Day 35/36

Ben continues on despite some side effects of both the proton and the chemotherapy. It really does drain the life out of him but he carries on in true Ben style. Never grumbling and always fighting.
He is quite low in mood now and he really misses his friends and home. That hasn't been helped by having his phone stolen whilst in his hospital bed. What kind of person steals from a child, yet alone a child hooked up to chemotherapy, who has little comforts to enjoy right now. Well I know what type of person it is. One who has never had to experience what Ben is experiencing and one who's philosophy means that they feel that they are owed something out of life. The person who stole from my sick child will never read this as they wouldn't care but someday they will get their punishment.
It doesn't stop us though. It is a little thing in the grand scheme of things. A phone can be replaced. We don't dwell.
Since coming out of hospital Ben has continued to battle the side effects. He has been eating quite well and enjoyed a night out with new friends last night. It was great watching these children, these fighters, enjoy their social interaction and just generally having fun. It was great to socialise with their parents and laugh as if we were just a normal group of friends. But there was and is nothing normal about this experience or this journey. But you do normalise things, without knowing and subconsciously. You just fall into a new way of life and a new routine. There is no choice, we have no choice.
One of our new friends has finished her treatment and is now finishing the last few days of her trip in Orlando with her mum. She is the same age as Ben and is so lovely. Although she doesn't have cancer, she has a problematic tumour which throws of cysts. She has had such a struggle and continues to fight on. She has the most beautiful hair and always smiles. Her mum has been my evening telephone buddy. For those who know me, you will know that when I fancy a chat, boy do I fancy a chat! She and I have shared many a story over the last couple of weeks. They are our stories and not for sharing but they have helped. They have normalised evenings that often seem so long and draining. We wish our new friends all the best.
My Jacobs cream cracker friend continues to make me laugh. We share a lot in common, in particular our ever emerging grey roots! Well, not long for me, I am braving the hairdressers on Monday. Two hours without the children, oh my flipping goodness! I am so excited. Even if my hair turns green I will still have not had to administer hands on care, deliver enteral feeds or gastrostomy care or smacked bottoms!
Guess who gets what?!
We are going out again tonight with new friends. Rollers are in and nails painted. What else do you do on a cloudy day in Florida?
I still miss mum. It has been a week since she went home. When I speak to her I know she misses being part of this journey too, but life must continue for others.
The day after she got home, her father, my grandfather died. We had never had a close relationship but he was her dad. I wish that I could have been there to support her. But I couldn't, I had no choice. The funeral will take place when we are here so she will be in my thoughts, that is all I can do. Moments like these you realise how far away from home you are. I hope her dad will look down on Ben and help to keep him safe and well. Any belief must help?
Dean has always struggled with the way that my family talk about and deal with death. He thinks we talk about it as if we were talking about what we were going to have for tea. We don't, but it is our way. Everyone copes differently. No one should be judged. In our family right now though, it is hard to find anything as terrible as what Ben is going through and therefore how do you stretch your emotions to deal with anything other than Ben. I can't. I don't have the energy or the will to share my emotions with or about anyone or anything else. That's is not because I don't care, of course I care. He just needs my energy. He needs everything I have to get him through this. He will get it. Anything he needs I will give him. Well, anything I am able to. I can't take this away but I can help him in any way possible.
I have been expecting my Grandma to die whilst we were here. In fact I have been expecting that for the last 2 years. She has been ill, she is a shadow of her former self. She was a strong character and now in the grip of dementia her strength is presented as being nasty. She may have always been nasty, inwardly. Who knows?
She is my dads mum but my mum visits her often. She was very cross that mum came here. Mum explained that she was coming to help us and to help look after Chloe. Grandmas response was "can't they just put her in a home?"
She didn't mean it ( I don't think!)
She would be mortified. Life is cruel that it changes people in such a way that they become unrecognisable. Is Ben unrecognisable to you? Has he changed? Does he look different? I don't know. I see him every minute of every day. He must have though. How could he not have? Would you? Wouldn't we all?
I hope Grandma doesn't die when we are here. I want to be there. I want to be with my family.
I am running out of time here. I was going to use this time productively. I was going to be bronzed and beautiful!
Instead, I am continuing to expand, I haven't been to the gym in nearly 2 weeks and getting whiter as the Florida storms continue.!
Oh well, four weeks to go so any miracle is possible! It will need to be a miracle as well, as a nice friend pointed out yesterday on FaceTime when she asked me "what is wrong with you? "
Followed by "You look like Marge Simpson !"
The cheek of it! With friends like that....!!
The good thing,though,here is that the clothes sizes are different than at home. So you can happily buy a 12 and nicely slip into it. You feel good and pretend that you really are still in that twelve. You forget that a European 12 is actually a 14 ( and a bit more!) you feel better. It doesn't matter what the factual accuracy is. The label says a flipping 12. I am therefore a 12. There is no debate, no question. That is what the label says!
My brain is mushy. I can't really think that well now. I am not intellectually stimulated. I talk only about proton or chemo or food or drink. I don't think, things just happen. I need stimulation.
Musical beds is the normal in our house now. I never wake up in the same place as I went to bed. One of us needs to sleep with Ben. The inflammation in his throat is apparent now and his dry throat contributes to making his breathing more noisy. He has an irritating cough and he is uncomfortable. You can see that now. But he won't tell me. He won't let me help him. I have every medicine for every occasion but he refuses. He is afraid. If he admits it, it is really happening.
Dr Dreamy was pleased with his progress though this week. He wasn't as pleased with mine though as he commented on the fact that my skin would have aged a decade by sitting in the sun! Cheeky! He actually kicked us out of his clinic this week as we were taking the pee! Not in a nasty way but more of a "get yourselves outa here" kind of way!
"But Dr what are we to do to help Ben and his proton reaction?"
You guessed it!
"Keeeeep doin wot your dooin"
And again, the advice from the worldwide, renowned expert continues to blow me away.
Dean reckons he is just some guy that wears a lab coat. He may have a point!
Chloe continues to be Chloe. Her new hobby is to fill up her sandcastle buckets with water from the fridge. She then carries it onto the balcony and pours it everywhere! I don't stop her. After all it is tough for her , boring really. She continues though to throw spectacular tantrums. She is in trouble for being agressive. She must stop shouting at me. So yesterday she developed a new technique. Rather than screaming at me, she stared at me and looked right into my eyes. Very calmly she said "hulk slam".
Ben was in hysterics. He understood her and told me that she was just explaining, in a very polite and non aggressive way that she would like to hulk slam me.
My precious little doll!
Life goes on and the fight continues. I enjoy writing this blog but I can't wait until the final day that I write. That means the end.
I have no idea what the ending is for this story. I don't choose this ending. It is chosen for us.
It will be good though. It has to be. There is no other end that can be contemplated.
Maybe I run off into the Florida sunshine with Dr Dreamy !!??
Only joking!
I couldn't run!

