So that is the End of Ben's US journey and we are all safe and back at home.
Ben has had his check up with his community nurse today, despite her having to break in to find us as we all crashed and burned with the jet lag!!
And all is looking good.
The last 48 hours have been emotional as expected. Sad to leave our home of the last three months and the sunshine of course!
Sad to say good bye to a place that has provided us with so very much. Provided us with support, joy, and hopefully a cure for Ben.
But, as we left Jacksonville and we remembered the people that we have met on our journey, we knew it was our time.
Our time to get home, to get back to our routine and to get back to our normality. To get back to you.
So as I leave you all now, I am going to attempt something very heroic!i am going to attempt to thank you in person.
One of the reasons I never became famous was because if I win anything then the speech would have been a nightmare. Well that and a lack of talent!!
It is always hard to say thank you to individuals as someone always gets missed out!
For you all, and in case I miss you in person, then this next statement is my safety net!
We thank each and every one of you for everything you have done.
Thank you to our parents.
To my mum
To Tina and Gary for coming to see us and supporting us on our journey. It was fabulous having you around. It was funny, enjoyable and sad at times. We know that it was tough for you all and hope that you have also been able to take something very special with you from sharing this part of the journey in person. We thank you.
To the rest of our family for your ongoing encouragement and support and for looking after Jasmine.
To Gemma, my sister. For always caring and always being available for a late night ( early morning ) FaceTime call.
To Wayne, for holding the fort!
To Sarah and Peter for the loan of their wonderful home. An extra special thank you though to you Sarah for always keeping in touch, always caring. For organising and advising. For having a huge heart.
We thank you all.
To Sam, for the parcel we could never find and for our FaceTime chats. For keeping me on the straight and narrow and for making me laugh.
To Debs for being Debs and for the gardening gesture.
To cousin Nick for listening and being my best friend.
To the Ortons for Ben's special Jessie J event.
To Richard and Penny for the loan of their fabulous home and for their prayers.
To Maddie and Mary Hall for their Catholic Prayers.
To Michael for his Morman prayers.
To Emily and Olivia for their fab cake sales and all the other children at Sherrardswood for their support.
To George, Reece, Antonio, Jack, Hugo, Millie, Brogan and Leighton and Kelly for your messages to Ben.
To Charlie for helping set up the blog.
To Mandy for her constant support and the Spurs event that she organised for Ben.
To Christina for helping with the cars.
To Kinsy bubble and Chris, Lisa, Lisa, Susie, Teresa, Tracey, Helen, Tara, Chris Bone, Vicky M, Lizzy, Kim Mitchell, Nat Nat, sarah and Sara, Curul, Sophie and Nicola. Vanessa for all your messages and John ( for Dean's male bonding time!)
To Katie and Arthur for understanding.
To Olfa for helping sort Ben's phone.
To Patsy and Gemma's friend Michelle and everyone else that had a helping hand in sorting Virgin!
To Richard Perry for pointing out Ben's voice in the first place.
To Mary and Greg. To Earl. For advice, prayers and reassurance. To Helen, Andy and Jack, to the Addleys, the traders, Peter, Siobhan, Mark and Chloe, Halima, Sam, Kirsten and Louis and the gang, Katie and Jasmine, Sophia, the Canadian family, the Prossers, the Sottish Family and all our other proton family, friends and acquaintances.
The the Methodist congregation courtesy of the Bonds for their Critters and Prayers.
To the US staff, Dr Indelicato, Amy, Heather, Kim, Alex, Tori, Cindy. Miss Barbara and Miss Pam. Peaches and Tiffany, Shannon and Geri. Kirsten, Matt, Zac and Rob and all the gang in gantry 1. Enterprise Car rentals, executive Cabs, Corporate Suite Shoppe. To all the staff that came into contact and helped support us.
To Mark, Metta, Adele, Stephen and Sarah. To George and Mr Hartley, Claire Moore, Debbie and the rest of the U.K. Team for everything.
To Claire N for always reading and sending positive vibes.
To my old work colleagues who have been in touch.
To my old work colleagues that never bothered for helping me realise what I am not missing!"
To my current work colleagues for their support and encouragement.
To all that have donated to Ben's US journey.
To the four generous families that anonymously treated us to our meals those nights.
To Joanne in Nemours pharmacy.
To Kim Crawford and Nobili (Sauvignon Blanc!).
To No 15 for the pampering set.
To Busy Bees for all their support. Laura, Amanda,Chelsea, Donna, Gemma, phoebe, Luke's mum, Donna, Clio.
To Jim, Leah, Mrs Freeborn, Claire, Samantha, Mrs Wright, headmaster, Joanne, Mrs Evans.
To Kate Boffey for your ongoing support, encouragement and chuckles.
To Sue and Janet for always being there, even though we have never met!
To all Dean's Facebook friends, some who I have never met and others I haven't seen in years for being with us.
To all our friends, old and new and to all our friends friends who have supported us.
So. Now you know why this was a mission. If I have missed you out, please, it is not personal.
Finally and to conclude.
I began writing this blog because it was a good way to keep those interested updated. It seemed easier that replying to lots of messages.
After a few blogs, it became MY TIME. It was the only thing that I did on my own! Sometimes u would blog in the middle of the night whilst waiting for feeds etc to finish. Lots of times it would take hours to finish as I would stop and start as I needed to attend to other things.
But sometimes it was my release. My way of letting off a bit of steam.
As people started to read it became a buzz. Then people began to share their stories and told me it helped them, so it became my duty.
Towards the end, the need to remember things led it to becoming my diary.
The blog has served many purposes and has been a big part of Ben's Journey.
Thank you from the very bottom of our hearts for being part of this incredible and life changing mission. Thank you for never judging.
Last and very much not least.
Thank you to Dean for making the right decision to stay.
To my darling Chloe. For causing extreme exhaustion but also providing all day entertainment. For being a proper little Madam.
And to you Ben. For being the strong and determined kid you are to have done this. For cuddling me, when you knew I was tired, for shouting at me to bring me back into line. For helping others. And for fighting.
To all of you that have read and kept up to date. Thank you!
Keep doin wot yourrrrrr doin!
Goodnight y'aaalllll
From the Carters with love xxxx
Sent from my iPhone
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Wednesday 27 April 2016
Sunday 24 April 2016
40 hours to go!
When you are nursing people it is important, really important for you to build an immediate rapport. You need your patient to trust you 100 percent. It helps them. They feel safe. Well, safer anyway.
Some people you build better relationships with. Some you never forget for one reason or another. Some change you. Some you change. Mostly and hopefully for the better.
For some, it is more difficult. Like in life, generally.
Sometimes you just meet people that you will never gel with, that you will never feel a special connection with, but your professionalism and humanitarian approach sees the relationship do what it needs to.
In life we have many choices, we choose our friends, our paths, our direction.
When you are a nurse, you can't choose your patient. When you are a patient, you have some degree of choice. Unless that nurse happens to be your mother! Or your father! Or in fact your sister!!
My mum believes that before life your are given a choice. This is your path. This is what you get. Do you want it, or not?
I think that sometimes this helps the mind deal with the fact that sometimes life is tough but in the whole, I can't really believe that given a choice, some people would choose the hand they are given.
Ben might have chosen his though. Especially if he could have seen that by this point he would feel like he does today. His eyes are so bright. His skin has lost the grey pigmentation. He is no longer as rude or vile or sad. He is today better than I can remember him being. Almost EVER.
You see, you forget.
When your child is slightly improved it is a huge hurdle. They are well. But they aren't, not really. You just want them to be.
But when they are sick, so very very poorly, you forget.
You forget what it was like to see them running around, laughing and playing. You just will for them to do more, a little bit more than just exist.
And today he does.
So, our journey here is ending, and in fact the whole ordeal is nearing its course. And now, for the first time, we have established our nurse/patient rapport.
Ben and me.
Now he trusts me. He trusts that what I suggest will help. No arguing, no fuss.
He just knows. He knows that I know.
I know why, why he has decided to trust me now. You can't tell people to trust you. You have to earn it. I reckon I have. There have been times where I have nursed this kid night and day. You do, of course. It is your child. Unconditional love.
Last night we visited one of our new friends who is in hospital. She has been in hospital most of her time here. She has got 10 more proton sessions left and 2 chemo sessions. She is poorly. Very poorly.
She is due to fly home on May 6th. She can't go, not yet.
Her treatment keeps getting postponed because she is unwell. Her journey is long , it is miserable. It is draining.
For the first time since this began for us we have been able to give just a little back. Not a lot. Just a little.
Our presence was enough to lift her and her mums spirits, just a little bit and we were able to take a few things too. Little things.
In Chloe's words "special things to make her happy." I hope we did.
You see, when you are unwell, you can't be bothered to listen. You are afraid. You hurt. Everywhere. We can't understand it, not really.
But these guys do. Those going through it, get it. They understand each other. They share common ground.
You could tell when she saw Ben, that that was who she wanted to see.
Not to listen to me and my encouragement,or Dean and his sympathetic ear.
She needed to see the light at the end of her tunnel. That was Ben.
Whilst her neck was breaking down terribly and her swallowing near to non existent. Her pain, her fever, her depression. She needed to see someone who had done it. And for that moment, it was Ben.
He showed off his neck with no marks or scars. He told her how he was still fed through his peg but was eating small amounts and he told her she could do it. She could make it.
She will.
She has to, she has no choice.
So when we left there, Ben knew.
He knew, how bad it could have been. He could see how far he has come and he knew that things could have been so much worse. He is glad he let me nurse him.
Today, he feels lucky. We all do.
So as we get closer and closer to seeing you, our emotions are swinging again. Ben goes from desperate to see his friends and get back to school to wanting to stay here longer.
He doesn't really want to stay, not really, but as he feels better each day, and we realise how much more we could do here, we become sad at our imminent departure.
Dean has wanted to leave from about week 2! Mainly to get back to work as well as to distance himself from the immense responsibility that this journey brings.
I understand that.
Chloe misses her friends. She talks about home every day.
Me? Well, I don't know really. I didn't want to come. The US has never appealed to me. I don't like distance and I certainly don't like change.
But I have done it and enjoyed the good bits, and dealt with the not so good. But it has changed the way I think. If someone told me tomorrow that my next mission was to the North Pole to get Ben well, then my ski gloves would replace the yellow swim suit!
I am settled here in my routine, with my little family. We are all safe, all together. But it isn't real is it? Not really.
I have started to dither. Will I be ready? Can I get packed in time? Will we make our connection ?
But I don't care, not really.
Today I had to pack and get organised. It is amazing how much rubbish you can accumulate in just short of three months! We then ran out of space. I went to buy a new suitcase and then we took a drive.
Some new friends, a while ago had recommended a nice seafood and exotic grill.
It was brilliant.
Set in a creek which led to St John's River.
Idyllic.
Turtles swimming, bull frogs croaking and alligators preying. The kids loved it.
We had a great meal which was topped off again, by a generous and anonymous stranger paying our bill!
You will remember that this has happened a few times now. We never know who it is. They are not part of the starers. They don't make themselves known.
They are just generous and kind.
We have no idea who you are, but we thank you.
So, Ben can't look quite as well as I think he does can he?
If he did, then would people feel for us in the same way?
I assume it's because they know he has cancer?
Or maybe they hear our accents and just love the British people!
You can tell yourself whatever you want and whatever makes it easier for you is just fine.
So 40 hours to go now until we leave. I often think about the things I will miss here in Jacksonville.
The sunshine, the people, the ocean, exploring, new things, new sights, new activities, fresh air, the fast cycle of the washing machine, the supermarket and its neatness, kind and helpful staff, customer services in general, the dollar store, Amelia island, snow crab, less cleaning, spending time with the children.
I often think about the things I won't miss!
Spending time with the children, living in a cramped apartment with nothing to clean, high cholesterol due to excessive crab eating, spending on rubbish at the dollar store, everyone wishing me a nice day, feeling the need to explore things and go out all the time, excessive sunshine!
And of course I have a lot to look forward to.
