Each year we plan a May Bank Holiday barbeque with our friends and each year something contrives to postpone it.  The first time, happily, was due to the unexpectedly early birth of our son, Alistair.  The last time was when we took him to Ronkswood Hospital, Worcester, where he was diagnosed with a brain tumour.

 He hadn’t been “quite himself” for about 3 weeks; but he didn’t seem ill either.  He would occasionally be sick, generally in the morning, but then appear fine – full of verve and vigour.  He was, on reflection, a little more tired than usual, but this was the end of the winter term at school and many of the other reception children where feeling over tired too.  In the week leading up to his admission his symptoms worsened and his vomiting became more frequent.  Our GP sent us to Ronkswood – we left our 2year old daughter with our friends.  Prior to leaving I telephoned my mother.  “Don’t worry”, I said, “He’s not that poorly”.  It was Bank Holiday Monday and Alistair was 5years and 3 days old.

 At Ronkswood we saw the paediatric team one at a time and with increasing seniority.  We were warned that it could be this or that, including meningitis or a brain tumour.  Alistair was racing around the ward, and in better health than we had seen him for a day or two and it was hard to believe he was ill at all.  The consultant booked at CT scan and, as time was getting on and Lauren, our daughter, was still lodged with friends, my husband returned home to get her to bed.  I suppose it must have been about 9.30pm, but I can’t really remember, and this inability to remember small detail was to characterise the coming days.  I can re-call that the CT scan was booked for 11pm.  I could see through the glass partition whilst the scan was taking place and the animated behaviour of the staff told me something had been detected.  The staff were sombre as we returned to the ward down the long hospital corridor. 

 My husband returned to the hospital and we made all the necessary telephone calls.  Early the next morning we were transferred to The Birmingham Children’s Hospital.  By now Alistair’s condition had worsened considerably, he seemed to be only half awake, but he can remember quite a bit about that trip in the ambulance.

 At Ronkswood we had been given some basic information, but the real emotional pounding was yet to begin.  For days I felt desperate for some good news, but there wasn’t any.  We met the neurosurgeon, who explained the surgery, and what we could expect, both in terms of the next few days and Alistair’s long-term survival.  The news seemed really bleak, with a 50% chance of survival at 5 years.  We were given lots of facts and I think I listened, but I can’t really remember it all.  Somebody, my mother, I think, bought me a newspaper, but I just looked at it.  The words were meaningless and trivial.

 That afternoon Alistair had an MRI and, as I looked at his bare feet as he lay on the scanner table, I just prayed that I would have the opportunity to buy him his next size shoes and that he would recover enough to misbehave and I could get cross with him, in the normal way, but all that seemed so far away.  I cried throughout the entire scan.  Worse was to come.  By Wednesday Alistair was barely rouse-able and, shortly before he was taken to theatre, he ‘went-off’ as the staff put it.  He was stabilised and rushed straight down to theatre.  As we went into the anaesthetic room doors he started yelling for me and I gave him a hug as he was anaesthetised.  When my husband and I left the anaesthetic room, I suddenly heard an awful howl, the sound of dreadful despair, and I realised the noise was coming from me.  I just fell into my husband’s arms and sobbed.  It was easy to be brave whilst I was with Alistair, but we were separated now and I had no idea whether I would see him again.  It was nearly 8 hours, but Alistair awoke in spectacular fashion in ITU and was fine.  He was very angry with the world and pulled out several drips and drains, before he could be settled, but we were both delighted that he was okay.

 The rest of Alistair’s post-op recovery was uneventful and we were sent home exactly one week later.  A few days later we met the oncology team for the first time.  At our first meeting there was little new to add, and the consultant went through Alistair’s planned treatment.  Two days later, however, and it was all very different.  A ‘hotspot’ had been detected on the MRI and this changed the treatment considerably.  Alistair would have to go through an intensive programme of chemotherapy and radiotherapy.  We were given the facts about each treatment, the short term and long term side effects, and what we could expect.  It just seemed so awful.  Like hi-tech torture and no guarantee of success.  We asked loads of questions, but the answers were very hard to hear.  I can remember going home that evening and feeling completely overwhelmed by it all.  I always found it harder once the children were in bed, I always felt sadder and had a greater sense of hopelessness.  I still do.

 After a while I learned not to ask questions….the answers were too painful.  I felt as though my feet had been nailed to the floor and each passing person was taking a swing at me. “We need to tell you this about your son”…bash…”We need to tell you that”….thump…”The potential complications are bad”….bash….””Some children die”…thump.  That is not how the information was presented at all, but it is how it felt.  I could not bear to hear any more bad news, so I started to accept what I was told without question.  I became a ‘nodding dog’.  Whatever I was told, I just nodded.

