Caroline Burch experienced every parent’s worst nightmare when her son Elliot was diagnosed with cancer aged just six months old. To document her experiences she kept a diary detailing the ups and downs of her son’s treatment and the emotional anguish of their situation from diagnosis to remission.
Ten years later, and with Elliot happily recovered from the condition that threatened his life, Caroline looks back at the traumatic months when there appeared to be no end in sight to the misery.
Caroline’s story is proof that there is life after cancer and this book is a tribute to the tireless work of the individuals who help parents and their children emerge from their nightmare.
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Why did you write this book?
During my son’s diagnosis of Cancer, like all parents and carers, I really struggled to accept what was happening. I fought with myself, toiled, worried and became a complete and utter wreck. Following the end of treatment, I continued to struggle with my own emotions and found it difficult to come to terms with my son’s diagnosis and the future, which would always include Oncology services. It was then that I decided that I needed to try and externalise the situation and let it go, rather than holding it in and carrying it round with me. My externalisation strategy was to write it all down. Initially my writing was an endless ream of emotions and trauma but with the passage of time it gradually became more focussed and began to take shape. It was only then that I seriously considered publication.
By allowing the world to read my story, I hope I will be able to reach and help others who are going through or have been though a similar situation. My story is, luckily, very positive, although sadly, not all children are as fortunate. My son is now 11 years old and healthy. There have been no recurrences or remissions. If my story helps only one person see that there can be a life beyond children’s cancer, I will be happy.
Why are you donating money to charity?
I really want this book to help other people. When I was going through Elliot’s cancer treatment and care, no matter who was around me, I felt so very alone and isolated. Only a couple of people managed to penetrate the emotional brick wall I had built around me which helped me to function each and every day. One person who managed to help me and gave me so much support was our Macmillan nurse. She was a shining light in a very dull and depressing world. She was always there with her caring nature and kind heart, both at the hospital and at home. No matter how busy she was, she always had time to stop and share a few words or help with my tears. I therefore chose to help one of the charities who were invaluable to me, Macmillan Cancer Support.
Macmillan Cancer support will be receiving £1.00 per book sold. This is more than I, as the author, will receive. My aim is to make £1,000,000 for Macmillan. Please support this campaign; spread the word, treat yourself and buy a copy or buy as presents for other people…it is an amazing cause…
You can buy a copy of this book from:
Please visit me at carolineburch.com
Please enjoy the following excerpt from The Diary of a Mother, Her Son and His Monster.
We were soon ready to go. I gathered my angel in my arms and put the rucksack and my handbag on my shoulder. Time to set off and find out what was wrong, hopefully it was nothing serious. As we walked out to the car, I wondered whether this was related to his reflux. Perhaps he was having terrible spasms or was producing too much acid and therefore could not keep anything in his stomach? It sounded logical to me and made me feel a little better. I fastened Elliot into his car seat and strapped myself in. We were ready to go. Elliot was quite sleepy by now, but crying out in his slumber and squirming around. His mouth was down-turned in a sad face as I gently stroked his cheek. I couldn’t believe we were on our way to hospital for the third time in six months. I wondered whether this was a sign of things to come. I sat in the back of the car with Elliot, allowing the darkness of the night to envelope me whilst I held onto his hand. I was helpless and didn’t know what to do. I hated feeling like this. I was always a person who was in control, I made lists, planned and prepared for every event and eventuality and so this helpless situation I found myself in was not at all comfortable. I carried Elliot up to the ward and approached the nurses’ station; a nurse immediately stopped writing her notes and smiled up at us from her seat.
“Hello, can I help you?” she enquired.
“Hi, I think you’re expecting us, this is Elliot Burch” and I presented the bundle in my arms.
“Ah yes, bring him this way.” We were escorted into the first side room on the ward where a cot was ready for him, alongside assorted medical machinery. I stopped at the door and looked round. This looked serious. They were prepared for us, including machines, wires and monitors. Panic flooded through my body like a wave.
“If you just get him settled, I’ll be back in a moment to get some details from you.”
As the nurse left the room I gently placed Elliot in the cot and removed his all-in-one padded suit. He seemed hot and clammy and so I undid the buttons on his sleep suit and opened the front to allow air to his chest.
Warning bells were going off in my head, flooding my brain. I had worked in hospitals for years, I knew that this side ward was generally for children who were very poorly and needed close monitoring, because it was the closest room to the reception and staff work stations. It was also the first bed to be seen during the ward rounds. Looking at the machinery highlighted the fact that Elliot could be really unwell. Having worked with this type of machinery for years, it didn’t daunt me and I was not scared by it, but I was scared with the preparation the staff had done before we arrived. The vital statistics the GP had given were obviously significantly abnormal.
I looked over at my precious baby now in the cot. He was asleep but still crying out and writhing around, clearly uncomfortable. I did not know what to do with myself. Whether to sit or stand? Hold Elliot’s hand or leave him alone to try and settle? Vomit or collapse on the floor?
As I settled Elliot into the cot in the side ward, I felt I must be sleeping and that this was just one huge nightmare. The nurse returned and began to take observations and details from me about Elliot’s current health and background. Just as we began to discuss things a doctor entered the room which put a stop to the conversation.
He greeted us in a manner of kindness and efficiency whilst he checked Elliot all over, listening to sounds through the stethoscope, tapping his body with his fingers, feeling, examining and looking at his skin. After Elliot’s physical examination, the doctor turned to me and asked a series of questions from birth to present day, including his recent symptoms. I discussed everything in detail and the doctor interrupted when he needed more information or wanted clarification. I was struggling to think straight but tried to remain focused so that I did not miss a single detail which could be vital to Elliot’s diagnosis and care.
Once we had finished with questions and the doctor had taken a history he crouched down on the floor in fairly close proximity to me.
“You need to know that Elliot is really rather poorly. I’m unsure what is wrong at the moment. We need to take some blood and run some tests before we can be sure, but it seems, by the symptoms, that Elliot may have Meningitis or Septicaemia, or even both. Blood tests may confirm these diagnoses, but the blood tests will take a couple of hours to come back. I don’t want to wait and so we are going to start antibiotic treatment immediately. We will also put up a drip and keep him hydrated and run some routine blood tests as well.”
The diagnoses whizzed through my head. Meningitis? Septicaemia?
“We need to try and keep him stable and see what the next 24 hours bring. You’ll need to contact anyone who has been with Elliot in the last 24 – 48 hours to inform them that he may have meningitis. Everyone who has been in contact with him may have to take a course of antibiotics, but we will have the results from the blood tests soon and will keep you informed. You can have no visitors, unless they have recently been in contact with Elliot”.
I stared dumbfounded. The doctor stood up and reassured me that they were doing everything they possibly could and asked me if I had any questions. I shook my head. I probably did have questions, but my brain was throbbing and I could not verbalise anything cohesive. I was just about holding the tears in my throat. He then told me that the next 24 hours were critical.
Thoughts crowded into my head. How had this spiralled suddenly into something so serious and possibly life threatening? Would he get better? Would he live? I felt numb, my hands and fingers were tingling and I felt weak. Tears were streaming down my face.