Seeing y'all, eating Jacobs cream crackers, dieting, my bed, my pug, work, sleeping without 4 in a bed, gravy, cold tiles on my feet, not being hot, having my hair done, watching Emmerdale, John Lewis, my car, walking, the air, the crisp mornings, talking on the telephone!
The list isn't exhaustive but it gives you a taster!
So we are counting down the hours now. There is nothing left to achieve her. Our new challenges and goals await us at home.
So as we get closer to seeing you we continue to be grateful for your love and support.
You know we couldn't have done this without you.
So from the Carters goodnight. We are coming home soon xx
Sent from my iPhone
Some people you build better relationships with. Some you never forget for one reason or another. Some change you. Some you change. Mostly and hopefully for the better.
For some, it is more difficult. Like in life, generally.
Sometimes you just meet people that you will never gel with, that you will never feel a special connection with, but your professionalism and humanitarian approach sees the relationship do what it needs to.
In life we have many choices, we choose our friends, our paths, our direction.
When you are a nurse, you can't choose your patient. When you are a patient, you have some degree of choice. Unless that nurse happens to be your mother! Or your father! Or in fact your sister!!
My mum believes that before life your are given a choice. This is your path. This is what you get. Do you want it, or not?
I think that sometimes this helps the mind deal with the fact that sometimes life is tough but in the whole, I can't really believe that given a choice, some people would choose the hand they are given.
Ben might have chosen his though. Especially if he could have seen that by this point he would feel like he does today. His eyes are so bright. His skin has lost the grey pigmentation. He is no longer as rude or vile or sad. He is today better than I can remember him being. Almost EVER.
You see, you forget.
When your child is slightly improved it is a huge hurdle. They are well. But they aren't, not really. You just want them to be.
But when they are sick, so very very poorly, you forget.
You forget what it was like to see them running around, laughing and playing. You just will for them to do more, a little bit more than just exist.
And today he does.
So, our journey here is ending, and in fact the whole ordeal is nearing its course. And now, for the first time, we have established our nurse/patient rapport.
Ben and me.
Now he trusts me. He trusts that what I suggest will help. No arguing, no fuss.
He just knows. He knows that I know.
I know why, why he has decided to trust me now. You can't tell people to trust you. You have to earn it. I reckon I have. There have been times where I have nursed this kid night and day. You do, of course. It is your child. Unconditional love.
Last night we visited one of our new friends who is in hospital. She has been in hospital most of her time here. She has got 10 more proton sessions left and 2 chemo sessions. She is poorly. Very poorly.
She is due to fly home on May 6th. She can't go, not yet.
Her treatment keeps getting postponed because she is unwell. Her journey is long , it is miserable. It is draining.
For the first time since this began for us we have been able to give just a little back. Not a lot. Just a little.
Our presence was enough to lift her and her mums spirits, just a little bit and we were able to take a few things too. Little things.
In Chloe's words "special things to make her happy." I hope we did.
You see, when you are unwell, you can't be bothered to listen. You are afraid. You hurt. Everywhere. We can't understand it, not really.
But these guys do. Those going through it, get it. They understand each other. They share common ground.
You could tell when she saw Ben, that that was who she wanted to see.
Not to listen to me and my encouragement,or Dean and his sympathetic ear.
She needed to see the light at the end of her tunnel. That was Ben.
Whilst her neck was breaking down terribly and her swallowing near to non existent. Her pain, her fever, her depression. She needed to see someone who had done it. And for that moment, it was Ben.
He showed off his neck with no marks or scars. He told her how he was still fed through his peg but was eating small amounts and he told her she could do it. She could make it.
She will.
She has to, she has no choice.
So when we left there, Ben knew.
He knew, how bad it could have been. He could see how far he has come and he knew that things could have been so much worse. He is glad he let me nurse him.
Today, he feels lucky. We all do.
So as we get closer and closer to seeing you, our emotions are swinging again. Ben goes from desperate to see his friends and get back to school to wanting to stay here longer.
He doesn't really want to stay, not really, but as he feels better each day, and we realise how much more we could do here, we become sad at our imminent departure.
Dean has wanted to leave from about week 2! Mainly to get back to work as well as to distance himself from the immense responsibility that this journey brings.
I understand that.
Chloe misses her friends. She talks about home every day.
Me? Well, I don't know really. I didn't want to come. The US has never appealed to me. I don't like distance and I certainly don't like change.
But I have done it and enjoyed the good bits, and dealt with the not so good. But it has changed the way I think. If someone told me tomorrow that my next mission was to the North Pole to get Ben well, then my ski gloves would replace the yellow swim suit!
I am settled here in my routine, with my little family. We are all safe, all together. But it isn't real is it? Not really.
I have started to dither. Will I be ready? Can I get packed in time? Will we make our connection ?
But I don't care, not really.
Today I had to pack and get organised. It is amazing how much rubbish you can accumulate in just short of three months! We then ran out of space. I went to buy a new suitcase and then we took a drive.
Some new friends, a while ago had recommended a nice seafood and exotic grill.
It was brilliant.
Set in a creek which led to St John's River.
Idyllic.
Turtles swimming, bull frogs croaking and alligators preying. The kids loved it.
We had a great meal which was topped off again, by a generous and anonymous stranger paying our bill!
You will remember that this has happened a few times now. We never know who it is. They are not part of the starers. They don't make themselves known.
They are just generous and kind.
We have no idea who you are, but we thank you.
So, Ben can't look quite as well as I think he does can he?
If he did, then would people feel for us in the same way?
I assume it's because they know he has cancer?
Or maybe they hear our accents and just love the British people!
You can tell yourself whatever you want and whatever makes it easier for you is just fine.
So 40 hours to go now until we leave. I often think about the things I will miss here in Jacksonville.
The sunshine, the people, the ocean, exploring, new things, new sights, new activities, fresh air, the fast cycle of the washing machine, the supermarket and its neatness, kind and helpful staff, customer services in general, the dollar store, Amelia island, snow crab, less cleaning, spending time with the children.
I often think about the things I won't miss!
Spending time with the children, living in a cramped apartment with nothing to clean, high cholesterol due to excessive crab eating, spending on rubbish at the dollar store, everyone wishing me a nice day, feeling the need to explore things and go out all the time, excessive sunshine!
And of course I have a lot to look forward to.
Seeing y'all, eating Jacobs cream crackers, dieting, my bed, my pug, work, sleeping without 4 in a bed, gravy, cold tiles on my feet, not being hot, having my hair done, watching Emmerdale, John Lewis, my car, walking, the air, the crisp mornings, talking on the telephone!
The list isn't exhaustive but it gives you a taster!
So we are counting down the hours now. There is nothing left to achieve her. Our new challenges and goals await us at home.
So as we get closer to seeing you we continue to be grateful for your love and support.
You know we couldn't have done this without you.
So from the Carters goodnight. We are coming home soon xx
Sent from my iPhone
Wednesday 20 April 2016
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!
Sent from my iPhone
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!
Sent from my iPhone
Saturday 16 April 2016
Friday 15 April 2016
Day 51/52
The day we were leaving home for here my sister and her family came to see us all.
They brought gifts and they specifically brought Ben a Saint Christopher.
Love
Safe
Journey
Is the inscription. He put it straight on. It was symbolic at the start of the journey. It reminded us of our family, of my sister and brother in law and of our beautiful nephews.
Who would have thought that it's meaning could change.?
To symbolise achievement and the final part of our journey here?
It did. It has.
Ben wore that St Christopher every day. I took it off him just as he walked into proton and put it straight back on afterwards. Every day. Until 3 weeks ago.
He neck became too sore to wear it and it has since been placed on his bedside table.
Just waiting, until it has been the right time to put it back on. Waiting for him to heal.
Tonight he is wearing it again. Tonight his neck looks normal. It has healed. It is amazing.
So with the St Christopher back around his neck, we move forwards again.
We had a minor set back today and spent some time back in hospital as Ben spiked a temperature. We don't know why this keeps happening but it seems to be under control.
Every day is different. Some days he drinks and tries to eat, like yesterday. Others he doesn't, like today.
Each day is a new day filled with new memories as well as new symptoms. But we carry on. We get closer to the finish line. We are very nearly there. Very nearly home. We have very nearly done it!
We have settled well here. We have enjoyed the good parts, worried and fretted over the bad parts but now we are ready. Ready to come back. To come home. Ready to finish this nightmare and to live our lives. We are exhausted. Drained. We are done.
For lots of children who come here for treatment, the journey is different. If they don't have a central line then they can swim. If they aren't having chemo then they don't need the regular hospital visits. If their cancer isn't in their throats then they can eat.
Ben has all of the above so it is a tough ride for him. But he gets by. He rarely moans.
Ok, his attitude stinks. His favourite two words are "shut up" and he is tired. Very very tired.
But wouldn't you be?
His strength never ceases to amaze me. His clever and controlled personality never goes away. Even when he feels so bad, worse than I could ever imagine. The questions he asks the medical teams, with such proficiency and maturity leave me astounded. He is in control. Of what he can be, anyway.
I love that boy with everything I have. If I could take it all away tomorrow, of course I would. We all would.
But it has changed him.
He has matured.
He has become so very independent, but so very very dependent in other ways.
I am his mum. His friend. His nurse. His punch bag. His reassurance. His major annoyance!
That is me. Ben's mum.
My mother and father in law go home on Friday. The last fortnight has flown by.
It will be strange when they go.
It has been an odd couple of weeks. We go from having a plan, to aborting the plan due to finding another medical complication that we have no choice but to address. We do hospital visits, plus shopping, plus watching "The Walking Dead" like it is going out of fashion. Goodness knows how many episodes we have done, but mainly at least 3 per night!
Who needs Jo Frost to sort out their kids sleeping patterns?
The Walking Dead has been our evening saviour. We put it on. Chloe dives into bed.
She couldn't watch that. But she doesn't want to. Being asleep means she gets to miss it! I don't even have to ask her. That TV comes on and off she goes!
We have decided that when we get home we will announce at bed time that The Walking Dead is about to come on!!
No more troubled bedtimes!!
You see. There are loads of positive things about being here!
I do love to see the bond that my father in law and Ben have. It is so touching. He must ask him at least 10 times per day who his favourite grandson is. Ben replies. Me.
He only has one!!
But he watches, my father in law. He is interested and he firms his own opinions. He protects Ben. From us!! I push, we push, my father in law reigns us in!
When I watch them together, I wonder. Was he always like that? Was he just a great daddy? Is it now he is older that he has become so fun. Tolerant. Protective?
I reckon he was always like that.
His boys are lucky. We are lucky.
Don't get me wrong. He is not Percy Perfect!
There are many things he does that make you cringe! That is my mother in laws story to tell. So I will leave it there!
Do you remember our new friends? They were part of the late night proton crew? The market trader, so loud and brash.
He has crashed. Badly.
He is no longer the same guy. He gets it now. He is petrified. Bored. Fed up.
I wish we could help. But the problem is, you have to fend for yourselves. There is not enough reserve right now to scoop up everyone. It sounds selfish.
It is nature.
Survival of the fittest.
I keep in touch with some of our new friends, despite finishing at proton. It is still good to talk to someone who gets it, who really understands it.
Dr Dreamy and nurse Drippy are figures of the past now. My crush has resolved and my desire for his reassurance is over.
We fend for ourselves now.
Ben has tolerated his treatment better than we or the healthcare professionals could imagine. But that wasn't/isn't a fluke. That is determination on all parts to get through this. It isn't a miracle or a prayer, I don't think but a total focus on wellbeing.
Sure that all the other things have helped too and I don't dismiss any of it. But it is a combination, a multitude of things that have got us here.
But if my prayers are answered tonight. I expect a total recovery. No hiccups now. No setbacks. You have tried him out. You can see his Strength. His will to live.
He needs a break now. He has done his time.
We are going on holiday on Sunday. We are spending 4 days in Clearwater. The last leg of our journey.
It is our recuperation. Ben's respite.
I am packed already and really looking forward to a hotel break. Someone else to care and cook for us. I am hoping the kids meet other children and that Dean and I get 10 minutes to chat, to reflect, to plan.
