As the chemo took effect, chunks of the tumour fell out of Dexter's nose. He had been wearing nose bandages since the biopsy and the chemo meant his nose was permanently running, it was unpleasant and a new thing we'd have to get used too.
Dexter would ask now and again when we were going home and each day, we would say soon. Hopefully soon.
It was so upsetting, him sat in his little Christmas jumper watching home alone on his iPad in front of a small foil christmas tree friends had sent him. He was excited for Santa and despite how low he was feeling he was excited for Santa's visits.
The mood at home was low, the kids were doing their best at school, but no matter the amount of Christmas spirit everyone was trying to feel nothing made the situation feel lighter.
I was ill and tired and every chat with had with the doctors filled us with dread. We didn't know if this tiny room we had sat in for the past week was going to be our new home for months to come. Jack was tired and pale looking, neither of us slept, I had barely eaten and I'd now been issued inhalers and steroids to try shift the virus I had.
Night time was unbearable, I would scroll through instagram for hours, looking for anyone with a happy out come or a similar case I would have taken, but there was no one, no living cases I could find. I felt such darkness that I could barely be optimistic and I would cry every time I had to talk about the future.
Every evening my Dad would visit, no matter where he was working in the country, he would drive to the hospital to see Dexter, if even for twenty minutes before visiting hours ended. I knew he wanted him to know he was always there and that Dexter was never far from his thoughts.
My dad has been incredible with Dexter, jollying him along and getting him out of grumps throughout his treatment, buying him treats and large boxes of lego, and visiting him, no matter where he was being treated in the country, he's been amazing to him and all my children, to be honest I will be forever grateful for mine and Jacks parents support, their styles are very different but equally as important to us getting through this horrendous time in our lives.
My family cocooned the children in a loving ring of normality, all the daily duties of school, lunch, pick ups, drop offs and listening to the children day and night were covered by my parents when Jack and I couldn't be around, they were incredibly supportive of listening to both Jack and I talk about our fears and talking through our endless hospital hamster wheel.
Jacks parents, helped no end in making it easy for Jack to step away from him role at work, they helped insure we were financially supported in such an incredibly distressing time when we found it hard to make a simple decision let alone a hard one and they checked in with the kids and us to make sure we felt supported.
The days were merging into one, the anti sickness drugs, the toilet stops, walking him back and forth attached to the drip stand, making endless meals in hope he'll eat something. Living off snacks from the M&S shop and fuelled on Costa coffee. Jack and I would take it in turns to sleep at home. Jack was doing extra research, trawling through case studies and doctors around the world looking for something to help, looking for a glimmer of hope that the inoperable location of his rhabdomyosarcoma, could be tackled by some brave surgeon with forward thinking technology, but there was no one, no one willing for fear of causing devastating side effects to poor Dexters face. Proton Radiation Therapy was the only option and we didn't know if we'd get a place.
Jack and I played opposite roles, he was the optimist filled with hope and I was the realist, living with a black cloud over me. I grew ever frustrated with Jack, he was excited to talk to our consultant about alternative options, new surgical techniques and I knew they were for adults, not trialed on children, but still he had to explore it all to know that we were at a dead end, we at least had one option and we had to take that if it was offered.
Not only our family but also our friends were also incredible, we were wrapped in care and love by those closest too us, they could see the utter shock and pain of the situation. My closest friends came to the hospital most evenings, bringing small gifts to cheer Dexter up and get him through the days ahead. It was like everyday was Christmas, the children in his class sent toys and cards and complete strangers sent him gifts, anyone who heard about Dexter was incredibly supportive of him and the journey ahead. Dexter could feel the love from everyone and that in turn made Jack and I feel loved by everyone, when we were in a state of anxiety, fear and grief.
Trixie's birthday was just round the corner, two of my close friends organised a frozen birthday party for her. I was at the hospital the day before her birthday and my house was filled with friends, putting together a large igloo and setting the scene for a visit from Elsa.
