Brian , born 11 September 1952, Cuba
Jane, born 25 March 1955, London

We met in 1985 when Jane joined Ernst & Young - we are both Chartered Accountants, although Jane was operating as a self employed management consultant in Information Systems for four years until the day of Jamie’s diagnosis and Brian works for Oracle Corporation, a very large American software company.  The software industry has the reputation of being very demanding.  Oracle could not have been more understanding.  Although Brian tried to do some work, his boss made it very clear that the family came first.  So at least jobs and money were not additional pressures during this nightmare time.  Although we had both been married before - Brian was 33 and Jane 30 - neither of us had children. But it soon was clear that we both had found someone with whom we would like to have a full family and Jamie was born on 21 November 1989.

He was a great baby except for a problem that he would never really overcome - sleeping!!

Jane and I are both the eldest of 3 and really wanted Jamie to have a brother or sister.  Unfortunately Jane’s next pregnancy was ectopic and following the operation we were told our chances of having another child were much reduced.

So it was fantastic that on 28 April 1992 Isabel was born.  Jamie was terrific and welcomed his new sister with open arms - although he was no longer the only centre of our attention.

Over the next 7 years Jamie and Isabel were more than just brother and sister - they were really good friends.  Both had very different characters - Jamie happy to sit in front of the TV/Video/Computer/Gameboy etc. and Isabel more interested in doing things reading/drawing/playing games etc.  So they would do their own things separately then come together and play.

So that was the way it was - a very close family doing almost everything together.  Numerically it worked really well too with the kids either pairing up with each other or with one of us.

Then the awful news.

The story of the 8 months:

We had taken a late summer holiday and visited Jane’s aunt in Rhode Island and one of Jamie’s school friends whose parents are Americans and have house in Connecticut.  It was a great holiday spoilt only by a deep cut Jamie got on his leg while playing on the beach - we will always wonder whether this was the start of the Leukaemia as the current thinking that is that it can start as the body responding to a virus and simply getting out of control.  The culmination was the flight home when we were upgraded to Business Class and Jamie and Isabel got to play with the "toys" (videos, nintendo etc.).

Almost as soon as we got home it was time for Jamie and Isabel to start school.  For Jamie this meant moving into Year 4 and the beginning of some "serious" school.  Jamie suffered from slight dyslexia and always found writing difficult.  Like most boys of his age concentration was also a problem.

After a few weeks he seemed to be finding it tough going and in early October started complaining of headaches and feeling tired.  Over the next 3 weeks we took him to the doctors several times but the varying advice was that it was asthma, then probably a virus. 

That weekend Jamie banged his hand on a door handle.  Although it was a fairly big knock the swelling was out of all proportion.  Nevertheless he wanted to go the BYS rehearsal on the Sunday.  His tutor pointed out that he appeared to be having real problems with his hand.  On Monday morning Jamie’s hand had got no better so Jane took him to the local casualty.  There we were told it wasn’t broken just bruised.  When Jane expressed concern over this and other bruising on his legs the doctor merely referred us to our GP, suggesting a blood test.  Jane had this done first thing next morning - Tuesday 20th  October - the results came back within hours. Jamie’s white cell count was over 400 (normal is about 6~12).  The NHS kicked in very quickly.  Great Ormond Street’s (GOS) lists were full, but although the Royal Marsden had no beds that night they could take him as a patient in shared care and we went to St. George’s in Tooting to start full diagnosis and treatment immediately.

Brian was at work in Reading but as soon as he had the call returned home to take Jane and Jamie to hospital.  Poor 6 year old Isabel who was in plaster up to the top of her thigh having broken her leg a fortnight before for the second time stayed with neighbours until Jane’s mother arrived from Richmond to put her to bed and wait anxiously by the phone.  The nightmare had started.

St. Georges’ was great - superb nursing staff, poor facilities.

That night is still a blur - tests, worries, trying to take it all in.

At first the news seamed reasonable - Jamie had Leukaemia but it was Acute Lymphoblastic Leukaemia which is fairly treatable - 75%+ make it - and none of the obvious types of complications.

Jamie took all of this really well. He was just a month away from his 9th birthday, a bright, intelligent boy.  We decided very early that we must involve him in what was going on, answer all his questions truthfully in ways he could understand and above all maintain his trust in us and all the hospital teams.

His very, very, very high white cell count (we only learned later that 50 was considered high! - Jamie was 10 times that) meant that he had to spend time in the Intensive Care Unit while they flushed the white cells that were being rapidly destroyed by chemotherapy through.  In the space of 48 hours Jamie went from a normal life to a hi-tech bed in ITU.

