Back to Dexters battle...

The days before Christmas were long and unknowing, we had all the information on the type of cancer Dexter was facing, we had the treatment plan, and we had the endless statistics that didn't read incredibly well and filled our nights with panic and fear, none of it brought comfort.

The sixteenth of December was Trixies 3rd birthday; I had booked for the whole family to go to the Longleat festival of light so on the 15th December we had the whole family over, Melody and Nix, two close friends had organised and dressed the house. I had been at the hospital and was heading home for the afternoon and evening. It was decided that Jack would stay with Dexter, and the rest of us would try and celebrate Trixies birthday as planned.

I came home to a frozen themed party, my chest was tight, and I was coughing continuously- the minute I stepped through the door I had to get back outside, as the air mithered my breathing. I felt horrendous but seeing the igloo the girls had set up and the effort our friends had gone to was so touching. I sat with my friends, discussing Dexter's case, 12 days in and it still felt like a dream, we also had time to discuss the secret pregnancy I'd kept secret from everyone for five and half months.

Jack and I had chosen to keep it to ourselves, to keep the judgement, to enjoy the time and we were due to announce it at Christmas, not realising none of that would happen, and by that time Dexter would be seriously ill and fighting for his life.

The party was really tough, I was ill, emotional and surrounded by family, some of which we were having difficulties with. It was uneasy, and the whole thing was a blur of frozen and excitable children.

The next morning I checked in with Dexter, he was preparing to come home. Just checking on the drugs and going through the protocol. We were opening presents and getting excited about Dexter coming home, off to The Festival of lights we went.

It was a lovely day with close friends, and my parents and the children enjoyed it, but Dexter's absence was a huge hole in the family, haemorrhaging emotions and grief all over the festivities. I felt truly incapable of enjoying the day internally, walking like a zombie through the dimly lit attractions. I was there, but I felt absent.

Jack had updated me on their return and made it home before we did, trying to encourage him to eat; he had boiled eggs for his first meal at home. I drove home wishing I could speed to the comfort of home, wishing with everything to reunite us for Christmas, to hug and hold Dexter outside the confines of Piam Brown ward, lovely but not home.

We had moved Dexter out of the room he shared with his brothers, worried that accidents and vomiting would be something we should shield his brothers from, the spare room has its own bathroom. We felt it was good to store all the medicine and things that would now be part of our daily life, new bedding and the plump duvet was the highlight for Dexter.

He often says that the NHS spend all their money on medicine because the bed blankets are horrid. That first night snuggling him back in his bed, back home with us, it felt magical.

We had that swelling of success for a mere 48 hours; daily we would check his temperature, monitor how tired and drained he was and constantly offered drinks and food. On the 19th Dex was lulling, his mood withdrawn and he started to sleep much longer than he was awake. I was worried, but Jack had checked his temperature, and it seemed to be below 38, and that was what we'd been told was a warning sign for infection.

As the day went on, his temperature was slowly elevating; it was bouncing about. Jack was due to go to the Starwars midnight showing, he was hesitant to go, but his temp had been doing this for nearly twenty-four hours, so I encouraged him to have a nice time away from the traumatic life we were living. I snuggled him in bed; he was getting hotter, much to his dislike; I told him we had to take his duvet off and maybe curl up with his blanket.

Hourly I would check in on Dexter, he was in a feverish sleep. Jack had left and I lay awake on my bed, reading and looking for living cases across the world, feeling desperate to find good outcomes to what had been inflicted on my lovely little man.

By 3 am I was taking Dexter's temperature again, he was burning up and I was sure we needed to head into the hospital. He lulled and complained as I put his tiny limbs inside his tiger onesie, lugging him over my bump, I rested dex awkwardly over my body as I tried to ring Jack, surely he was home by now, I caught my dad on his mobile just walking through the door. I was dressed and ready to go at the front door when he walked in. I'd roused the teenagers to know they were in charge for five minutes while Jack took us down to the hospital and off we went.

Dex was tired and agitated on the ward, making the nurse's jobs difficult, and this was a 48-hour stay to clear up the infection his body was fighting. This lead to the morning his hair fell out, that I shared with you in my previous posts and it also led us to meet our Poole based consultant. She spoke to us about the serious nature of the situation, but they didn't want to deliver realistic harsh news before Christmas but they knew we were in a tough spot. Nobody knew how Dexter's cancer would respond to Chemotherapy or what the future held for him.

Christmas day was a blur. It was an emotional day. Dexter had been so excited and opened his presents with the enthusiasm of a well and bouncing child. He was now slender and bald but he, like myself, is the biggest fan of Christmas and couldn't wait for the day to start. We had watched endless Christmas movies in hospital, home alone being both of our favourites.

The family rallied around us, Mike my brother in law helped cook the dinner. My parents and my sister all came over for lunch. Jacks family came over and did presents in the morning. We were all emotionally frazzled but we put on the best performance of 'the show must go on' for the children.

Christmas was ok but with boxing day over, the 27th December was back to the hospital for another round of chemotherapy.

It's not easy to see his little body struggle, for him to sleep till he drops into asleep only to wake when he's lost control of his bladder and crying through crankiness because they've pumped him full of anti-sickness drugs.

