Day 47/48

And that was that. All over. The bell has been rung.
28 sessions of proton completed by my brave boy.
He is so pleased with himself and so he should be. He has done well, so very well.
I feel strange.
Of course I am thrilled, but I feel sad, quite low.
Not quite the high I was expecting.
I think the adrenalin may have just crashed. Or maybe I am scared?
What comes next?
Ben asked me why I didn't cry.
Daddy cried, Nanny cried.
But I am getting good now. Good at crying, inwardly, so no one knows.
I know there is nothing wrong in crying, but if I was to cry, when I wanted to, when I needed to, well that would be often. Much too often.
The end of treatment bells was a different experience.
I was totally thrilled, of course. But I wish it was the ACTUAL end of treatment. Does that make sense? It was a symbolic gesture, that showed how amazingly he had done over the course of his 28 treatments and a sign that we are very very near to the end.
But there is a little way to go yet. Just a short journey now.
I don't want to dampen the mood. We are thrilled, but I am a realist, unfortunately.
How well do you know your kids?
I thought I knew mine.
I thought I could read Ben's every emotion.
I knew at the beginning of proton he was acutely frightened and I knew that with his chemo he was dreadfully fed up and felt unwell. I knew when he felt great and when he played on the beach, I saw that. I knew when he felt sad, when he just sat alone looking out to space. Thinking.
But most of the time, at proton, I thought he was ok. I thought that he was just getting on with the side effects and it wasn't bothering him too much. Of course the pain has been a nightmare but I thought that once controlled, he again was doing great.
Then he rang the bell. He finished treatment. He was a different boy. Almost instantly. His eyes brightened. His smile beamed. He was playful and funny. Interested and mischievous.
I thought it was just the adrenaline and the fact that he was pleased with himself.
It wasn't.
The sheer stress and anxiety that he had felt has gone. Disappeared.
He is no longer worrying that his swallowing is worsening.
He is no longer worrying that the pain is going to increase.
He is no longer stressing that he might have to go into hospital if his breathing worsens.
He is no longer governed and ruled by the proton. By the appointments, by the mask, by the choking sensation that he experiences when his saliva can't be swallowed and he is strapped down to a table and by the fear of vomiting when he is tied down. Alone in a room. The noise unbearable and the beam running through him. He is no longer afraid. Not of the proton anyway.
What a difference.
He is running around with a nerf gun, trying to shoot his Grandad. He is laughing and joking, drinking orange Fanta like it is going out of fashion. He is a normal boy. Almost.
His eyes are so blue. He has gained weight, haven't we all!
His grey colour is turning to that of a healthy child. He looks good. He has fuzz on his head where his lovely blonde hair is coming through. He is amazing!
The weight of the world has been lifted off this little boys shoulders.
It is not all normal, not really.
He is still fed through a gastrostomy tube, he still uses a suction machine and has a morphine patch on his back. He still can't sleep alone. He can't swallow solids. Not really, but he tries.
His neck, although looking great is burnt. Red and irritated. But better than we had ever expected. Ever.
He is tired. Very tired. He is moody and down.
Not always, just sometimes.
He can't swim with his Hickman line and in sunny Florida, that is a struggle.
But this is all ok. This we can cope with. This is not for long.
I am actually liking the control that I have with his feeds. It is easier than the constant battle to get him to eat, but there is also something very satisfying.
I know exactly what his intake is. It is better than any three meals a day. And you can tell.
My Jacobs cream cracker friend will know what I mean. She is the same. Her son struggles too.
Ben is gaining weight too. He is fully loaded with all the nutrients he needs.
It is Ben I have to thank though.
A few days before we came here it was suggested that he should have a peg. Just in case.
He was listed for theatre.
Every part of Ben's treatment has been necessary, none of it, just in case.
I couldn't let him have surgery for something not necessarily required. Remember he was having surgery every two weeks in his throat. Enough was enough for his little body.
It was a difficult debate as if he had run into difficulty and needed a tube whilst here, the options would have been limited. There is no way they could access his throat to anaesthetise him, without causing problems and no way he could have an NJ ( tube up his nose and down into his tummy), again as they couldn't access his throat safely. Not after so much proton. No way.
My thoughts were, that he would just have to have a liquid diet. Never did I imagine he would not be able to swallow his own saliva. I was told that though.
I just chose not to hear it.
It was too awful.
Far too horrible to hear that that would happen to your child. Your little boy.
Did he know?
Well, he made the choice to have the peg.
