Day 43/44

I discussed a while ago with Dean about his mum and dad coming here. Dean wanted to surprise them with the trip. That is Dean all over. He loves surprises and gestures but doesn't see beyond today! I knew back in early February that it would get tough here and I knew his mum and dad would find it hard. We did all discuss it and they wanted to come. Or they needed to come.
We are used to it now. We live and breath the treatment, the symptoms and everything else that goes with it. My apartment is a mini clinical area and my life is timed around drug and feed administration and regimes. It was going to be like this. But we have been eased in. We have seen the deterioration. Albeit, one day he was ok and the next not. We were constantly warned of the side effects. We were ready. Kind of. As ready as you could be.
It is hard for them. They watch the 4 hourly drug round, the feeding regime and witness the pain and distress. They feel it too.
But then it gets back under control and we proceed. We get on. We have fun.
It is not all bad. Not every minute of every day. Just often. Just getting more frequent. But it isn't for long now is it? Not really.
I had an hour on my own yesterday! They all went shopping. It was great for 15 minutes. Then I was scared. He needs me. Doesn't he?
He is late for his feed now. I never thought I would say that about my 11 year old.
Bitty!
But I worry. I want everything to be perfect. As it can be. There are things I can control and I will, to make sure that everything is ok. He isn't here now. No one is.
But isn't that good?
Isn't that what we wanted?
To be normal?
We are being normal. Normal scares me too.
So, what do you do in a crisis? Glass of wine and paint your nails! It always does the trick.
So they are here. The in laws. They are hilarious!!
They travel a lot. Mainly to Spain but they have, over their lives, gone many many places. They are the same. Each time they travel. We laugh, Dean and I. We know what to expect. Deans Dad will be deaf from the flight and talk so loud that everyone and anyone will here. Deans Mum, she will have swollen feet, ankles and legs from the flight.
We expected it and we were right!
So day 1 of their trip wasn't too bad but wasn't too great either. Ben had episodes of pain and a few outbursts but he soon picked up. It is nice to have fresh company, some help. Some reassurance. It is good to have them around.
The kids were so excited to see them. 7 weeks apart isn't a lifetime but it isn't normal, not for our family anyway.
Ben slept well last night and woke again with yet another new and refreshed frame of mind. He looked good this morning. No, he looked great!
He has little blond hairs coming back now and his eyebrows and lashes are growing. I am not sure why as he is still on chemo but common sense tells me that it is the cycle of regrowth. Will he loose his hair again? Probably.
I don't care really as long as he is well.
Today he was well. I have got the pain better controlled, although I do keep forgetting what I last gave. Not a good thing to happen so I have reverted to the good old nursing days. I keep a handover sheet for myself. So I know what to do next, just in case.
I am a foody! You would never guess! But I am. It would be my worst nightmare not to be able to eat. Well one of my worst, anyway.
How awful. To smell food, to crave it, but not to eat it?
It doesn't bother Ben. He has never shared my passion for eating. Food has always been a necessity for Ben and not a desire.
But for me, food is life. What you eat determines how you are. That is why feeding him milkshakes through a tube troubles me. I want to give him fruit, I want to give him health and healing with food. I can't right now. But it won't be for long now.
We concentrated hard on his diet, before hand, expecting this to come. We helped him build a reserve and to date this has worked. Not long now before he will start to eat properly again, I am sure.
Today we went to my favourite spot at Jax beach. It is my tranquility. It is my thinking spot. I love it there.
Today it was wild though as their was a rock festival on. As we walked through, and for the first time, Ben smelt food. He wanted it. Chips. He wanted chips.
You have never seen a family scramble so fast to get their kids a plate of chips. We basically ran to the nearest food tent. We ordered them and HE ATE THEM!
Slowly but surely. Mind over matter. Determination. That's Ben. My Ben.
This gave him confidence. Although , uncomfortable, he didn't choke. The pain wasn't as bad as he had had before. He went on to eat a further 4 chicken wings, of course at Hooters again! Celebrations all round today!
You see, each day brings something new. Sometimes a challenge and other times a milestone. But it is what it is! It must be embraced.
Ben looks good. How do you look good after 6 cycles of chemo, 24 protons and no food or drink for over a week. His neck looks amazing. The severe burns look more like mild sunburn. Good old petroleum jelly and ice therapy.
I am still happy here. It really feels like home now. But when Ben feels well and looks well then I want to be at home. It is what I said in the beginning. Here, there is security and nothing else to think about, except Ben. At home, there are responsibilities. I can't take on any more. Not when he is ill. But when he is well, I am ready. Ready for new challenges and new experiences. Ready to see you all again.
With Dean's parents here, there is more flexibility. Chloe has more people to irritate and cuddle of course. Ben has more people to demonstrate his strength to, and Dean, well Dean has the company he has craved. His Dad to have a beer with and his Mum. Just being here with him. His mum.
I miss mine. I wish she was here. I miss our chats, our laughs and our time together. She misses here too.
It is a place none of us will ever forget. Ever.
We are heading back to Orlando after Thursday. We are going to do some more attractions and see another part of Florida. Yet again, the kindness of our friends sees us staying in their beautiful house. We are grateful, we really are. Their place is near to where we stayed before. Near the place that our other good friends let us use. It will be like taking a holiday. A vacation!
Staying and visiting a range of places, gives us a variety that is welcomed. The change is as good as a rest. We are excited.
We are hoping to meet up with some of our friends who are here on holiday too, so that should be great fun. It will be great for Ben to see his friends and be as normal as he can be under the circumstances.
Whilst I write about Ben's journey, I know too well that there are many people who are in their own, unwelcome and unexpected journey. I know that many of these people read this blog. Some feel encouraged and others see a replica of their own lives to some degree. Some share the cancer journey and others are on a different road. But together, we are not alone. We can do this, because we have the strength, the will and the determination to take what these brutal diseases and illnesses are dishing out. We will get to the end of our journeys and we need to all keep this focus.
So from the Carters, we are thinking about you all. You are our strength. You are our support. You are our friends.
From us goodnight! XXXX

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