The next day after surgery, Dexter slept away the morning hours. His line was in and tender but it was there for immediate use and the doctors came in with consent forms mid afternoon to gain our consent for emergency treatment. The doctor was blonde, with a long bob, she gently talked us through the longest list of side effects, organ damage, secondary cancers, infertility, sickness, weak tendons, the list was endless. I couldn't help but cry, silently throughout, wiping my tears as fast as they fell, gulping like a gold fish out of water as I tried to breath, through my blocked stuffy nose, crying was not helping me.
Jack and I both hated the idea of pumping Dexters little body full of poison but we knew we had to agree because despite the side effects, without the emergency VAC he wouldn't live long enough regardless.
I cried every time I thought about infertility. Out of all my boys Dexter is the most nurturing and softest towards babies, he often tells us how much he loves babies and was over the moon when we told him we would be having a new baby in the spring of 2020. The thought of my sweet boy struggling to have a family of his own in the future was too much to bare, it felt like a burden he didn't deserve.
But I wanted him to have a life first and foremost and he has a lot of life to live before thinking about bringing new lives into this world.
It seemed everyday brought a new form to sign, that consented doctors to do dangerous things to Dexter. The day before we consented to the knowledge that he could die on the operating table and today we were consenting to treatment that could effect this kidneys, his heart and render him infertile, but we just had to hope we could kill the aggressive mass that was now putting severe pressure on his optic nerve of his right eye, it was starting to show, it was turning in towards his nose.
We had to take Dexter down to the optical specialists on the bottom floor of the hospital. He was weary and fought against every instinct to be well behaved. No matter what character the specialist showed him, he clenched his eyes shut and in the end, she determined he had difficulty with the movement of his right eye, he couldn't look to the right and it was very restricted.
Those appointments were so frustrating, you knew he was capable of doing what was being asked of him, but our little boy had suddenly been asked a lot of him over the last few days, prodded and poked and put under general anaesthetic, last thing he wanted was to look at things, be tested and asked to comment.
He sobbed and cried and in the end Jack had to carry him back upstairs, we followed Cath the sister on Piam Brown ward, she explained it was understandable, but still I just wished he'd do what they ask so they could help him.
The awkwardness continued for anyone in uniform, no matter which doctor or nurse entered the room, if he didn't kick off, he'd blank them, continue playing on his iPad and pretend they weren't speaking to him.
On our return, drained and frustrated that he had to do that eye test just after an operation, being pumped full of drugs and still groggy, we returned to our room. Only to be told it was time for chemo to start, Dexter resisted when they dug around under the covers looking for his line, which soon was referred to as wiggly; he was given Ollie the lion who also had wigglies and a book to explain what they were for and how they helped children that needed them. None of this washed on Dexter, it dawned on me at this point, that although he had childish elements to his young self, he was an old soul and set in his ways for a five year old.
He was most unreasonable with the nurses at night, I mean often I felt irritated that they had woke him, but in those early days, he would tightly wrap himself in his blanket and rapidly turn his body, then he would scream out because he'd hurt his body where his line ran freshly under his bruised muscles.
Hooking him up to the a bag of liquid, vital for his kidneys, three hours before the chemo, then the chemo mix and then another three hours of fluids to flush everything through after, we were on our way.
I sat talking to him and I said to him, That thing in your head, that blob? Shall we call him Bob, he laughed and I said, Yes lets beat 'Bob the blob' and get him out of your head. Thats just what he did there and then he started to fight off 'Bob the blob.'
It was a new way of life, he was hooked to a drip, in the early days he was insistent on getting up and going to the bathroom. Everything had to be collected, so we would carefully follow behind with the drip stand and hold a cardboard urinal under him, gloves on, don't touch the urine, chemo can effect a pregnant lady, it was a lot and then you had to transport every deposit down to the dirty utility for the poor training nurses to weigh and measure. It wasn't an inspiring time and the chemo instantly knocked him out, Jack and I just sat watching him, occasionally chatting, our phones racking up messages, that needed to be answered. So imagine our surprise when after a good five hour sleep, he woke and looked through a little christmas book I'd brought in. Suddenly he started telling us how excited he was for the nativity and he knew all the song to the sheep shimmy. Jack and I knew nothing about it and we asked if he would sing it, to our shock he carefully lowered himself out of the bed and told us to watch.
