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24. May 2016 22:29
by Eleanor Massey

Merry Cancermas

24. May 2016 22:29 by Eleanor Massey | 2 Comments

“His plan was working. As the rivers ran black with his army he knew that his job was almost done. He worked fast – it can only have been a few weeks since his unwelcome arrival at this perfect place; once so clean and unscathed. It wouldn’t be long before the mission was complete, but he feared that something was changing. He feared that a Warrior had been born.”

My floppy blonde-haired blue-eyed Jacob walked up the corridor of Ward 75 with his Daddy by his side. He was grinning from ear to ear despite his sickly appearance. This was the second time he had been in a hospital in his life, and there he was walking towards me with a cannula in his hand – so very proud of his new 'wrap'. I can’t quite picture the look on Spencer’s face as I attempt to recall it, but I know it wasn’t his usual cool-as-a-cucumber, ‘my kids don’t get ill’ kind of look. I had been at home with our then 15-month old Lucy while she napped, and having a lie down myself after feeling a bit groggy due to my newly discovered pregnancy. Google had won the fight over sleep, and as I tapped in Jacob’s symptoms – 'tired', 'pale', 'yellow', 'bruised', the list of suggested diagnoses got more worrying as I scrolled down. I had remarked to Spencer some three weeks ago upon walking into the living room where he sat watching the television with our friend Paul that I thought Jacob had cancer. As a young girl I believed I had psychic powers, and had the tendency to blurt out random predictions so I could later tell people I told them so. This quite juvenile habit followed me into adulthood, and having noted that if you shaved off all Jacob’s hair he would look like an oncology kid – what with his dark rings under his eyes and yellowy skin tone. Strangely, once I had outed this thought to Spencer and Paul - and been subsequently tutted at - I completely dropped it altogether; even when I lay in bed scrolling down the NHS Direct website as I reached the bottom suggestion – leukaemia. Not possible. Not my child, not a chance. Anaemia at worst, which concerned me enough to wake Lucy and head to my parents house since Spencer wasn’t answering his phone and he had been gone a little longer than I was comfortable with. I had the only set of house keys, and was mostly concerned that if Spencer came home only to find he was locked out, he would be even more cross with me; after being pretty disgruntled by the fact that he already had to waste his Sunday afternoon in A&E. We had taken Jacob to the GP only four days prior, and they had prescribed him antibiotics. Doctors know what they are talking about right? In Spencer’s mind his children were strong and wouldn’t ever need to go to hospital. After showing my mum the bruises up Jacob’s back in church that morning, she persuaded me to persuade Spencer to take him to the hospital to get checked out. It was Christmas Eve Eve and it would be hard to get into the doctors any other time that week. She later told me that having known the symptoms, she feared the worst.

When I arrived at my parents I immediately rang the receptionist at A&E; I really needed to let Spencer know that I had left the house and he needed to come here for the keys. He’d be really mad at me if he had already left. Why the hell wasn’t he answering his phone? After asking the receptionist if Jacob had gone home yet, her instant response was that she doubted he would be coming home, and that he would most probably be being admitted. My stomach crashed to the ground. How on earth could my little boy be sleeping the night in a hospital? What do you put in a bag when you sleep over in a hospital? It was at this point that what I can only assume was adrenaline - dizzying my mind, clouding up my head and filling my veins with electricity – flooded me, and did not leave my body for a good month or so. 

Having had a brief conversation with Spencer via the reception desk, where he explained that he had left his phone in the glove compartment of the car; he informed me that they seemed pretty concerned that he had “some mad foreign measles or something”. They had asked some pretty generic questions about whether Jacob had been out of the country recently, and were interested in the rash that covered his torso. There was no rash when I dressed him this morning, or when I bared his back in church for that matter. It was between me hanging up the phone and arriving - bag in hand - at ward 75 where a side room awaited Jacob, that Spencer was delivered the bombshell. Sat alone in a room with his son who could never possibly get sick.

