The Diary of a Mother, Her Son and His Monster

THE DIARY OF

A MOTHER,

HER SON

AND HIS MONSTER

CAROLINE BURCH

First published in 2014 by Empire Publications

Smashwords Edition

© Caroline Burch 2014

ISBN: 978-1-909360-27-3

The author asserts the moral right to be identified as the author of this work.

Published by Empire Publications at Smashwords

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For Elliot

ABOUT THE AUTHOR

Caroline Burch was an NHS manager in Neuro-rehabilitation when her son developed cancer. Determined to share her story, she wrote ‘The Diary...’ and now plans to take her writing further.

This is Caroline’s first published work.

Any mistakes, medical or nursing are all mine. This diary is purely my memory of events which, given the stress of the situation, may not always be 100% factually correct.

Acknowledgements

To the many professionals, carers and support staff who worked tirelessly to save Elliot’s life, I will be forever in your debt.

I am also eternally grateful to the people who, with continued hard work, make the NHS what it is today.

Heartfelt thanks to my mother for repeatedly reading and amending every single page of this book and for being the most amazing woman I have ever met. You gave up work and your life to be with us during Elliot’s ill health and I cannot thank you enough. I could not (and cannot) do it without you.

To my father, thank you for so much for supporting us each and every day, for the nightly visits to hospital during the difficult days, for keeping the car on the road and for the sausage butties!!!

Thanks must go to David for your quiet support, gentle nature, visits to hospital and for the Reiki healing during those difficult months.

Thanks also must also go to Lynn for the nightly hospital visits, for all your support and care and, of course, your home cooked food. We appreciate your culinary skills.

I must recognise my friends and family who have provided unwavering support and given me the impetus to carry on writing this book. I send individual gratitude to Gaynor and Craig. You have both been amazing.

To my nursing friends David and Cath who answered my clinical questions and jogged my memory when it was needed, many thanks. We were a good team and I miss you lots.

Gigantic thanks must go to Empire Publications and all the staff. You gave me a fantastic opportunity to publish my first and most precious book. Individual recognition must be given to Ashley Shaw (my patient and positive editor). I send you my huge gratitude for your faith, guidance and patience. You gave this book format and pace.

I wish also to thank Ramsbottom library for guiding me towards appropriate research reading.

Finally and most importantly huge love and tremendous gratitude goes to Elliot. Without you this book would not exist and I would not be a mother. I am so lucky to have a son who brightens each and every day. You are wonderful.

Don’t forget… I will always love you more!

Act 1 - Inside

I began life when she was only two weeks pregnant. She didn’t even know she was pregnant and I was already living inside her; establishing myself and my home inside her son. It is called ‘double hosting’ in my world. Her son was feeding from her and I was feeding from her son.

I was just one single cell when I was created; caused by a tiny mutation in the DNA structure of one minute cell. I should have died by a process called Apoptosis, where the fault or mutation is recognised and the cell automatically dies or is destroyed quickly, but I did not die. My mutation lived inside her, contained in a sac that was only one centimetre in diameter.

I quickly divided into two cells, called daughter cells. The process of destruction had begun. I was programmed to multiply, develop and grow strong in this tiny protective bubble.

I am here, all cosy and warm, embedded in his left kidney. I am now six cells. I have an ability to rapidly reproduce. My clever, cunning ability will ensure my survival. I am quick and I am silent. I know where to hide in my home. I have buried myself deep into his left kidney. I will grow bigger and stronger as each day passes. I will be able to stay undiscovered for a long time, but I will be here, causing destruction and mayhem where there should be joy and laughter.

This poor boy has no chance. I am programmed for death. I am ready to do battle and I will win.

Friday 20th June 2003 – Friday 4th July 2003

My son came into this world at 12.02am on 22 June 2003 following a lengthy labour. He was hastily pulled from me using a Vonteuse suction cup and the strong muscles of a female obstetrician due to delayed delivery.

Elliot arrived with a slowing heartbeat and urinating all over. As he was passed from obstetrician to midwife, to student midwife and finally waiting paediatrician he sprayed each and every one of them. All I saw was a flash of blue eyes and a jet of urine as he was taken away.