The end will be that Ben will finish his treatment and life will resume. School, work, planning, enjoying, fulfilling dreams and ambitions. Life. Life as we knew it, life as we liked it.
It is funny really. No one ever expects this. I have had many a bubble burst in my life but never like this. Never the bubble that kept things ok, that kept my children safe and well. Nothing this damaging. Nothing like this. But our turn is nearly over isn't it? We are about to blow up our new bubble and be safe and well and happy again. It won't be long.
What I do know is that it will never be the same.
Nothing will ever be taken for granted.
Nothing will ever beat us. Not now. Not ever.
I love it here in Jacksonville. I can see now why many people don't want to leave. Life is different. The people are amazing. People take notice and they care. Never a day passes when someone's act of kindness doesn't make me cry or go fuzzy. I have never used the word fuzzy. I didn't really relate it to anything for me until a reader of this blog told me that seeing Ben's smile made her go fuzzy. I get it now. I get what it is to feel fuzzy.
So the journey,so far, continues to drain and to sap every bit of energy. It continues to shock and excite. It continues to encourage and to please. It continues to scare and to hurt. But it continues. That is what is important. We will find our ending. Ben will have his happy ending.
Then life will resume.
The bubble will be blown back up again. We will continue. There is no choice. We have no choice.
So from the Carters - have a well deserved long weekend and a very Happy Easter.
Sending love across the pond as always. Your friends xxxx


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