonderful summer,
Love Bj

To: Diane

Sent: Monday, July 17, 2000 7:29 AM

Subject: Re: Followed by Wednesday

We went to Evensong at St George's Chapel last night - it was Christopher's last service of the term - and I was surprised and upset to find Michael in tears beside me. The anthem was a favourite of his when he was Head Chorister last year. His voice hasn't broken but it's certainly not what it was, and I think the thought of how wrong everything has gone for him made a rare impact on him because of the music. I was very sad to see it. I can only think of a couple of occasions when it has really hit him hard, though, so maybe he is doing well overall.
In addition to all this, we went out on Sat afternoon to hear Christopher in a concert - while Michael wandered around the shops in Windsor on his own  - and left the house looking like a pigsty. Murphy's Law - the estate agent brought someone round to look at it and they really liked it. Obviously I've been going wrong by tidying up!! So now we have to find another house to add to the fun.

SO, we arrive in Kissimmee on August 4^th till the 14^th, then down to Marco Island from 14^th - 24^th. We are staying in a house in each place so when I get the address, I'll let you know. We're hiring a car etc so we can meet
you somewhere or you can come over to us and watch the English screw up doing a barbeque.
Be in touch later,

 Bj

July 23^rd(website)

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 young charity which is 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 received a handwritten letter from the Princess - handwritten envelope included - which he will treasure, I'm sure.
Michael meeting Princess Alexandra and recieving a Brain Tumour Charity cheque 

As we got into the car afterwards, Michael, who must have been very tired by this time, suddenly said to me, 'I'm making a difference, aren't I, Mum?' And I thought, 'Yes, kiddo, you ARE.'

Anyway, he hadn't finished there - Michael managed to wring another £120 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. 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………….

From: G & B Norton

To: Lisa

Sent: Wednesday, July 26, 2000 7:26 AM

Subject: Guilt….,

OK, let's think about this one. Michael was a twin. I lost his twin in pregnancy and thought it was almost
certainly my fault; I'd taken an aspirin for a headache, I was eating pilchard and salad cream sandwiches - all that sort of thing. Then Michael was born - and he had a serious heart problem. He was born with it, and the doctor thought maybe that was why the twin had died. Michael was up for a bit of a life, though, and he made it. So he had emergency heart surgery at 8 weeks. And for the first 6 months of his life I just felt AWFUL. I was sure that Graham blamed me for Michael having been so ill and for his twin having died.

At around 9 months, I started to cheer up - just in time for him to get his first dose of septicaemia. And the next two doses, too. Then in his first week of school, I relaxed a bit. I was actually sitting in the vicar's house telling them that we'd been told if we got Michael to school he'd probably live to be 100. Then the phone went. Someone remembered I'd said I was going to the vicarage and they thought I ought to know the ambulance had just left the school with Michael in it. He'd fractured his skull in the playground. And it was only his 4^th morning at school. And I won't even begin to bore you with the next few incidents.

In other words, I think that there are 3 stages of birth - baby, placenta and guilt packet. I don't think ANYONE can tell you for sure what happens to your baby in utero, and what's more I don't think there is a mother
anywhere who wouldn't believe she was guilty in any case. It's part of our job to protect our babies from harm, so if they meet with harm we take ALL the rap. Dad's don't - it's not in their make-up.

So Lisa, you KNOW it's not 'your fault' your child has a brain tumour. What you also know is that somehow you should have been able to stop it. But you couldn't. And neither could I.And I bet your little peach loves you to bits. And to my mind, a kid with a brain tumour and a Mum who would lay down her life out of love for him is a hell of a lot better than one without cancer who's Mum doesn't give a damn.

Doesn't detract from how you're feeling - just wanted to add my 20p worth .Been there, got the hairshirt….
Love, Bj

Email to an American friend whose 5 year old daughter was diagnosed with gbm in the same week as Michael:

To: Paul

Sent: Monday, July 31, 2000 9:55 PM

Subject: Alannah

My dear Paul and Sue, It is the very last thing I want to do to intrude upon you at this time, but
we are going to Florida on Friday and we will be away - and off line - for three weeks. It is very, very important to me, to Graham and to Michael and Christopher that you should know that we start and finish every day by
thinking of you and of Alannah, both in our prayers and by checking the post to see if there is any word on how she is doing. We feel very close to your family in so many ways. We are all fighting gbm.We were all pitched into this in the same week. We, like you, are off to give our boy the holiday of his life. Unlike you, we have had a chance to see Michael restored to 'apparent full health' - possibly not for long, but for long enough to give us some fine memories for whatever is up ahead. And you have given unstintingly of yourselves in writing to me and to Michael when things have not been going well here, despite your own battle, which has been far more intense and desperate than ours.

It is cruel beyond belief that a little girl should have to give up her life so early on. I try to cling on to a vaguely religious belief that a life is never short or long, it just is a length unto itself, whether it be 10 months or 100 years. Reading about Alannah and seeing her picture has made me think again about all that. But one thing I'm sure about, and that is, that even if the prayed-for miracle doesn't happen, Alannah has made a DIFFERENCE. She has, for a start, made one family thousands of miles away stop what they are doing and focus on her, and her alone, for a short time of prayer every day. And when you multiply that by the number of people on
the List, that's an awful lot of care and prayer for one little girl - she's made that much difference just to people I know on the List. So when you multiply that by all the other people that know her, and that know of her -
everyone I've told about her in England and asked to pray for her, for example, - you can bet your bottom dollar that if prayer and love take up space, then she's going to need a VERY big sofa in heaven.
My heart is aching for you, and for Sue. I pray that Alannah will gently fade away with you enfolding her. If I could do ANYTHING, anything at all, I would. But I can't. So I'll offer you our unstinting love and prayers, and
hope that you will be able to bear this somehow together.

Michael would like to write, but just can't. He is so sorry and asks me to give you his love and his prayers.

Bj

From: G & B Norton 

To: judy 

Sent: Thursday, August 03, 2000 7:51 PM

Subject: update on Michael

Dear Judy,

Thanks for phoning yesterday - it was lovely to hear from you.

Well, we spent a day at the Marsden - usual thing; Michael's blood count is down and so is his weight, tottering to 36kg with his trainers on. I can now get my thumb and middle finger round his upper arm.

We saw the Professor (the paediatric Big Cheese) today, and he is very,
very different from Eric. We asked him about the MRIs, and whether a more aggressive approach would increase Michael's chances, but he said the standard treatment is to finish 4 courses of chemo, have a scan and then
wait and see. In other words, that more aggressive treatment isn't appropriate. And he may well be right, but the trouble is that now we just don't know. Still, nothing new there! He also said that Michael, whilst
thin, isn't malnourished or emaciated yet, and what they would do is to watch and see if this is still a 'trend'. In fact, that's obviously the Marsden's general approach, to watch and decide on the trend - although he
did say that if the tumour were suddenly to reappear and be growing, they wouldn't just sit back and watch it but would intervene somehow.

I'm not knocking it at all, it's just so different, and Michael doesn't feel comfortable with it at all. Still, we'll see what transpires after the next scan, which will be at the end of September/beginning of October. He DID say that he wouldn't expect there to have been any regrowth yet, anyway. (is that good or bad? Can't decide!). Anyhow, we have to go straight to the Marsden after landing back for his Vincristine injection so we'll see
if anything is different then.

I hope you are relaxing and enjoying the children knocking seven bells out of each other, as is happening here. I've just signed Michael up for a one day golf course on Aug 29^th .He asked to go, so I'll try it!

Love Berrie

From: Michael Norton

To: G & B Norton Sent: Tuesday, August 29, 2000 7:12 PM

Subject: Fw: DebsFunPages 8/29/00

Mum-I think you are getting to this stage

Michael

Signs that it's time to join e-mailers anonymous:

You wake up at 3 a.m. to go to the bathroom,and check your e-mail on the way back to bed.

You turn off your modem and are suddenly filled with a feeling of emptiness, as if you just pulled the plug on a loved one.

You decide to stay in college for an additional year or two,

just for the free Internet access.

You refer to going to the bathroom as downloading.

You start tilting your head sideways to smile. J

[We went off to America for our Florida holiday on August 4^th. I was beside myself with anxiety over the whole thing. In fact, it was me - with a swollen ankle - and my friend Andy - with acute earache - who had to visit the doctor. Michael was just fine. He had a wonderful time, although he had to pace him very carefully. The Disney and Universal studios were absolutely wonderful. Michael and all our family had free tickets, wheelchair access and priority in most queues. He was as happy as I ever saw him. I was still beside myself with anxiety - but I loved watching him.]