Being so unfamiliar with babies, my new addition felt almost like an alien. He was initially a quiet and subdued baby but that soon changed! From about three in the morning he began to exercise his lungs to amazing capacity as he screamed and cried all night. I was so pleased I had paid for a private room; at least his constant wailing was anonymous. I watched him during that first night shocked, scared and in awe. I was completely mesmerised but also terrified with the weight of responsibility.

When Elliot was born, I had not decided upon a name for him. Like most expectant mothers, I had ploughed and trawled my way through lots of baby name books, but I struggled to put a name to him without considering his character and looks. Therefore, when Elliot was born I just called him angel. My angel.

I tried to establish a routine as soon as we arrived home from hospital, but with Elliot’s nature, it was not at all easy. He was constantly awake and was often crying. The piercing wail and terrible sobbing were a huge shock to my system. I presumed this level of discontent was within the ‘normal’ boundaries for new born babies and the midwife did not seem to think anything was wrong.

At three days old, Elliot became quiet and sleepy. At first I had thought this was a good sign; a sign that he was forming a routine, but he was so quiet I was also worried that he might be unwell. The midwife arrived that same morning and I discussed Elliot’s listlessness and behaviour. She had a good look at him, did various tests, and decided that he needed to go to the hospital. She thought that he might be anaemic or be experiencing low blood sugar. I telephoned my mother straight away and hurriedly gathered personal items for both of us in an overnight bag. It was awful. My emotions were a mess. I had coped for only three days before we were going back to hospital.

Elliot, my mother and I all quickly travelled to the children’s ward at the local hospital. We were immediately shown to a bed and blood tests were taken while Elliot lay even more subdued and quiet. The blood results soon returned and indicated that Elliot’s blood sugar was very low. He was becoming fairly unresponsive by this time and the staff were monitoring him closely. He was given some formula milk (instead of breast) and then investigations were started. I was asked to express breast milk via a pump so that they could monitor Elliot’s fluid input compared with his output. I agreed to do this willingly and straight away the problem was identified. There was no milk being expressed by the pump. Elliot had not been feeding because I had not been producing milk. My poor angel had merely been suckling for comfort. As a new mother, I had not realised that my milk had not been coming through, and so, in effect, Elliot had been starving! I cried for hours, feeling that I had almost killed my baby but the ward staff were wonderful.

Fairly soon after his first formula feed, Elliot became more and more aware. Gradually, over a couple of days he started to drink larger amounts of formula and his blood sugar stabilised. I remember the ward staff calling him ‘baby’ because he didn’t have a name. His medical notes and name tag were labelled as ‘Baby Burch’ which made me feel awful. Not only had I starved my son, I did not even have a name for him!

The day after discharge from hospital, I studied Elliot, chose a name from the shortlist and quickly registered his birth with the local town hall. It still haunts me now to think that my poor angel had a set of medical notes before he even had a name or a birth certificate!

Not long after this episode, at only 14 days old, Elliot was again admitted to hospital, although this time at least he had a name and was not now called ‘baby’ by all the staff! It was a Sunday morning and we were snuggled on the sofa while Elliot was having his milk. Whilst feeding (formula milk out of a bottle, as I had given up on the breast feeding in hospital), I suddenly noticed he was going blue around his mouth and nose, just a faint blue tinge on his skin. His lips were pink and so I knew that he had sufficient oxygen, but if his lips started going blue as well, this situation could become an emergency. Elliot seemed well in himself, although he was his usual unsettled, grouchy self. I automatically called my mother to come over and have a look at him and tell me if this blue tinge was normal, although I doubted it was. She arrived not long after our conversation (I was lucky to have her living nearby) and could see the tinge of blue round Elliot’s mouth and nose, and so could her partner Daniel. My mum suggested we go to hospital to see what was wrong. Again we were admitted to the children’s ward.