So as Jacob and Spencer walked the corridor towards me where I waited outside his newly-allocated bedroom - wearing his electric blue woolly V-neck jumper and beautiful smile - his Daddy knew. For approximately a minute and a half as I watched them walk about 12 steps towards me, Spencer knew, and I still didn’t. Life was still normal for me. Spencer, the eternal optimist had just been told that his perfect little boy most probably had a type of blood cancer.  Cancer... He didn’t even agree he needed to go to hospital to be checked out.  All I can think when I look back at that night is just what must have been going through Spencer’s mind.  At least I was prepared, albeit subconsciously.  Having honestly not even considered something so sinister since I stated those weeks prior that I thought Jacob had cancer, it's possibly surprising that when Spencer relayed what a doctor had just told him my response was to scream through my tears “I TOLD YOU!!!”.

The only explanation for this can be the mind’s defence mechanism protecting me from emotional turmoil in the weeks leading up to Jacob’s diagnosis.  After years of being branded a drama queen, a hypochondriac (and I knew I was nowhere near as overprotective as some new mums) and silly..  I had just learnt not to let my anxieties get the better of me, and in this particular instance I sought comfort in the diagnosis of minor illnesses that masked the real issue.  Jacob has smelly breath, so undoubtedly a sore throat.  He was weary and had temperatures.  His friend had tonsillitis, so Jacob probably had too.  It has only been since my knowledge of leukaemia has advanced through my experience of caring for my son that I have looked back and realised that Jacob had some other quite telling symptoms – vital pieces of the puzzle that I had disregarded.  Jacob had had a nose bleed for the first time in his life; completely unprovoked.  It was one solitary drip of blood, but his nose bled all the same.  Also the spots that covered his trunk when he was assessed in A&E turned out to be petechiae; little red dots on the skin caused by broken capillary vessels; in Jacob’s case due to a dangerous shortage of platelets in his blood.  I had in-fact noticed that Jacob had some little marks like this on his cheekbones for a couple of weeks, and having always wondered when freckly adults first get their freckles (after all, you don’t get freckly babies!) thought it was just the start of these.  Wrong.  My theory, therefore, is that I was protecting myself from complete hysteria, since it would probably have been a couple more weeks before I would have got to the stage of having Jacob’s blood tested.  Yet when Spencer said those words to me, everything over the past couple of weeks flashed before me in some sort of speed rewind, and I declared that I knew already.  Spencer just nodded as he weeped.

As well as feeling really sorry for Spencer at that moment, I also kept thinking about the poor nurse in the room with us at the time.  She seemed to have absolutely no knowledge of Jacob’s triage assessment, and was merely plumping the pillow when Spencer blurted out what the doctor had said once we all took our places in what has become ‘that room’.  For months following that evening I kept thinking about that nurse.  It wasn’t an oncology ward; 75 is very much general paediatric.  Many of the children who end up on the oncology ward at RMCH have actually been previously diagnosed at their local hospitals and later transferred, as it is a specialist centre for paediatric oncology.  I couldn’t help but keep thinking of how she felt to hear a daddy say to a mummy - about a little boy who was standing right there in the room - that her child probably has cancer.  She stood with the pillow in her hands and watched as one family’s life came crashing down.  I saw her some months later and asked her if she remembered us.  She did.  She said many of the staff working that night remember the little boy diagnosed with leukaemia at Christmas, and that she had often wondered how he was doing.  It’s funny – I had often wondered how she was.  There was often times as our “journey” continued, that I found myself feeling sorry for the people around us, as a result of hearing about Jacob’s life threatening illness.  Trying not to make people feel uncomfortable or awkward becomes a bit of a daily chore, and I will no doubt talk about this further into this recollection of events.

As mentioned, there was one other person in ‘that room’ with us that night.  Jacob.  As resilient as ever, cannula in hand and probably feeling rotten to the core but just continuing to get on with it as children do.  He looked confused, and he looked concerned.  I really didn’t hold back despite his presence, I couldn’t, and he had quite possibly never seen his mummy cry before.  He silently watched as I sobbed down the phone to my mum.  Intellectually oblivious, but somehow slightly aware.  After a briefing from a truly amazing Registrar named Dean (and we would later find out how fortunate we were to have an amazing Registrar on shift that night to give us the most concise and thorough explanation possible) we were prepared to enter the ward with all the bald kids. My imagination could be running away with me here, but I swear the nurses congregated; lining the corridor as we walked away from ward 75, and away from the world of general paediatrics.