My dad picked me up, my eyes and face ached from crying, I was going home to celebrate a birthday party I had no joy for but I felt that we had to continue, we had to carry on for Trixie and the other children. My chest was tight, I could barely breath and the heat of the car set off long coughing fits. I was running on nothing and I felt truly exhausted.
When I got home, I was shocked by the lengths my friends had gone too, they had organised a friend to play Elsa, dressed the whole house and Trixie was excitedly running around, hocked up on sweets, off her little head with pure exhilaration, I sat on the outskirts of the chaos, I was in a daze, it was the first time I'd seen all of my close group of friends together, I was struggling to be present and after the set up was ready, we just sat all chatting, until I was crying again. Everyone was so compassionate and I tried not to make it awkward, but I was so shocked and low I was struggling to hold my emotions together.
Then they all wanted to know about the new baby I had kept secret for twenty three weeks, now they looked at me they could tell, it was as if the minute I'd announced the pregnancy my bump just popped out for the world to see.
Soon the guests arrived, the food was out, everyone was milling, and Trixie was having the time of her life with Elsa.
And I feel terrible for saying this, but I wasn't really there, I was locked in the tiny purple room, next to Dexters bed, looking at Dexter lying unconscious, thinking will my son live, will it be ok or will I be planning a funeral for one of my children in the new year?
Two days later we get the surprise of our life, the doctors have decided that Dexter had responded so well to treatment that we could take him home, the relief! Its the 17th and we're going home! I have never felt joy like this, all I wanted to do was pack up his stuff and never return, but we knew we'd be back, on the 27th December we had to be back to for his second round of chemotherapy, but for now we were getting him home fore christmas, at last I felt something other than sadness.
I had booked tickets before all this to go to Longleat's Festival of Lights, Jack was with Dexter and was bringing him home later that evening, it was agreed I would still take the other children to the show and we would meet them back home, the festival was beautiful but I just couldn't wait to go home and for us all to be with Dexter.
The relief of having Dex home in his own bed was the best feeling in the world for him and us. It was an unbelievable feeling, and to be together again for Christmas was all we cared about. Our little boy was happy, home eating boiled eggs and enjoying being in his own room, he was exhausted and the tucking him into bed, under a plush duvet was a joy.
The manual had been read, the rules of having a child with cancer is endless, you have to take their temperature twice daily and and they have to have their bloods taken every few days. The new Star Wars film was open two nights after Dex was home, he'd been lifeless on the sofa for the whole day, I could feel something was wrong, he has quiet and less active than he'd been at home. Jack and the boys were due to go to the midnight showing of the Star Wars movie, I urged him to go, he needed a break and I was sure Dex was going to be fine.
I was wrong. Jack was out and I was restless, I kept going into Dexters room, repeatedly taking his temperature, it was on the rise and by the time Jack walked through the door at three am I was waiting, with Dexter asleep in my arms, his temperature was raging. I'd rang the hospital ahead to make sure they knew I was coming.
When I got through the door his temp was 38.9 anything over 38 you have to be admitted within the hour, I had fulfilled the brief, I had done my duty as a parent and I was then informed he'd have to stay in for 48 hours minimum on more antibiotics, I was gutted, he'd been home two days and already we were back in hospital, was it something I had or hadn't done, where had he picked up an infection?
I texted Jack told him we'd be staying in the stark hospital room, we'd be placed on the ward in the morning, so until then I would stay with Dex, who wouldn't allow any of the nurses to touch him, every set of obstacles was a trauma, he was tired and they kept waking him, it was going to be long night, and we just needed to know if he was fighting something off and then we could work out how long we were going to be here.
For now I hugged my bump as I lifted my knees to my chest and curled up on the chair next to his bed, surrounded by bleeping, unfamiliar cries and footsteps, in the dark, in another small room, waiting for morning to come.
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