August 26^th(website)

We're back!!! And we have had a WONDERFUL holiday. Michael coped better than the rest of us with the heat overall, and remained really very well until the last couple of days. I could bore you for hours with all the details, but essentially we have had a complete break and I really think we all forgot about illness altogether. Michael used a wheelchair to get around the Theme Parks, and to be honest that was very sensible with 100% humidity on many days and a temperature that never fell below 90. He was most unhappy when Christopher was pushing (!) but apart from that he accepted it well. The Disney Corporation have got all this off to a fine art, and we had preferential treatment on nearly all the rides, although even when we didn't (at Universal Studios, for example) the queues weren't ever very long. The longest we queued was about 20 minutes. Most rides had a separate wheelchair entrance, and the fact that Michael was able to walk meant that he was able to experience all the rides properly once we'd parked the chair. Christopher and my friend Andrew made a pact to try out all the thrill rides, and to my amazement that is exactly what happened. Christopher has been on rollercoasters that made me sick just looking at them. You wouldn't believe the video footage we've got! And after all that, he was still able to eat his way around Florida.

The first ten days were very tiring - we spent three days at Disney, three at Universal and one at SeaWorld, with a day at Cape Canaveral as well, plus one day at a water park where the others conned me into going on a white-knuckle water ride, clinging on to a raft for dear life - and remember, I can't swim . The water was only about 6 inches deep but that's enough for me!! Each day was different but we all learnt lots (especially at the Animal Kingdom and at the Cape ) as well as having fun.

 

But by the end of the 10 days we WERE worn out, and we were relieved to arrive at Marco Island. We had a palatial house, even by USA standards, with a pool and our own private jetty on the inland waterway at the end of the garden. Even more exciting, outside the front door were three nests for burrowing owls, and a highlight of each day was to see the owls sitting on the posts by their nests ( they were roped off as the owls are protected) watching us. Michael has taken 10 rolls of film with his SLR over the whole holiday, and the wildlife provided much material. We took a tiny boat trip to go shelling, and to our delight we were joined by a couple of dolphins and a manatee. Michael was in his element taking pictures and collecting shells. Christopher was in his in the pool and the sea, not to mention the fact that we had the largest TV in the world in the living room. More like a small cinema, really. However, he was feeling the lack of thrills by Wednesday, so he, Graham and Andrew hired a waverunner (Jetski) and set off into the wide blue yonder as I manned the video and wondered if they'd get back in one piece. Michael didn't want to go, and he sat on the beach very quietly until he suddenly complained of a strange smell inside his head and a very dizzy feeling. It passed quickly, but once the waverunners had returned we took him home. The next day was our last day; we drove back to Orlando and spent the afternoon at DisneyQuest, a virtual reality centre where Christopher designed 3 rollercoasters to his own specification - and then got in a simulator and rode them. Yes, THREE . I watched the simulator rotate through every plane imaginable - often several at once- and I still don't know how he ate pizza afterwards. We then went to the airport; Michael had a bad headache on the way home, but hopefully that's just the pressure in the plane. None of us wanted to return - we really have had a lovely time.

 

Michael went to the Marsden with jetlag…. He started the final chemo while we were in Marco Island with no side-effects, but today his platelets and white blood count are the lowest they have been. He's still painfully thin - he looked like a starving refugee on the beach in his swimming shorts - but he is very brown and looks extremely well, so things aren't so bad!

From: G & B Norton

To: <BRAINTMR@MITVMA.MIT.EDU>

Sent: Tuesday, September 05, 2000 3:18 PM

Subject: Re: Trip for John Lloyd

Dear Sheila,

We've just got back from 3 weeks in Florida. We decided while we were in Orlando to use a wheelchair for Michael so he could save his energy for the rides; there's so much walking at the theme parks.

It really upset me to see him get in on the first day. We've never needed it before. But he soon got into the swing of things and my 11yr old took it upon himself to make sure his brother got the best view of everything,
pushing in a forthright manner and shouting, 'Gangway! Wheelchair coming through! Take care there, brain tumour moving in!' and other cringe-worthy things. But he made sure that Michael could always see everything that was going on and he was (one nasty, unofficial 'thrill ride' in the chair notwithstanding! ) very sweet to watch.

At the end of the 10 days, we went down to the Gulf Coast and the chair wasn't mentioned again. Michael just took things at a leisurely pace - but he managed to walk the 2 1/4 miles round the Everglades trail! I think it's a very sensible move and doesn't mean any more than a good view for John Lloyd!

Bj m/o Michael, 14, gbm,

dx/sx 1/00, 33x radiation Feb 00, started 4th and final PCV Aug

From: G & B Norton

To: Robin

Sent: Thursday, September 07, 2000 6:45 PM

Subject: Kids with big hearts

Dear Robin,

The first thing the midwife said when Michael was born was, 'This one's been here before' - and often since then I have found myself thinking that he knows too much for a child. His heart is bigger( well, it's got a Teflon patch in it! ), he's graver, more serious and perceptive. I often wonder if he is actually an adult sent down here in a child's body with a message that has nothing to do with me. He's no angel, mind you, and our relationship, like so many mother/elder child ones, has been fraught with screaming matches (me) and sulks (him). But the concept of him not being here for an adult life doesn't particularly SURPRISE me. It DEVASTATES me and I can't think how I'm going to cope - but in some ways, because Michael has so often been so ill, it's as if God has let me see him through childhood and into maturity already. And my Mum said to me, before she died, that it is never a case of a life being too short; it's always a case of a life being completed, that you die when your work here is done. I don't know if I agree with that, but she said it was like soap bubbles. Some bubbles are big, some are small, but they are all perfect unto themselves. And I think that very ill children have this patina over them, whether or
not you know they are ill, which makes them so special and stand out from others. And our kids go in that bracket. A credit to themselves and to those who know them. Now I'm off to scream at Michael to stop messing about and d do his homework......!!!!

Love Bj

From: G & B Norton

To: Robin

Sent: Thursday, September 07, 2000 9:35 PM

Subject: Re: Fw: Lots of things!!

It's been a tough day here, too. Michael's done his 2nd full day at school and came home absolutely wiped out. He lay on the floor and shut his eyes for a while. Mind you, he wasn't helped by the games staff saying he could
do rugby or cross-country running. He decided, wisely, on the run, got 500 yards and had to stop and turn back. Mind you, he's got a lot of guts for having a go!!

He was given, as English homework, an extract from one of Maya Angelou's volumes of autobiography and told to write about finding himself in the middle of a new experience. He has written about being in the middle of a focal seizure, and how everything - sounds, smells, sights are completely different. How you know it's you and your body/brain, but somehow your brain is inventing a whole new world of sensations for you to live in, and how odd it  is that noone else can share in it.  First of all I was incredibly moved, but then we decided that by tomorrow
he'll be in the local police cell for drug abuse - the English teacher is new and when he reads it he'll probably think Michael has been on a heroin trip!!!

I think I might have to scale down the level of homework or the number of hours. Michael has been a bit euphoric; he sat giggling to himself over his physics homework last night ( nothing to how much the teacher will giggle
when he marks it, mind you ) and I'm just a bit concerned about that. As I was saying to Diane earlier, his ENT consultant took the last MRIs away for a 2nd opinion, and this neuro-radiologist is a bit concerned about a large
area in the middle of the brain which showed enhancement, and says we need that carefully checked on the next scan on Oct 5th.

Meanwhile, Michael himself sails blithely on. Apparently tomorrow is weight-training in the gym. For Michael, that will involve lifting two corn flakes and a packet of crisps..... Time for bed!! Love to everyone, and especially to all kiddies back at school and all Mummies sighing with relief and getting the gin out.

Bj

[Things were still relatively good at this point. Then comes the very first sign, looking back at my notes here, that all might not be well……..]

From: G & B Norton 

To: Lisa 

Sent: Thursday, September 14, 2000 9:03 PM

Subject: Re: Michael/Jennifer

Dear Baggies,

Well, Michael's had his last chemo injection. His blood count is still down but that's nothing. But he told me today he forgot a lesson. He just went straight from his first lesson to break, then wondered where everyone else
was. Yesterday he forgot a piano lesson and then he didn't know what day it was, looked at his timetable and went to Monday's lesson, not Wednesdays. Today he forgot where he was going coming out of a room at the hospital, and then he couldn't do the crossword. At all. I told him one word was 'sceptically' and he wrote 'sceiiiially' - and thought he'd written it right.

Now before you all tell me you couldn't spell it on a good day anyway(!) , Michael CAN. But at the moment odd things are happening. Is this the start of the radiation damage they warned us about? Or is it the unthinkable? Or
is he just tired. Please tell me he's just tired - I do daft things when I'm tired, so probably that's all it is.

No headaches at all. He's just very, very amenable and slightly 'dopey' - all smiles and willingness. Not very teenagerlike.

