The last leg

We have come to Clearwater to complete Ben's US journey.
All treatment here is complete and Ben is officially discharged from the hospitals here.
Ben has had great care from the staff at Nemours Speciality Children's Hospital and also Wolfsans. The proton centre has dedicated its specialism to him and for all of this we are truly grateful.
Only 2 more chemos to go when we get home and then that should be that. Hopefully.
It is odd now, we are on holiday. Away from the comfort of Jacksonville and away from those who get it, who understand it. The protonites are a normal occurrence and part of life in Jacksonville and therefore people rarely stare or pass judgement.
Here, we are away from that bubble. That secure and safe network.
Here, Ben is a goldfish in a bowl and everyone is having a look. What is wrong with people. Have they never seen a bald kid?
Yes, he is attached most of the time to his feeding backpack as he still won't eat, not really. But I think we conceal it well. Why do people stare?
They you get the over sympathetic starers. The ones who smile so hard at you. The ones that really just want to scream " Oh my goodness! How terrible, how sad, how horrific!" but they just smile.
You also get the ones who just can't resist.
They sit staring all day, whispering amongst their group and eventually they pluck up the courage to approach. You watch them. You knew they were coming, but you didn't know when.
Basically, the curiosity gets so bad that they just have to come and find out. Find out whether it really is Cancer. This is the twenty first century! Cancer is everywhere.
Yesterday was a hilarious example. Me, lying on a sun lounger, Ben doing the same. We were Half dozing, half chatting.
Nice and relaxed.
Then she approached.
"Hi, I just wonnid to come over and let y'all know that we think that your boy has a lovely shaped head"
Oh my flipping goodness!
Ben's face was a picture. I mean, how does the head attract so much attention? You don't get people wandering over to tell you that you have nice shaped knees or lovely shaped toes. Not usually anyway!
I said thank you to her and left it there. I did not engage further.
She stayed though, hanging about. Blocking our sun.
Waiting, like a vulture, to see what she could find out, to see if she could get any information to report back to her friends.
She waited and waited.
And then I told her.
Ben has a rare but highly contagious disease. It has caused his hair to fall out.
We brought him to the US to find a cure. But instead he just keeps infecting everyone he comes into contact with.
We don't know what to do?
Go on Ben, give the nice lady a big hug and thank her for her compliment.
Oh my flipping goodness. She moved fast!!
I assume she told her group as less than five minutes later they were scurrying from the pool area holding their towels to their faces.
So, that's not really true!
I did,really, just thank her.
The latter part of the story remains in my imagination. But I will say it, one day!
So as our last leg of the journey progresses, we still have a long way to go to fully recover. He still won't eat. Not really. He is still fed through his peg. He still wears a morphine patch and takes regular pain relief. He still has horrendous bouts of tiredness and terrible mood swings.
I am still aiming for him to return to school on May 3rd. It may be a little ambitious?
Every now and again we get a glimmer of what appears to be a breakthrough but then he regresses.
He is, however, the most well he has been so far though, so we must be on the right path?
We had so much fun yesterday, driving around Clearwater in little scooter cars! Chloe and I had the girls pink car and the boys in the red. Chloe just sat in the passenger seat and laughed for the whole hour. Ben kept turning to Dean and telling him that he was having fun! It makes your day, your heart melts. Having fun? That's all we want him to do.
Each day we are looking for a fun activity that is away from the pool. A pool is not much fun when you can't swim in it. Especially when you love swimming and to top it off are boiling hot.
Our next activity is a boat trip to see the Dolphins.
So Dr Dreamy has become a distant memory, although one that will never be forgotten. He has, however got new competition. Beautiful Bartender! He looks after you whilst you are enjoying the sun by the pool!
So, he approached us yesterday. He told us the set up. Basically, your sun lounger has a flag attached. You raise the flag if you need some service. I can honestly say, I have never asked for so many bottles of water!
Dean nipped out yesterday and his parting comment was, I will be back soon. Oh, and put the flag down, it is getting embarrassing!
So beautiful bartender may not have the same credentials as Dr Dreamy but he is easy on the eye!
Although we are away from Jacksonville right now, our new friends are always in our thoughts. You might remember the 19 year old girl who was really struggling. She basically gave up eating and drinking, ended up with a peg and has been in and out of hospital since arriving here. She continues to deteriorate. She is dehydrated and very weak. She remains in hospital and both proton and chemo have been stopped for now as she is too unwell to receive her treatment.
It is so very sad.
I am going to try to visit her on Friday when we get back.
It must be such a frightening experience for her mum. Here, alone and in hospital for this length of time. Utterly draining and totally terrifying.
My Jacobs cream cracker friend is in hospital with her son for chemo this week so no doubt she will nip in to see her too.
Many of our new friends are home now. There is only us and one family left now out of our original group. We are getting together for a beach day at the weekend, all being well. It will be nice to have company. Nice to share and compare.
I'm still not sure how I feel about coming home. One minute I am so ready and the next I am scared. I and scared to leave here as I know I won't be coming again. It has been such a massive part of our lives and to leave it. Our home for the last three months. Our new friends, our new life.
But it isn't real, is it? Not really.
It will be good to get home to our friends and family and routine. Good to sort out our diet and our ever expanding waist line! Good to get a babysitter!
It is 4am here. I am awake. Wide awake. Not because I have been partying! But because it is always a tell telling sign that things are on your mind. I am surprised I have slept at all, since November. But you do. You have to. You need to be strong and well. That's what I used to tell the relatives of the people I looked after. They need you. You must look after yourself to be strong for them.
You have to, you have no choice.
So as another day passes and our time here becomes less I wish you all a lovely day.
From the Carters, good night, or good morning. Or whatever!





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