Crab shack! Busy but great

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Ben looking great!

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Day 14

Well that's it, done. The last day of forgetting and fun before we get on with what we came here to do and make our brave little boy well. Today has been a really fun and unplanned sort of day. Mum arrived safely last night and after chatting for a while we headed to bed before getting up today to take her out and about.
I really fancied the beach but Dean has contracted distance morphasis disorder. Basically this means that every suggestion I make of somewhere to visit is considered as just too far. He has always been a bit strange when it has come to driving places. He thinks that a drive more than 30 minutes means he needs a rest! Just as well he isn't a delivery driver or we would be destitute!
It just so happened that the beach moved from where it had been situated last week!
Dean announced that we weren't going because it was an hour away. After reaching the beach in 10 minutes it was clearly due to the lay out of the roads changing coupled by coastal erosion that had actually eroded so much land over the last 7 days that the beach was now on our doorstep!
I love watching my mums face when he and I are having such discussions. Priceless!!
So we arrived and stumbled upon the annual music festival. It was fab. Lovely stalls and kids rides etc coupled with music and the sunshine. A lovely way to spend today.
We visited a crab shack for a great feast.

As you can see from my pictures it was really busy. It was typical American. A song and dance by staff at every opportunity but great food. Even if we did all have to wear bibs!
After that we had a nice run around on the beach which again was lovely.
Check out how well Ben looks!

This is the bees knees!

If you have have the opportunity to get one if these then it is amazing. It is not an express or fast track ticket but an actual get on the ride instantly ticket. Absolutely amazing and courtesy of the Florida proton institute. Some times a little bald head has its advantages!!

Day 13

Woke up to the most lovely blue sky and as we were not visiting any parks today, sunbathing was def. on the agenda. It was divine. Sitting by the pool, reading, kids arguing and Dean sniffling away with his man flu! Total bliss!
What I failed to take into account as I planted my ever so translucent body on the sun lounger was the fact that I am so white that you can actually see the blood flowing around my body. But no one could see me, and sun worshipping I did. I basked and baked, turning only to fry a little more. I could almost feel myself turning this bronze shade, my hair lightening in the sun and my weight dramatically reducing as the sun absorbed excess water and toxins. Living the dream and looking the part too!
Omg!
I am redder than a tomato and I can barely move as my body feels like a plank of wood. I look totally ridiculous
Bens comment - what is wrong with your skin mum? Are you ill? You are a very strange colour?
My response- I am fine son. I have just been out in the sun that's all.
Bens comment- why are you so red?
My response- it will be brown in the morning.
Bens comment- don't be ridiculous! You will need to go to hospital in the morning. You are so red that you are actually purple.
Thanks son!
So other than sunburn and chilling not a lot else to report. My mum set off for here this morning. The strangest route you could take. Manchester to Heathrow, Heathrow to Dallas and Dallas to Jacksonville. Apparently as dad escorted her to Manchester check in desk she was last heard saying to the chap behind the counter "what do I do when I get to Heathrow?" My dad left the airport chuckling at the guys response, " well Madame, I suggest that you pick up your connecting flights to get to your destination" Brilliant!!
So Dean has nipped to get her. I hope that she emerges off the plane that I have tracked all day. I got such a sense of comfort when it's stays read "in air" at least I knew she couldn't get lost!
I am sure that she will be grateful to be greeted by dean and his man flu. !
So back in Jacksonville now and its quite weird. The kids got in, found their toys and settled down. I felt like I had come home too. It is very strange what you can tell your mind. A very powerful tool. Mind over matter? Wouldn't you agree?



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Do you think you know what your kids are thinking?