NO. There's enough to worry about on this List already and compared with most of you we are sitting very pretty indeed over here. I'm going to stop worrying, make a coffee ( CAWfee to you) and go to bed……………..
Love Bj

September 23^rd(website)

Michael is back at school full-time since September 7^th. We are still reviewing this, because he has been unbelievably worn out by it. Of course, who ISN'T tired at the beginning of the school year, so I haven't jumped in too quickly, but after his first games lesson in which he rather foolhardedly decided to set off on a cross-country run, (!), we have decided that maybe sport is best left alone for a little while. On the other hand, he is about to start a course of golf lessons, which will give him a little bit of physical exercise and allow him to go out with Graham sometimes.

The problems which are worrying us at the moment are that he is finding it so hard to write. Even the shortest piece of homework takes him hours, and frequently he will write an incorrect word - sometimes a wholly inappropriate word - and not even notice. Occasionally his spelling will be bizarre to say the least, and, even more alarming, he is starting to misread words. Again, sometimes a totally unrelated word comes out. He has also begun to lurch to the left when he is walking. This might be a reaction to the Tegretol again, just as it was when he began taking it back in February, but at the moment we are not sure. The hospital have done blood tests and we have to wait for the results. His friends seem very pleased to see him back, but now that he is in his GCSE years, the form all go off to different lessons. This can be a problem for him, since several times he has forgotten where he is supposed to be, and if he then can't remember what day it is he can't even locate himself on the timetable! The staff are all being very good and patient and they know if Michael doesn't turn up that they ought to go and find him! On the other hand, his cello playing seems OK. He's back at Youth Orchestra and is planning on doing Grade 8 next term.

A lot will depend on the result of the next MRI, which is on Oct 5^th. We don't get the results till Oct 12^th because we don't have Eric to read them for us. What we have to find out is what has happened to that large white patch that was on the last MRI. We hope that it is radiation damage - but this week we were told by the registrar ( STILL no sign of a replacement brain oncologist for Eric ) that Michael's strange symptoms couldn't be radiation damage because he wouldn't have any. I hope she is as wrong as I think she is - because if there's no radiation damage then what the hell IS that white patch? Rather a lot hangs on that result.

The thought of all this stress and still no house move provoked Graham into booking us a few days in Paris for halfterm. Michael really wants to go to the Louvre, so we thought we ought to do it now. Naturally, within 4 hours of booking the hotel and train, we sold our house to a man with a first time cash buyer behind him who wants to move in within the next 6 weeks - ie right after halfterm!

This put us into a bit of a doo-dah, but we have now found a lovely house in Woking with a huge garden, even if it is not ideal downstairs, and so peaceful that we have decided to go for it. Those of you with astute memories will realise that the puppy is due to arrive that weekend, too. The pups were born 2 weeks ago but tragically they were born too early, and all the dogs have died. I thought that maybe there was a master plan to all this, but apparently the breeder has connections with a litter in Jersey, and has given us first refusal on one of these if we can get our move tied up in time. Now that Michael is off chemo and his blood counts are going back up ( at LAST) he can really look forward to the puppy, who is possibly going to be called (remember at this point that we have a cat called Jake) ELWOOD - on a mission from Dog. Only Blues Brothers fans will be giggling at this. If you don't think much of that as a name, I have had to veto Christopher's choices of Psycho and Vomit, though he still favours Rebel.

Christopher went back to school happily and has made a good start into the term, singing a couple of solos and even singing a solo on the new St George's Christmas Carol CD!!!!(available in all good Woolworth's at the end of October, folks). However, he was VERY unhappy to find out that we had bought a house before he had even seen it - quite rightly, since I had promised him I wouldn't do that. Sadly life didn't work out that way and within 48 hours we had accepted an offer on ours and found another. So I'm trying to treat him very gently.

I won't lie, Michael is NOT doing as well as we would like, but realistically he's a hell of a lot better than he might be. Oh, BTW, he has been asked to share a platform with some very worthy people to address the first-ever UK Brain Tumour Society meeting in London on Nov 6^th. And I bet he'll be terrific. What we are praying is that this deterioration is not the beginning of a long slide. Fingers crossed.

28^th September(web site)

Things here are not so good at the moment. Michael has become even more tired, which I would expect after 3 weeks back at school full-time, but more than that he has started to have more trouble with 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. 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.....!!'

30^th September(web site)

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 take him home for a rest and to bring 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 he's eating 4 Mars bars a day  We are being told to prepare for the worst.

I can't believe it.

----- Original Message -----

From: Diane

To: G & B Norton

Sent: Friday, September 29, 2000 10:59 PM

Subject: Going downhill

BJ, do you really think Michael's going "downhill"? It has seemed to me to be just radiation-related memory trouble (everybody on this list can relate). What is your gut telling you, or is that just a mother's fear about the upcoming MRI? He is in my prayers all the time. Whenever I take out my key ring I think of all of you! [Michael took Diane a keyring as a present when we met her in Florida in the summer}

Love, Diane

----- Original Message -----

From: G & B Norton 

To: Diane 

Sent: Friday, September 29, 2000 9:56 PM

Subject: Re: Going Downhill

Dear Diane,

Doesn't it just break your heart when you think how much YOU love YOUR Dad and want him so very much to be himself again, and then you multiply that by all the other people who are sitting by bedsides tonight desperately wanting the same thing? I'm amazed that the earth ever gets to turn round at all, such is the weight pulling it downwards sometimes. I'll be thinking of you as I'm awake in the small hours!

As for 'downhill' - well, it's a relative term, isn't it? Michael is staggering slightly, sometimes he stumbles, his vision is slipping in and out of focus and he is sweetly docile and amiable. Hopefully radiation damage, as you say - but definitely not the person he was when you met him - or at least only for 50% of the time. He looks very sallow and unwell now. Plus the boy who has starved himself for 14 years has today eaten three large Mars Bars ( admittedly I think the 2nd was because he had forgotten he'd eaten the first) and a whole packet of Pringles. I keep finding him in the kitchen eating. And yes I am very pleased about it - but something odd must be happening because I can't believe that a 'glutton button' ( I like that - must use that one again!!) has been pressed for no reason.
 
Now I'm off to bed. Suggest you do likewise at an early hour. We Baggies have to be ready to march into battle with at the first call....

Love as always

Bj

-----Original Message-----

From: G & B Norton

To: SANDRA NORTON

Date: Saturday, September 30, 2000 4:53 PM

Subject: Tears

Dear Baggies,

I don't cry ever, really. I suppose I've cried more in the last 9 months than in the preceding 40 years put all together, to be honest. Dad wouldn't ever let us cry - after his stroke he couldn't control his emotions really
so he wouldn't ever ever let us show ours. With the result that when my Mum died my sister and I were totally unable to deal with the fact that Dad broke down in tears all the time - he kept saying that it was a result of his brain haemorrhage etc but it was still awkward because Anneliese and I felt we had to be buttoned up. And I always am - although as I may have said when they carried Mum's coffin out of the church I was aware of this awful sobbing noise and it was a good 10 seconds before I knew it was me.

Anyhow, Michael went off to the Cathedral for the Old Chorister's Reunion Evensong today - he was the youngest by about 15 years but that didn't bother him - so I went to Evensong to hear them all. Michael was standing in the stall where he stood for 6 years, until he 'retired' in July 99. I could see this tiny waif, no bigger than the current lot of choristers ( smaller in fact) and you could see the geometric bald patch on the side of his head. He looked, frankly, like Tom Hanks in Philadelphia but worse. I watched him singing ( Alto and Tenor rather than treble - but he could easily have been a treble; it was a pride thing!) and all of a sudden it hit me , all that has happened since he last stood there. And I suddenly realised that the next time he will be in the Cathedral sanctuary will probably be for his funeral. And I couldn't bear it.

You, all you dear Baggies, have all been playing this game of Russian Roulette a lot longer than me. So I'm asking you - how do deal with it? Do YOU have days/ weeks when you think it's all hopeless, only to cheer up again? Am I (please say yes) just overreacting to the very first tiny setback we've had? Or is it just a natural up-and-down that accompanies all long-term major illness? It wasn't like this with my Mum because we knew she wouldn't recover from day 1. So although we were up and down it was still as part of a gradual descent. I am suddenly overwhelmed by a real overcoat of hopelessness. Very unlike me. Maybe it's the weather, maybe it's the onset of Christmas adverts etc and wondering whether I need to worry about Christmas this year. Maybe.....oh, I don't know.

Sandie, I know you often get the fear in the pit of your stomach. How do you cope? And however much I love Graham, he feels it differently but I think he's even more pessimistic than I am so we can't even lift each others spirits. I just can't face the prospect of long, drawn-out suffering. But it's all so unlike me I'm not sure where to start hauling myself out of it. Any ideas, friends?

Bj

----- Original Message -----

From: Lisa 

To: G & B Norton

Sent: Sunday, October 01, 2000 9:48 AM

Subject: Re: Tears

Dear Bj,

I just got back from my reunion, checked the mail, saw your message, and am now wishing that I were you, or another member of this precious list. I can't help thinking that if I were you, or someone else, at least I would
know what to say after having read your note. But you're not here with me, I am alone, and I will do the best I can to help you gain some comfort that you deserve so much. I hear you, I worry about you and Michael, and I wish there was something concrete I could do for all of you. In the meantime, I'll put the tea water on, you melt into my deep hug, then sit down, take a deep breath, and try to relax, okay?

