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16. June 2016 21:28
by Eleanor Massey

The ward with the bald kids

16. June 2016 21:28 by Eleanor Massey | 0 Comments

We were on our way – lift or stairs? I can’t remember. I can’t remember any actual walking after leaving Ward 75. We’d had our briefing; “there’s still a chance it’s not blood cancer” “some people do go to the ward and end up going home with a perfectly un-sinister diagnosis” etc etc. The Registrar was certain though – I could tell. I guess they think giving us a last morsel of hope helps when popping your ward 84 cherry. Aside from a night after delivering Jacob and a night when I was a nipper with suspected juvenile arthritis, I had never slept in a hospital. I didn’t even know where parents slept. As if there was any chance I was going to sleep.

With permission, the three of us headed to the canteen while Ward 84 got a bed ready. My parents arrived to find us in pieces scattered over the empty dining room. Spencer was baring bad news on his side – it made my heart break a little bit more as every relative was told; the devastation seeping from the phone. My phone was going crazy with questions and confusion. People generally just could not comprehend. I remember noticing some large TV screens lining the walls of the room, and watching for Jacob’s name to pop up like I’d taken a ticket in Argos. Nothing came up – this wasn’t their purpose – and as the minutes ticked by I got more and more anxious about how long we were taking to go up to the ward. I think we needed just one last moment in a normal environment before stepping inside a child oncology ward. I was petrified. There’s be loads of kids like on the charity appeal adverts and we’d feel like intruders; still unsure where we belonged. When we finally went up to the second floor and through the doors, we were greeted by the staff on shift. They had rung down to ward 75 to ask of our whereabouts and apparently couldn’t believe we had nipped to the canteen. They were shocked by how well Jacob looked, and how ‘full of energy’ he was. To us Jacob was sedate and weak, but of course – the nurses would have been expecting a very poorly, blood-thirsty child being wheeled through in a panic.  Jacob was pretty excited about the prospect of a sleepover, and when he was allocated his very own four-bedded bay he was thrilled. We would later discover what an absolute godsend it was that, being Christmas, the ward was almost empty and in seeing our distress, staff kindly allowed both me and Spencer to stay the night with Jacob.

We were given a tour of the ward – so many bright colours; drawings adorning the walls and an impressively stocked fish tank. Jacob was transfixed to the deep sea diver and I met my first Cancer Mum. I will never forget the impact this exchange had on me for the rest of my own personal journey. Perhaps she just happened to be wandering the corridor with a spare biscuit that night, or perhaps she is just a wonderfully caring person who recognised us as the lost soles we were. Like a rabbit in the headlights, fresh meat…we must have stood out. I grew to know the signs and myself, could soon spot a newbie from a mile off. Before we had even got a bed, before we even knew we were in the right place – I decided that I wanted to be like this lady one day. I wanted to be there to wrap my arms around a mother whose life had been shredded to pieces; to say the right things, to encourage, to provide hope. That is what she did for me that night, along with a few other mums who came to join her – like a team. It was such a nice atmosphere, and I couldn’t understand how that was possible. How were they all smiling and being happy? That 20 minute exchange gave me the kick start I needed. If they could do it then so could I. As Jacob finished munching his biscuit we headed off to our own big VIP suite.

By this point my head was bursting with so many facts. The concise explanation of possibilities from the Registrar, the tips from those who were living it, and further information from a night shift nurse who took care of us that night. I knew Jacob needed blood and he needed platelets. I knew that platelets help blood to clot, and that Jacob’s shortage of them was responsible for the growing bruises and spots that continued to creep across his body. I knew he would feel a million times better once he had a transfusion. I learned of Jacob’s blood type and that it was on the rarer side. I learned that his blood was being transported from somewhere away from the hospital. I felt ashamed that I had never given blood, yet here I was lay in hospital wondering where the hell my son’s god damn blood was; the life saving nectar that some selfless person somewhere had taken the time to donate so Jacob could feel better. The hours I lay in the bay that night were without doubt the longest of my entire life. As the boys snored away either side of me, I was both confused as to how Spencer could turn his brain off so quickly, yet relieved that he was refuelling for some serious mileage the following day. I, however, would continue to run on empty for a good few days yet. I lay down in the cupboard which cleverly transformed itself into a parent bed, and me and my mind were allowed to wander. As my anxiety regarding Jacob’s lack blood cells grew, so did the pile of tissues next to the bed. I don’t think I’d have been physically able to stop the tears flowing at any point that night should I have wanted to. Lucky for me I didn’t want to stop crying. I cried for Spencer, and the shock he must have felt. For my parents, and how unnatural it was to see their baby girl dealing with such horrifying pain that they had no control over. I cried for our Lucy, for the days and nights she will miss her Mummy. I cried for our unborn baby; for the big brother he or she may never get to meet. The beautiful nurse taking care of us that night had a look of knowing empathy. She was gentle with a kind voice; quietly replenishing my tissues as required.  Although we had yet to have an official ‘talk’ with anybody about treatment yet, since Jacob remained undiagnosed until the following day – as the night went on people had rapidly started using ‘when’ in their sentences where the ‘ifs’ once were. It was clear to me that Jacob did have leukaemia, and everybody knew it. A Christmas eve bone marrow aspirate would confirm the diagnosis. Different dates and timescales had been banded about in conversations. I knew that if their suspicions were correct, Jacob wouldn’t be leaving that ward for at least a month. I knew that the treatment was long – I’m talking years. This is what the rest of my tears were for.

I cried for Jacob. For the sheer enormity of what he was about to endure – and it wasn’t the prospect of pain that upset me at this point. If I’m honest I don’t think the prospect of death even upset me yet. Jacob was three years old. He was witty and clever with a big personality. He was popular at nursery and had a real status amongst his friends who would chant his name in unison when he arrived of a morning. Jacob was confident – a trait I have desired more than anything else in my children since I can remember. He was sociable and more importantly, he was well socialised. Now my psychology degree could be to blame for this, but the rest of my wander involved me imagining Jacob cooped up at home, never allowed near other children again for the next two years. Never allowed in public play areas, to nursery, to school... The only thing I can liken these thoughts to is mourning. I was getting ahead of myself; convinced we were going to have to lock Jacob away from the world. I mourned Jacob’s popularity. I mourned his sociability. I felt sad that he may no longer have any friends. On reflection I feel it’s quite odd that within hours of arriving at the hospital I was already fixated on the psychological impact of his possible diagnosis. I may have just been distracting myself from the fact that this frigging blood STILL wasn’t here. Doesn’t anybody know my son needs a blood transfusion immediately?!!!

And with that the doors to our bay swung open, and there balancing on a blue tray was a gleaming bag of AB negative liquid gold.