We were going crazy - our precious son was seriously ill, our daughter (who adored her brother) had a broken leg with all the care considerations that brings, it was half-term, some idiot truck driver had tried to narrow Brian’s car on the M25….

But worse was to come.  Over the next 8 months we were to receive virtually no goods news.

The normal treatment pattern starts with induction chemotherapy after which the child should go into remission.  He didn’t but "don’t worry it’s the 8 week test that really counts" we were told.

The treatment means both 5-10 day stays and frequent day visits to hospital, but we try to keep some degree of normality. All the chemotherapy has knocked Jamie’s immune system to pieces.  The slightest infection can cause temperatures and hospitalisation.  This means time back in hospital and IV antibiotics.  But he stays bright.

So the 8 weeks comes and still no remission.  We know now this is very serious.

The only hope held out is that we somehow get Jamie into remission and go for a bone marrow transplant.  But how do we get a remission?  We were offered and accepted an experimental treatment called FLAG.  Basically FLAG is a block of high dose intensive chemotherapy.  So on 17 December Jamie was admitted to the Royal Marsden (RMH).  The 5 days were tough for Jamie, the chemotherapy knocked him back.

Meantime Isabel is still in a cast but getting on really well with a "zimmerframe" and crutches.  She has coped brilliantly with all the disruption to family life and not having her mother and brother around much at times. Up to now Jamie has wanted Jane to stay overnight with him so mostly Brian and Isabel have been at home and visiting daily whenever Jamie has to be in hospital.  The compensation for her is more close time with Dad.  It’s tough for a 6 year old visiting hospital.  Isabel loved her brother but finds it hard to express her feelings.  So hospital visits were always difficult for her - she wanted to see Jamie but if he was in hospital he was not well and not "her Jamie".  That Jamie normally wanted Jane staying overnight meant that for the first time the family was not operating as 4 but as 2 groups of 2.  Difficult for Jane and Isabel, difficult for Brian and Jamie.

Christmas is coming and will he be out?  While we are wondering this Isabel goes down with chicken pox - a really serious illness for children with immuno-suppression.  She is barred from visiting the hospital and is feeling pretty miserable at home.  Jamie agrees to have dad stay with him so mum can look after Isabel - after all he knows how much a sick child wants his/her mum. It's been difficult enough to try and keep the family working without having this as well.

In the end, coinciding with Isabel ceasing to be in quarantine, he makes 2 days at home, including Christmas morning, before he is back in needing urgent antibiotics.  RMH is nearly empty and he gets a "private room"  He is not at all well but trying to make everyone’s Christmas ok even though his is not.  RMH have great parent facilities so we decide that New Year we would spend together as a family, as we did the night before his birthday so we could all be together when he woke up to balloons strung around his cubicle . 

19th January 1999 gave us the first, and with hindsight the only, good news.  Jamie had achieved a remission and a Bone Marrow Transplant for 25th March (Jane’s birthday) was on!  The hospital had found a very closely matched donor and were hopeful of a successful outcome.

In fact January was really good for Jamie, he wanted to go back to school and we let him as much as possible, although he was having IV doses daily at home to stimulate his immune system back into action.

He started the preparation for the BMT with a 2nd block of FLAG and a whole bunch of tests.

But the good news did not last very long.

Feb 25th saw another bone marrow test - just to make sure - that showed Jamie had relapsed.  All our hopes are crushed.  The BMT is not possible.  We are being told that just 4 months into treatment Jamie has NO HOPE.  This can’t be true!  There MUST BE SOMETHING!  What do we say to Jamie and Isabel?  All Jamie’s hopes were on the BMT.

RMH did not make this easy.  We were told on Friday and our consultant was not in again until the next Tuesday. Both Jane and Brian are Chartered Accountants - despite what Monty Python would lead you to believe one of a CA’s core skills should be client management.  Our consultant had zero.  No one from the hospital contacted us again until the following Tuesday - we felt incredibly alone.  What should we do?  Was this really the end of the road.  What about 2nd opinions? To leave a set of parent from Friday to Tuesday - 4 f* days - with no fall back is unacceptable.  Luckily we did not experience this from any other professional who we subsequently talked to.

Our relationship with the consultant was always a bit up and down but this was the beginning of the end of any sensible basis.

By the Tuesday we were sure that we were not prepared to give up.  We wanted 2nd opinions, the problem was getting the contacts from RMH.  In later conversations we have described their attitude as wanting to put you, as parents, within their castle.  Not only were you not encouraged to think that there might be other castles but you were not encouraged to look over the RMH castle walls.  Perhaps their attitude can be best shown by the fact that until very recently RMH had NO PARENT SUPPORT GROUP.  RMH is a world leading centre for cancer but there is no support group.  Unbelievable?  Not if you have been a patient.