I don't cry too often either, but Bj, tears are necessary at times, and I'm glad to hear you cried at your Mum's funeral. You needed to do that, rather than stay all buttoned up, but perhaps you already know this. If you're crying now, then go ahead - no one will tell or ask you to stop, but hopefully these tears will subside soon,so you can smile again.

I don't know the custom or tradition over there, or why one rarely goes
to the Cathedral sanctuary, but if, the next time, Michael does go there and it's not to sing, maybe it Will be for his funeral, but who's to say it won't be many years from now? And yes, tears will be a Given, even if he's 103. Believe me, I realize that there are many circumstances present which are causing you to think that this event may take place sooner, and this is all perfectly understandable. Michael is exhibiting added difficulties, you've read a lot of horror stories on the List and elsewhere, and we are all in great anticipation of the MRI, not to mention being anxious over having to wait so long for the results. You yourself are not feeling well, you are in the midst of a move, you have a family and a life, you are tired, etc. and all this adds up to major stress. Stress alone can do a major number on you, let alone what I've often said about upcoming MRIs, office visits, and procedures. Quite  ften, the combination of our imagination during the anticipation is harder to deal with than the results!

So, okay, let's talk about the flipside.... Michael has exhibited added difficulties, but was able to sing at the Cathedral, and he was the Youngest Old Chorister no less, and he made his Mum proud! You've also read a lot of success stories on the List and elsewhere, and we are all in anticipation of hearing the MRI results, because they could quite possibly be okay - yes! - or at least not what we don't want to hear. Anything less - yes - anything - thank you..... You're not feeling well, so we must scurry along the doctors and get you back on track, call in the movers to begin your new adventure, think about and dote upon your wonderful family, anticipate a lovely trip to Paris, and yes! contemplate Christmas indeed! Definitely!!! :O)

You asked some questions which I will try to answer: ~~~~ I've been down many times, yes, of course, and then, yes, I do cheer up. ("If you can't smile now, remember you will be able to smile later.") I always thought of it as regrouping, then heard the 'rollercoaster' expression from the List. I think Life is a 'rollercoaster' for all people, regardless of individual circumstances. I don't recall ever feeling as if my Christopher's situation is hopeless,  hough, but yes, I worry A LOT A LOT A LOT about his future.

 You are Not overreacting, because you are reacting exactly the way a concerned and Very loving Mother reacts - with both barrels. And I believe it's a certainty that you will react this way again in the future, should something unforeseen occur. All Mothers experience "PITS" ~~ pit-in-the-stomach syndrome.

 
Bj - I wish I knew what to say that would make things right, but I just don't. Hopefully, you're already beginning to regroup, and the pit in your stomach has dissipated somewhat. I certainly hope so. We are all pulling for You, Graham, Michael, and Christopher, and you shall remain in our most positive thoughts. Much love to you and all from,
~Lisa.

----- Original Message -----

From: G & B Norton To: Sandie

Sent: Sunday, October 01, 2000 4:05 PM

Subject:

Dear Sandie,

Thank you for your letter last night. I can see myself breaking at some point and I have the greatest of respect for those people who get to that stage and can then go on to recover and keep carrying on. I have spent the last 2 hours helping Michael with his music homework - something that he should be able to whizz through in 20 minutes. as it is he is not only getting it wrong in his head but is writing almost every single note on the
wrong line of manuscript. And I can feel my temper rising - and I know it isn't his fault, but when you have spent 41 years thinking at high speed and you are used to your child thinking at that speed too - well, it's like going out for a power walk with someone on a zimmerframe. You just strain to run ahead. So I have removed myself for a  little while because anger is not appropriate at this point.

Sigh.
Love to you

Bj

----- Original Message -----

From: G & B Norton 

To: Elizabeth

Sent: Sunday, October 01, 2000 5:02 PM

Subject: Re: Tears

Thanks, Beth. Maybe I've just got a fit of the glums. I've been sitting with Michael as he's been doing his homework and it's so frustrating. I'm biting my tongue trying to keep my temper as he makes mistake after mistake. I'm used to a quick brain and snappy answers - he has (had ) an IQ of approaching 150, and coming from a family where I was the dingbat ( after my Mum ) I'm used to rapid-fire talking and fast thinking. It's like living with someone on freeze-frame and I'm hopeless at it. I keep praying for strength and moral fibre - maybe God's popped out for the day.

Anyway, thank you for trying to cheer me up. I swore I wasn't going to get pre-MRI stress but because of all these symptoms I'm on overdrive - are you?

Love Bj

4^th October(web site)

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  he 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!'

6^th October(website)

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..........

----- Original Message -----

From: G & B Norton

To: Baggies

Sent: Saturday, October 07, 2000 7:28 PM

Subject: Re: Bad News

Dear Sheila, Lisa, Beth, Diane, Jennifer, Sandie, Joanne, Robin, Jan, Cj and
all my wonderful List Friends,

First of all I cannot EVER thank you enough for all the love and care that
has been flowing across the Atlantic in waves over the last week. And it's
only a week but it seems like a lifetime.  You are all right in that I need to be very proactive in what we do next - hence us sending off the scans to Eric exhorting him to send them to whoever he thinks can help.

But underneath all this is a reality check. Do you remember how Michael didn't want chemotherapy? And IF this is new tumour, it's grown right through 4 cycles of PCV. So whatever we do next, we need to be CERTAIN of what it can do for Michael.

And Michael is a boy who is very unsporty ( a fractured skull and perilymphic fistula has put the lid on that one) whose whole life is books and music. And as of yesterday he can no longer read the written word or music. He can SEE it, as the double vision has subsided ( probably due to the steroids) but his brain won't let him make sense of it.

Michael tried to play the cello in my chamber group yesterday. He couldn't make his hands
work - couldn't interpret the music. He stood up, said, 'Well, that's that, then' walked over and put the cello back in its case - the other boys just sat there looking miserable and were totally distraught.

Today he had a cello lesson and was improvising fantastically with his wonderful, wonderful teacher. But he can't read so he can't play chamber music or in an orchestra. Not to mention the fact that he can't go up and down stairs securely or remember what he's doing a lot of the time.

 
In other words, he can't be who HE is. And he doesn't want to prolong an inevitable end if he's going to be reduced to sitting around not doing the things which define HIM. He has had to leave school - he will go back to the hospital school, where he will be safe and happy and can do as much as he feels he can. But it isn't what he wants, and -although i accept this will be deeply offensive to many on this List who are brave and courageous and fighting for all they are worth with everything that chemo has to offer - I  can't put my hand on my heart and say I want him to keep going at all costs just so I can say he tried absolutely everything. He seems to be getting worse every day over the last 10 days. Hopefully this will soon bottom out and we can see how he gets on at that stage.

But if you had seen him shut his beloved cello up in the case yesterday morning you would understand. I love him with all my heart and I can't put him through something which won't restore this most important thing to him.

He and Christopher were playing on the megadrive this morning. Michael was able to do that ( different part of the brain, I guess) and they were having a great time with lots of laughter and shrieking. Then they decided to change the game. Michael became quite confused, and I watched Christopher who hadn't seen Michael in these last two weeks ) walk over and gently move Michael's hands away from the video player and put them back onto the megadrive so he could carry on.

I'm not sure how I'm going to cope - but I'll take the lead from the guy who is - as ever - in control of his own life.

Love Bj

----- Original Message -----

From: G & B Norton

 To: Baggies

Sent: Monday, October 09, 2000 7:51 PM

Subject: Re: Good Morning To Everyone

Dear List friends,

We have had so many wonderful letters that Michael would like to thank you himself - but since Saturday, unfortunately he can no longer read. He can SEE the letters but he can't make his brain understand that they are words.
If I ask him to spell a word he can, or if I spell a word for him he can tell me what it is, but he can't READ anything. Any ideas?

He is quite depressed today - he went to the hospital school but not being able to read is really, really tough for a boy who could read by the age of 3 and has not stopped reading since. Although he thinks maybe he can circumvent the eye/brain problem by learning Braille (!)I don't think it will be that easy. I asked if he felt ill because on the way home he looked so awful, but he just turned his head away and said, 'I just can't be
BOTHERED any more'.

I have hit the amazon.co.uk website to order loads of audio books for him but it isn't the same. At the moment , however, his Dad has cheered him up and they are playing Monopoly - he can't read what's on any of the cards so basically he's fleecing Graham every time he lands on one of Michael's properties!!

Anyway, he wanted to thank everybody but because he can't write he suggested that I forward to you the letter he has written to the school to explain why he has had to leave.