I have been with Dean every day since 15th February but I miss him.
I miss a chat about our day. I miss arguing about something pointless. I miss waiting for him to come home or wondering what he is doing.
It sounds strange.
You need your time apart to appreciate your time together.
The same goes for the kids!
When your child has cancer you can only think about the here and now. But I do sit and think, about how his life is going to pan out. It will not be like the other Children's. Will it?
You are told to join this support group or that one, and on the whole they are great.
But the problem is, that at some time, the story, the journey won't have a happy ending.
In the last two weeks, two children have died. One finished proton on 30th January. Just two weeks before we came. We hear that he was inspirational. We hear that he was religious. We hear that he was good.
But he died, taken by this brutal illness. A life cut short.
But that isn't us. Is it?
He had cancer diagnosed when he was 6. He died at 17. The odds were never good.
Ben's are though, Ben will beat this. There is no choice. He has to.
Another little girl, 9 years old. Taken from her family far too soon. But that isn't us. That's not how this ends for us. I know that.
Finishing proton has been brilliant but you will notice that I rarely meet new friends now. I have no network any more. No new stories to share. But that was to be. We are ex protonites now.
We have done it.
The psychology of this journey is very interesting. I am no way unique in my feelings. We all seem to be the same.
Petrified to come here.
Grateful for the opportunity.
Desiring to be here forever.
Adrenalin junkies completing treatment.
Relieved when it is over.
And then ready. Ready to come back. Ready to be us again. Ready to see you.
So as another chapter if this vile but wonderful journey ends, a new and exciting one opens.
We come home to summers approach and have so much to look forward to and enjoy.
We will leave this place and this life behind with fond memories but with the realisation of how unwell Ben had been.
Every day has been a struggle of emotions and with a need to dig deep. So deep sometimes, to find that strength you need to get you there. We have done it.
11 days to go now.
My bed.
Jacobs crackers.
My own house smell.
My puppy.
My job.
My friends.
Driving.
Routine.
We are coming home.
So from the Carters in the final leg of the tour. Goodnight. X
Sent from my iPhone
They brought gifts and they specifically brought Ben a Saint Christopher.
Love
Safe
Journey
Is the inscription. He put it straight on. It was symbolic at the start of the journey. It reminded us of our family, of my sister and brother in law and of our beautiful nephews.
Who would have thought that it's meaning could change.?
To symbolise achievement and the final part of our journey here?
It did. It has.
Ben wore that St Christopher every day. I took it off him just as he walked into proton and put it straight back on afterwards. Every day. Until 3 weeks ago.
He neck became too sore to wear it and it has since been placed on his bedside table.
Just waiting, until it has been the right time to put it back on. Waiting for him to heal.
Tonight he is wearing it again. Tonight his neck looks normal. It has healed. It is amazing.
So with the St Christopher back around his neck, we move forwards again.
We had a minor set back today and spent some time back in hospital as Ben spiked a temperature. We don't know why this keeps happening but it seems to be under control.
Every day is different. Some days he drinks and tries to eat, like yesterday. Others he doesn't, like today.
Each day is a new day filled with new memories as well as new symptoms. But we carry on. We get closer to the finish line. We are very nearly there. Very nearly home. We have very nearly done it!
We have settled well here. We have enjoyed the good parts, worried and fretted over the bad parts but now we are ready. Ready to come back. To come home. Ready to finish this nightmare and to live our lives. We are exhausted. Drained. We are done.
For lots of children who come here for treatment, the journey is different. If they don't have a central line then they can swim. If they aren't having chemo then they don't need the regular hospital visits. If their cancer isn't in their throats then they can eat.
Ben has all of the above so it is a tough ride for him. But he gets by. He rarely moans.
Ok, his attitude stinks. His favourite two words are "shut up" and he is tired. Very very tired.
But wouldn't you be?
His strength never ceases to amaze me. His clever and controlled personality never goes away. Even when he feels so bad, worse than I could ever imagine. The questions he asks the medical teams, with such proficiency and maturity leave me astounded. He is in control. Of what he can be, anyway.
I love that boy with everything I have. If I could take it all away tomorrow, of course I would. We all would.
But it has changed him.
He has matured.
He has become so very independent, but so very very dependent in other ways.
I am his mum. His friend. His nurse. His punch bag. His reassurance. His major annoyance!
That is me. Ben's mum.
My mother and father in law go home on Friday. The last fortnight has flown by.
It will be strange when they go.
It has been an odd couple of weeks. We go from having a plan, to aborting the plan due to finding another medical complication that we have no choice but to address. We do hospital visits, plus shopping, plus watching "The Walking Dead" like it is going out of fashion. Goodness knows how many episodes we have done, but mainly at least 3 per night!
Who needs Jo Frost to sort out their kids sleeping patterns?
The Walking Dead has been our evening saviour. We put it on. Chloe dives into bed.
She couldn't watch that. But she doesn't want to. Being asleep means she gets to miss it! I don't even have to ask her. That TV comes on and off she goes!
We have decided that when we get home we will announce at bed time that The Walking Dead is about to come on!!
No more troubled bedtimes!!
You see. There are loads of positive things about being here!
I do love to see the bond that my father in law and Ben have. It is so touching. He must ask him at least 10 times per day who his favourite grandson is. Ben replies. Me.
He only has one!!
But he watches, my father in law. He is interested and he firms his own opinions. He protects Ben. From us!! I push, we push, my father in law reigns us in!
When I watch them together, I wonder. Was he always like that? Was he just a great daddy? Is it now he is older that he has become so fun. Tolerant. Protective?
I reckon he was always like that.
His boys are lucky. We are lucky.
Don't get me wrong. He is not Percy Perfect!
There are many things he does that make you cringe! That is my mother in laws story to tell. So I will leave it there!
Do you remember our new friends? They were part of the late night proton crew? The market trader, so loud and brash.
He has crashed. Badly.
He is no longer the same guy. He gets it now. He is petrified. Bored. Fed up.
I wish we could help. But the problem is, you have to fend for yourselves. There is not enough reserve right now to scoop up everyone. It sounds selfish.
It is nature.
Survival of the fittest.
I keep in touch with some of our new friends, despite finishing at proton. It is still good to talk to someone who gets it, who really understands it.
Dr Dreamy and nurse Drippy are figures of the past now. My crush has resolved and my desire for his reassurance is over.
We fend for ourselves now.
Ben has tolerated his treatment better than we or the healthcare professionals could imagine. But that wasn't/isn't a fluke. That is determination on all parts to get through this. It isn't a miracle or a prayer, I don't think but a total focus on wellbeing.
Sure that all the other things have helped too and I don't dismiss any of it. But it is a combination, a multitude of things that have got us here.
But if my prayers are answered tonight. I expect a total recovery. No hiccups now. No setbacks. You have tried him out. You can see his Strength. His will to live.
He needs a break now. He has done his time.
We are going on holiday on Sunday. We are spending 4 days in Clearwater. The last leg of our journey.
It is our recuperation. Ben's respite.
I am packed already and really looking forward to a hotel break. Someone else to care and cook for us. I am hoping the kids meet other children and that Dean and I get 10 minutes to chat, to reflect, to plan.
I have been with Dean every day since 15th February but I miss him.
I miss a chat about our day. I miss arguing about something pointless. I miss waiting for him to come home or wondering what he is doing.
It sounds strange.
You need your time apart to appreciate your time together.
The same goes for the kids!
When your child has cancer you can only think about the here and now. But I do sit and think, about how his life is going to pan out. It will not be like the other Children's. Will it?
You are told to join this support group or that one, and on the whole they are great.
But the problem is, that at some time, the story, the journey won't have a happy ending.
In the last two weeks, two children have died. One finished proton on 30th January. Just two weeks before we came. We hear that he was inspirational. We hear that he was religious. We hear that he was good.
But he died, taken by this brutal illness. A life cut short.
But that isn't us. Is it?
He had cancer diagnosed when he was 6. He died at 17. The odds were never good.
Ben's are though, Ben will beat this. There is no choice. He has to.
Another little girl, 9 years old. Taken from her family far too soon. But that isn't us. That's not how this ends for us. I know that.
Finishing proton has been brilliant but you will notice that I rarely meet new friends now. I have no network any more. No new stories to share. But that was to be. We are ex protonites now.
We have done it.
The psychology of this journey is very interesting. I am no way unique in my feelings. We all seem to be the same.
Petrified to come here.
Grateful for the opportunity.
Desiring to be here forever.
Adrenalin junkies completing treatment.
Relieved when it is over.
And then ready. Ready to come back. Ready to be us again. Ready to see you.
So as another chapter if this vile but wonderful journey ends, a new and exciting one opens.
We come home to summers approach and have so much to look forward to and enjoy.
We will leave this place and this life behind with fond memories but with the realisation of how unwell Ben had been.
Every day has been a struggle of emotions and with a need to dig deep. So deep sometimes, to find that strength you need to get you there. We have done it.
11 days to go now.
My bed.
Jacobs crackers.
My own house smell.
My puppy.
My job.
My friends.
Driving.
Routine.
We are coming home.
So from the Carters in the final leg of the tour. Goodnight. X
Sent from my iPhone
Monday 11 April 2016
Day 49/50
We have officially had a weekend away.
No blood tests.
No chemotherapy.
No proton.
Away from our two bedroomed apartment and away from Jacksonville. Our safety net. Our saviour.
Our home over the last 8 weeks.
We have had space, no time constraints or pressures. We have had fun. We have rested.
Leaving Jacksonville for here, Orlando, was a bit of a mission. We have a huge SUV (check me out!) but still we were full. Full of machines, equipment, medication and feeds. Everything to remember. Nothing could be forgotten. It was like packing when you have a newborn, only more challenging. Nappies you can get anywhere, morphine is slightly more tricky to find!
But, I remembered it.
I remembered everything.
Except for my clothes.
Everything I needed is still hanging up in my closet! (Yep, fully American now!!)
Now, that may have bothered me 6 months ago. Today, I couldn't care less. I actually found it quite funny!
I was to spend my time away wearing only a yellow swimming costume, Ben's flip flops and a suction machine!
Who cares?
Well I didn't.
Not until the phone call came from some lovely friends who are here on holiday.
They had arranged such a special evening for Ben.
We were to go to Universal Studios where he would meet Jessie J and have VIP tickets to go backstage. We would get to watch the concert. We could use the park.
Amazing, but Oh my flipping goodness!
Yellow swimming costume was not going to work for such an event.
If you see any of the great photos that have been posted, please do not judge me!
No, I didn't go in the swimming costume!
My outfit was a quick pick up from a local supermarket, just to get by.
Now when you are a size 10, cheap and nasty or even a bin liner looks good. But at a size, slightly larger than a ten, but not that much larger in American sizes!! does not make you look your best.
It was fine though, I was covered up at least!
Ben's mood went up and down. He went from feeling rubbish to nervous, to really excited.
He does that a lot now. His personality changes within minutes, seconds even.
I don't know why. I will work it out though. I generally do. It will take me some time though.
We weren't sure we would make it, as he wasn't that great really.
He was desperate though. Desperate to see his friends.
Totally consumed with exhaustion. Pale and fed up though.
It was such a shame as the previous day he had been brilliant. You can never predict this journey you see, the cruel twists and turns. It is always there. Trying to catch you off guard. Trying to beat you. It won't though. It won't beat Ben. It won't beat us.
The thought of seeing his school friends was both exciting and scary.
He did it! He dressed the part, following a trip to the Converse outlet, and for the most, he was just a normal kid.
He loved it.
Meeting Jessie J.
Having her dedicate a song to him. To call him an inspiration. It was a special moment and one we won't forget.
To our lovely friends. We thank you.
Ben got tired though. He got a bit weepy. His pain raised its head. But he did well, very well.
It is strange to see people who you have known for a while but who haven't seen Ben for some time.
I wanted him to look normal. I wanted them to see him well.
I did seek reassurance, I know I did.
I asked, outright. How do you think he looks?