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❤️

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Goodnight from Chloe Carter x

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Day 10

I officially know no one here! We officially know no one here!
That's not always a bad thing. I once did a course a number of years ago and as part of the course we reviewed our individual styles. Then we tried out new styles in what was described as a safe environment. Following this our peers critiqued our new style. Well, I was slated for my new and fake style, that didn't suit me and was dated. Hardly safe!
So today, in our no friend environment I decided to try out a new style of mothering and wifing! Today I was to call everyone darling, smile always and never get frustrated or raise my voice. Today I was to be a Mother Earth type. Slowly wandering in a state of ultimate calm and well being. Children could get messy and fight, husband could continue to irritate and demand and I, well I would just smile and agree in my new found soft mumsy/wife voice. It will make be a better person and will increase my ability to cope during these tough times!
So we went to Universal studios, where else to try out the calm new you?
The drive there was great. The husband complained about the traffic and the fact that it would have been less busy if I hadn't insisted on applying suncream to our children before leaving the house. Don't you know it is much easier to just leave it till later. What ? later when they are red raw? I agreed with him though and even apologised for ensuring that Ben (who on chemo) is even more susceptible to sun burn. I even agreed that leaving 8 minutes earlier would have made the day far more enjoyable. I continued to smile my intoxicating weird smile. I felt relaxed, I felt humble.
Could you believe that there was a que into the car park? If I hadn't insisted on actually dressing either child then we would have definitely not had to que. What a fool? But I didn't call him that. I simply agreed. It was liberating.
Once inside the park we ventured on every ride. I giggled at the sheer excitement of feeling sick, apprehensive and of being jiggled around. That's the new me!
Of course you can have ice cream for lunch!
Of course you can lay upside down in your buggy whilst I am trying to push you and prevent you from falling out again!
Of course you can go on that ride with its 40 minute que again instead of going for the wee that you needed!
Of course, of course, of course. This is the new me!
Then came the ET ride. I suddenly had a memory of being 8 years old and the magical moment that ET said goodbye to us at the end of the ride, and then I relived it. This time 30 years later and with my own lovely family. "Goodbye Chloe, goodbye Ben, goodbye Joanna, goodbye Arthur" . WHAT? Who is Arthur? Of course.... dean. He had thought it hilarious to give a different name. Then the moment went. I continued to smile, my new sickly smile.
We continued in watching Shrek, going on the Mummy and really did have fun. Even when Chloe wanted to wrap up Bens new ET figure in my jumper as it was cold did I remove it and give it to her. Because that is what we do. We freeze for our children or our children's ET figures!
I managed it all day. I was new. A different and calm person. UNTIL.... The car journey home. Well let's just say after 30 minutes of listening to them go on and on and on. I flipping lost it. No flipping more, no moooorrrrrrreeeeee. Shuuuuuuut uuuupppppp. And then it was quiet.
So the new me came and went.
We got in and the old me returned. I screamed at everybody to get ready and they did. I ushered everyone out and they went and we ended our lovely day with a fab meal on the complex at the house we have been lucky enough to stay at, thanks to our great friends. Not only that but we were greeted with a champagne treat from some other friends who had arranged this for us from home. It was fantastic. Great food, great atmosphere.
So the new me, who knows no one and has no friends here was soon replaced with the old me, the old me with fantastic friends! We thank you and miss you all.
So from us... Goodnight! Xxx

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Would love to see this sight right now! But I shall have to opt for universal studios replica instead!

Missing you all xx

For those who don't believe I have not been wearing makeup!!

Me and my girl!

This kid deserves an award!

Today he got one!!