During his second admission, Elliot was diagnosed with Reflux. What a nightmare! Gaviscon powders were prescribed which thickened his milk slightly and helped prevent regurgitation. It also soothed his heartburn. After another couple of days of monitoring and with advice to swaddle him securely in a blanket and to prop his cot up at the head end to help prevent acid reflux and regurgitation, we were again discharged home. Memories of that time are easy to recall. Initially there was the overwhelming feeling of being a completely inadequate mother, mixed with the relief that at least someone was able to explain why Elliot was always so unsettled and upset. It seemed it was not just due to my inadequate mothering skills, which of course was exactly how I felt, but also due to ill health.

Act 2 – Inside

We are now in the world with a single host. He has been born. We are the size of a grain of sugar, small, but still potent and destructive. We are rapidly growing, despite increasing cellular hypoxia. Just like you, we need oxygen and nutrients to live, but, due to our rapid growth, we are gradually being starved of oxygen. We must build our own blood supply and do it quickly by sprouting and splitting blood vessels.

Our blood vessels are developing. We have an efficient network now, providing oxygen and nutrients to keep us healthy. With our needs being met by our new blood supply, we can grow and spread, take over our host’s body and create havoc.

We must plan this battle carefully. We do not want to be discovered until we are strong enough to cause complete destruction. We must grow and move silently. Thread and weave within the tissues of the kidney. Once fully established there, cells will move to the lungs. That is our next target. We are planning our reign.

January 2004

I think writing this diary is the only solace I have in a hard world of motherhood, work and sleepless nights. Things are difficult to say the least. I wander round in a daze, only getting through the day by drinking coffee and working with adrenaline to boost my ever waning energy reserves. I’m shattered. So, so exhausted. I thought having a baby would be easy. Or at least easier… but it seems I was completely wrong. I live in a chaotic world of nappies, milk, business suits and crying.

I hate to admit it, because I always hate it when parents don’t appreciate their children, but, work is a source of peace and tranquillity. I have a demanding job, emotionally and physically… but compared to raising a child, it’s easy. I can drink hot tea and coffee and even enjoy a quick lunch. Right now my life feels hard work. I write this late into the evening after a long day. Why do I write instead of sleeping? It helps my sanity. It’s a way of getting everything out without constantly whinging to friends and family. It is cathartic. A release. I write about my life, Elliot, what we do and where we go. One day I would like him to read this, it will give him an insight into me and his childhood. The good times and the bad.

Despite the sleeplessness and Elliot’s restless nature, I would not change a thing about him. My son is the epitome of beauty. Inside and out. The pure love in his eyes as I pick him up and cuddle him is a wonder to behold. His smile lights up my life and fills my heart with multiple bursts of adoration.

But now it is time for bed. I need to try and get a little sleep between feeds and the long night ahead. I just wish I had more sleep. I crave and need it. More than anything.

Thursday 8th January 2004

Today has been particularly awful. The weather has been miserable, cold and rainy which has balanced my mood perfectly. I am exhausted and so fed up of the constant routine of my days. I do nothing but rush around. I rush in the morning to get Elliot to nursery by 7.45am, I rush to work, do as much as I physically can and rush back to nursery (preferably before he is the last child there, as that always makes me feel so guilty). I then rush home to begin the routine of tea, play, bath, sterilising, milk and bed. Today was no different. A continuation of the same. It is like running around and around in a hamster wheel. The monotony is difficult and generally boring. I enjoy very little of life at the moment, except those precious moments when I see Elliot smile and chuckle with his funny, distinctive belly laugh. I have no time to relax or enjoy anything else.

Elliot is one body’s work. He constantly requires attention, cuddles and reassurance otherwise he cries and becomes upset. I hate seeing him cry, therefore I generally have him in my arms, carrying him round while I do necessary jobs. A few people have told me that I am ‘making a rod for my own back’ and that I should ‘leave him to cry more and entertain himself’, but I just can’t do that. I cannot leave him to cry. He is obviously crying for a reason and, whatever that reason is, I need to try and help him, even if all he wants is comfort and attention. I feel like telling everyone that it is my back, and if I choose to make a rod on it, I will do, despite what anyone says!!!