Anyway, we did get contacts - Paul Veys at GOS who agreed to see Brian.  His attitude could not have been more different.  This is a senior consultant (he treated Nicola Horlicks’s daughter) who was prepared to see a concerned parent and spend 45 minutes of his time talking to him. 

Brian saw Paul, he gave some hope tempered by reality, about Jamie and suggested we speak to Tony Oakhill from Bristol.  If we ever had any doubts about the care and humanity of oncologists Tony dispelled them.  He is a great human being!  Having never met us he spent 45 minutes talking on the phone.  His advice came across as intelligent, considerate and not offering any miracles.  He ended the conversation by not only making sure that we could and should call him with further question but also giving us his home phone number and making it clear that we could call him there.  Our consultant remember left us for 4 days to deal with the worst news she could give us!

The net/net is that RMH agreed to try one more treatment for Jamie.  "Something I was always prepared to do" said the consultant.  We think not!

There were also calls and emails around the world but it was always difficult to balance the family and realistic expectations of what the treatment could really do for Jamie.

Jane had arranged with CBBC TV for him and Isabel to visit TV Centre Shepherds Bush, see L&K Friday recorded, a Live and Kicking rehearsal and Blue Peter going out - Jamie was a great Blue Peter fan.  (2 weeks before he died he was still adamant that he was going to be a presenter).

So on March 5th despite the fact that he had relapsed, was running a temperature, was feeling rough off we went from hospital where he had been readmitted the night before.  Too late to see the recording but the BBC gave him and Isabel a brilliant time!!!  They met Zoe and Jamie T - see Jamie’s web site www.startrekv.freeserve.co.uk.  Jamie was a real Trekky.  The web site is 70% his own work with only minor tweaks from Brian.  Not long before he died we bought him a Voyager StarFleet Commander uniform.  He was laid out in this and it was his intention that when he died he would go off to Starfleet Academy, become a Starship commander and then travel the universe putting wrongs right and bringing different races together in peace. 
 

On 11th March we tried a very experimental chemotherapy treatment.  This knocked what little was left of his immune system for 6.  For us we knew that this was his last chance.  If we could not get him in to a stable remission there was no point putting him through a BMT.  This was really difficult to grasp:
· it was only 4½ months from diagnosis
· ALL was meant to be curable
· there must be a way somewhere/someone in the world that had an answer

So we burned up phones, emails and fax lines searching for someone that could give realistic hope.  I stress realistic - Jane and I had never considered putting Jamie through any treatment that had no sensible chance of working.

On March 25 - Jane's birthday and the date planned for Jamie's BMT - the inevitable happened.  Jamie got an infection and had to be admitted to St Georges.  True to character Jamie was more concerned about spoiling his mother's birthday than the fact he was unwell.  After 3 days it was decided to transfer Jamie to the Marsden.  They never really got to the cause of the problem but the suspicion is that he got so constipated that the infection spread to his stomach.

So Easter was spent in hospital with Jamie really down and the very mention of chocolate enough to make him heave. 

We got Jamie out on 7 April and he seemed much better.  Two days later we were out in Richmond Park with Jane's mother when suddenly Jamie says his arm feels "fuzzy".  We sat down for a bit and he appears to think it has gone away.  When we start walking back he again complained of "fuzziness" this time also in his leg.

The word STROKE jumped to our minds.  We had been warned that Leukaemia was very unpredictable and that is was common for it to attack the brain.  Back at Jane's mother’s we let Jamie rest and try not to show him how worried we are.

He says he is feeling better and we head off home.  The night is peaceful for Jamie, Jane and I try to get calm and hope that it's not what we think.  Clearly this is not great.

Next day, Saturday, starts ok, Jamie has a little fuzziness but otherwise not too bad.  Lunch passes but as we get in to the afternoon it is clear that the fuzziness is back and we start to fear the worst.  Frantic phone calls to RMH and we agree to take him in.  By the time we get there Jamie has lost almost all control of his limbs and shortly after arriving he loses his power of speech.  This is horrible.  Jamie is really worried, we were in panic.  This was our worst fear - Jamie being frightened and worried and us unable to reassure him in all honesty.  The doctors tell us to expect the worst - the Leukaemia is in his brain and there is little that can be done.