 For one reason or another over the next few weeks, it was an emotional roller coaster.  Chemotherapy ate into our family routine, and we would hardly be at home for more than a day or two, without having to come back because of a high temperature.  The upheaval began to take its effect on Lauren, and she started to wet the bed at night.  Preparation for the radiotherapy was also an anxious time.  The question was could Alistair manage his treatment without a general anaesthetic?  He was considered borderline, given his age and temperament, but I was determined that he would not have a general anaesthetic (GA).  We already had a battle to get him to eat, his weight was very low and discussions were already taking place about the need for a naso-gastric tube.  In order to support him through, especially in the early days, we bribed, cajoled and instructed.  I remained anxious throughout that Alistair would not want to play this game, but as time went on it was evident that the radiotherapy did not bother him.  In fact, I would almost say he enjoyed it.  To me it looked terrible, I knew it was doing him some good, but I also knew it was doing untold harm.  I do not know why, but I was so very tired.

 During this time life started to settle down.  We had a routine, of sorts, and some of the short-term side effects were not as bad as we had feared they might be.  The 6-½ weeks of radiotherapy passed more quickly than we had expected.  Alistair is currently undergoing a regime of chemotherapy.

 The telephone, in the early weeks, turned into a monster.  We were grateful for each individual call, but the combined effect, calls at all times of the day, was invasive.  We found that callers were not happy with short responses and demanded full details.  Over and over this would happen.  The telephone threatened to control our lives.  I can remember trying to tell my husband what had happened that day at the hospital and, each time I began, the phone would ring.  One of us would be occupied for the next 20 minutes or so with the call, and then I would try to outline the day again, and again the ‘phone would ring.  The constant ring of the telephone threatened to cause more trouble between us than the stress of Alistair’s illness.  In the end we had to make it clear to callers that, sometimes, there was nothing new to tell, and that, at other times, Alistair was well – and we weren’t pretending.  We also established a set of rules.  We didn’t answer the phone if we were trying to talk to each other.  We didn’t answer if we had visitors, having our dinner, trying to sleep or playing with the children.  The answer-phone enabled messages to be left, but we would not necessarily return calls.

 We still do not have any long term certainty about Alistair and, survival permitting, we don’t know what the long term effects will be, or to what degree.  I am just emerging from that ‘nodding dog’ phase, which means I am asking questions again and, again, receiving hard to hear answers.  All I can do over the coming years is to play my role – to look after Alistair’s sole whilst the hospital takes care of his body.  I still find it hard not to cry over his sleeping head.

Alistair’s Update

 During the winter of 1999 Alistair continued his chemotherapy treatment at Birmingham children’s Hospital.  Gradually he was able to attend school more frequently and for longer periods.  We went on holiday to a small seaside town and enjoyed ourselves – in spite of the damp October weather.

 During late November two things made a welcome, if somewhat slow return.  First, despite the chemotherapy treatments, was the re-emergence of his hair.  It was a little darker than I had remembered it and was very soft.  The second thing to return was his bottom!  During his early treatment Alistair had lost a great deal of weight and became almost skeletal.  Gradually his appetite improved and he began to fatten up, it was so nice to be able to grab his bum!

 In March 2000, following a clear scan; as all his post-op scans had been, treatment was concluded and confidence was high that Alistair would continue to do well. 

He had a Hickman Central Venous Line in situ for the 10 months of treatment, which had prevented him from undertaking his favourite of all activities – swimming.  Within a month his central line, which had become a symbol of his cancer, was removed and we once again took him swimming.  He raced to the far end of the pool and leapt in before we could stop him.  There was only one problem….he had forgotten how to swim.  Unperturbed, he resurfaced and leapt in again.

 Alistair’s energy levels continued to improve for a week or two and I had quite forgotten just what an active child he could be.

 24 little hours

On Monday 8^th May Alistair attended school as usual for the whole day.  Following school I took Alistair and Lauren to the local toyshop where they chose a little toy each and we went home.  On the doormat was an invitation for Alistair to attend his friends 6^th birthday party.  I completed the reply slip and gave it to Alistair who, with Lauren, ran to his friend’s house 2 doors away.  Alistair chatted to his friends mum for a minute or two about his own birthday party held a few days before, and then ran home.  As he got closer to the house I could see he was very out of breath, but smiling.  He sat down for a few minutes to recover and then played upstairs with Lauren until his evening meal was ready.

 He ate so much that evening that I looked at his plate in mock surprise and said “where’s all your dinner gone?” checking under the table and saying with a playful terseness “You can’t have eaten it all!”  He was delighted!  And so was I.

 He went to bed at the usual time and following the usual routine.

 It was the last normal conversation we had.

 The following morning he was very sick.  He was unable to move his left arm and he was very sleepy.  Within a short time he was barely rousable and by the time I got him to hospital he was unconscious.

 Alistair had a scan and it confirmed what we dreaded.  His cancer was back, it was widely spread and nothing could be done.