Hovering by our little boy, strapped onto a gurney in the hallway of the Poole hospital's children's unit, we tried to make small talk with the friendly paramedics that had travelled from Southampton to collect us, but they did more of the talking than both Jack and I.
Dexter was snuggly wrapped in his big sister's blanket he'd claimed months before, he was so docile and still, occasionally slipping in and out of sleep. We had to wait in the corridor while nurses panicked to get his discharge papers together. A girl I knew in first school walked down the corridor pushing her daughter, I dropped my gaze, unable to force pleasantries and embarrassed for anyone to see me in such a state, I was so puffy eyed and distressed and unable to communicate on any level.
Jack and I had been hiding all morning inside Dexters room. Southampton hadn't had a bed available, so we waited and waited, the day moving further from early morning.
I felt exhausted and drained from emotion; being unwell and the unknown was torture, plunged in a permanent state of disbelief.
I spontaneously cried, all morning, the skin of my nose was raw and the cold I'd been suffering from made a heavy mix of headiness I couldn't shift; my entire head felt like it was underwater and my brain felt like it was mush, laying on the floor of my skull.
Jack had gone home for a shower and packed a bag, then he went to his parents to chat with them and his siblings and to tell them the slightly news of us expecting another baby, a diamond amongst all the chaos.
I shifted in the chair uncomfortably as I waited, Dexter wasn't conscious, I kept looking at him, my tear filled eyes distorting the image of him, small and tiny in the large hospital bed. I set up a what's app group, I filled it with anyone close to us as a family, mine and Jacks siblings, aunts uncles, friends, work friends, all the people we'd want to keep updated with the news.
My phone buzzed continuously, loving and thoughtful messages pouring in from everyone we've ever known.
The rest of the family had the day off school, in the comfort of each others company. The familiarity of their home, hugging them all in our absence. My mum was there day and night, happy to cook, clean and console the kids when they were in need; keeping their spirits up. I kept in continuous contact and yet I was alone with my thoughts, worrying that my baby wasn't going to get through the next week or two and on top of that, Christmas was looming. We'd have to do our best to get Dexter home to be with his siblings, he was so excited for Christmas and although a numb glaze had been layered across everything else in our lives, we would have to make Christmas special, for him and all the children as this could of been his last, we had no idea how close to the drain we were circling but we were trying to remain positive, still hoping we had a future.
Our bags in hand they wheeled Dexter out of the children's unit. They took us through the back of A&E, it was like walking through the back of an engine, seeing all the cogs and bolts that run the hospital, doctors and nurses peered over Dexter and smiled at him gently as we passed, the odd nurse patting my shoulder. I felt the weight of the situation on my mind, my body was on auto pilot, I was gliding through the corridors; I was in the ambulance, with no physical explanation of how I happened to be there.
I stood at the back of the ambulance as they opened the doors, I watched as they elevated him into the back. I felt weak, my knees like jelly, all the air left my chest, I felt winded. I swallowed my shock as they led Jack and I around to the side door of the ambulance. I heave myself into the side seat, Jacks seat in front of mine, both staying alongside Dex, he wasn't in touching reach; the female paramedic sat at the head of his bed and a pang of panic rose in me; I wanted to sit next to him, I knew I couldn't but I had the urge rising in my throat to tell her that I should be the one next to him.
Dexters eyes were rolling, he looked faint and he showed little enthuasim as we tried to be cheerful about his ride in an ambulance. The Paramedic told him the blue lights were going on and he closed his vacant eyes. I leaned over as far as I could to stroke over his blankets, hoping he could feel me, but he didn't move. The Ambulance moved and immediately the swirling blue lights started to cast shadows around the inside of the vehicle and the noise resinated through my clenched jaw as I tried with every part of myself to stay composed.
