Day 25/26

Yesterday morning started with a 0650 proton stop. I actually quite like the early ones. It is quiet, you get in on time and I basically turn up looking like I slept in a skip! I Drink a strong coffee whilst he is treated and then I leave. I don't even clean my teeth. I just turn up wait and leave.
So this morning was no different. I really was not up for seeing anyone and definitely not in the mood to chat. Surely no one would have wanted to chat to me anyway looking the way I did and with the morning breath?
Then I met a new friend! Boy did she like to chat. She had lived in Jacksonville her entire life and her husband was receiving proton therapy for a tumour in his tonsil. When Dean and I met her, both Ben and her husband were in their respective treatment rooms. We chatted, we compared stories, she had some great tips.
Her husband, she told us, only had 2 sessions left. His treatment was like Ben's and was directed at the throat area. His wife called herself a tiger wife and told me that I needed to be a tiger mum to get Ben through. By that she meant being cruel to be kind. Be firm. She told me that her husband was doing well as he had a milkshake yesterday. This is going to be bad. This is going to be really bad.
So the tips were to make this mouth rinse thing. She said that the mixture of baking soda and salt worked at cleaning the throat area which starts to resemble cement as the salivary glands are irradiated and stop functioning. She told us to get a soft ice pack so that every time he finished treatment he can apply it and sooth the burning sensation. She swore by Aloe. Using the creams on the outside and the drinks to heal the inside. It all sounded pretty sensible.
And then they both appeared. This grown man alongside my little boy. How could this be possible that they had this in common. It was hard not to stare really. I wanted to get up close and really examine him. I wanted to see how my little boy will turn out.
His skin was visibly red/purple. It had started to flake but all in all not that horrendous. His mouth was quite closed as he spoke. He looked stiff. He explained that the restricted movement causes this. He taught Ben a couple of exercises to help keep his mouth open where possible. He told us of his terrible sore throat and the fact that he had extreme swallowing difficulties but he told Ben that he must get through it. He must try to keep swallowing for as long as possible. Ben's response was interesting. He nodded and nodded and then we went. He wasn't phased. " I am going to be like that" he told me. "Yeah I know" I told him. And that was that.
Knowing what to expect - is it easier to know? I am not sure. When you see it or hear about it it becomes real. When you don't know you can't imagine. Not really. The problem is that I know. I have nursed many radiotherapy reactions and I know what Proton does, but somehow I have convinced myself that Ben will be different. He will be the proton miracle child who escapes unharmed. Who will not be damaged by this whole episode. That's not true.
Today his proton reaction becomes more visible and his throat is sore. He is tired.
Other than that, all is good here right now. We are now quite settled. I have still not been wearing make up and the grey is starting to appear. I was thinking about going dark for a bit as I thought I could just use one of those wash in colours. I continue to expand, despite my best efforts in the gym. Chloe is fully American with her new words and expressions. She now likes Candy!
In an attempt to have a fun weekend we have come to Disney. We have not had the best experience and they really are not interested in helping. I thought Disney was the destination that most sick kids were striving to get to. I would give it a miss. We managed 2 rides in the day due to the long delays. We were all shattered and as Ben's counts drop it is getting too much really. We continue to try to keep strong and remain positive.
We are staying in a family room in the Disney resort. It is especially cozy and romantic. 2 beds ( not particularly large) occupied by the four of us and my mother!! It is like an episode from the Waltons! Good night Chloe, goodnight Ben, goodnight Dean, goodnight Mother!
Tonight we are indoors awaiting room service that we ordered over an hour ago. Dean and I have self inflicted exhaustion. Note to self. Do not drink copious amounts of wine, go to bed in the early hours and then tackle Disney. Horrific!
Chloe did get to meet Elsa though so that was a bonus!
We have been here a month almost now. It has actually gone quite fast but today I am feeling it. I want to get home. That is probably the 24 hour hangover talking. It has been especially special today. Headache, sweats and nausea are such a delightful combination. How dare I complain though. Mine is just for a day and not for months on end.
Mum has decided to stay on for an extra week. Ben won! It is nice to have her and to have that extra company. She has become an exceptional mediator between Dean and I. She has also been useful this weekend as I forgot my underwear. As she has brought her entire wardrobe I have Been able to steal her knickers! A pair for each cheek! Result.
So another week is almost over and we get closer to completing this chapter of Ben's journey. Our support network continues to be much needed and I hope that you are continuing to enjoy the blog (I note that even Ben posted earlier?)
I had a FaceTime conversation with a lady who comes here in a couple of weeks with her three children. Her eldest is having proton. She seemed great and I am really looking forward to meeting her and her family. You look forward to changes here. It is a bit like being in prison I imagine. You are locked up here and you cannot leave, albeit the sun does shine quite often! I now resemble an oversized old leather handbag!
Ben continues to work on his designs for Ben's buddy which we will hope to launch soon after getting home. He is really excited about the opportunity to give a little back. I am really hopeful that young kids will like it and it will help.
I bet you are wondering what it was we did last night that left us feeling grim? Well basically Dean and I (and Chloe) stayed up singing karaoke. What a couple of plonkers! It all seems very funny when you are doing it but this morning when we bumped into a few people from last night, humiliation swept over us both!! I didn't care really, not much anyway. You see this journey has taught me so much. It has told me that there are things that I need to worry about and others that quite simply I do not. Your mind is a dangerous tool when it wants to be and to manage this situation you have to manage your mind. You have to challenge negative thoughts and rash decision making and importantly go with it. Take each day as it comes. Never be shocked or disappointed that a plan may have changed and just follow the path that is laid for you. There is only one direction that you must take. You must never detour or loose your way. The path is your guide to the end of the journey and that is the path we are taking.
Goodnight all. Sending all our love The Shiters! ( that is what the hotel receptionist mistook our name to be!) quite apt really xxxxx



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