My heart swelled with sadness as I watched him do the little dance and song. I was so sad that he wouldn't get to go to the nativity but I didn't have the heart to tell him, it was ten days till the end of school and we had no idea when we'd be out of hospital let alone thinking about returning to school, if ever.
I never understood the mundaneness of chemo until that weekend, the anti sickness drugs that accompanied the chemo, made Dexter extremely moody and unreasonable. The endless gifts and friends that visited where the only source of cheer that he could recognise as a normal emotion. People were so incredibly kind and so thoughtful towards us.
In those first few day we didn't have many visitors, Jack and I were emotionally drained; I was emotionally and physically drained, crying at the drop of a hat and still struggling to breath day and night. Matt and Chris, two of our eldest friends that went to school with Jack came to visit Dexter, my Dad came to visit every other day armed with lego, colouring books and anything else to fill his hospital stay. Chris alway a joker was able to get a smile back from Dexters face, he gave them ten minutes of action and happiness before the drugs and cancer took their toll and he would slowly fold into the bed and drift into a deep, sleep, his eyes flickering and his body twitching.
Everyones generosity shone through, Grandparents, Aunts, close friends, work friends, school mum friends and friends of friends, everyone spoilt Dex, it was like Christmas everyday for him, as gifts were mailed direct to the hospital and all while he thought this was brilliant, we thought we just needed to fill every day with joy because we didn't know how many days we had left.
In those hour visits, everything seemed normal as we sipped tea and watched him open numerous advent calendars, pulling out little lego figures, excitedly. We joked and laughed and, the window would let the cool air wash over us as we all chatted around Dexters bed. Being with loved ones reduced the feelings of loneliness, we just spent days and nights, waiting and waiting to hear anything about the type of cancer we were dealing with and what the treatment plan would be. As night drew in and the ward lights dimmed to a low blue, everything felt so far from normal. The passing nurses and the bleeping machines, filled my ears. I could hear the echos of crying children up and down the ward, and only one of us could stay. The nights I stayed I didn't sleep well, I was alone with my thoughts and spent hours texting my mum into the night, and when I was at home I couldn't sleep knowing Dex was on the ward and spent hours texting Jack.
We were told it would take 5 days but 8 days in, we were still waiting on tests. Jessica told us there were three stages, to determined the exact type. Every day we grew more and more frustrated as we inched slowly towards Christmas, every day we'd ask a different doctor if we'd be able to take him home for Christmas and every day they would say, we'll see how it goes, we hope so.
Jack and I took it in turns to go home, three days at a time. It worked because we were trying to keep a level of normality for our other children and so we would alleviate mum from looking after Trixie in the days and spend time with one of us in the evenings. Then we would return to the ward after they had gone back to school the next day for a few hours, to check in and visit. Weekends, felt endlessly long and quiet, not many people were about and the children eventually came up to visit.
That was the hardest thing, for a child from a big family to suddenly find themselves in a hospital isolated from them, it was unsettling and he would cry on face time at whichever parent had just left him, seeing everyone at home, emphasised how much he missed home.
The children all did there best to be upbeat and happy around Dexter, helping him complete levels on the lego games and Spiderman games. For half hour, Dexter would be the little boy he always was, boisterous and playful with his brothers. This would upset Lily a little bit, feeling like he had no time for her as he was always so much more enthusiastic to see the boys.
Lily was very emotionally aware of how serious the situation is, knowing she could lose Dexter, made her all the more sensitive, but of course being five Dexter had no idea Lily would feel so distressed by him shunning her offers to play.
It wasn't long before the day we'd been waiting for arrived and dexters consultant called us into her room. the small white room was hot and I looked at the animal stickers on the wall, sure that they were no more comforting to the children as they were to me.
I scrambled for tissues before taking a seat on the hard plastic chair in front of her desk. Jack sat next to me, his stare focused and ready for whatever the news was. It made me think of when parents are called in to the head masters office to hear unappealing news about their children, Jessica, clasped her hands and my eyes were drawn to her wedding rings. I wanted to ask her when she got married, if she had any children, how she chose a pathway in chemotherapy and sarcomas as her choice of career. Its funny how this lovely lady sat in front of me had all the information about Dexter, one of my most precious people, and yet I knew nothing about her and her life and I didn't know how we'd got to this point, sitting on the opposite side of her desk in a children's cancer ward.