Better than before we came, I was told, although counteracted with the fact that they had not really seen much of him. But he looked better, my friend thought. He actually looked better.
That was good enough for me.
You see, cancer strips your life and soul away. It steals your energy, your desire and your motivation. It's hold scares you and consumes you.
But you have to battle through. You can't let it take you. You can't let it sap everything you are and want to be.
What would be the point in the fight if you just gave in when it got tough? There wouldn't be a point and you have to keep telling yourself that.
Mind over matter
Mind over matter.
It was a lovely sight, last night, when Ben fell asleep at the table. It was lovely, as the other children did the same.
It looked normal. 4 tired children. Asleep in their food!
But when there is just one, just yours that has fallen asleep coupled with the tell telling sign of baldness and weakness, people look. People stare. People pity you.
Not last night though.
They were all the same.
Four tired kids. It was great. It was normal!
So yet another incredible memory has been created on this journey. And more people playing and being a part of it. For just a minute, feeling it. Or some of it anyway.
Our countdown to coming home has begun.
For the first time we have moved away from saying that we have been here for so many weeks now to, we have only 2 weeks to go. Two weeks until we come home. Too our lives, to you.
Can you believe how fast it has gone? How the time has flown by?
It feels like the normal holiday countdown now, well almost.
You know, where each day flys' by, and you seem to loose hours, days or weeks even.
We are coming home. We are almost ready. We have no choice.
We have a final chemo hurdle to get through next week. That is it then for here. Treatment in the US complete. We are done. We made it.
I would like to finish all of Ben's treatment here. I have told you that before. I want to bring him home well, finished. A fresh start.
We could. We could pay for it, for the rest of his treatment.
I have no idea how much it would cost. But we could try.
We won't.
He wants to come home.
He wants to move on.
Who would have ever imagined that this would be something that we would ever experience. Certainly not me.
Even at the first radiotherapy consultation that I went to, I thought it was some sort of strange wind up. Maybe I was imagining what I was being told because of a sort of stress like reaction.
I didn't even know he needed radiotherapy. No one had even mentioned it. It was benign, kind of? Wasn't it?
Well no. It was malignant. It is malignant. But that was ok. It hadn't spread. Why did he need radiotherapy?
That was where my head was then. I couldn't even contemplate conventional radiotherapy yet alone this. Proton? Seriously? What the heck?
I had only ever heard of one person having proton, and they were kidnapped to have it! I had never been interested in researching it. After all, I had given up cancer nursing! What an ironic twist life throws.
This wasn't real. Not in our world.
Being offered a treatment that doesn't even exist in the uk? Never was I ever thinking of this possibility.
Never to be sent to the US. It hadn't crossed my mind for even a second.
I have never ever wanted to visit here, America. I have always managed to find a suitable excuse when Dean has suggested it in the past.
Ben was too little.
We were trying for a baby.
I was pregnant.
We were trying for a baby.
I was pregnant.
We were trying for a baby.
I was pregnant.
We had just had a baby.
Chloe was too little.
I was too tired as Chloe was too little!
Chloe was too naughty.
Chloe is too naughty.
It was too far.
It was too expensive.
We were moving.
Let's wait until next year.
But I love it. I love Jacksonville. I could move to Jacksonville tomorrow.
Not to Orlando, but to Jacksonville, yes.
Have I been sucked in? Like the other families who say the same? Sucked in by the security? The care? The thought that actually your child is benefitting and getting well?
Maybe.
But I don't think so.
I have fallen in love with a beautiful and diverse city. With friendly, kind and inspiring people. With simplicity. With charm.
A place where you can do, see, feel and experience exactly what you want to.
But it isn't real. Not really. Is it?
Sunshine every day, nearly.
No work or school.
No post to open!
No nothing. Except for this.
Getting well, lovely places to recover. The ocean! (See, I told you. Get me!).
It isn't real. It is just a real part of our long journey. The best is yet to come. Isn't it?
My Mother and Father in law go home on Friday. If has gone very fast. They have been a great help and support. My father in law doesn't sit down. He is constantly looking for the next joke to be had or the next person to talk to. He loves it when you can't find a cork screw or the wifi goes down. Why?
So he can nip and find someone to ask, to tell them about it. To chat to. He loves putting the trash (bins!) out. You may bump into the bin man for a chat! He loves walking to the petrol garage, which is more like a supermarket. For a chat.
My mother in law goes with the flow. Easy going and patient. So flipping patient. I am sure that inside she really wants to scream, go crazy. Tell Chloe that there are no more flipping M and Ms. Tell My father in law to leave her alone as she doesn't want to go in the pool. Tell Dean.... well just tell Dean, and tell me. Tell me too.
Tell me that the answer will never be found at the bottom of a wine glass. She is right.
Mothers know best!
She will never say it though. She keeps it inside.
We all do. We all keep a lot inside these days.
Living together for this many weeks. No outlet. No escape. No anything except for this. It is tough. It is the hardest bit.
My identity has gone. I am Ben's mummy. Carer, nurse, worrier.
I am no longer selfish or too busy. He is my responsibility. I can, I will make him better.
I am Chloe's mummy. I listen and ultimately give in to her prolonged moaning. I can make up games and I can try to occupy her. I am better than any party planner!
I am Dean's wife. I listen to him, I listen to him again. I listen some more, I carry on listening.
This is me right now.
Prepare yourselves for the onslaught! I have not been out. Not out out anyway. I haven't had a chat with you. I haven't cried.
Prepare yourselves. She is coming home! We are coming home!
Since finishing proton, I miss our new friends. I miss making new friends. Each day was different. Each day was special.
I wonder what people are doing now that they have rung the bell. I wonder how our very poorly friend is that hadn't eaten for 10 days and looked so unwell. I will go in to see her next week. I need to know she is ok.
How are they all?
How are they feeling?
I can't ask them any more. Not like I did. It feels strange.
We miss them.
So really we have been swept along on this journey. We have experienced exactly the same emotions that the other protonites have.
What seemed odd at week one, is now the normal for us.
And we have done, just as the others have. We have created our own memories and had our own special journey.
It will never be forgotten. Not ever.
So, I came here the person I was and I leave soon, the person I am.
I haven't made as many changes as I planned.
I was coming home skinny. I am fatter than I have ever been.
All my vices were to be banished. They are worse! (But secret!).
I was coming home fit. I am the oopposite.
I was coming home sad.
I am the opposite.
I am thankful. Happy. Encouraged.
I am strong.
I have built a strength over these last two months that no one will ever believe.
What doesn't kill you makes you stronger?
My new friend, the one I chatted to on an evening, before she went home. She left an important impression.
She has 3 children. She is in a relationship but split from her kids daddy. She suffers anxiety. She calls it anxiety Annie.
I won't tell her story. It is hers to tell.
But I leave you with a thought.
Severe anxiety.
Taking your eldest child for proton. Because you have to.
Leaving you youngest children behind. Because you have to.
Doing this journey to get your daughter well.
Because you have to.
Knowing there are other big issues to cope with when you get home.
But you have to.
What a woman? What a person?
Her daughter will do well, she will because she is strong. She is strong because her mummy is too.
I think about those guys every day, often.
Anxiety Annie? It is really your time to leave now.
I didn't even know them, not really.
Doesn't it put things into perspective?
My Jacobs cream cracker friend is having fun. Always doing great stuff and seeing the sights.
She struggles like me. Her son won't/can't eat. We share the anxiety. Our boys are thin. They need to have nourishment to be well. That is our control.
That is our boys control too though and that is a problem. They aren't anorexic in the physiological term. But they control it. They are in charge.
That is unless they have a tube of course!!
And our boys do. We are lucky!
In a different place, we would be out,having fun. Carefree.
But not now.
That wasn't why we met.
We met for a very special reason.
We feel it.
We understand it.
So we move on, again. Another part of the journey complete.
Tonight/this morning I /we leave you.
Be happy. Be grateful. Don't be scared.
You will get there. We all will.
Whatever you are struggling with or fighting against, or for.
You are special.
We all are.
xx
From the Carters. Goodnight. Xx
Sent from my iPhone
No blood tests.
No chemotherapy.
No proton.
Away from our two bedroomed apartment and away from Jacksonville. Our safety net. Our saviour.
Our home over the last 8 weeks.
We have had space, no time constraints or pressures. We have had fun. We have rested.
Leaving Jacksonville for here, Orlando, was a bit of a mission. We have a huge SUV (check me out!) but still we were full. Full of machines, equipment, medication and feeds. Everything to remember. Nothing could be forgotten. It was like packing when you have a newborn, only more challenging. Nappies you can get anywhere, morphine is slightly more tricky to find!
But, I remembered it.
I remembered everything.
Except for my clothes.
Everything I needed is still hanging up in my closet! (Yep, fully American now!!)
Now, that may have bothered me 6 months ago. Today, I couldn't care less. I actually found it quite funny!
I was to spend my time away wearing only a yellow swimming costume, Ben's flip flops and a suction machine!
Who cares?
Well I didn't.
Not until the phone call came from some lovely friends who are here on holiday.
They had arranged such a special evening for Ben.
We were to go to Universal Studios where he would meet Jessie J and have VIP tickets to go backstage. We would get to watch the concert. We could use the park.
Amazing, but Oh my flipping goodness!
Yellow swimming costume was not going to work for such an event.
If you see any of the great photos that have been posted, please do not judge me!
No, I didn't go in the swimming costume!
My outfit was a quick pick up from a local supermarket, just to get by.
Now when you are a size 10, cheap and nasty or even a bin liner looks good. But at a size, slightly larger than a ten, but not that much larger in American sizes!! does not make you look your best.
It was fine though, I was covered up at least!
Ben's mood went up and down. He went from feeling rubbish to nervous, to really excited.
He does that a lot now. His personality changes within minutes, seconds even.
I don't know why. I will work it out though. I generally do. It will take me some time though.
We weren't sure we would make it, as he wasn't that great really.
He was desperate though. Desperate to see his friends.
Totally consumed with exhaustion. Pale and fed up though.
It was such a shame as the previous day he had been brilliant. You can never predict this journey you see, the cruel twists and turns. It is always there. Trying to catch you off guard. Trying to beat you. It won't though. It won't beat Ben. It won't beat us.
The thought of seeing his school friends was both exciting and scary.
He did it! He dressed the part, following a trip to the Converse outlet, and for the most, he was just a normal kid.
He loved it.
Meeting Jessie J.
Having her dedicate a song to him. To call him an inspiration. It was a special moment and one we won't forget.
To our lovely friends. We thank you.
Ben got tired though. He got a bit weepy. His pain raised its head. But he did well, very well.
It is strange to see people who you have known for a while but who haven't seen Ben for some time.
I wanted him to look normal. I wanted them to see him well.
I did seek reassurance, I know I did.
I asked, outright. How do you think he looks?
Better than before we came, I was told, although counteracted with the fact that they had not really seen much of him. But he looked better, my friend thought. He actually looked better.
That was good enough for me.
You see, cancer strips your life and soul away. It steals your energy, your desire and your motivation. It's hold scares you and consumes you.
But you have to battle through. You can't let it take you. You can't let it sap everything you are and want to be.
What would be the point in the fight if you just gave in when it got tough? There wouldn't be a point and you have to keep telling yourself that.
Mind over matter
Mind over matter.
It was a lovely sight, last night, when Ben fell asleep at the table. It was lovely, as the other children did the same.
It looked normal. 4 tired children. Asleep in their food!
But when there is just one, just yours that has fallen asleep coupled with the tell telling sign of baldness and weakness, people look. People stare. People pity you.
Not last night though.
They were all the same.
Four tired kids. It was great. It was normal!
So yet another incredible memory has been created on this journey. And more people playing and being a part of it. For just a minute, feeling it. Or some of it anyway.
Our countdown to coming home has begun.
For the first time we have moved away from saying that we have been here for so many weeks now to, we have only 2 weeks to go. Two weeks until we come home. Too our lives, to you.
Can you believe how fast it has gone? How the time has flown by?
It feels like the normal holiday countdown now, well almost.