Email: the.silence@talk21.com

8 October 2000

Dear Mr Young and all the Staff,

As of today, I won't be coming in to the Grammar School for the foreseeable future ( apart from on Friday afternoons for Mr White's composition class). This is because at the moment I am not able to interpret any of the words I am reading on the page, and we are trying to get to the bottom of what is
causing it.

The likelihood is it is either more tumour, or brain damage caused by radiotherapy. Hopefully if it is just brain damage I might be able to come back to school some time, having found ways to get around this problem. In
the meantime I will be trying to find ways of keeping up with at least some of my GCSEs by attending the hospital school, where it will be easier for me to cope.

Although I can't read at the moment, don't feel put off from sending me emails at my personal and inappropriate email address above and I will use Mum, my new secretary, to read them to me and then I will dictate my replies! Hopefully this will be just a temporary problem and I will be back soon.

I can't end this on a funny note because I can't think of one. But if you can, fill in this ………….

…………………………………………………………………………………………………………
and email it to the above address!!!

Thank you for all your help and support,

MICHAEL NORTON

----- Original Message -----

From: G & B Norton

To: All our friends

Sent: Thursday, October 12, 2000 8:02 PM

Subject: Fw: Depression v thinking you are a duck

Well, another fine day in the hinterland of medical knowledge.

To cut to the chase, noone 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 noone apart from Eric in Canada thinks it's 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  t 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.

Going quietly quackers,

Bj

19^th October(website)

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 have to think very long and hard about where we go from here. It is very important that people realise just how 'spiritual' Michael is. He's not frightened of dying - he's always said that. He's frightened of not having any more living to do………. And we're frightened of having to go on living without him being here with us.

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.

----- Original Message -----

From: G & B Norton

To: Sandie

Sent: Friday, October 20, 2000 9:16 PM

Subject: Re: Michael

 
Today Michael can no longer identify any colours - he can see them but doesn't know what to call them anymore. Day by day............ I am shattered into little pieces. And I KNOW this is the easy bit so how the hell will I cope? Except that I know you, my friends, are on the other end of the keyboard for me as I am, for you. I am just surprised by how fragile a family dynamic is and how easily stress and tension cut across the real desire to make the most of every second. It's all too intense. Maybe we have to retreat and try overly hard to be normal.

I don't know. Ramblings of a tired, slightly mad woman.

I'm off to bed to lie awake........will be back in touch on Tuesday.

Goodnight all.

Love Bj

23^rd October(web site)

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.

 

23) The beginning of the end: Montmartre, Paris, Oct 2000

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.

----- Original Message -----

From: Michael Norton

To: Jennifer Norton (another girl on the Brain Tumour List - and quite unrelated to us!)

Sent: Monday, October 23, 2000 7:55 PM

Subject: Me too.............

Dear Jennifer,

I am having to dictate this to Mum because I can't read any more so writing
takes forever.

Mum told me that you have been having double vision and that your MRI shows
a suspicious bit in the occipital lobe. This is what has happened to me but
my bad luck is that it is all bad news. This has made me feel frustrated and
depressed as you can imagine.

I can't believe there are two Nortons on this List with temporal lobe tumours who can both be unlucky at the same time, so I am just writing to you to say I hope this is a temporary problem for you and that you soon have good news from your doctors.

from Michael Norton

----- Original Message -----

From: G & B Norton

To: Sandie Norton ( Jennifer's Mother)

Sent: Monday, October 23, 2000 8:49 PM

Subject: Re: A Time of Change

Dear Sandie,

Michael has dictated to me a letter to Jennifer; he wanted to do it and I thought it was important that he did. I cannot believe what i am reading. Your letter almost exactly mirrors mine of two and a half weeks ago. I can't say anything to take the worry away from you and I would be the worst person to attempt it because your email is almost word for word what we were told and you know as well as I do where we are now.

All I can say to you is that even now in the midst of a fairly major crisis of faith that I seem to be going through over the last couple of days, I don't want to believe that God could do what He is doing to Michael to another family with the same name and just as much love flowing in and out of it.

And then I read your next email, and again I heard my own voice saying I hoped Michael had radiation damage and not recurrence.

Sandie, I'm getting all this backwards and wrong. But you know what I am TRYING to say to you ( and making a total dog's breakfast of) is that I am hoping and praying with all my heart that whatever is going on over there is fixed. And that right fast. Jennifer WILL be finishing her studies...........I am thinking of you both tonight. Take care and best love to you both,

from Bj

----- Original Message -----

From: G & B Norton

To: Jan

Sent: Friday, October 27, 2000 5:50 PM

Subject: Re: Something I was supposed to tell you - from Jan

Dear Jan,

thank you so much for the 2 cards you have sent. I am a bit like the blue
mountain boy in your card at the moment as I can't remember very much at all. But I was
glad Dan did well at the conference and I hope I can too.

Mum showed me the picture you sent of Sandie and it made my evening!

Love Michael

[Jan's son Dan has a brain tumour and was a star at a conference in Canada, performing his own songs on the guitar. Michael was due to address the UK Brain Tumour Society meeting on November 6^th.]

----- Original Message -----

From: G & B Norton

To: Karen

Sent: Sunday, October 29, 2000 9:00 AM

Subject: Re: SUPPORT: How to handle the other kids!

Dear Karen,

This is a problem I am only too aware of. Christopher is 11 and is a
chorister at Windsor Castle. This means he lives away from home at Boarding
School and is only allowed home overnight on Fridays, for Sunday lunch and
for a couple of hours on a Wednesday evening. It also means that when he
goes back to school tonight ( he's been home for halfterm this week) the next long period he will spend with Michael is after Christmas , because he doesn't come home until after Evensong on Christmas Day. He was at home with us last Thursday when we finally found out that Michael's condition is now
terminal and he has been an absolute star this week. He has looked after Michael, filled in the words he couldn't remember, helped him across roads....and bullied him, played physical games with him, helped him do
packing for our upcoming house move- oh, everything.

He has been great - and once again he has missed out on a really fun halfterm because of his brother's illness. This isn't confined to the BT, it's happened on and off all his life with Michael's other illnesses, too.

He knows Michael isn't going to get better even if he doesn't ( I think) know how short the time left is. He says in some ways it's better being at school because there's not enough time to worry - he starts at 7am and
doesn't stop till 7.30 in the evening! The staff and the Chapel clergy are very kind to him and of course coming up to Christmas he will have so many concerts and services he'll be occupied, but it doesn't alter the fact that
he is away from home and I can't reassure him. Plus every time I turn up at Evensong because I have a free couple of hours (Huh!) I see the panic in his eyes as if I've come with bad news.

I think each child has to find his own 'comfort zone' - and for many that WILL be playing up and demanding attention. You can't say 'Well, it'll be your turn later' as that doesn't address the NOW. Last week in Paris Christopher was desperate to climb up Arc de Triomphe, Notre Dame or Sacre-Coeur, but ended up doing none of them. He was good about it and I did say we'd take him back one day - but he still knows that for now, for TODAY, he is in the back seat. Again. Where he has been most of his life because every time he does something it seems as if his brother finds another rare illness to put himself back in hospital.

I try to find some time in each holiday/weekend/ whenever where it is JUST him and me. No matter how ill  Michael is, someone else can cope with it for an hour or two, and NOTHING is allowed to interfere with that. Even if it is only him and me in MacDonalds.

Bottom line, though, as I said to another friend, is that all mothers have to accept that along with the baby is delivered a large package of guilt, and whatever we do for one we will wish we had done it for the other.
But I don't think you can put one child 'on hold' for the duration of the other's illness - because the year that Christopher has 'lost' while Michael has been ill won't ever come again. He'll only be 11 once, just as surely as Michael will only be 14 once ( or possibly forever) and we owe it to our healthy kids to allow them to be just that.

But I have to say that I get it hugely and spectacularly wrong - ALL the time..............

Bj m/o Michael, 14, gbm

dx/sx 1/00, 33x radiation Feb 00, started 4th and final PCV Aug 00

MRI October 5th shows large new tumour on opposite side from original tumour

Starting to struggle..........time running out.....

Original Message

 -----
From: One of Michael's friends at the hospital school

 To: Michael

Sent: Tuesday, October 31, 2000 11:10 PM

Subject: CHESS!

Michael,
It's me!