Leaving work today was, as always, one of the most pleasurable parts of the day because it brought me closer to seeing Elliot again. As I left work, I closed my mind to the work part of my day and looked forward to the joy and warmth of a cuddle from my Elliot.

As I pulled up my collar and ran to my car, the darkness that surrounded the desolate hospital in front of me always unnerved my senses. It was dark and rather haunting when I left work. I jumped into the car quickly, turned the ignition and lights on while quickly pressing the central locking down and throwing my briefcase into the passenger foot-well. As I set off into the Mancunian night, my surroundings sent a quiet chill shuddering up my spine. The isolation and solitude around the now abandoned hospital was uncomfortable and always filled me with a sense of unease. I left my unit next to the hospital and quickly joined the neon, street lit road, the noise and traffic, footsteps and echoes that reassuringly told me that I was back in civilisation.

The traffic was exactly the same as every other Monday evening. Bumper to bumper! I moved along the busy road slowly, to be met by an even heavier, stationary queue of traffic near the end of the road. We were all heading in the same direction. I sat and glanced at the dashboard clock. 5.20pm. I had left work late due to a lengthy ward round which had made me late for the nursery and Elliot. Working full time in a demanding NHS job and being a single mother was a very difficult juggling act, far more difficult than I could ever imagine.

My thoughts had flitted over the day’s events, settling on staffing issues as I eventually turned right into the traffic. A couple of teenagers walked passed me, under an umbrella, trying to shelter from the persistent rain. Despite the elements, they were walking faster than I was driving. I therefore turned the heating up, disgruntled with their speed but pleased that at least I was warm and dry! This traffic was ridiculous! As I sat in the warmth of the car my thoughts drifted back to work. I needed to review the staffing documents I had drafted and pushed into my briefcase earlier that day. It was so much easier to work at home because I was not distracted or disturbed by staff, problems or phone calls. Hopefully Elliot had not slept much whilst at nursery and would go to sleep peacefully tonight. A wry smile came to my face; there was very little chance of ever sleeping peacefully with Elliot! He had pretty much been awake since the day he was born!

The rain pelted against my windscreen and dragged me back into reality. With the windscreen battling to keep the road ahead visible, I wondered why traffic seemed so much worse in the rain. If my journey continued like this, I was definitely going to be late. I yawned as the warmth began to make me drowsy. I was so tired; I had never known exhaustion like this. How had I arrived in this place? A single mother working full time, with the unwanted bonus of waking every two to three hours to settle or feed Elliot at night. It was not how I had planned my life at all, but now I was in the situation, I did not wish for much to change, except for having an undisturbed night’s sleep!

I wondered what I had actually done with all my time before Elliot was born and I just could not remember. I struggled to imagine my life without Elliot and it had only been six short, sweet, but sleepless months.

I was looking forward to holding Elliot again. I longed to see his beautiful face and cuddle him close to my body. The working day interrupted our time together but it was a financial necessity. I wondered what kind of day he’d had at nursery. Elliot was often tearful and unsettled, due to the painful condition of gastric reflux. Both in the nursery and at home, my son was often being held by someone. The natural warmth of human contact (particularly mine) appeared to soothe and calm him. The reflux required Elliot to have Gaviscon sachets in his milk and he had begun weaning at the tender age of four months, as the thicker foods often helped to reduce the symptoms of acid regurgitation.

I looked again at the clock glowing on the dashboard, 5.35pm. Elliot was probably going to be the last one at nursery again. My mum would be home from work now with the central heating roaring, the flames of the fire dancing around the lounge and the smells of food emanating from the kitchen. I felt sure clothes would be sloshing round the washing machine and Rosie, my mum’s golden retriever, would be lay somewhere snoozing happily.

I had moved into my mum’s when Elliot was only six weeks old. I hated to admit it but I had struggled to manage in my own home, due to the pressure of Elliot screaming and crying for at least twelve hours of the day, alongside the pressure of cooking, cleaning, washing, ironing, sterilising bottles, shopping, lack of sleep and maintaining the house, car and gardens. I was exhausted. I had no reserves left to rely on when I suddenly developed a bad stomach bug and was forced to admit defeat. I phoned my mum for help and while sat on the toilet with a bucket on my knee, I agreed to move in to my mum’s house, on a temporary basis.