Day 9

Today I had a brain wave! Stop eating so much and then you wouldn't be so fat! So when the rest of the carters tucked into to their mega breakfast, I had a spinach and mushroom
Omelette. It was so boring that I had to dip into the kids pancakes! In fact I should have just ordered them as I ate more than I would have done if I had ordered them myself! Anyway the menu stated that my breakfast was 490 calories so only 25k on the bike to do to sort that!
After breakfast in international drive and a short car trip we have arrived at Kissimmee. We have kindly been given our very good friends holiday home to stay in for a few days. Totally beautiful and amazing location. It is available to rent so if you are interested then happy to pass you the details. Sarah ? Commission?
I have always had an irrational fear of the wind. Not the bottom type but the weather type! It results in me shaking and sweating and imagining blowing away like a scene from the wizard of oz when the tornado strikes. So whilst minding my own business in the supermarket a very nice chap advised us to go indoors as a hurricane is approaching. So what would you do? Exactly. Stock up on bottled water and tins in case civilisation is wiped out. I am ready!
Oh yes, and a couple of bottles of vino in case it all gets too much!
We haven't done anything major over the last day or two as we have been letting Bens counts recover. I think we are just about ready to brave Universal tomorrow. A couple more days of fun and then Dean goes home for a bit, my Mum arrives and the treatment starts. I must admit I am starting to get a little apprehensive but needs must.
Bens school teacher emailed me today with the most lovely video that his friends made for him. Waiting for the ok to post it and I will share it with you. It was great and brought a little tear.
The kids are currently playing pool attenders but even that doesn't stop the relentless bickering. Driving me bonkers! It makes it worse as Ben now has his voice. At least before you couldn't hear him shouting at Chloe!
In my last blog that went a bit wrong I was trying to tell you about Bens idea for bringing Bens buddy to the UK. When a kid has a line in it is really important that they are comfortable and that they stay dry. In the UK Ben was given a net to put over it. So basically as it says on the tin. A piece of netting. Here he has been given this soft fabric cover that goes round his middle and he loves it. It means he doesn't even have to look at the lines. Another thing that Ben has struggled with is telling us how he feels. So Bens buddy will have different emotion imoges so that kids can wear the band and display how they feel. We see this as a real positive for little kids.
This has only been possible because of your support.
I am part of a proton Facebook group and it is amazing. Parents post comments and we see each day a child complete their treatment. That will be Ben in April. Cannot wait.
I haven't worn makeup now for about a week. I have forgotten what I look like in real life but living the American Dream I certainly look like xxxx. The less I have to do, the less time I seem to have. Not only am I thousands of miles from home but also thousands of miles from being me!
I will never complain again! Until....,
So this evening is chilling out in this fabulous home. Early night ready for fun tomorrow. Until then ....

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Hard to blog

My phone is going to be thrown against a wall very very soon.
I am struggling to blog as it has a mind Of its own!
Stay with me and I will figure it out! Sorry posts are not making much sense!!

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Day 7 and 8

I Just keep writing and then loosing what I write. Totally irritating.  So I shall try again!

A non eventful day really yesterday. Hospital trip for bloods and dressing followed by cleaning whilst awaiting the results. Just as  well I did clean as his result came back showing that he was neutropenic, basically very w

I am not used to this! Much easier to be at work. Today  I counted 68 times someone shouting mummy? Draining I

So a couple of milestones have been reached today. Firstly we are down to the last 3 eyelashes. Gutted. Ben has the most incredible eyelashes... Or he did. The second was that he woke up with a voice. No idea why. This has historically indicated that his tumour has regrown but I am thinking that actually he is just getting his voice. It will be short lived as the proton will see to that. 

CIn between everything else we eat a lot. In the process of booking another seat home in the plane for my left butt cheek. Yes I have started to waddle. Not proud but can't help it. In America all you do is eat!

Today we headed to Orlando again. Staying in a hotel ahead of going to Pete and Sarah's lovely home tomorrow. We are going to hit a couple of parks before the proton begins. 

I still wake up each day and can't believe this is happening to us. I look at Ben and he is just Benjibob. Then the day begins, flushing this line, dressing the peg, anti sickness, temperature checking, worrying, focussing and refocussing. Then I know it is really happening to Ben, to all of us.

I never really thought of myself as having lots of friends. Acquaintances yes but friends no. I was wrong. I have the most amazing friends who have kept me sane, kept me strong and helped in every way possible. I miss you all. Get yourself in training for our return party! 

Anyway enough emotion! Guess where we took the kids today? Of course the Ice bar! Who wouldn't!! Neutropenic kid wearing fur coat enters a bar which is minus 5. Parenting at its best. They wanted to go, so we took them. We paid a fortune to go in. We all put on our coats and gloves. We went in .... We left. The kids were cold. What did they think was going to be in an ice bar? ! Following that we explored international drive   how they are feeling. Will send over a photo of a similar thing out here. 

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Bens video postcard

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Rather them than me!

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Family selfie geeks!

Daytona

Day 6

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Day 6 and 7

What a great couple of days.  We made this very quick decision yesterday morning that we were going to go to Bush Gardens.  We have no idea what next week has in store with Ben's blood results etc so we need to take every good day as we have it and really make the most of it.  If his bloods have dropped further tomorrow then there is no chance of being able to do very much as we will need to keep going in and out of the hospital to get checked.  However, tomorrow is tomorrow.