I 've sat here thinking what to say to you and i still don,t really know, can you belive it i'm speechless, feel very acomplished to be the only person in the world how has left me with nothing to say ( but i will give it a go anyway ). Don't think you can get out of having to play chess with me, you are not going anywere in till i have beaten you at a game o chess!!!!!. i bet your wishing that you had never tault me to play. i want to be there for you and to let you know that i consider you to be very important to me, i know at this point you will be saying this girl has lost it but i really need you to know that i love you and that you are one of the most incredible human beings that i have ever met with one of the kindest hearts ( with some of the best taste's in headscarfs and hats ).

lot's of love sweetie (and if you hadn't already sussed it i am the mad idoit from the hospital
school. )

----- Original Message -----

From: G & B Norton

To: Sheila (another mother of an adult bt patient)

Sent: Thursday, November 02, 2000 10:40 PM

 Things here are still very traumatic........Michael's walking is rather erratic, partly because of his balance and partly because he doesn't have much vision left. I think his eyes are giving differing messages to his brain - he looks at things in a very odd way. But it can't really be tested accurately because he can 'see' in actual fact; it's his BRAIN which isn't allowing the pictures to be interpreted.

I showed him a picture of an elephant yesterday. He said he knew what it was in his head; he could even see the word written down in his mind's eye, and he told me all the shapes of the letters - but no way could he get the word elephant out. It is like that with everything now; he knows what it is in
his head but can't find any nouns. I know it won't be long before he can't tell us our names. We went to the Chapel concert tonight and sat in row 3, but I don't think he could see his brother in the choir. He enjoyed listening, though, I could tell that.

As for God, well Michael's cello teacher got it right when she said she is starting all her prayers 'Dear God you bastard',  which just about sums it up. Just don't tell me that prayer can work miracles and with belief Michael will be cured, because in my experience

a)       it's not true

b)       why should God cure Michael and not anyone else and

c)        the let-down if you believe it is appalling.

 I know because I was starting to believe it at the end of the summer. What I want people to pray for is peace of mind, which I desperately need particularly after the day I've had, Michael being so
unwell and our house move still being in the balance.

So with one thing and another life never gets much better. I feel so much for all of us - God must get fed up with hearing from me all the time! But how are things with you?  How is it going and how are you coping?

Love and prayers,

Bj

[Meanwhile, we were still having terrible problems with organising our move. At this point I lost my temper completely and made it abundantly clear that if we didn't move on November 10^th, the whole deal - and the entire chain - would collapse. I felt very strongly that we HAD to move while Michael still had enough sight to make it possible. I think that, finally, the vehemence of my argument permeated through to the minds of the people at the bottom of the chain who were holding things up. If it hadn't been for Michael's desperation to get into the new house, I would have abandoned it. Full marks were awarded to the estate agent from whom we were buying, and to James, our wonderful solicitor. Without him we would never have done it. And Michael wanted it SO much.]

----- Original Message

From: G & B Norton

To: <BRAINTMR@MITVMA.MIT.EDU>

Sent: Monday, November 06, 2000 8:56 AM

Subject: Re: Medical: When Is It Time for Hospice?

I don't know the answer to this one but in any case it's different in the UK.  Hospice is a hospital to which you are admitted for respite or, usually, terminal care. But it is something we are having to consider.

At the moment Michael is becoming more vague day by day. He can't remember many nouns so everything is supported by masses of armwaving 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 (armwave) and two (armwave again) on either side of the first (armwave) , 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.

The outreach and community nurses are coming to see us after we move on Friday (??!!** )
to discuss how we want to proceed. There are very few children's hospices for him to go into but thank heaven my stepmum is a senior paediatric nursing sister and will come and help us when the time comes so we can keep
him at home. 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.

 Or a Mum, either.

Bj m/o Michael, 14, gbm in R temporal lobe

Dx/sx Jan 00, 33x radiation Feb 00, started 4^th and final PCV Aug 00

MRI Oct shows large new tumour L occipital lobe

No longer able to read; aphasia, memory loss;

Starting to struggle………………

8^th November (web site)

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.

November 14^th

Well, we managed the move! It was pretty stressful but we had some wonderful friends - topped by the amazing Judy Bartlett - who cleaned, cooked and did absolutely everything which wasn't essential for us to do. Michael couldn't cope and we sent him to stay with my father for a couple of days. He didn't want to go, but it seemed safest - his eyesight is so poor now that we couldn't risk him falling over anything.

Packing up and shutting the door on his bedroom was very traumatic indeed. Judy was quite no-nonsense about it, thank heavens, but as I hoovered the carpet and shut the door behind me, I could see all the shadows of Michael's past dancing in front of me - just like that scene in 'You've Got Mail', where Meg Ryan shuts the door on her bookshop and seems to see her young self dancing with her dead mother - ghosts from the past. I'm sure we have done the right thing, but…….

The new house is so beautiful - at least, the garden is. Thanks to Judy and her team of cleaners, plus other friends pitching in with casseroles and unpacking skills, we were done by Saturday lunchtime. Dad and Sheila brought Michael home mid-afternoon - and as I watched him getting out of their car I couldn't believe my eyes. Was he SO much worse, or had I just not realised how frail he had become? He had had a lovely time, cooking and playing 'Rummikub', and had visited the falconry where he held some owls. He liked that. But Sheila said that his memory seemed almost lost and it had been quite stressful making sure he was OK all the time.

 

                                                

The last pictures. HOW could I not see it.... he is so poorly.

He was SO pleased to be home. He walked round very slowly, trying to adjust to his new environment. Dad had taken him to choose a tripod for his camera, and they set it up in the patio window overlooking the garden, so he would be ready when the deer arrived. He took some photographs - not sure how much he could really see, but he was enjoying himself. His friend Richard arrived to help him sort out his bedroom and living room the way he wanted it. This is the big attraction of this house - the stairs divide the house into two and his upstairs 'penthouse flat', as he calls it, has a living-room for him, with his TV and video machine in it, plus his bedroom and his own bathroom and separate toilet. And the study, which he objects to us invading 'his' space to use!! He and Pugwash have settled in nicely - I keep on telling him, there are plenty of London flats smaller than HIS new accommodation!!

We have had to fit banisters as an emergency measure, and Judy's husband Bob has been round and done that for us. Michael really can't get up and down stairs properly at all. But he is here, he's installed in his rooms - and he is HAPPY. What more can I ask, for now??

A friend of ours arranged for him to go out in a Ferrari on a test drive. He was supposed to do that today - but unfortunately the engine got damp and the thing wouldn't start!! Oh well, never mind. Another time……..? He was also going to go out on a Harley Davidson, but he can't see well enough now and I would be hysterical at the thought. It's lovely that so many people want to do things for him.

His friends - quite unprompted and without any adult help - phoned the Make-A-Wish Foundation to see if they could get him up to Anfield for a football match. That would never have occurred to me - I did wonder why they had come and asked me for the name of Michael's doctors, though! Hopefully that can be sorted out before he gets any worse……………

Graham went out to play badminton tonight. Michael came downstairs very carefully and came into the piano room. Suddenly, he sat down at the piano and started to play - things he knew, and things he was improvising. He played for about 45 minutes, and then he asked if I would play to him. He got out the book of the film music to 'You've Got Mail'. I played a few pieces, and then he asked me to play 'Somewhere Over the Rainbow'. I played it over and over for him - and he closed his eyes and hummed along…………

November 15^th

The beginning of the end, today.

I took Michael to the hospital school and then went into the Grammar School. I played the piano for a lunchtime concert, and when I had finished, out of habit I switched my mobile phone back on. There were several messages from the hospital school, saying that Michael had a bad headache. As I listened, the departmental phone rang, and my colleague Howard answered it and said, 'She's on her way.' I drove wildly to the hospital and Michael was in the children's ward, on a bed, crying in agony. By bed time he was on a morphine driver. There were frantic phone calls going back and forth between the hospital and the Marsden, mostly because nobody locally seemed to understand how to get the pain under control. Graham and I were frantic. Nobody knew what was going on.

November 16^th

Christopher has been very upset at school so I went to fetch him this morning. Unfortunately, as I arrived back at the hospital with him, Michael was in the throes of an agonising attack of pain, despite having managed to get some sleep overnight. It took over an hour to get the morphine organised and Christopher has been so distressed to see his brother in this state. Is it right to have him here? Don't know.

He has had a CT scan, which shows that he has had a bleed in his brain. Apparently the tumour can damage the blood vessels and this is the result. He is in danger of having another one at any minute, and that will probably kill him. In any case, his life is now drawing to a close.

Nina, our outreach nurse from the Marsden, arrived this afternoon and immediately took over the care of the pain control. This was a profound relief to all of us since Michael seemed instantly better. He has become very euphoric; this evening he kept on looking at Christopher and saying, 'My brother! My brother!' and stoking his head or his hand. He lay for a long while this evening, just looking at Christopher. Finally he asked Chrissie to lie on the bed next to him. We switched the lights off and listened to the boys talking together in the half-light.

Michael kept on talking about a video he loved, and it didn't take us long to work out that he meant 'You've Got Mail'. Christopher said, 'I'll buy it for you for Christmas, if you like.'

This will be a very good memory……………………

Friday, November 17^th

He was more peaceful this morning. His form teacher and school nurse and counsellor came to see him, which was nice. He seemed pleased to see them, too.