Jack sat in front of me quietly. I watched his head turn towards Dex and every now and then he would chat with the painfully cheerful paramedic. My phone vibrated, loved ones chatting and offering support, I spoke of my disbelief and sent fast sharp messages of disbelief. Before breaking down, every time I typed the situation, I felt the swell of tears rise again, Jack affectionately held my knee as I rummaged in my bag for yet another tissue.
My thoughts were dark, bleak and I couldn't cage any of my fears. Instead I let them wash over me, I felt every stab of discomfort at the thought of my sons death, at how it would leave a gaping whole in our lives and again I thought I'd be unable to breath if we were to lose him. How would our family every recover, and more than anything I couldn't bare the thought of Dexter being in a place, where I couldn't reach him, comfort him. Even now the thought of him wondering an unknown world without being able to turn to us for comfort, hurts me and to this day the memory of that journey haunts me.
Neither Jack or I know Southampton very well, the roads they took, made Hampshire feel like foreign land, the hospital wasn't something I'd ever visited. and when we arrived to a concert ambulance loading bay, in the middle of a city we didn't know, It felt disorientating, as though no matter the direction we turned, we wouldn't know which one would lead us home.
The back of the hospital was under construction, Dexter was wheeled through a dystopian hospital, fragmented and broken until we were steered into a lift, that took us to the top floor of the hospital, as we came out the lift, civilisation was restored, the ward we were wheeled into was bright and colourful, nurses stepped aside and a sister directed them into the room straight ahead. Room two. Jack and I thanked the paramedics, who left us in the small room, the window over looked the city and we waited.
Dexter was awake, but he obviously wasn't himself. Cath the head sister sensitively introduced herself to us and told us the protocols of Piam Brown ward.
I made myself comfortable in the chair next to his bed, slowly stroking his hair calming him, but he thrashed in the bed, screaming and shouting to be left because he was tired. It was distressing, Jack, calmed him gently, stroking him, distracting him, we tried to comfort him, but this was terrifying for him, he felt unwell, he had a large mass protruding across his cheek and we were now in our new home for the next 15 days on the count down to Christmas.
It was around three in the afternoon when we arrived and got settled into the ward. Jack was incredibly strong where as I was coughing and spluttering; struggling to breath. Constantly crying, I was a large hormonal mess. Dexter was up and down. He'd play for half hour, watch telly and then sleep for two hours and as the day drew on we were grateful for him sleeping because their were an endless amount of doctors that had to speak to us and a lot of forms we had to give consent for.
Our consultant is a lovely woman, she's gentle but fair. I felt immediately she wanted to spare us of the pain of seeing Dexters scans, but I wanted to see them and I needed to see them. We had been lead into the the small white consultation room. Jack was eager to know everything, his mind was whirling, he had questions and he wanted them all answered at once.
I could barely sit in the chair, a coughing fit upon me I had to have a glass of water and calm myself. I apologised and we continued. She told us that we'd have to start Dexter on emergency chemotherapy, a blanket VAC protocol, that would span over and cover for a variety of cancers until they were sure what they were dealing with.
Now, looking back I think they always had a strong suspicion of what they were dealing with because we had been assigned Jessica, a sarcoma specialist at the top of her field. But at the time, like deer in headlights we agreed that treatment had to start immediately and jack pushed for the biopsy to be done tonight.
Jessica had said that it may be tomorrow morning but the ideal situation would be surgery this evening. He'd need a line put through his chest, to allow for bloods and treatment, it was ideal to do this all at once.
Then we went back to the room. We played lego with Dexter until another doctor came in and spoke to us about consent. He said, that there was a type of tumour, prevalent in boys that is similar looking to Dexters; that if you cut it, it bleeds and there is no way to stop that. They hoped that his cancer was not of this nature, but we had to be aware, that Dexter may die on the table that evening if it were, but he highlighted he would die if he were not to receive the biopsy, that allowed for the right treatment.