You know, where each day flys' by, and you seem to loose hours, days or weeks even.
We are coming home. We are almost ready. We have no choice.
We have a final chemo hurdle to get through next week. That is it then for here. Treatment in the US complete. We are done. We made it.
I would like to finish all of Ben's treatment here. I have told you that before. I want to bring him home well, finished. A fresh start.
We could. We could pay for it, for the rest of his treatment.
I have no idea how much it would cost. But we could try.
We won't.
He wants to come home.
He wants to move on.
Who would have ever imagined that this would be something that we would ever experience. Certainly not me.
Even at the first radiotherapy consultation that I went to, I thought it was some sort of strange wind up. Maybe I was imagining what I was being told because of a sort of stress like reaction.
I didn't even know he needed radiotherapy. No one had even mentioned it. It was benign, kind of? Wasn't it?
Well no. It was malignant. It is malignant. But that was ok. It hadn't spread. Why did he need radiotherapy?
That was where my head was then. I couldn't even contemplate conventional radiotherapy yet alone this. Proton? Seriously? What the heck?
I had only ever heard of one person having proton, and they were kidnapped to have it! I had never been interested in researching it. After all, I had given up cancer nursing! What an ironic twist life throws.
This wasn't real. Not in our world.
Being offered a treatment that doesn't even exist in the uk? Never was I ever thinking of this possibility.
Never to be sent to the US. It hadn't crossed my mind for even a second.
I have never ever wanted to visit here, America. I have always managed to find a suitable excuse when Dean has suggested it in the past.
Ben was too little.
We were trying for a baby.
I was pregnant.
We were trying for a baby.
I was pregnant.
We were trying for a baby.
I was pregnant.
We had just had a baby.
Chloe was too little.
I was too tired as Chloe was too little!
Chloe was too naughty.
Chloe is too naughty.
It was too far.
It was too expensive.
We were moving.
Let's wait until next year.
But I love it. I love Jacksonville. I could move to Jacksonville tomorrow.
Not to Orlando, but to Jacksonville, yes.
Have I been sucked in? Like the other families who say the same? Sucked in by the security? The care? The thought that actually your child is benefitting and getting well?
Maybe.
But I don't think so.
I have fallen in love with a beautiful and diverse city. With friendly, kind and inspiring people. With simplicity. With charm.
A place where you can do, see, feel and experience exactly what you want to.
But it isn't real. Not really. Is it?
Sunshine every day, nearly.
No work or school.
No post to open!
No nothing. Except for this.
Getting well, lovely places to recover. The ocean! (See, I told you. Get me!).
It isn't real. It is just a real part of our long journey. The best is yet to come. Isn't it?
My Mother and Father in law go home on Friday. If has gone very fast. They have been a great help and support. My father in law doesn't sit down. He is constantly looking for the next joke to be had or the next person to talk to. He loves it when you can't find a cork screw or the wifi goes down. Why?
So he can nip and find someone to ask, to tell them about it. To chat to. He loves putting the trash (bins!) out. You may bump into the bin man for a chat! He loves walking to the petrol garage, which is more like a supermarket. For a chat.
My mother in law goes with the flow. Easy going and patient. So flipping patient. I am sure that inside she really wants to scream, go crazy. Tell Chloe that there are no more flipping M and Ms. Tell My father in law to leave her alone as she doesn't want to go in the pool. Tell Dean.... well just tell Dean, and tell me. Tell me too.
Tell me that the answer will never be found at the bottom of a wine glass. She is right.
Mothers know best!
She will never say it though. She keeps it inside.
We all do. We all keep a lot inside these days.
Living together for this many weeks. No outlet. No escape. No anything except for this. It is tough. It is the hardest bit.
My identity has gone. I am Ben's mummy. Carer, nurse, worrier.
I am no longer selfish or too busy. He is my responsibility. I can, I will make him better.
I am Chloe's mummy. I listen and ultimately give in to her prolonged moaning. I can make up games and I can try to occupy her. I am better than any party planner!
I am Dean's wife. I listen to him, I listen to him again. I listen some more, I carry on listening.
This is me right now.
Prepare yourselves for the onslaught! I have not been out. Not out out anyway. I haven't had a chat with you. I haven't cried.
Prepare yourselves. She is coming home! We are coming home!
Since finishing proton, I miss our new friends. I miss making new friends. Each day was different. Each day was special.
I wonder what people are doing now that they have rung the bell. I wonder how our very poorly friend is that hadn't eaten for 10 days and looked so unwell. I will go in to see her next week. I need to know she is ok.
How are they all?
How are they feeling?
I can't ask them any more. Not like I did. It feels strange.
We miss them.
So really we have been swept along on this journey. We have experienced exactly the same emotions that the other protonites have.
What seemed odd at week one, is now the normal for us.
And we have done, just as the others have. We have created our own memories and had our own special journey.
It will never be forgotten. Not ever.
So, I came here the person I was and I leave soon, the person I am.
I haven't made as many changes as I planned.
I was coming home skinny. I am fatter than I have ever been.
All my vices were to be banished. They are worse! (But secret!).
I was coming home fit. I am the oopposite.
I was coming home sad.
I am the opposite.
I am thankful. Happy. Encouraged.
I am strong.
I have built a strength over these last two months that no one will ever believe.
What doesn't kill you makes you stronger?
My new friend, the one I chatted to on an evening, before she went home. She left an important impression.
She has 3 children. She is in a relationship but split from her kids daddy. She suffers anxiety. She calls it anxiety Annie.
I won't tell her story. It is hers to tell.
But I leave you with a thought.
Severe anxiety.
Taking your eldest child for proton. Because you have to.
Leaving you youngest children behind. Because you have to.
Doing this journey to get your daughter well.
Because you have to.
Knowing there are other big issues to cope with when you get home.
But you have to.
What a woman? What a person?
Her daughter will do well, she will because she is strong. She is strong because her mummy is too.
I think about those guys every day, often.
Anxiety Annie? It is really your time to leave now.
I didn't even know them, not really.
Doesn't it put things into perspective?
My Jacobs cream cracker friend is having fun. Always doing great stuff and seeing the sights.
She struggles like me. Her son won't/can't eat. We share the anxiety. Our boys are thin. They need to have nourishment to be well. That is our control.
That is our boys control too though and that is a problem. They aren't anorexic in the physiological term. But they control it. They are in charge.
That is unless they have a tube of course!!
And our boys do. We are lucky!
In a different place, we would be out,having fun. Carefree.
But not now.
That wasn't why we met.
We met for a very special reason.
We feel it.
We understand it.
So we move on, again. Another part of the journey complete.
Tonight/this morning I /we leave you.
Be happy. Be grateful. Don't be scared.
You will get there. We all will.
Whatever you are struggling with or fighting against, or for.
You are special.
We all are.
xx
From the Carters. Goodnight. Xx
Sent from my iPhone
Saturday 9 April 2016
Day 47/48
And that was that. All over. The bell has been rung.
28 sessions of proton completed by my brave boy.
He is so pleased with himself and so he should be. He has done well, so very well.
I feel strange.
Of course I am thrilled, but I feel sad, quite low.
Not quite the high I was expecting.
I think the adrenalin may have just crashed. Or maybe I am scared?
What comes next?
Ben asked me why I didn't cry.
Daddy cried, Nanny cried.
But I am getting good now. Good at crying, inwardly, so no one knows.
I know there is nothing wrong in crying, but if I was to cry, when I wanted to, when I needed to, well that would be often. Much too often.
The end of treatment bells was a different experience.
I was totally thrilled, of course. But I wish it was the ACTUAL end of treatment. Does that make sense? It was a symbolic gesture, that showed how amazingly he had done over the course of his 28 treatments and a sign that we are very very near to the end.
But there is a little way to go yet. Just a short journey now.
I don't want to dampen the mood. We are thrilled, but I am a realist, unfortunately.
How well do you know your kids?
I thought I knew mine.
I thought I could read Ben's every emotion.
I knew at the beginning of proton he was acutely frightened and I knew that with his chemo he was dreadfully fed up and felt unwell. I knew when he felt great and when he played on the beach, I saw that. I knew when he felt sad, when he just sat alone looking out to space. Thinking.
But most of the time, at proton, I thought he was ok. I thought that he was just getting on with the side effects and it wasn't bothering him too much. Of course the pain has been a nightmare but I thought that once controlled, he again was doing great.
Then he rang the bell. He finished treatment. He was a different boy. Almost instantly. His eyes brightened. His smile beamed. He was playful and funny. Interested and mischievous.
I thought it was just the adrenaline and the fact that he was pleased with himself.
It wasn't.
The sheer stress and anxiety that he had felt has gone. Disappeared.
He is no longer worrying that his swallowing is worsening.
He is no longer worrying that the pain is going to increase.
He is no longer stressing that he might have to go into hospital if his breathing worsens.
He is no longer governed and ruled by the proton. By the appointments, by the mask, by the choking sensation that he experiences when his saliva can't be swallowed and he is strapped down to a table and by the fear of vomiting when he is tied down. Alone in a room. The noise unbearable and the beam running through him. He is no longer afraid. Not of the proton anyway.
What a difference.
He is running around with a nerf gun, trying to shoot his Grandad. He is laughing and joking, drinking orange Fanta like it is going out of fashion. He is a normal boy. Almost.
His eyes are so blue. He has gained weight, haven't we all!
His grey colour is turning to that of a healthy child. He looks good. He has fuzz on his head where his lovely blonde hair is coming through. He is amazing!
The weight of the world has been lifted off this little boys shoulders.
It is not all normal, not really.
He is still fed through a gastrostomy tube, he still uses a suction machine and has a morphine patch on his back. He still can't sleep alone. He can't swallow solids. Not really, but he tries.
His neck, although looking great is burnt. Red and irritated. But better than we had ever expected. Ever.
He is tired. Very tired. He is moody and down.
Not always, just sometimes.
He can't swim with his Hickman line and in sunny Florida, that is a struggle.
But this is all ok. This we can cope with. This is not for long.
I am actually liking the control that I have with his feeds. It is easier than the constant battle to get him to eat, but there is also something very satisfying.
I know exactly what his intake is. It is better than any three meals a day. And you can tell.
My Jacobs cream cracker friend will know what I mean. She is the same. Her son struggles too.
Ben is gaining weight too. He is fully loaded with all the nutrients he needs.
It is Ben I have to thank though.
A few days before we came here it was suggested that he should have a peg. Just in case.
He was listed for theatre.
Every part of Ben's treatment has been necessary, none of it, just in case.
I couldn't let him have surgery for something not necessarily required. Remember he was having surgery every two weeks in his throat. Enough was enough for his little body.
It was a difficult debate as if he had run into difficulty and needed a tube whilst here, the options would have been limited. There is no way they could access his throat to anaesthetise him, without causing problems and no way he could have an NJ ( tube up his nose and down into his tummy), again as they couldn't access his throat safely. Not after so much proton. No way.
My thoughts were, that he would just have to have a liquid diet. Never did I imagine he would not be able to swallow his own saliva. I was told that though.
I just chose not to hear it.
It was too awful.
Far too horrible to hear that that would happen to your child. Your little boy.
Did he know?
Well, he made the choice to have the peg.
When I stopped him going to theatre, told them I had changed my mind. He got out of his bed and on the theatre trolley.
"Mum, stop worrying. Stop saying this stuff. You are making me scared. I am going for a peg. We don't want more problems than we need do we?"
I was told.
Here we are. The best thing that could have happened to keep him strong.
I do need to thank Ben for being so very very strong, for being mature and for facing this journey head on. Determined and strong.
To his Specialist Nurse for being tough, and telling me it had to be done and for the Proton Specialist Radiographer who actually thought of it in the first place. We thank you x.
We are often put off by previous experiences. I looked after patients who abused their pegs, putting whisky and other things down them because they couldn't swallow!Who didn't clean and dress them as needed and who didn't do the care required. I have seen and nursed some horrible messes that have been as a result of a peg. They are a source of infection. A child on chemo can not be subjected to an increased infection risk. They could get ill. Worse even.