They suggest a CT scan which we agree to.  It seems very unlikely that we will get out of RMH tonight so we get Jane's sister and brother in law (David Anderson of Radio 4 management, as it happens!) to come and collect Isabel.  The CT scan is inconclusive, some potential signs of disease but nothing certain.  Jamie is suddenly feeling a whole lot better and we are given the chance to take him home.  Jamie by now has really had enough of hospitals so we cross our fingers and head off home.  The strokes never returned thank goodness - no one could really explain these ‘episodes’ - it was only in the last week it was clear that the Leukaemia had finally spread to his brain.

But for Jane and I the really awful realisation that we going to lose our beloved son is all too clear.  It makes us more certain than ever that from here on in we will do everything to give Jamie as good a quality of life as we can.  But we are not prepared to try anything that would be unpleasant for him or make him feel frightened.

I had said above that we did not feel at one with our consultant - over the next 2 months the situation would get worse.

Jamie continues to have frequent blood tests and on 23 April we heard that he had substantial blast cells in his blood.  The chemo had not worked - our and his last chance was gone. Believe it or not there are no standard palliative treatments.

Our feelings were that while Jamie remained well and was enjoying life then he should be treated with whatever was necessary to give him a chance of staying that way.  If this meant frequent blood and platelet transfusions, steroids and "maintenance chemo" then that's what he should have.

We took him to see Tony Oakhill on 27 April.  Tony was everything we had expected based on our phone calls.  He was kind, gentle and talked intelligently about Jamie's position.  Unfortunately it was not what we wanted to hear.  Jamie had no chance and the best we could do was let him go as gently as possible.  In fact Tony's view was that we should do nothing in terms of blood product support or other treatments.

We tried a doctor in Germany who was related to a friend of Jamie's, but with the same results.  He was prepared to try a treatment but was not very confident.  We decided not to.

The consultant at St. Georges, Sarah Ball, was a great source of information and support.  Her speciality is haematology and was therefore used to treating patients who need long term blood support.  Sarah was clear that Jamie could not be cured but that treating his symptoms was a reasonable thing to do.

Getting our consultant to come up with a sensible plan was another thing.  By now we felt we had been branded at RMH as parents who were prepared to try to keep their child alive at all costs even if it risked his well being.  The facts are that with ALL the course the disease will take and the final cause of death are very variable and uncertain.  Luckily some of the more unpleasant things that can happen never did.

So we embarked on two months of battling to get him appropriate palliative care whenever the disease returned, as it did more and more frequently, and making absolutely the most of all the time in between when he was feeling well.  The day after we saw Tony Oakhill was Isabel’s 7th birthday and we went to Legoland, wheeling Jamie around in a wheelchair between attractions to conserve his energy.  We all had a wonderful, enjoyable day.  There are some great pictures of Jamie enjoying Isabel’s family party on our web.

In early May we went to Thorpe Park for a day and on  20th May we got him topped up with platelets and headed off for a two night stay at the Alton Towers hotel where the staff were wonderful and he had the greatest time: swimming in the pool before breakfast, six hours around the theme park, again mostly in his wheelchair which got us straight to the front of all the queues, during which time he terrified Brian by dragging him on all the fiercest rides.  After a short rest he was up to do a treasure hunt around the hotel, have dinner, dance at the disco and listen to the entertainment until 11pm. It was amazing to see that enthusiasm and zest for life.

On Sunday 13th June he had the fantastic day at the Bikeathon described in our first mail.  On Friday 18th he insisted on struggling into school despite feeling very poorly and having an ominous headache, to attend a special Bikeathon awards assembly where all the teachers and children who took part were given their medals.  He was to have then planted the tree he chose the week before with his class in front of the school - to remind them of him when he was unable to be at school - but he was clearly very unwell and so we took him straight home.  In fact Isabel planted the tree for him two days after his funeral in a moving ceremony with his friends and teachers, battling against the noise of the South Circular.

We knew that day that this time the disease had returned in a more pervasive way and that this was the time to stop all treatment except that which would keep him comfortable.  Ironically that afternoon our consultant was the one suggesting further diagnosis and treatment but we knew the procedures involved would distress him too much and did not hold the promise of much better time so we declined.  Jamie helped in the decision - he was told that more chemotherapy could help his headaches but it would mean a General Anaesthetic.  He said no and we respected his decision, fighting back the "do you know you’re dying and this might relieve things for a few more days?" question.

We spent the next nine days with one of us constantly with him day and night, supported by the paediatric home nursing team who were terrific, and family and friends, who have been tremendously supportive throughout.  It was unspoken between us but we all knew that we all knew.  He showed no fear and there were many moments of enjoyment when he was awake until the final ghastly 36 hours when he was released from further suffering.

And now the concert - another jump into the unknown.