Day 12

Monday is fast approaching and although I want the days to go fast so we can get this dreaded treatment done and dusted, Monday is scary.
Ben has his chemo all being well with his bloods and is then to have his first proton. It has been brought forward a day. For no other reason than it is the start of the week.
So on Monday we go to Nemours children's hospital. It is a day care unit and he will have his bloods taken, await results and then have his chemo. He isn't having ifosfomide this cycle which is a relief and means he won't stay in this time. That is such a result as it is too early days for any of us to stay 3 days in hospital, including Chloe who keeps asking whether we live here now and is Luke from nursery coming here too. 💑
After chemo we go to see Dr Danny at the Florida proton therapy institute. I cannot work out whether it is a hospital, a lab or just fabulous office facilities, but whatever Dr Dreamy ( I mean Danny!) will be there! He will see Ben and then the proton will happen at 4.55. I know it sounds a bit like the electric chair, but in a way that is how it feels. The wait.........
Ben will wear his mask and be fitted to a table where he will receive the beam. It will,over time, kill his thyroid gland, cause sun burn and a sore throat, described by Dr Danny as worse than you could ever imagine. He won't be able to swallow even his own saliva once the treatment takes hold. This is scary but it will get better and he will get better and we will look back on this as a nightmare, an experience but also as an opportunity.
Never ever take anything for granted because you never know what is around the corner. All these years I have worried about trivialities and now? Well now there is nothing else to worry about.....except...
Whether the house has been burgled whilst we have been away.
Whether my Mum will catch the correct flight here or get lost somewhere in Hooverville.
Whether the dog has pooed so much on my mother in laws carpet that they have had to get in industrial cleaners in
Whether my roots will be by my ears when I get home
Whether the flight home will be able to take off as a result of my body weight
Whether tomorrow will rain
Whether I will be able to drive here when Dean goes home
Whether Ben will catch up at school
Whether Chloe will get expelled from school!
So not much worrying being done!
Since we have been here at least 10 kids have graduated from proton. Basically on their last day they ring a big bell in the entrance hall and have loads of photos and speeches etc. I don't know any of these kids but each of them we share something with and every time I see their video I feel so proud of these young, amazing people that have completed such a difficult journey. Something I hope nobody else has to do. But they will. And they will do it just like we will. And eventually it will be a memory.
I have said this before but I really still can't believe this is real. It seems so bonkers. Christmas Day we had 25 for lunch. Ben wasn't great after chemo but we were ticking off the cycles. Since then it has been none stop. Now we are here.
My mum comes tomorrow night. It is going to be odd. Although we have had a great couple of weeks she is arriving as it all begins. Dean had already chuckled imagining our arguments! We are two peas in a pod. We both know everything about everything me and mum!
My father in law has called me a know it all since the day he met me. I am not commenting!!
Chloe is now American. She says gee and good job. Today she announced " today is a good opportunity for you willy bum sax". WHAT? Well of course you automatically assume male genitals, a bottom and male genitals again!?
How dare you? Don't say things like that. Rude little girl. Ben curling in laughter and Chloe looking at me as if I had just crawled from under her shoe. "Stop it mummy! It is the opportunity for willy bum sax"
What on earth?!!
After Ben finally stopped laughing and I tried to stick back in the bits of hair I had torn out in exasperation, I was shown willy bum sax. Or should I say William Sacks on her Annie DVD. Hilarious!
Today has been our final day of enjoying Pete and Sarah's fabulous home. This morning as the sun was beating down we enjoyed our breakfast sitting on the terrace. Dean and Chloe had a swim and Ben ( who can't swim as he has his line in) played pool attendant again. It was so peaceful and relaxing... Then dean got out of the pool and off we went to islands of adventure! It was actually quite fun. If you get the chance to go then you must ensure that you stretch your 3 year olds head by the chin every time they get measured. They soon make the height. But then beware. They realise. If they don't want to ride they stick their bottom out like a duck so they shrink by 4 inches. Thanks Sarah for the tip of padding out her shoes. It worked a treat. My boobs didn't look the best though once I had removed the padding from my bra!!
Everyone has gone to bed now and it is so peaceful. A few chapters of my book I think before I turn in.
Thank you to those who have read, continue to read and who comment on this blog. I hope you feel part of our journey.
Charlie and Mandy will remember that the blog was really for Ben to write. He had asked if it is ok if he writes it down and I post it? Of course!
So from Ben:
I have travelled to Jacksonville for proton. See you soon!

I reckon you would have quite s lot of reading between the lines if I wasn't helping out!!

From the Carters goodnight. And mother? If you read this, get on the right plane xxx❤️

Sent from my iPhone