Everyone is different and deals with things differently.
Don't judge today because of yesterday.
That won't help.
So we have taken a giant leap now, towards the end. We are nearly there. It is incredible.
This weekend we have travelled to Orlando again. Our friends have let us use there amazing home. Yet another set of fantastic friends, warm and generous people. We are so very lucky.
It is so relaxing here. Even Chloe has had a nap this afternoon. Unheard of. Ever!
There is a bedroom upstairs, all decorated with Play Story characters. This afternoon she decided she would like to go to bed with " woody".
Dean's face, a picture!!
She did though, and relaxed. Chloe. And Woody!
Ben has been asleep this afternoon for over 3 hours!
I have had three naps, in between administering either feed or pain relief. It has been bliss.
Amazing, not to have to do anything, just to sit, to sleep.
Just to not worry.
Nanny and Grandad being here are a great light relief. Someone else to share with.
They are so helpful with the kids. And my father in law never leaves one moment dull!
They are a great combination of mummy mummy and funny daddy!
The kids are thriving with this new stimulation.
They were petrified to come here, my in laws. They have told me that now.
They did not know what to expect. They were worried that Ben was going to be so unwell that it would be too much. Too scary, it would hurt too much. But they knew. They knew he wanted them. We are truly grateful.
There have been moments. Moments when he has been crying and distressed.
Moments when you forget or don't know what is coming next.
It is hard, hideous, dreadful, frightening. Flipping unfair.
These moments, though, they seem to be getting fewer.
Or am I used to it?
When we arrived here at our friends home we were greeted with the best surprise. EVER!
A packet of JCC,s!!!
What else can you wish for? Your eldest finishes proton and you get to celebrate with a cracker!
Fantastic.
Thank you - you know who you are x
I am already missing some of our new friends. We have met so many, people, with such amazing and courageous journeys.
The Grey family? I wish we had had the chance to know you better? I wish we could have spent more time with you and your girls.
They weren't really the Grey family. I just managed to put a post on Facebook saying they were a grey family. I meant "great"!!!
Our new friends, do you remember. They gave the kids soft toys. Blessed by their Methodist faith. Their bell rang this morning. We are so pleased. They had a photo with Ben. He was very unwell at the time. They went away, with their faith and their community. They prayed for Ben.
They took a photo yesterday. It was different. A before and after.
They have thanked their community for the prayers that have been said for Ben.
On paper it has worked. He looks different. He is so much better.
We thank you and your faith.
So now what?
We have only 16 days left. We meet some friends from home tomorrow. We can't wait.
Apparently we, well Ben, is also meeting Jessie J tomorrow evening. I will keep you posted!
We have still got things we want to do and see and our time here is running away. That should be good though? This wasn't a holiday.
But it isn't.
I don't want to leave.
I asked Ben if he would like to stay. At least until his chemo had finished in May.
I could bring him home. Well. Treatment finished.
He wants to come home now though. He is done. He has had enough.
Did you see the ski trip picture?
That is what he misses.
His friends.
His life.
His bedroom.
His home.
We are coming home.
We continue to embrace this journey. Whatever it throws our way we will deal with.
It isn't easy, but what is?
There are many people who today are fighting the battle, just like we are. Just like Ben is.
Each day we think of you too and hope that your light at the end of what seems the longest tunnel ever, starts to approach.
Tonight from the Carters, we send our positivity to you. To those who are struggling and who are still on their very own special journey, we are thinking about you.
Some of you we know. Others we don't.
It doesn't matter.
We are all in this together.
Wishing you love X
Goodnight from the Carters until tomorrow xx
Sent from my iPhone
28 sessions of proton completed by my brave boy.
He is so pleased with himself and so he should be. He has done well, so very well.
I feel strange.
Of course I am thrilled, but I feel sad, quite low.
Not quite the high I was expecting.
I think the adrenalin may have just crashed. Or maybe I am scared?
What comes next?
Ben asked me why I didn't cry.
Daddy cried, Nanny cried.
But I am getting good now. Good at crying, inwardly, so no one knows.
I know there is nothing wrong in crying, but if I was to cry, when I wanted to, when I needed to, well that would be often. Much too often.
The end of treatment bells was a different experience.
I was totally thrilled, of course. But I wish it was the ACTUAL end of treatment. Does that make sense? It was a symbolic gesture, that showed how amazingly he had done over the course of his 28 treatments and a sign that we are very very near to the end.
But there is a little way to go yet. Just a short journey now.
I don't want to dampen the mood. We are thrilled, but I am a realist, unfortunately.
How well do you know your kids?
I thought I knew mine.
I thought I could read Ben's every emotion.
I knew at the beginning of proton he was acutely frightened and I knew that with his chemo he was dreadfully fed up and felt unwell. I knew when he felt great and when he played on the beach, I saw that. I knew when he felt sad, when he just sat alone looking out to space. Thinking.
But most of the time, at proton, I thought he was ok. I thought that he was just getting on with the side effects and it wasn't bothering him too much. Of course the pain has been a nightmare but I thought that once controlled, he again was doing great.
Then he rang the bell. He finished treatment. He was a different boy. Almost instantly. His eyes brightened. His smile beamed. He was playful and funny. Interested and mischievous.
I thought it was just the adrenaline and the fact that he was pleased with himself.
It wasn't.
The sheer stress and anxiety that he had felt has gone. Disappeared.
He is no longer worrying that his swallowing is worsening.
He is no longer worrying that the pain is going to increase.
He is no longer stressing that he might have to go into hospital if his breathing worsens.
He is no longer governed and ruled by the proton. By the appointments, by the mask, by the choking sensation that he experiences when his saliva can't be swallowed and he is strapped down to a table and by the fear of vomiting when he is tied down. Alone in a room. The noise unbearable and the beam running through him. He is no longer afraid. Not of the proton anyway.
What a difference.
He is running around with a nerf gun, trying to shoot his Grandad. He is laughing and joking, drinking orange Fanta like it is going out of fashion. He is a normal boy. Almost.
His eyes are so blue. He has gained weight, haven't we all!
His grey colour is turning to that of a healthy child. He looks good. He has fuzz on his head where his lovely blonde hair is coming through. He is amazing!
The weight of the world has been lifted off this little boys shoulders.
It is not all normal, not really.
He is still fed through a gastrostomy tube, he still uses a suction machine and has a morphine patch on his back. He still can't sleep alone. He can't swallow solids. Not really, but he tries.
His neck, although looking great is burnt. Red and irritated. But better than we had ever expected. Ever.
He is tired. Very tired. He is moody and down.
Not always, just sometimes.
He can't swim with his Hickman line and in sunny Florida, that is a struggle.
But this is all ok. This we can cope with. This is not for long.
I am actually liking the control that I have with his feeds. It is easier than the constant battle to get him to eat, but there is also something very satisfying.
I know exactly what his intake is. It is better than any three meals a day. And you can tell.
My Jacobs cream cracker friend will know what I mean. She is the same. Her son struggles too.
Ben is gaining weight too. He is fully loaded with all the nutrients he needs.
It is Ben I have to thank though.
A few days before we came here it was suggested that he should have a peg. Just in case.
He was listed for theatre.
Every part of Ben's treatment has been necessary, none of it, just in case.
I couldn't let him have surgery for something not necessarily required. Remember he was having surgery every two weeks in his throat. Enough was enough for his little body.
It was a difficult debate as if he had run into difficulty and needed a tube whilst here, the options would have been limited. There is no way they could access his throat to anaesthetise him, without causing problems and no way he could have an NJ ( tube up his nose and down into his tummy), again as they couldn't access his throat safely. Not after so much proton. No way.
My thoughts were, that he would just have to have a liquid diet. Never did I imagine he would not be able to swallow his own saliva. I was told that though.
I just chose not to hear it.
It was too awful.
Far too horrible to hear that that would happen to your child. Your little boy.
Did he know?
Well, he made the choice to have the peg.
When I stopped him going to theatre, told them I had changed my mind. He got out of his bed and on the theatre trolley.
"Mum, stop worrying. Stop saying this stuff. You are making me scared. I am going for a peg. We don't want more problems than we need do we?"
I was told.
Here we are. The best thing that could have happened to keep him strong.
I do need to thank Ben for being so very very strong, for being mature and for facing this journey head on. Determined and strong.
To his Specialist Nurse for being tough, and telling me it had to be done and for the Proton Specialist Radiographer who actually thought of it in the first place. We thank you x.
We are often put off by previous experiences. I looked after patients who abused their pegs, putting whisky and other things down them because they couldn't swallow!Who didn't clean and dress them as needed and who didn't do the care required. I have seen and nursed some horrible messes that have been as a result of a peg. They are a source of infection. A child on chemo can not be subjected to an increased infection risk. They could get ill. Worse even.
Everyone is different and deals with things differently.
Don't judge today because of yesterday.
That won't help.
So we have taken a giant leap now, towards the end. We are nearly there. It is incredible.
This weekend we have travelled to Orlando again. Our friends have let us use there amazing home. Yet another set of fantastic friends, warm and generous people. We are so very lucky.
It is so relaxing here. Even Chloe has had a nap this afternoon. Unheard of. Ever!
There is a bedroom upstairs, all decorated with Play Story characters. This afternoon she decided she would like to go to bed with " woody".
Dean's face, a picture!!
She did though, and relaxed. Chloe. And Woody!
Ben has been asleep this afternoon for over 3 hours!
I have had three naps, in between administering either feed or pain relief. It has been bliss.
Amazing, not to have to do anything, just to sit, to sleep.
Just to not worry.
Nanny and Grandad being here are a great light relief. Someone else to share with.
They are so helpful with the kids. And my father in law never leaves one moment dull!
They are a great combination of mummy mummy and funny daddy!
The kids are thriving with this new stimulation.
They were petrified to come here, my in laws. They have told me that now.
They did not know what to expect. They were worried that Ben was going to be so unwell that it would be too much. Too scary, it would hurt too much. But they knew. They knew he wanted them. We are truly grateful.
There have been moments. Moments when he has been crying and distressed.
Moments when you forget or don't know what is coming next.
It is hard, hideous, dreadful, frightening. Flipping unfair.
These moments, though, they seem to be getting fewer.
Or am I used to it?
When we arrived here at our friends home we were greeted with the best surprise. EVER!
A packet of JCC,s!!!
What else can you wish for? Your eldest finishes proton and you get to celebrate with a cracker!
Fantastic.
Thank you - you know who you are x
I am already missing some of our new friends. We have met so many, people, with such amazing and courageous journeys.
The Grey family? I wish we had had the chance to know you better? I wish we could have spent more time with you and your girls.
They weren't really the Grey family. I just managed to put a post on Facebook saying they were a grey family. I meant "great"!!!
Our new friends, do you remember. They gave the kids soft toys. Blessed by their Methodist faith. Their bell rang this morning. We are so pleased. They had a photo with Ben. He was very unwell at the time. They went away, with their faith and their community. They prayed for Ben.
They took a photo yesterday. It was different. A before and after.
They have thanked their community for the prayers that have been said for Ben.
On paper it has worked. He looks different. He is so much better.
We thank you and your faith.
So now what?
We have only 16 days left. We meet some friends from home tomorrow. We can't wait.
Apparently we, well Ben, is also meeting Jessie J tomorrow evening. I will keep you posted!
We have still got things we want to do and see and our time here is running away. That should be good though? This wasn't a holiday.
But it isn't.
I don't want to leave.
I asked Ben if he would like to stay. At least until his chemo had finished in May.
I could bring him home. Well. Treatment finished.
He wants to come home now though. He is done. He has had enough.
Did you see the ski trip picture?
That is what he misses.
His friends.
His life.
His bedroom.
His home.
We are coming home.
We continue to embrace this journey. Whatever it throws our way we will deal with.
It isn't easy, but what is?
There are many people who today are fighting the battle, just like we are. Just like Ben is.
Each day we think of you too and hope that your light at the end of what seems the longest tunnel ever, starts to approach.
Tonight from the Carters, we send our positivity to you. To those who are struggling and who are still on their very own special journey, we are thinking about you.