So we took the bull by the horn, threw a heap of things into a bag and set off.  It was obvious by my clothing for the weekend that we made the decision pretty quickly.  I wore the brown cord skirt with black vest, odd cream throw thing and ancient black flip flops pretty well!!  Didn't quite look the part at Daytona Beach which was our first stop!

Only about an hour ish away Daytona beach was as described.  Miles of golden sand.  Nothing else really going on out of season so it was a bit of a quick stop off.  We then headed for Tampa.  It was a typical car journey with an eleven and a three year old.  The normal things- Are we nearly there yet? I am hungry. I need a wee, coupled with the odd scrap in the back and a huge growl from Dean who exclaimed a number of times that we were turning round and going home.  We didn't though!  Do parents really do that?  Actually turn round and go back??

For a while it was just like any other trip.  I forgot that Ben was ill and that Chloe was bonkers and it for at least an hour felt like we were just a normal family on their holidays.  That was until we made a top off at Denny's.  Again all quite normal really until I was approached by a woman who resembled Pat Butcher but without teeth.  She casually walked over to our table where we had started our meal, tapped my on the arm and asked at the top of her American voice - "waaaardssss heee gorrrrrrrrrrt?!  For a second I was about to answer a cheese burger and chips as I genuinely thought she wanted to know what Ben was eating but before I could open my mouth she said - "the carnceeeer weeerrrrrr is it?"

OMG! can you actually believe it.  Ben rolled his eyes and I began to explain.  Why?  I have not idea it just seemed to be polite.  Anyway, after a good old chuckle about how we could have handled that differently we have decided that should this occur again then the answer will be standardised.

"My Son has a very rare and highly contagious disease.  It has already threatened to wipe out Britain so we have brought him to the US to a) save the British people and b) to try to cure this rare and highly contagious disease that spreads by just looking at him.  I will take pictures of the face of the next person to ask such a bold and outright question. 

So that kind of spoilt the normal bit for a while but that soon resumed once we were back on our way and the kids fought and Dean was too hot.  I was too cold and Chloe ....well was Chloe!

Next stop Tampa.  We booked a hotel in about 3 minutes from Deans phone..  Dean had illusions of being in a Marina where we could watch the boats whilst sipping a lovely bottle of Sauvignon whilst eating the freshest seafood know to man.  It was similar.  We pulled up to our hotel, which just happened to be the airport hotel.  On an industrial park with the noise of landing planes at each corner.  Ben thought this was hilarious and proceeded to take the P out of Deans choice for most of the evening.  I on the other hand played dutiful wife.  I complemented his ability to drive all that way and told him that the car park was handy as it was closely located the the main entrance!

It actually turned out to be great.  On the second floor was a walkway that led you to a really funky Mall type of things with great shops and restaurants.  So we didn't have the fresh seafood on the Marina as such, but the Sushi was fab.  We had an early night and then off to Busch Gardens today.

It is strange that in your head you can remember a place that you have been and I have previously visited Busch Gardens.  I therefore spent the whole evening telling Ben and Chloe what it was like and what to expect.  We arrived there and I did not recognise the place one bit and everything I had told them was clearly in my imagination.  It was still good though.  Ben was slightly tired but after having a few little push abouts in Chloes buggie he got on with it and had a great time.  Ben and Dean did the crazy rides and Chloe and I spent the day riding around in flying elephants and talking to sesame street characters.  The Boys did at one point get me to take Ben on this ride, which apparently I would like.  Now, I am not fearful of roller coasters etc....I just do not get them.  I can not work out why anyone would want to sit for a number of seconds, being ragged about, with their eyes shut, only to get off, throw up and feel glad it was over.  It seems like a waste of time to me.  But I did it anyway...FOR BEN!!!! and yes it was exactly how I imagined, it did not disappoint!

So a really great day.  Smiles all round and after a very long drive home it is time for a Sauvignon and a couple of chapters of my book.

Bloods tomorrow, chemo Friday and then Proton starting Monday and counting.

Goodnight all x

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Day 5

Well yesterday began with a browse about this vast city.  800,000 populating Jacksonville.  There is so much land though it is bonkers. Not like our little island at all. We found little streets like you see on the TV with the wooden houses and the rocking chairs on the porch.  Very little house on the prairie in some parts.  A kind of uneventful day really with no hospital appointments etc. 