The decision has been made to transfer him to the Marsden so that they can get all his drugs under control. He was fine in the ambulance - still euphoric, really. We had such an amazing conversation. He said to me, 'Am I dying? I don't feel as though I am. The funny thing is, Mum, I don't want to die because I will have to wait about forty years for YOU.'

'Michael, at the moment, I think you'll only have to wait about forty minutes.'

The ambulancemen and the community nurse who were travelling with us were swallowing hard. I don't think they have ever heard anything like it………

'Mum, do you think it's like Narnia?'

'In what way?'

'Well, if I die now, do you think that time won't be so long? That forty years of waiting here will just be a blink or a second in Heaven, just like when they all came back from Narnia and they'd only been gone for a few minutes?' So I won't have to wait long for you at all?'

'Yes, Michael, I think that's a wonderful way of thinking about it.'

He went on chatting away, really happily, in a similar vein until we got to the Marsden. Then, as the men carried him out of the ambulance, something seemed to change. All of a sudden he got really, really angry - and now he's very distressed and tearful. ALL he says is that he wants to go home. He keep on and on saying it, over and over again. My Dad and his wife arrived and he wouldn't talk to them, either.

Graham went home this evening and my friend Olivia, who's a GP, arrived to keep me company. As we sat with him, Michael seemed to be sleeping. His respiratory rate kept dropping to four per minute and I thought we were losing him. Then he suddenly sat up in a state of euphoria - then, just as suddenly, back to four per minute again.

What on EARTH is going on here?

At 10pm tonight, I tried to give him his pills. Suddenly he went beserk. His face was contorted into sheer terror and he was plainly terrified of me. The nurse had to restrain him; he was beyond mere paranoia. He was trying to escape and kept asking what I'd done with his Mum and where the 'real' Michael was. 'My Mum won't be able to find the real Michael!' We had to sedate him in the end, after which he had a more peaceful night. Thank God. I have never seen such fear - and it was me that he was terrified of. God help us all.

Saturday, November 18^th

He didn't wake up until 12 today, and even then only with great difficulty. All he will say is,'I want to go HOME,' over and over again. He won't speak to Graham or to me, although finally he half-played cards with Graham. He was OK with Christopher, who managed to get him to take his pills.

His three closest friends came to see him today - what brave AND kindly boys they are - and he tried to rally for them. Then he played 'Rummikub' with Dad, Sheila, Graham and I. He was fine then, but as soon as you stop doing things with him he starts again - 'I want to go HOME.'

We got him to take his pills tonight, but I awoke at 2am to find him wandering, looking for 'somewhere to sleep…..'. A very restless night for him.

The saddest thing today was when he suddenly said, 'I just want to be with my brother………..'

Sunday, November 19^th

He woke up earlier today, but lay with his eyes open and his back to us. After a while, he agreed to get dressed and played a game with Dad and Sheila, but was clearly still very unhappy. Then Andy and Joy arrived - don't think they can believe that this is the same boy they went to Florida with. We had decided to take him out to MacDonalds for lunch. We borrowed a wheel chair from the ward, but it was very busy indeed and he became distressed, although we were able to persuade him to have a milkshake. I bought him the 'You've got Mail' video, which he obviously enjoyed. He rallied for a visit from Judy Bartlett and her son Richard and then settled down to sleep much better. Maybe things are improving again???

Monday, November 20^th

Michael did NOT want to wake up today. He was OK for half an hour while his godparents visited, but other than that he slept until 3.30 when we felt we HAD to wake him up. We discussed pain relief with the consultant expert in these matters. She suggests we control it with codeine 6 - 8 hourly. I am not convinced by this, but what do I know? We got Michael to play Rummikub and cards - with his eye patched to help him see a little bit better - but he refused to eat anything again, all day.

Tuesday, November 21^st

Again, Michael didn't want to wake up even though today was 'going home day'. At midday we kind of forced him awake - he said he had another headache and was VERY sick again. We had a long chat with Nina about home support, and gave him some time to recover and settle before trying to drive him home. He was very disorientated at first, but then he settled in 'his' living room with crisps, a drink and the 'You've Got Mail' video - just as he was doing before the brain haemorrhage. It's almost as if he has a memory of being happy doing that, so he's going to try to recreate it - and maybe find happiness at the same time.

We have a Marie Curie nurse coming into the house every night for the next week, in the hope that Graham and I can try to get some rest whilst she's here. We are so, so tired and drained - and it's only been a week. How do families do this for years????????

Wednesday, November 22^nd

He is impossible to wake up for his morning pills - but he DID decide to wake at 12.30, and he came down for some lunch. He tried to play 'Rummikub' and cards - but he'll never do it again……….

I went to collect Christopher for his Wednesday afternoon leave-out from school; by the time I had got back Michael had been really sick again and had a severe headache. Graham had to drive back up to the Marsden to get a prescription for Sevredol - a stronger pain killer. We have now discovered that most of the home care nurses can't administer it by injection, which is the most effective route for it in an acute pain attack.

But I still think he is pleased to be back, at least with his cat if not with us.
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.

Thursday, November 23rd

If Michael had slipped away that night he was lying on the bed talking with Christopher, we would all have been at peace.

Lesley, the Marsden psychologist, came to visit with Jo the school nurse. Michael didn't want to come downstairs, so Lesley went up to talk to him. When she came down, she said she had had a few words with him but that he had told her that he was tired now, that he just wanted to sleep. She thought - and I agree - that he is beginning to withdraw from this world, in preparation for the next.

After this awful week, today 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. He had a HUGE tube of milky bar buttons - a present from a friend - and was trying to tell me in outrage that Graham had eaten a couple of handfuls rather than the one or two he had been offered. 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......... and he's smiling to himself………….

Friday, November 24^th

Today has been just AWFUL. We had such a bad night - we had no Marie Curie nurse and Michael had a terrible attack of pain, so Sheila administered the subcutaneous injection that was needed. Thank heaven for a district nurse in the family… it would have had to have been Graham or I, otherwise. Nina came this morning to administer an enema - Michael was devastated and it all brought on another severe headache, which even Nina couldn’t get on top of despite several doses of Sevredol and morphine. Eventually, by 2 pm he was asleep. We had a long talk with Nina about what we were going to do - we even had to discuss what to do if we found him dead. It can't be happening - it CAN'T be happening. Just watching him staggering about - he won't allow us to help. We've got a stairgate up but he tried one night to climb over it; it's impossible. I feel absolutely helpless. This is MICHAEL. My son. Intelligent, witty, sassy - reduced to a frightened animal who is desperately trying to hang on to some dignity and privacy. Even though he doesn't understand what a door is or a wall. Even though he can't understand how to get out of the bathroom. Oh, Michael, how proud we are of you and how we deplore what is happening to you………

Saturday, November 25^th

Michael woke early with a headache. I took Christopher to collect Elwood, the puppy, in the hope that it would cheer Michael up to feel the fur. All seemed well when I left.

By the time I got back, all hell had broken loose. Christopher ran immediately up the stairs to tell his brother all about the dog - and froze in the doorway. Michael was angry, disorientated and very, very agitated indeed. He was in the grip of a paranoid episode and could not be calmed. Graham went for the most obvious thing and put Pugwash on the bed. Michael went absolutely beserk and screamed, 'What is THAT? Get it off me!!', lashing out in all directions. No injection worked, there was no way he was going to take any pills and the only option was to have him readmitted straightaway. Christopher was petrified [ he would never see his brother again] and Sheila took him straight back to school. The amazing Judy came and collected Elwood and returned him to the breeder without a murmur.

We had to wait two hours for the ambulance. By the time we arrived back at the Royal Marsden, Michael was asleep, but very restless. Immediately a syringe driver was set up to try and get the pain under control, but even after just a couple of hours it needed to be turned up. After that he settled a little bit, but he was confused; he didn't know us or where he was.

The doctors are not convinced that sedation is the answer, although I would far rather that he were asleep than suffering like this. However, the paediatricians say that pain control is the priority - and then everything else will, hopefully, settle down for a little while.

Michael woke at midnight. I found him standing by the bed. Where did he think he was? Who knows?

Sunday, November 26^th

Michael was very sleepy and confused this morning when Graham's mother and brother arrived to see him. He was talking rubbish and very difficult to settle, sniffing everything he could get his hands on (including us) and being really agitated, picking at his sheets and blankets.

I went over to Windsor to Eucharist, during which time Michael was so agitated that he pulled out the line into his Portacath. He wants to go to the toilet but can't find his way.

We know now that he is blind - but he doesn't. He thinks he can see - well, what? We don't know. He doesn't understand anything, anything at all. He pushes us away, he tries to do things himself that no one understands and it is all unremittingly AWFUL.