Some of you we know. Others we don't.
It doesn't matter.
We are all in this together.
Wishing you love X
Goodnight from the Carters until tomorrow xx
Sent from my iPhone
Thursday 7 April 2016
Sherrardswood Ski Trip!!
Hi Ben, we've been thinking of you on our ski trip so thought we would send you a message!
Love from your friends on the Sherrardswood Ski Trip xxx
Wednesday 6 April 2016
Day 45/46
The journey continues, but it is nearing its end. Of this part anyway.
There have been moments of tears, moments of joy, of sheer frustration and of uncontrollable love and adoration.
The have been moments of solidarity and of surprise. Moments of unity and hilarity. And most of all moments of sheer gratitude that we have had this opportunity. To get Ben well. To have family time, albeit hard at times, and to enjoy such a beautiful and amazing place for so many weeks.
We have had good days, brilliant days, awful days and terrible days but we have got there, almost.
Ben completed number 26 out of his 28 protons tonight. He had his weekly Proton check. Not with Dr Dreamy but with his colleague, Dr Delightful. He was doin what ever it was he was doin ! in Denmark. And she was checking Ben, on his behalf.
She told us that his external radiotherapy reaction was amazing, considering that the throat is one of the hardest areas to treat and she definitely wanted us to keep doing what we are doing on that front.
She explained that his symptoms had more than likely peaked and that the fact that today he could swallow fluid was incredible.
She explained that she anticipated that in a week to two weeks time his sore throat and mucus build up would be reduced and that she would expect him to be eating again within the month.
Totally fantastic news, and the reassurance we all needed tonight.
It is impossible to assess any longer term damage at this point and she explained that there may be some future complications that may require speech and language input. She could not say whether he will ever not have a hoarse voice. But, he has a voice.
He has spent the majority of the last 6 months able only to whisper. We thought that was the best he may ever get. Now he sounds as if he has just a very sore throat. And he has.
He is on Fentanyl patches for pain as well as morphine and hydro codone as he requires it. I was administering pain relief every two hours last night. Hideous. ( note to sister! - I reckon I remember what it is like with a baby and sleep deprivation!!)
But that said, his strength and determination has got him to the end. Almost.
Tomorrow he graduates and makes a speech. You can guarantee that he looses his voice tonight and I get nominated!! It's the least I can do for him though.
He has treatment tomorrow at 10pm and then at 7am on Thursday. That is his last day.
He will ring the bell. The Aub chimes, which celebrate his completion of this part of the journey. People will clap. I will most definitely cry.
So positive news after a couple of tough days.
His fatigue is pretty bad now but he also ended up in the hospital yesterday with a high temperature. There seems to be no cause for concern. But every minute of every day is a cause for concern.
I lay awake watching and listening to his every strained breath last night. He developed a tracheal pull and stridor. Basically this is the technical terms for difficulty breathing due to his airway being in trouble.
It has happened before, when his tumour blocked his airway. This time though, it is different. It is the build up of mucus and inflammation caused by the treatment. He is loud. It is a snore, a wheeze and a gurgle all at the same time.
I have to tell myself he is ok. I have to try not to worry.
It is hard, so very hard.
I dread the nighttimes coming.
But they do. And we get through them.
Last night though was troubling. Each time I thought I had cracked it, either by changing his position or by suctioning him, the noise started again. At times it was confusing as I could hear it, but it didn't seem to be him.
The father in law! A few Bud lights later. Sounded like he had had 20 sessions of proton!! Poor Tina!
My mother and father in law had a guided tour of Ben's gantry last night. He was so proud to be showing them. It was really interesting and nothing like the first time I saw it when Ben was in a complete panic and mum and I were crying.
He was confident, knowledgeable and really chuffed to have his Nanny and Grandad with him for this part of his journey. We are too.
When I first met my father in law, some 15 years ago, I used to gasp in horror at some of his comments and jokes. He has his own way and he makes me die! I no longer gasp. I now know what is coming. I can predict it now. I know him too well.
He loves to chat to people and he makes some very funny jokes. Well, funny to us anyway. He is, what you would describe as, politically incorrect. Not in a rude or nasty way. Just in his way.
This made yesterday particularly funny when he decided to talk politics with an American couple by the pool. Gary talked about how he liked Obama. They told him he had ruined America and so he moved on.
To Donald Trump!
He explained that he thought he would be a great US president!
I have no idea if he was serious. But the lady explained to him " that she would rather vote for a monkey!"
He has now spent most of today looking for Trump flags to wave by the pool. Luckily he hasn't found one....yet.
It is all in jest, but he does bring humour to situations that need to be lightened. It is good to have him here.
My mother in law has always been a mummy mummy. Not like me. Much gentler. Much kinder. Much mummier!
Ben loves this. His every sentence starts with "can Nanny ...."
He wants her to cuddle him, watch TV with him, chill out with him. And she will. She would do what ever he asked. She is a calming influence now. She counteracts my harder approach. It is good to have her here.
They love it here too. You couldn't not. It is fantastic. I don't know how I will adapt to life as it was. But I will. I have no choice.
Today we visited St Augustine's. Absolutely beautiful. Old town and history, mixed with beach and marina, mixed with culture and vibe, mixed with fun. We will go back. We didn't do a great deal of the sights as Ben was too tired, but we will. I really wished that my mum was here today. There is so much she wanted to see and do, much more we have found that she would love.
Every part of this journey, and each day if different.
One day you can see and do a lot, and others you just have to wait. Wait until Ben can.
It is restrictive. But that is what it is. He is trying and doing do very much.
I never expected it at this point.
I am still struggling to believe we are home in less than three weeks. It is so very strange.
What do you expect when we return? Floridian beauties, all golden and fit? A family of emotional wrecks, all tired and gaunt? American accents and cute slang? Holiday blues that are so bad that they require immediate professional healthcare attention?
Or do you just expect us?
As we were?
Before all this started?
I don't know, but it will be none of the above or maybe it will be bits, all mixed together? But we won't be the same again. Ever.
But I don't want to be, the same.
I want to use my time on earth in a different way.
I want to count each breath as if it maybe my last. Because you don't know. You never know.
So, whilst we worry about leaving the toilet seat up, the floor being dirty or the grass being too long. We shouldn't. There is no need. There is no time.
Every part of our life is a journey and every path you take leads you to something new, somewhere new.
Everything you pass and see along the way becomes a memory and those memories need to be treasured.
We have created so many new and beautiful memories on this journey and they will never be forgotten, cherished forever.
When I started this blog, I did it hoping that Ben would take it from me and create his own. He couldn't. He had used every bit of his reserve to get to this point.
So I carried on. For him, for all of us. For me. I have always wondered though, when it will end, where it will end.
Do you just stop? Stop writing one day?
We are here, home, is that the end?
Ben is cured, is that the end?
I have never really known.
But, it is becoming clearer now, as I write, that this part of the journey and therefore this blog is coming to its natural ending.
It will end when it is time and there is no more to write.
I feel an emotional attachment though, to it, the blog. To you.
However, writing about my supermarket shopping, my day at work or my argument with my husband in three weeks time doesn't have the same appeal! To the reader and certainly not the writer!!
So we will see.
If there is a natural need and want to blog. Then....
If it naturally ceases.....then.
Each day I write, and each day you read, is a total pleasure. You help me through this and you make me smile.
I love including you and I hope you are and have enjoyed been included too.
So for tonight. I must paint my nails. After all it is graduation day tomorrow!
With love, as always. The Carters xxx
Sent from my iPhone
There have been moments of tears, moments of joy, of sheer frustration and of uncontrollable love and adoration.
The have been moments of solidarity and of surprise. Moments of unity and hilarity. And most of all moments of sheer gratitude that we have had this opportunity. To get Ben well. To have family time, albeit hard at times, and to enjoy such a beautiful and amazing place for so many weeks.
We have had good days, brilliant days, awful days and terrible days but we have got there, almost.
Ben completed number 26 out of his 28 protons tonight. He had his weekly Proton check. Not with Dr Dreamy but with his colleague, Dr Delightful. He was doin what ever it was he was doin ! in Denmark. And she was checking Ben, on his behalf.
She told us that his external radiotherapy reaction was amazing, considering that the throat is one of the hardest areas to treat and she definitely wanted us to keep doing what we are doing on that front.
She explained that his symptoms had more than likely peaked and that the fact that today he could swallow fluid was incredible.
She explained that she anticipated that in a week to two weeks time his sore throat and mucus build up would be reduced and that she would expect him to be eating again within the month.
Totally fantastic news, and the reassurance we all needed tonight.
It is impossible to assess any longer term damage at this point and she explained that there may be some future complications that may require speech and language input. She could not say whether he will ever not have a hoarse voice. But, he has a voice.
He has spent the majority of the last 6 months able only to whisper. We thought that was the best he may ever get. Now he sounds as if he has just a very sore throat. And he has.
He is on Fentanyl patches for pain as well as morphine and hydro codone as he requires it. I was administering pain relief every two hours last night. Hideous. ( note to sister! - I reckon I remember what it is like with a baby and sleep deprivation!!)
But that said, his strength and determination has got him to the end. Almost.
Tomorrow he graduates and makes a speech. You can guarantee that he looses his voice tonight and I get nominated!! It's the least I can do for him though.
He has treatment tomorrow at 10pm and then at 7am on Thursday. That is his last day.
He will ring the bell. The Aub chimes, which celebrate his completion of this part of the journey. People will clap. I will most definitely cry.
So positive news after a couple of tough days.
His fatigue is pretty bad now but he also ended up in the hospital yesterday with a high temperature. There seems to be no cause for concern. But every minute of every day is a cause for concern.
I lay awake watching and listening to his every strained breath last night. He developed a tracheal pull and stridor. Basically this is the technical terms for difficulty breathing due to his airway being in trouble.
It has happened before, when his tumour blocked his airway. This time though, it is different. It is the build up of mucus and inflammation caused by the treatment. He is loud. It is a snore, a wheeze and a gurgle all at the same time.
I have to tell myself he is ok. I have to try not to worry.
It is hard, so very hard.
I dread the nighttimes coming.
But they do. And we get through them.
Last night though was troubling. Each time I thought I had cracked it, either by changing his position or by suctioning him, the noise started again. At times it was confusing as I could hear it, but it didn't seem to be him.
The father in law! A few Bud lights later. Sounded like he had had 20 sessions of proton!! Poor Tina!
My mother and father in law had a guided tour of Ben's gantry last night. He was so proud to be showing them. It was really interesting and nothing like the first time I saw it when Ben was in a complete panic and mum and I were crying.
He was confident, knowledgeable and really chuffed to have his Nanny and Grandad with him for this part of his journey. We are too.
When I first met my father in law, some 15 years ago, I used to gasp in horror at some of his comments and jokes. He has his own way and he makes me die! I no longer gasp. I now know what is coming. I can predict it now. I know him too well.
He loves to chat to people and he makes some very funny jokes. Well, funny to us anyway. He is, what you would describe as, politically incorrect. Not in a rude or nasty way. Just in his way.
This made yesterday particularly funny when he decided to talk politics with an American couple by the pool. Gary talked about how he liked Obama. They told him he had ruined America and so he moved on.
To Donald Trump!
He explained that he thought he would be a great US president!
I have no idea if he was serious. But the lady explained to him " that she would rather vote for a monkey!"
He has now spent most of today looking for Trump flags to wave by the pool. Luckily he hasn't found one....yet.
It is all in jest, but he does bring humour to situations that need to be lightened. It is good to have him here.
My mother in law has always been a mummy mummy. Not like me. Much gentler. Much kinder. Much mummier!
Ben loves this. His every sentence starts with "can Nanny ...."
He wants her to cuddle him, watch TV with him, chill out with him. And she will. She would do what ever he asked. She is a calming influence now. She counteracts my harder approach. It is good to have her here.
They love it here too. You couldn't not. It is fantastic. I don't know how I will adapt to life as it was. But I will. I have no choice.