Suddenly our idyllic life was blighted with this, a hellish front row seat, watching someone I love more than life struggling to fight a silent monster, buried deep within the walls of his own face. It is pain like I have never endured.

Jack and I were not alone though, my mum was at home insuring our wishes for life to continue best it could for the other kids, moved in and made a home run, probably even better than I run it. My Dad was a vigilant visitor of Dexters, they have funny respect between them. No matter how grumpy Dexter is, my Dad's tolerance will withstand, no matter the outcome, Dexter knows Grandad is always thinking of him and he's been a constant support to him.

We made it home for new years, but no one felt like celebrating it, it was bittersweet, emotional and meaningless.

I was just starting to feel better, strength coming back to me and now we had to talk about applying for Proton Radiation.

Sat in a small white room being told that chemotherapy alone will not kill this tumour was hard to hear, it was frightening enough to hear the side effects that come with it, let alone the side effects that come with radiation.

I wanted to scream 'No your not doing that to my little boy', but good manners and sanity held me from doing so. It was frightfully serious, with every side effect she listed, hot silent tears stung my cheeks, and I had to bury my face in my sleeves to hide my ugly crying. Jack was so together, I kept thinking, maybe its because I was pregnant. But now looking back, I don't think so, I think hearing your five year old has to deal with 30 days of general anaesthetics, cracking skin, burns internally, unable to eat, drink without discomfort, his bones won't grow, his teeth won't form properly, he might go blind and deaf. It was too much to bear.

I wasn't sold on it and still, I knew I had no options, this was the only life-saving treatment available. The whole thing didn't sit well with me, he would be separated from us in Manchester or Germany, currently, The Christie is the only Proton beam radiation that treats NHS patients in the UK, and they ship many that cant be treated in the unit out to Germany and America.

We travelled up to UCLH hospital to see the Proton radiation specialist, she was explaining the southern unit that's due to be built in London had come to a holt, we are still waiting as we speak. A London basement, where my child's face was to be nuked, didn't inspire me.

Due to being heavily pregnant and due in March, it was put to the panel that Manchester would be the ideal location of treatment, it really was, it meant we could plan for relatives and friends to visit and if worst came to worst, I'd have a baby in Manchester, luckily the panel agreed, the unit had only just started treating children it was so new and April was the earliest they thought they could fit us in, timings wise that could work because then we would all be home for babies arrival and then, the baby would come to manchester with me and Dex.

As it happens they had a spot a bit earlier, 4th of March would be his first start date. There was no time to waste and on the 17th of February, Jack, myself and Dex travelled with Steve, a wonderful man who runs a comfortable Tesla Taxi service, drove us the 6-hour journey to Manchester, back to back with the last round of chemo. The journey was not fun.

Poor vomiting, unwell, exhausted Dexter, a Tesco stop for some new trousers, it was all horrid and yet Steve was forever a gentleman. He was caring and so lovely about Dex and was so compassionate towards him.

We had barely settled into the Stay city apartment the NHS had booked us in for three nights before my eldest son sent me a text with no explanation saying, ' I think they are taking me to hospital mum.' Confused I called Ethan, my fifteen-year-old son was sobbing down the phone at me, I immediately asked him whether he'd been messing around and he assured me he hadn't been, but somehow he'd fallen through a doorway and dislocated his knee.

I wasn't convinced, I called my Dad, he was heading over to the school, to meet Ethan and follow the ambulance. My dad was ill, feeling worse by the minute he sat in A&E for five hours, hungry, full of cold and feverish as the doctors dithered about getting a strapped on support, to Ethans Knee, now back in place where it belonged. It is only now six months later, Ethan admitted he was walking like a penguin when he fell through a doorway and dislocated it. I believe that does constitute as doing something silly to bring that on but at the time I was shocked, for the first time in 15 years of life, Ethan had his first trip to A&E and I was stuck in Manchester with my other child who was going through cancer treatment, what had happened to our lives?

With Ethan strapped up and on crutches, we returned our attention to Dexter. He had to have tests to measure his abilities before treatment, we had to have a long uncomfortable chat with DR Ed Smith about why he was fighting for Proton Therapy, he couldn't understand why any of the side effects wouldn't be worth living, but as parents sitting in a room talking about it all yet again was a horrid experience and at the end of the day the man wanted his consent forms signed.

Then it was home and the love and support poured in while we waited for the next round of treatment to come. Love from all over the world. The cards and gifts and lovely messages that were sent filled Dexter with excitement.

The Japanese Lush Director works with my husband and when she heard the news about dexter she began making paper cranes - Senbaz Uru is a Japanese tradition of making 1000 origami cranes, and they bring hope, that you will be granted a gift by the gods, some believe they aid in long life and recovery. As she sat making paper cranes in her break, other office staff asked what she was doing and when they heard the news, they joined in. Then, a message from the Japanese Lush factory came through that they also wanted to make paper cranes to send over, and soon followed the Lush shops in Japan asking if the could send paper cranes to the office. In the end, nearly all the staff members of Lush in Japan had made Dexter 5000 origami cranes which we received in a huge box, and they hang in our hallway. There they will stay until our wish is granted and Dexter gets through this and lives a long, happy and healthy life.