She softly broached that they assess the cancer on the size, location, the age of the patient and the type of cancer it is to categorise how high risk the cancer is.
She had determined that Dexter is high risk. Due to unfavourable aspects as they call them.
The type of tumour was unfavourable. Embryonal was the better of two evils because Alveolar Rhabdomyosarcomas where more likely to spread to other parts of the body.
The size of the tumour was unfavourable, being above 5cm. The location of the tumour was unfavourable as it was in so many crevices and knocks and crannies. the only favourable aspects was that it was localised to the one part of his body and his age gave him a fighting chance. She told us it was a very tricky tumour, it couldn't be treated with chemotherapy alone and unfortunately it due to the tumour spreading through paremenigeal facial cavities it wasn't and isn't operable. That left us with the Proton therapy. That was Dexters best chance.
I cried the entire time Jessica spoke to us, she told us it was a very serious situation, that there was a 50/50 chance that it could be cured and that there was a 20-40% return rate with this kind of cancer with in five years, meaning if it returned our options of getting a grip on this cancer were slim.
Being pregnant and hearing all of this about my fragile little five year old, that lay sleeping down the ward, made me feel desperate. I wanted to scream that it wasn't fair and smash everything in my anger. Instead I internalised my raging emotions and tried to breath, tried to stem the crying and tried to get a grip of the disbelief that this was happening. I was in utter shock.
Jessica apologised for giving us such bad news, she said she truly believed we had caught it at the first possible moment, that If I had ignored my instincts to take Dexter to A&E when I had and waited for our Thursday appointment, it would have been a different outcome, it had already started to break through his brain plate by the Tuesday, it certainly would have been in his brain by the Thursday and we would have been looking at losing our sweet boy. Hearing this, my jaw tensed, anger flared in me at all the doctors back in poole that had assumed and accused him of shoving something up his nose, their ignorance and lack of care could have lead to Dexters death, I felt relief that I had ignored them and kept pushing. The Southampton team that put his line in that Thursday evening had saved his life without a shadow of a doubt, getting the chemo into him was the fastest way to save him.
Jack and I went back to dexters bed side, It was my turn to return home and this was the one occasion I had driven the car my self and not been ferried to the hospital by a loved one. Jack was concerned about me driving but I knew I would be fine for the forty minute drive home, I just had to think of something else. I stayed another hour with Jack, we chatted and talked about all the lovely things we'd done with Dex and the kids over the years and then I kissed both my boys goodbye and headed home for the evening, Dexter told me he couldn't wait to hold the baby, I didn't have the heart to tell him he had 11 weeks to wait, I just encouraged him to snuggle down under his cosy fleece blanket. I was bringing his duvet back with me in the morning. He said hospital beds weren't as nice as his at home, I know we all felt that way.
On the way home I rang Ross, he's a good person with a kind heart and he talked to me the entire journey back, I laughed my head off because he's one of those people who light you up even when you've been dealt the worst news. He was optimistic and full of positivity despite the grim news I was sharing .
That evening I'd returned home to the three trees in the house, my mother-in-law knew that it would bring cheer too us as I was still yet to do it, but Christmas had not been cancelled, the show would go on and we'd get through it all for the kids.
The mood was cheery and soft, I sat and had bangers and mash that Mum had cooked for before I talked my parents through the diagnosis, my dad read through the treatment plan, he was very quiet, emotional and yet still positive that Dexter had to be fine because, there was no other option. I then crossed the court yard between our houses to speak to jacks parents, every time I discussed or spoke of the future and days ahead I found it incredibly hard to keep myself together, I'm not sure I'd have been any different , regardless of being heavily pregnant.
Mum stayed with me as I was going back to the hospital in the morning, armed with Christmas jumpers, duvets and goodies to cheer Dexter along and make him and Jack more comfortable. At night, I felt the emptiness of the quiet house, our bedroom and open plan apartment style loft conversion, felt vast with out Jacks presence and I lay looking out the large patio door as the night drew in, texting Jack until he would tell me he was turning in for the night, and I would just lie awake, playing every eventuality my brain could concoct, every outcome that could await and my only grounding was all I wanted, today, in that moment was to focus on getting him home for Christmas.
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