Day 15/16

The last two days have been tough, very tough. We always knew it would be but you can never imagine just how bad it could be.
Chemotherapy resembles childbirth. You basically forget how hideous it is when you have it as if you remembered you would not do it again!
Ben saw his oncologist yesterday. She was so lovely but it is hard to explain to a stranger how unwell you know your son is going to be and they always have an answer. So her answer was don't worry little buddy, you won't be sick as this time we have missed one of your chemo drugs out. He had the chemo and bang on the money 4 hours later he started. Uncontrollable vomiting, feeling wretched and nausea beyond belief. You have just got to keep reminding yourself that he is ill due to the treatment and not the disease and that these dreaded symptoms will pass. But it is tough. Very very tough.
The proton was scheduled for 4.40 pm yesterday and we arrived to be told of a significant delay and to come back at 7pm. Our nerves were on edge but we did as we were asked only to be cancelled upon our return due to equipment issues.
So treatment was rescheduled to start today. His time was again 4.40. His treatment took place at 7.15. I have never seen him so frightened in all his life. It was heartbreaking. I did get them to agree to us escorting him into the proton room to reassure him but it was so hard seeing the huge, noisy and overwhelming machine. He was strapped down by his wrists and on went his mask which was screwed to the table. It took 30 minutes to get him in position and then the proton was administered. We were not allowed to stay so we left our poor anxious and dependent little boy in the capable hands of the therapists.
He did it! What a star! We are so proud of him. Only 27 more sessions to go!
We did take the kids to the beach today where Ben sat and took in the sea breeze. It was helpful but a sorry sight.
He will pick up. Treatment scheduled for 7 am tomorrow so I will be taking him in my pyjamas with bed hair! At least tomorrow will be over and done with early.
The proton hospital is a strange place. Everyone is so integrated. It even had a singer there this evening with cheese and wine been served! It is bonkers! I joined a proton support group before we came here and yesterday I got to put some faces to the names. It was great but also hard as a lot of people are finishing right now. I assume a new group will arrive though soon.
I had to go to the pharmacy tonight to get Ben some feeds as he isn't eating again. Which pharmacy have you ever been to that has a dunking donuts, sells cigarettes and wine and a variety of other unhealthy bits! ?
My mum has been here three days now. She is incredible.
We have been here over two weeks so we have found our way round, we know how to use the washing machine and the TVs remote. Or at least we thought we did until my mum arrived. She clearly lived in Jacksonville in a previous life. In fact she actually lived in this very apartment and even had proton. Amazing!
Dean you are going the wrong way!
That's not the right button to press, as she then untuned the whole tv!
This is a large proton machine, the one I saw was smaller! WHAT? When did you see a proton machine?
It was raining here all last week! NO IT WASN'T, we were here!!
You can't get breakfast in there! YES YOU FLIPPING CAN.
The washing machine won't wash if you do that? YES IT WILL.
So bets on who will flip first? I go for Dean!!
Oh and by the way she is also an expert on American politics, tornados, and forest fires so if you need any information just message me and I can put you in touch with Mummy Know it all! I love her really and she is being a great help, even if she does want ho keep watching the OJ Simpson trial over and over!
So Dean didn't get his flight this afternoon. We were all set. He then just turned round and said he wasn't going. I did feel relieved I must say and after today we both realised. You can never know what this journey is like, not really. The only way you know is to be on it. I can only try to tell you about it. But you can't know, not really. So if Dean had gone, he would have missed this and I could never have made him feel the way I feel right now. To be the best parent through this you have to feel it. You can never know how your child feels, not really but you can be there. That is the most you can do.
I now feel excited. I am charged and ready to get Ben through this and get back home to our house, our friends and our puppy. Not long now! Just another 49 days but I am not counting!
Our darling Chloe has been a dream today. I have no idea how the wonderful team at busy bees cope. She us driving me to drink. She never stops. Ever. She even talks in her sleep! It did make me smile though today when she did tried to help take bens mind of things.
Come on Ben lets play I spy with an eye! Something beginning with B.
Ball?
Beach?
Bed?
Blue sky?
Give up???
Answer - road! Of course! At least Ben smiled!
Ben has been able to pick some songs to have playing whilst having proton. His favourite if "that's what friends are for". He misses his friends so much and is totally thrilled that everyone is thinking about him and for the amazing cake sale that they held. A massive thank you.
So from us here goodnight. 7 hours to go until proton number 2 👍 xx



Sent from my iPhone

Sent from my iPhone