When I stopped him going to theatre, told them I had changed my mind. He got out of his bed and on the theatre trolley.
"Mum, stop worrying. Stop saying this stuff. You are making me scared. I am going for a peg. We don't want more problems than we need do we?"
I was told.
Here we are. The best thing that could have happened to keep him strong.
I do need to thank Ben for being so very very strong, for being mature and for facing this journey head on. Determined and strong.
To his Specialist Nurse for being tough, and telling me it had to be done and for the Proton Specialist Radiographer who actually thought of it in the first place. We thank you x.
We are often put off by previous experiences. I looked after patients who abused their pegs, putting whisky and other things down them because they couldn't swallow!Who didn't clean and dress them as needed and who didn't do the care required. I have seen and nursed some horrible messes that have been as a result of a peg. They are a source of infection. A child on chemo can not be subjected to an increased infection risk. They could get ill. Worse even.
Everyone is different and deals with things differently.
Don't judge today because of yesterday.
That won't help.
So we have taken a giant leap now, towards the end. We are nearly there. It is incredible.
This weekend we have travelled to Orlando again. Our friends have let us use there amazing home. Yet another set of fantastic friends, warm and generous people. We are so very lucky.
It is so relaxing here. Even Chloe has had a nap this afternoon. Unheard of. Ever!
There is a bedroom upstairs, all decorated with Play Story characters. This afternoon she decided she would like to go to bed with " woody".
Dean's face, a picture!!
She did though, and relaxed. Chloe. And Woody!
Ben has been asleep this afternoon for over 3 hours!
I have had three naps, in between administering either feed or pain relief. It has been bliss.
Amazing, not to have to do anything, just to sit, to sleep.
Just to not worry.
Nanny and Grandad being here are a great light relief. Someone else to share with.
They are so helpful with the kids. And my father in law never leaves one moment dull!
They are a great combination of mummy mummy and funny daddy!
The kids are thriving with this new stimulation.
They were petrified to come here, my in laws. They have told me that now.
They did not know what to expect. They were worried that Ben was going to be so unwell that it would be too much. Too scary, it would hurt too much. But they knew. They knew he wanted them. We are truly grateful.
There have been moments. Moments when he has been crying and distressed.
Moments when you forget or don't know what is coming next.
It is hard, hideous, dreadful, frightening. Flipping unfair.
These moments, though, they seem to be getting fewer.
Or am I used to it?
When we arrived here at our friends home we were greeted with the best surprise. EVER!
A packet of JCC,s!!!
What else can you wish for? Your eldest finishes proton and you get to celebrate with a cracker!
Fantastic.
Thank you - you know who you are x
I am already missing some of our new friends. We have met so many, people, with such amazing and courageous journeys.
The Grey family? I wish we had had the chance to know you better? I wish we could have spent more time with you and your girls.
They weren't really the Grey family. I just managed to put a post on Facebook saying they were a grey family. I meant "great"!!!
Our new friends, do you remember. They gave the kids soft toys. Blessed by their Methodist faith. Their bell rang this morning. We are so pleased. They had a photo with Ben. He was very unwell at the time. They went away, with their faith and their community. They prayed for Ben.
They took a photo yesterday. It was different. A before and after.
They have thanked their community for the prayers that have been said for Ben.
On paper it has worked. He looks different. He is so much better.
We thank you and your faith.
So now what?
We have only 16 days left. We meet some friends from home tomorrow. We can't wait.
Apparently we, well Ben, is also meeting Jessie J tomorrow evening. I will keep you posted!
We have still got things we want to do and see and our time here is running away. That should be good though? This wasn't a holiday.
But it isn't.
I don't want to leave.
I asked Ben if he would like to stay. At least until his chemo had finished in May.
I could bring him home. Well. Treatment finished.
He wants to come home now though. He is done. He has had enough.
Did you see the ski trip picture?
That is what he misses.
His friends.
His life.
His bedroom.
His home.
We are coming home.
We continue to embrace this journey. Whatever it throws our way we will deal with.
It isn't easy, but what is?
There are many people who today are fighting the battle, just like we are. Just like Ben is.
Each day we think of you too and hope that your light at the end of what seems the longest tunnel ever, starts to approach.
Tonight from the Carters, we send our positivity to you. To those who are struggling and who are still on their very own special journey, we are thinking about you.
Some of you we know. Others we don't.
It doesn't matter.
We are all in this together.
Wishing you love X
Goodnight from the Carters until tomorrow xx





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