This was a unbelievable conversation for a parent to have, it left us gobsmacked, this was an unavoidable moment, where we had no choice but the path that was presented too us, one where we could be facing the prospect of losing one of our children toward the end of the evening, silent Jack signed
The team that came together that evening where a heroic team, they saved Dexter that week, we had no idea that they believed Dexter to be an Amber patient. Jack over heard them refer to him as an Amber patient, the NHS refer to this as...
' The Amber care bundle is used for patients who are unstable and be approaching the end of their life.'
We didn't realise this till Jessica lately told us that the assembled team were lifesavers, that without their quick response surgery they would have most likely been unable to save Dexter as he was shutting down.
Looking back I believe her. Dexter was small and frail and as night drew in and the ward got dark, they wheeled our little man down to theatre, we both walked with him, squeezing his hand and talking to him. Jack couldn't face going through the large white heavy doors, he didn't want to see him drift into sleep, for fear that he wouldn't wake again.
I went in with him, I didn't feel fear as I've been in a medical theatre so many times myself, I knew how it was going to play out. Dexter cried and moaned as they faffed about with him, removing his socks and making sure all the monitoring pads were stuck firmly in place, he hugged his pink blanket, as they slowly placed the passmark over his face, I could see the panic flicker in his eyes before he was gone, lulled into the heavy deep sleep. I kissed him so hard on his beautiful squidgy cheek and told him how much we loved him before I was ushered out of the room.
I found Jack, head in hands outside the theatre in the still corridor, we walked down to M&S in the hospital entrance, I don't remember what we spoke about, or if we spoke. Bottle of water, some unjoyous sandwich collection, chocolate, tea and coffee came back to the room with us. It was dark and empty, without his bed in it, we were left with the one reclining chair and a hard plastic chair like we all had back in our school days.
I don't remember the conversations, I don't remember eating much. I remember jack and I just chatted, very much like we did back in the days when we were dating, random talking, no need for anything or anyone else, just with one another. The night drew on and we felt small in the empty room, there was nothing. the hours ticked by nearing ten, still nothing. We just waited, believing he was going to be back.
At last the door opened and they wheeled him back in it was just gone ten in the evening. I let out a single breath that had harboured so much tension, I felt dizzy with relief. The doctor accompanied him, saying he'd done well, they told us the side effects of how he'd feel for the line, they pulled back the covers, my eyes welled up to see the incisions and lines across his chest and body. It was brutal, it was an image that will stay with me forever and it was the stark reality of the situation hitting us right between the eyes. The lines went under the muscles of his body off his chest, every time he moved or raised his right arm, he winced and moaned in pain and I winced because I wanted to save him from the pain and discomfort.
Jack and I hadn't slept for nearly 21 hours and the both of us were exhausted. I couldn't lay down without coughing and feeling like the phlegm was going to drown me in my sleep, so I opted for the reclining chair so I could partially sit up, Jack took the pull down bed, incased in a little cupboard by the bed. I lay listening to Dexter and Jack snore, I couldn't sleep, I couldn't lay without coughing, I couldn't rest, I was full of fear and I couldn't rationalise how we had ended up here, how this was a thing in our lives.
The first night was tough, the nurses were in and out monitoring Dex, he wasn't joyous about their presence, but still full of aesthetic he submitted and lulled back into sleep.
Morning brought nothing but coping, moving forward. My mum doesn't sleep well generally so she'd kept me company all through the night, texting me for hours. The day was no different, me and Jack trapped in a room, trying to encourage Dexter to eat and drink while responding to millions of people, everyone keeping us going, distracting us from the reality we were trapped in a box room with.
I didn't know if we'd have Dex for much longer, so every second I took a video, I took a picture, these videos and pictures are hard for people to see, but I was so grateful for him to still be with us and I wanted to preserve every second. A lover of porridge, he asked for it for breakfast, but nothing was right, nothing tasted like home and that was the only thing he really wanted; a five year old, just wanting to go home and be with his brothers and sisters.
Comments