Sunday 18th January

Wow, who would have thought? Thirty years ago today our son was born into this world at the RD&E in Exeter. He was five weeks premature, had a cleft palate, under developed lower jaw, breathing problems, tongue tie, wouldn’t feed; resulting in four days in intensive care in an incubator. As I had had pre-eclampsia, I wasn’t allowed to see him straightaway, but the nurses did bring a photograph of him to me. Eventually I was taken in a wheelchair to see our son. I couldn’t touch or hold him as he was hooked up to tubes and monitors. We both stayed in the SCBU for almost a month, until he was strong enough to take home. A diagnosis of Pierre Robin Syndrome was given then, and a number of years later Asperger Syndrome, Dyspraxia and learning difficulties.

And here we are, thirty years later. On the chemotherapy ward.

We had always promised to take him for afternoon tea at the Ritz in London, to be “posh and sophisticated” as he put it, eating cucumber sandwiches and delicate little cakes. He had been looking forward to this for a long time. Alas it was not meant to be at this moment in time.

What we did have though, was all the family packed into his hospital room for a birthday party of sorts! Mum and dad, brother and girlfriend, auntie, uncle and cousin, and grandmother. Even a Skype call from uncle in Chicago. There were many cards, presents, and of course a big chocolate birthday cake, of which he managed a fairly generous slice! He even had a card and gifts from the nurses, cleaner and kitchen staff; a really lovely gesture.

By the end of the afternoon he was quite tired and weak. I think he had been thinking about this birthday for a long time, and the fact that he couldn’t celebrate it properly. He wanted it to be super special, a real landmark event. Thirty. Years. Old.

But we have promised that when all the treatment is over, we will have a thirtieth birthday party at the Ritz Hotel, and it will be every bit as special as he wants it to be.

Tuesday 13th January

Today our son begins a six day stint of chemotherapy. He and my husband leave the house at four in the afternoon to get settled in. It really is a gruelling regime. I am at work in the week, so will swap over the staying in hospital on Friday ~ we’ll do three days each, although I do drive after school to visit with them. It’s tiring for me, but I do want to see how they’re getting on each day.

The day before my son was due to return to the hospital, he became extremely anxious and stressful. This soon turned to anger and aggression, and he ended up hitting me and pulling my hair. He wouldn’t take his night time medication, and spat everything out. I know he doesn’t mean to hurt me, his head must be in turmoil, and it really isn’t his fault. It’s just his way of coping with everything that is going on with his life. He is so scared and frightened for the forthcoming hospital stay.

For my son, each day usually begins with two six hour bags of saline, followed by a specific tailored concoction of chemotherapy, steroids and anti sickness medication. It is no wonder he is completely wiped out, and spends much of the day in bed sleeping through all this.

A CT scan is ordered for Thursday, with an MRI fitted in, when there is a space in appointments. Do let’s hope that the chemotherapy is doing it’s job and shrinking the tumours.

Wednesday 8th January

What a horrid experience for son’s day unit appointment this time round!

I was working, so husband and son got to the hospital at 9:30am, thinking it would be a couple of hours of chemotherapy.

But son had a temperature, high blood pressure, too high pulse, bloods were low, and he was extremely dehydrated. He needed loads of fluids before they gave him any chemotherapy: four hours of hydrating saline first. They eventually got home at 6:30pm after a long and tiresome day.

Son also has been prescribed sleeping pills to get him through the night; he has been quite tired and sicky over the last few days.

He really, really wants to eat, but then can’t as the taste or texture makes him retch. He is getting quite upset and scared.

Sometimes he gets cross, sometimes he just wants to hide away.

It’s dreadful to see him struggle.

Thursday 1st January 2015

Happy New Year to one and all.

We go back to the chemotherapy ward, but it’s only for my son to have a quick injection in his tummy to boost his immune system. It’s quick and painless for him, and soon we’re on our way home.

Let’s hope this year brings a turnaround to our fortunes as far as our health is concerned. I think both myself and my son have had quite enough, thank you!

Wednesday 31st December

A New Year’s Eve visit to a new area of the hospital so that my son can have a quick infusion of chemotherapy. The day case unit is busy, we are seen on time, my son picks a reclining chair by the window, and is soon hooked up to the toxic liquid that is hopefully shrinking the tumours in his body.

Everyone here seems friendly and kind; nothing is too much trouble. We are visited by a doctor and a dietician to check on progress and general health. It seems my son has lost over a stone in weight in a little over four weeks. He is prescribed some high calorie shakes with extra vitamins and minerals to give him a boost!

Four hours after arriving, we are ready to leave. Lunchtime beckons and son says he is really hungry. However he can only manage half a chicken nugget, three baked beans and one and a half chips, plus a few sips from a 7Up. A rubbish choice for lunch, but it’s what he fancied; when it arrived though, he just couldn’t face it. He says the taste in his mouth is horrible and metallic, and he has lots of little ulcers. Poor, poor chap.