Ben still hunched up and shuffling so we managed to get him to the gym for a good stretch.  He has just informed me that he did 2k on the bike and 15 mins on the treadmill.  Good Job Ben!  Dean took him whilst I provided the refreshments.  Lemon water, not Sauvignon Blanc.  It was only 0830 in the morning!  He did do really well though and it has really helped his posture and his pain.  I may even give it a go myself.  I might even beat my PB....of nothing!

We got the opportunity to go to watch the Jacksonville Giants play the Baltimore Hawks.  It was really fun if not a little odd at times.  Basically this was a basket ball game, but hardly any basket ball was played.  There was dancing and cheerleading as well as mascots and advertising.  The 6ft 8 Giants probably only played 3 mins of basket ball every 10 minutes to make way for a dance troop or a scratchy singer!  I have no idea how those players could concentrate.  They had a break for dancing, a break for advertising every insurance company in Jacksonville and even a break to watch the break!  It did grate on us all after a while.  Ben really enjoyed it and Chloe loved the cheerleading.  When the game resumed her response was "awwww, why are those men playing again!"  I think she liked the event but maybe not the basket ball.  A bit like Dean really who asked if we should leave after the first quarter to "beat the traffic!"  Not Quite Tottenham but a great atmosphere. 

What is really amazing here is just how patriotic the city is.  All military get mentioned everywhere you go, they are thanked and are welcomed into events and restaurants etc for free.  Quite amazing really and shows just how valued they are in America.

So today the weather is amazing.  We are going to head to Daytona Beach to catch some rays!

Ben has another free day tomorrow so hoping to get to Busch Gardens.  His counts are a little low so playing things by ear a bit.  He has hospital Monday morning to just check things are all ok and then if things are goo we have another few free days before treatment starts.  He has chemo on Friday and then starts the Proton on Monday.

So from us ...until later...

 

Daily Mirror Online - what a xxxxxxx liberty!

Well you may have seen the Mirror on line?!  If so just so you all know - they never asked us for this story and have fabricated the truth.  To be very clear - the NHS have funded Ben's treatment.  I have emailed the mirror and asked that they put this right.  You can also read my comments online.

Bens Journey is supposed to be positive and not something that the tabloids can use to exploit the NHS.  Thanks Sara for commenting - please all feel free to read my comments and reiterate on their online section.

FYI - story was run on the 15th.  Put Proton in search engine and it comes up.

It reads as if we have had to fund raise in 24 hours to get this treatment arrghhhhhh!

Day 4 or 5 if you count Sunday. No counting as day 4 as I am getting confused!

Well today went well.  We visited the Children's hospital here in Jacksonville to go through Ben's chemo plan.  He is very thrilled that his next cycle of chemo will be as an outpatient.  He will have the proton alongside this.  The proton will be every day for just under an hour and will last just under 6 weeks.  I just hope that I can find my way each day to get him there as these roads here are something else!!

After the hospital visit we had to take a trip AGAIN to Hooters.  Now this was quite cool (yes I am now American) the first time around but I now feel like a frumpy old granny going into these places and being served by a teenager with an amazing body. It actually puts you off eating.  No more Hooters please.  To top it off when we left, Chloe announced that she wanted to be a Hooters Girl.  OMG!!!!

When your child is unwell and they have a good day...don,t make the mistake of saying that we will do anything that you want to do ....or you too could end up in Hooters.!!!

We found the biggest Shopping Mall that I have ever seen in my life.  It is impossible to shop here as it is just too much!  

The days so far are going quickly and when Proton starts I think it will just fly.  Proton is daily at the University of Florida Proton institute, bout 20 mins drive from where we are living.  We get a set appointment each day and are in for about an hour per day.  It is quite a surreal place.  In the entrance hall they have a craft table where all the British people "hang out".  They are all really close and are classed as the Proton family.  When you finish treatment you also have a graduation day!!

The weather here is really pleasant as is our apartment and basically everyone we have met.  I feel very reassured by the Medical care, however the terminology used and the equipment is different.  Today I asked for help with Ben's feeding tube as it is now due a turn and push and pull thingy!  Noone can help as they have never seen one like his.  Just as well I have brought a manual!.  Tomorrows plan is following a step by step guide to gastrostomy care.  Anyone would think I was a nurse!!