As I sat in the car looking forward to the warmth of the fire and the promise of a delicious meal, I reflected how lucky I was to have such an amazing mother. She had rescued me that day and had provided help and support for Elliot and I during the last five months. I had still not moved out of her house, but vowed that I would leave once I had established myself back into the work routine and when Elliot was sleeping a little better.

I nudged forward in my car once again and indicated right towards the moors. I was nearly out of town and would be able to pick up speed soon. Elliot would definitely be the last one at nursery, again! Guilt swept over me in a wave, as I began my ascent up the hill, pushing forward to get there as soon as I could.

Elliot was now beginning to join with little activities at nursery, which I felt was really positive because I hoped it might somehow move his focus away from the reflux and pain. The staff at the nursery seemed so kind and caring, going out of their way to keep Elliot calm and contented, even if that meant the staff taking turns to walk around with him. The manager, Drew, was highly experienced with children. She was a kind, motherly figure and had dealt with reflux babies in the past. We were very lucky to have a place in such a caring environment and it was much better than the child minder I had initially employed, who had told me after three days of looking after Elliot that she ‘could not cope with him and could I please find someone else by Friday’ as she could not manage another week like that! I was shocked and rather worried by that statement and hurried to find a nursery for him. It was one of the best decisions I had ever made. The staff were fantastic and the nursery was so calm with him. I also had the added bonus of knowing that an experienced child minder could not cope for a week whereas I had been managing for six months. In a kind of macabre way, it made me feel much better!

The wipers continued to drive the onslaught of rain from the windows as I navigated my way around the parked cars, along the dirt track road and finally into a quiet car park. Unsurprisingly, there was only one car left in the car park, the manager’s car. Elliot was the last again!! Bright lights lit up the nursery entrance which was a welcome sight against the backdrop of heavy rain. I leapt out of the car, a sense of urgency rushing through me, and dashed to the front door, pressing the door buzzer heavily.

I could see Drew walking down the corridor with Elliot perched on her left hip, probably thrilled that she could eventually get home to her own children, who would be home from school and no doubt waiting for their evening meal. As Drew opened the door, a huge grin encompassed my face. As soon as he saw me, Elliot greeted me with a beautiful beaming smile. He leaned in towards me and held out his chubby arms, it was such a wonderful sight and brightened my long, difficult day. I took Elliot from Drew and cuddled him close to me while kissing him repeatedly on his face and body. He giggled and writhed around in my arms as I whispered sweet nothings into his ear and walked along the corridor with Drew.

Hi Drew, how’s your day been? Has Elliot been okay? I looked at Elliot. He looked fairly well and certainly cheerful! As we walked into the baby room to collect Elliot’s rucksack and coat, Drew updated me.

He’s eaten well today; in fact, he has eaten everything put in front of him. He enjoyed his milk and has had three poos. He’s played well and has done some sponge painting. We’ve put some Sudocrem on his bum as it’s looking a bit sore.

Thanks Drew. Sounds like a pretty good day to me, I said as I snuggled up to Elliot.

I placed Elliot’s rucksack on my back as Drew grabbed her coat and bag and switched off the main lights.

He has been a bit unsettled though, still needing his comfort and lots of carrying round, but nothing more than usual. Here, let me take that rucksack, Elliot’s getting heavy these days.

I laughed. I know; my arms constantly ache!

To Elliot’s great delight I blew a raspberry on his ever expanding belly.

He’s got a big, fat belly. I laughed as I buried my head into his squashy tummy.

Elliot chuckled and his belly wobbled as he grabbed at my hair with his left hand and yanked. This was his favourite pastime and one he was particularly good at.

Drew smiled. Ahhhh, there is nothing wrong with a bit of fat, it is always good to carry that bit of extra weight, then they can afford to lose it when they’re ill.

I don’t know about a few days!! Elliot has enough fat to last him a few months!!

We both laughed, Drew turned off the hall lights, locked the main door and we both dashed to our respective cars.