I respected Christopher's decision not to come up today and see Michael again. I think he was very wise under the circumstances. The doctor explained the options to us and we told him that in all honesty we cannot cope at home any more. Which means Michael either remains here in the Marsden, goes back to St Peter's or finds a hospice. I promised Michael at the beginning of all this that he would NOT die at St Peter's if I could possibly avoid it - and I intend to keep that promise. But we are now being told that Michael could live for another six weeks in this twilight world because his heart is so strong. I don't think anyone wants us to take up a bed here indefinitely. Our new house is 500 yards from the Woking Hospice. But they only take adults, not children. What an irony.

Hell is not necessarily what comes after death. It is here and now.

What is happening to my child?

Monday, November 27^th

He was awake from 4.45 - 6.15, talking about Hitler and other paranoid delusions. He says he doesn't want to be Hitler and have to choose who lives and who dies…. What on earth must he be going through his head?

Then he slept until 10.30. He is more subdued but restless on and off all day. He was very sick again this afternoon and all his drugs have been increased. He's not eating or drinking anything at all so this cannot go on for much longer - surely?

He needs a break…….

Tuesday, November 28^th

A much more peaceful day - he slept all day, until 9.30 pm when he got up to go to the toilet. This is SO difficult because he just refuses to use a bedpan. This demand for dignity is so deeply-ingrained. He won't let me help him - it has to be Graham or the nurses. He shouted, 'Give me my privacy!' at me today.

----- Original Message -----

From: G & B Norton

To: Baggies

Sent: Tuesday, November 28, 2000 1:18 PM

Subject: Fw: Worse and worse........

Dear Baggies,

Below is a copy of the email I am sending to the Brain Tumour List.

There is nothing to add to this. We are at the hospital all the time so uncontactable by phone; we can't move him back home or to a hospice because his symptoms are worse each day and the medical requirements are beyond what nursing staff can deliver without doctors input.

It doesn't come worse than this, we are told. Thanks.

Sorry - I have no cheer whatever. A parcel from Jennifer arrived today - I will take it back with me now but whether Michael will understand is doubtful. Thank you for your letters, dear freinds, and for your cards. I
can't think straight and I haven't read any incoming emails so I don't know what is going on with any of you. Sorry to be so selfish but I know you all understand.

I am going back to be with him now - it may be a while before we are back home and online but I think of you all constantly. God save you from any of this.

Love and prayers always,

Bj

Dear Friends,

I am signing off again for a while. Michael was readmitted to the Marsden on Saturday; his paranoia, blindness and sheer pain and sickness were too much to deal with at home even with nursing care. Trying to get medication
prescribed and administered at home is not easy over here. We are n the best place now.

Michael has, thank God, slept for the last 14 hours so I have come home for clothes, paying bills etc etc. Sadly he doesn't know us at all, he is blind but keeps 'seeing' things and he is in pain a lot of the time although we keep upping the diamorphine and anti-sickness drugs. He is on Medazalam to try and control the agitation and distress.

This is not how he wanted it to be. Apparently it is very, very rare for a child's brain tumour to end in this way. And because Michael's vital functions are holding up well it could go on and on. Graham and I are at breaking point, not because of the illness but because of watching Michael's distress and paranoia. Please pray for God to take him NOW. Since we are not to be allowed to keep him I don't understand why he can't simply slip quietly away. He is not, to quote the poem, 'going gently into that good night.'

It is just not fair.

Bj m/o Michael, 14, gbm in R temporal lobe

dx/sx Jan 00, 33x radiation Feb 00, started 4th and final PCV Aug 00
MRI October 5th shows large new tumour L occipital lobe

Blind, confused, lost.;

Now dying slowly and painfully. And so are his family.

Wednesday, November 29th

M woke at 8.30 to go to the toilet, and then again at 2.20 and 4.30. He has been VERY much more restless today and very difficult to deal with in some ways. Judy, Anneliese and two of the staff from school have been in to visit him but it's very hard to cope when he is so distressed.

When Peter was here this afternoon, he suddenly tried to get up. He didn't have enough strength and he had to sit on a chair. We didn’t understand what he wanted or where he was going and he was so tired and frustrated with trying to explain to us.

Graham went home for a break this afternoon. Michael needed to go to the toilet and I struggled to get him there and back. As I got him back to the bed, I leant him against the mattress while I tried to work out how to sit him down. Suddenly his arms were round my neck and he hugged me so tightly. I said nothing but hugged him back fiercely. My brave boy was saying goodbye to his mother and I thanked God for the moment. Then I eased him back into bed and into sleep, my face wet with tears. I knew that would be the last moment of consciousness between us.

I went home to try and get some sleep but Michael was very restless with Graham all night. He had ANOTHER two boluses of morphine and all the sedatives etc were increased again. He has had no fluids or food since Sunday…………….

----- Original Message -----

From: G & B Norton

To: Baggies

Sent: Wednesday, November 29, 2000 9:10 PM

Subject: writing and chatting

Dear, dear baggy friends,

Graham came home yesterday and printed off a load of backmail so I could read it in the hospital. A lot of it made me smile: I read a lot of it to Michael and I like to think he heard it. Now I'm home just overnight to try to get some sleep while Graham takes his turn by Michael.

It isn't an easy death. Michael is not 'going gently into that good night' - and why should he, I suppose.

After sleeping for 24 hours he awoke at 9.30 last night to go to the toilet. He's blind, is refusing all fluid - even a  wet sponge - and can hardly stand; he doesn't know us nor can he make any sense but he is insisting on
getting out of bed and trying to walk to the toilet. He HATES it when Graham isn't there because I have to take him; I managed to half-carry him into the loo but he couldn't work out what to do when he got there; he couldn't turn round and he finally just sat down on the toilet seat, looked into thin air as he didn't know where I was and said very distinctly ;'Can't you give me my privacy?'

I find it incredible that a child can be so strongwilled as to refuse fluids, which every doctor tells me is a basic and primeval force, but can still muster enough of his natural dignity to refuse to use a bedpan and to want some
physical space and privacy.

.

Today he has been very unsettled again, with more pain. When I left he had had another increase in morphine and looked settled for the night. With no fluid since Sunday evening and only weighing 68lbs I can but pray that he
will slip away soon. what I DON'T understand is how can Michael pass so much urine when he hasn't drunk for 72 hours?

Love to you all and thank you for being there.

Bj

Thursday, November 30^th

I overslept - one of the Baggies - Diane, who we met in Florida - rang at 7.15 from the States and woke me up. You can imagine what I thought when the phone went. I got to the hospital at 9am. Michael was sleeping peacefully but by the afternoon he was distressed again and trying to get out of bed. My friend Olivia came in the morning and he was fine, but in the afternoon he got himself into a terrible state trying to move. He had no strength AT ALL and he collapsed back onto the pillows with his eyes rolling in his head and his mouth hanging open. I thought he was dying. He settled again, though…..

Graham went home to feed the cats and pick up the post. Michael tried again to stir at 8.40 and he just couldn't. I can get my finger and thumb round the top of his leg as well as his arm. He is emaciated. He doesn't have bedsores but I can't imagine how he hasn't.

I have asked Graham to stay the night at the hospital with me - I don't know why. The nurses insist he will be fine tonight but I don’t want Graham to go. Something is really troubling me. What is it?

Night of Thursday/Friday December 1^st

(written later)

The morphine etc was upped again and I went to sleep. I woke at 2am when Liz, the night nurse, looked in and said he was sleeping peacefully. I went to the toilet and when I came back, something was different. I don't know what it was but it was something in his breathing.

The nurses decided to turn him and they found the bed was wet. He had slipped into unconsciousness and his breathing sounded BAD. They woke Graham up at 2.45am and then the awful breathing and rattling began. We thought it was over peacefully at 3am but then the AWFUL noise really started. They upped the diamorphine, the anti-secretion drugs AND the sedatives but nothing helped, nothing helped. Michael seemed to be gasping and moaning his way out of this life, almost as if he was trying to change his mind, he didn't want to go. The noise became louder and more distressing, with each breath forcing Michael's shoulders off the pillows. Every so often, it would stop and we would think he had gone - then it would return with even more urgency. We sat and stroked Michael's head and told him that it was all right, that if the angels had come for him then it was time for him to go. We told him over and over how much we loved him, how proud we were of him - all the things you tell a dying child? I don't know. We were simply trying to ease his passage as best we could.

By 6.30 - 7am, Graham and I were at breaking point. Finally, he and I moved to the end of the bed and hugged each other, each distraught in tears and our own grief - and, just as if he had been waiting to see us together, Michael quietly took his leave and slipped out of the room. It was 7.50 am and he was 14 years, 10 months and two weeks old.

The nurses had been so kind, stroking him and relaxing him out of this life.

We kissed him goodbye and left while the nurses laid him out, then went back in to kiss him for a last time and say a final farewell.

We collected up all his things - the quilt signed by all his friends; his tiny teddy who had been with him through his brain surgery; his photograph of Pugwash; his 'You've Got Mail' video; his clothes; his earthly possessions.

Then we left - for ever.