We have no plans with the hospitals tomorrow so we are going to watch a Basketball game, which should be fun!.  Ben's words were ...really?  What are you coming too mum??  Not sure whether I am going to cramp his style.!  Anyway, what do you wear for a basketball game?  Something to think about!

Take a look at a couple of snaps of today.  They are probably upside down etc but just turn your PC or phone over and all will be well!

Until tomorrow.  . . . 

Mask fitting ready for proton

This was his practice back home but just the same here, only yellow. He gets to bring it home! He wants to wear it on the plane!!

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Day 3

Day 3 . Today we went to the university of Florida proton therapy institute. It was  amazing if a little daunting.

What service. Meet and greet, everything on time and the most fantastic Dr Danny. 

Funny, clever, honest but yet reassuring. Ben in for a tough ride but I know he will be fine. The side effects will be pretty intense. His skin will blister and his throat will be like having the worst sore throat you can imagine. He won't be able to swallow, not even his own saliva. He will get through it. He is amazing.

Today the professor said cure at least 3 times after calling Bens tumour a weirdo tumour!! Ben thought that was quite hilarious but basically what he meant was the behaviour of this tumour is so odd that it is in his eyes a weirdo! He is a professor and never ever seen such a disease in a child or larynx. We always knew Ben was different!!

Ben had a ct to get him ready and his mask fitted. I wasn't allowed in but I have added a photo of what that's like from his practice run at home. Looks scary but he thinks this bit is quite fun!! 

The whole place was just full of bald and frail people. The entrance hall has a craft table where kids with their bald heads we playing. More like they were on a school trip than fighting for life. Amazing.

I felt like I was in a film. Watching someone else's life and not ours. 

After hospital we recharged with s stroll by the beach. I say stroll but kind of mean shuffle which is bens new walk at the moment!

Next stop for day 4 is oncology appointment to sort chemo plan . Will keep you posted xxxx

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Everyone got up about 4 am! The time difference seems to have played havoc! It is now 1043am here and I am feeling ready for bed!
After what was a long and quite scary trip at times we have settled into our appartment which is fantastic. All new and huge! Ben is going to take some pictures later to post as apparently mine are rubbish. Must show you the washine machine. It is so huge I could sleep in it!
Today we are going to explore a little then an early night ready for Ben's first appointment with his proton consultant tomorrow. He wants chicken wings today to prepare himself.
Hope you are all ok back home.
From us....good job!!!!!!

On our way!

Hi guys!

Hi guys!
Please share this.
We are thankful for your kindness, your generosity and your support.
We will miss you all terribly but from every bad experience good will come.  Your amazing donations to Ben will hopefully mean a more comfortable trip. We also may be able to help others going through the same thing.  For weeks you have all told me to keep strong. I have. But my strength has come from you all.
We thank you and we love you xxxx
Blog details to follow x - http://bencproton.blogspot.co.uk/

 

COYS

Message from Dean

I am totally overwhelmed with your support, 4 once loud mouth dean is lost 4 words, this is something that we as a family didn't sort out, and if I'm honest was slightly embarrassed by it all, but there r no words 2 describe how grateful we r as a family. Ben my son is my world, and like me he has never asked 4 any thing. Like me he is a giver not a taker and at the moment he feels 2 rough 2 take this all in, but when I just told him he could do want he wants with the overwhelming funds he has had donated 2 him, his response was he wants 2 help others in the same boat as him 2 have the best journey posible. Thankyou.

From Olivia O

A night @ Benihana with Friends

Message from Ben

Please take a few minutes to read this. I am not asking you to donate but when you think you are having a bad day and you feel sorry for yourself have a think. Family and friends are far more important than anything else xx.

Its Me

As many of you are now aware our brave beautiful boy has been diagnosed with Rhabdomyosarcoma of the larynx. At 11 years old he has been undergoing regular surgery to continually remove the tumour and extensive chemotherapy. What a journey so far, but it still isnt ending yet. We are travelling out to the U.S on Monday for Proton therapy. Still in hospital at the moment, but he must travel on Monday to get the treatment he needs to be well.

Thank you for all the continued support we have received, he is so strong and continues to smile.

Please help Bens journey and trip in the U.S be as comfortable as it can

Help Me Get There!