Today we visited St Augustine's. Absolutely beautiful. Old town and history, mixed with beach and marina, mixed with culture and vibe, mixed with fun. We will go back. We didn't do a great deal of the sights as Ben was too tired, but we will. I really wished that my mum was here today. There is so much she wanted to see and do, much more we have found that she would love.
Every part of this journey, and each day if different.
One day you can see and do a lot, and others you just have to wait. Wait until Ben can.
It is restrictive. But that is what it is. He is trying and doing do very much.
I never expected it at this point.
I am still struggling to believe we are home in less than three weeks. It is so very strange.
What do you expect when we return? Floridian beauties, all golden and fit? A family of emotional wrecks, all tired and gaunt? American accents and cute slang? Holiday blues that are so bad that they require immediate professional healthcare attention?
Or do you just expect us?
As we were?
Before all this started?
I don't know, but it will be none of the above or maybe it will be bits, all mixed together? But we won't be the same again. Ever.
But I don't want to be, the same.
I want to use my time on earth in a different way.
I want to count each breath as if it maybe my last. Because you don't know. You never know.
So, whilst we worry about leaving the toilet seat up, the floor being dirty or the grass being too long. We shouldn't. There is no need. There is no time.
Every part of our life is a journey and every path you take leads you to something new, somewhere new.
Everything you pass and see along the way becomes a memory and those memories need to be treasured.
We have created so many new and beautiful memories on this journey and they will never be forgotten, cherished forever.
When I started this blog, I did it hoping that Ben would take it from me and create his own. He couldn't. He had used every bit of his reserve to get to this point.
So I carried on. For him, for all of us. For me. I have always wondered though, when it will end, where it will end.
Do you just stop? Stop writing one day?
We are here, home, is that the end?
Ben is cured, is that the end?
I have never really known.
But, it is becoming clearer now, as I write, that this part of the journey and therefore this blog is coming to its natural ending.
It will end when it is time and there is no more to write.
I feel an emotional attachment though, to it, the blog. To you.
However, writing about my supermarket shopping, my day at work or my argument with my husband in three weeks time doesn't have the same appeal! To the reader and certainly not the writer!!
So we will see.
If there is a natural need and want to blog. Then....
If it naturally ceases.....then.
Each day I write, and each day you read, is a total pleasure. You help me through this and you make me smile.
I love including you and I hope you are and have enjoyed been included too.
So for tonight. I must paint my nails. After all it is graduation day tomorrow!
With love, as always. The Carters xxx
Sent from my iPhone
Monday 4 April 2016
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
Sent from my iPhone
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
Sent from my iPhone
Saturday 2 April 2016
A memory of how it used to be and my most favourite photo of my well boy just weeks before this began.
Enjoy my most favourite photo of well Ben. This was taken in September just before his first operation. Just befit life changed. Xx
Day 41/42
So, it is what it is!
That was what a good friend and ex colleague told me when I chatted to her about Ben's diagnosis a few months ago.
I can remember thinking, ok, there are many things that I had expected her to say, but never that.
She is, or was, an ENT nurse. She nursed patients with cancer of the head and neck often. Her Dad had also has head and neck problems, however, that is her story to tell, not mine.
So, when she said that, it is what it is, I never imagined ever repeating it so many times.
It is our motto now. It helps us through. After all, it is so very true. It is, what, it is?
My nights are hideous now. I can't sleep because I need to watch his every breath. I am petrified that he might choke on the saliva he can't swallow.
For over three hours last night I lay awake thinking about how I could suction his throat, if I needed to.
I am a bit of a Blue Peter Girl.
Give me a problem, I will solve it. I don't give up. I never give up.
In the end I slept. I had finalised my plan.
A straw.
My mouth
And suck as hard as flipping possible was my plan!
I told the doctor today, my plan.
We have a mobile suction machine arriving tomorrow. I don't think he thought much of it, my plan!
Ben has gurgled and whooped in his sleep for as long as I can remember now. That really is how it all started. Noisy breathing. Not your normal snore, but more of a whoop. That is what I used to call it. The "whoop."
It got so bad one night that he had to be blue lighted to GOSH. It was so frightening and the absolute worse part of this journey. I remember anaesthetists talking to me about intubation and I remember how tired his breathing was and just how tired he was.
We have come so far. I could have lost him then as the tumour was found to be covering his airway. He was literally breathing out of a hole the size of a pierced ear hole.
That is how it started really. This journey. That is how it became catastrophic. That is why we are here now.
Dr Dreamy met with us today.
I was ready to go to town on him and his pathetic nurse. If there is anything that I have learnt over my career it is that there is absolutely no need to suffer. If you or I take paracetamol for a headache, do you really think that that is adequate pain relief for a child with both external and internal burns to the throat? Exactly. I had to get him morphine. And I did.
I was ready.
I got up at six.
Work mode kicked in and I became the person in charge, not just the mummy. They were going to get it.
They didn't though.
They had heard. Dr Dreamy and nurse Drippy had been told we were cross, they had been told Ben was suffering and they were ready. She, nurse Drippy, as usual, was shocking.
Nurses, well good nurses anyway, have an intuition. It is true. We really do.
I have never nursed kids before but my intuition tells me what they need.
In fact, it is common sense. A child should not be in pain, they need not to cry out in agony. They need to be cared for and supported. They failed Ben, not me. I knew what he needed. Their job was to provide, they didn't though.
Another doctor at another hospital did though. He recognised how Ben was struggling. He helped him.
Dr Dreamy was quite informative today. He was adamant that Ben should not have further surgery unless a new tumour arises, the multiple surgical procedures have exacerbated Ben's tumour.
He told us that Ben would need a follow up in three months, six months and then a further plan would be set. He told us that Ben would have repeat scans.
We knew that.
The NHS do not pay for follow ups out here , but Dr Dreamy will waiver the fee. You see? I knew washing my hair and wearing a new dress would help!
Seriously though, he has offered free follow up care, should we choose it.
He told us a lot today.
I know that Ben will need to be followed up closely but he needs to be a normal boy again. If the cancer isn't a killer then for him, this this will be. He tells me every day. "Mum, I just want to be a normal boy"
But, what is normal? Ben has cancer, other children have asthma or diabetes. Others have critical problems. We are lucky.
Ben's scans for at least three months will look a total mess to the un proton educated, we were told. His throat is, and, will be battered. We knew that.
He told us, Dr Dreamy, how proton worked. I hung on his every word!There are cells (cancer) that are killed immediately and others that lie dormant that just get a blast. Of proton radiation that is. I didn't know this.
The dead ones are seen straight away, but the dormant ones are only killed when they try to multiply. It may take 2 years to see the full effects of proton.
Some of this I knew. Some of it, I still don't get. Maybe because I am not ready.
He was in full swing today, Dr Dreamy, so I tried my luck.
No, I didn't ask him out!, I asked him about prognosis.
It is dangerous to ask because you will get an answer.
Will you ever be ready for the answer that doesn't say that for definite your child will be cured. 100 per cent.?
He didn't tell us this.
He has never seen a tumour like Ben's, no one has.
In the U.S there has only ever been one case that he knows of that is similar.
He told us to use rhabdomyosarcoma cure rates as our benchmark. He said 75 percent.
Is that good? Is that ok? I have no idea. 100 percent would be ideal.
It is what it is.
I asked him what next.
He told me to cross that bridge .....
So we move forward.
Ben is in the 75 percent. Isn't he?
I could not ever tell him that he had to do this again. No way. For us he has to be cured. There is no choice. He / we - can't do this again.
Today though was a beautiful day, weather wise. We spent our afternoon by Jax beach. I love it there. We all do. It is refreshing, it is natural. It is beautiful.
I don't want to leave here. I really don't.
I pushed Ben in Chloe's buggy. I do that a lot now. He is too tired. But the fresh sea air? It must help?
We continue though, the way we know how.
He looks amazing today, that makes us feel better, I wish he would swallow though. The very hard part of this journey is knowing that your kids, at some point take control. When they do, you lose yours. They try to control what they can, regardless of their age. More often than not, their choices are rubbish. They are kids after all!
And then they choose well, just when you least expect it.
Ben helped a new friend tonight. He was amazing. Our new friend had a 3pm appointment. When we arrived at 840pm, she was still there, tired and feeling sick. She looked like a baby. Her mum was alone. She was crying. She was 11, our new friend.
She was in so late as she had had a panic on the table tonight. If she didn't get back on she would have had to have an anaesthetic. Ben talked to her. He told her how scared he was at first. He told he it was ok in the end. She went! She did it!
You see, he is kind. Very kind. He has always been more focused on helping others, not on himself. This self focus scares him. He doesn't want to be unwell.
I still am amazed each day by his courage and bravery. Don't get me wrong, he still has his moments! But you accept that. After all, I have mine. I am not unwell. I am not in any pain, well not physically anyway.
I have a lot to tell you right now, but the time isn't right yet.
So the in laws are arriving and that will definitely give Ben a further boost. A change of company is so refreshing. When you are used to people it is hard being just the four of us. I used to wish for peace and quiet. To not have to see people day in and day out. Now I am craving you. I am craving your company. I want to hear your stories and find out what you are doing. I want to see you. I want to be normal too, just like Ben does.
He only has 4 more protons to go. He is doing fantastically. I can't wait now until it is over and we can start the recovery process. I long for the day he is chosen to play a football match again or to be in a school play. I will never miss one of these events. Ever again.
His radiotherapy reaction is looking pretty good if I do say so myself. I have moved on from the aloe now as it stings. Plain old petroleum jelly, plenty of ice therapy and keeping is lubricated all the time seems to be doing to trick. I can't treat the inside for him. He won't do what I want him to do so we will just wait, wait until he heals.
I am getting tired now. Tired of being the mother with the child with cancer and tired of the constant roller coaster, but I know it is coming to an end.
In the beginning I embraced this journey, but it is tiring now.
In the beginning I didn't mind when people looked or asked what was wrong with him, but it is tiring now. In the beginning, though, I could not see any light and the end of this long tunnel. But it is there now. Shining so brightly. Within our grasp. We just need to get there. It won't be long now.
We have plans. We still have places to visit and things to see.
Amelia island, again. Clearwater.
Lots to do and running out of time.
The strangest things make me happy. If Ben has a poo. Oh, I am thrilled! Seriously I am. If I take his temperature and it looks good, I could throw a party! Seriously, I could! If he laughs or jokes and looks like he is enjoying himself. I am happy, content. Relaxed.
You see, your kids mean everything to you. I have realised now how in life, I have often been selfish. Self absorbed in my work or generally in myself. Trying to please others who really don't matter. Trying to find my inner peace. But I know now. I know that I feel at my best when my children are at theirs. Never will I put them second to anything. They are, and will always remain, my priority. They are mine. They are my life. Their wellbeing is my inner peace.
It is what it is..
So, it is time now to enjoy the weekend of no treatment. To entertain the in laws and to have some fun.
So for now I will leave you to enjoy your weekend too.
Love always - the Carters xx
Sent from my iPhone
That was what a good friend and ex colleague told me when I chatted to her about Ben's diagnosis a few months ago.
I can remember thinking, ok, there are many things that I had expected her to say, but never that.
She is, or was, an ENT nurse. She nursed patients with cancer of the head and neck often. Her Dad had also has head and neck problems, however, that is her story to tell, not mine.
So, when she said that, it is what it is, I never imagined ever repeating it so many times.
It is our motto now. It helps us through. After all, it is so very true. It is, what, it is?
My nights are hideous now. I can't sleep because I need to watch his every breath. I am petrified that he might choke on the saliva he can't swallow.
For over three hours last night I lay awake thinking about how I could suction his throat, if I needed to.
I am a bit of a Blue Peter Girl.
Give me a problem, I will solve it. I don't give up. I never give up.
In the end I slept. I had finalised my plan.
A straw.
My mouth
And suck as hard as flipping possible was my plan!
I told the doctor today, my plan.
We have a mobile suction machine arriving tomorrow. I don't think he thought much of it, my plan!
Ben has gurgled and whooped in his sleep for as long as I can remember now. That really is how it all started. Noisy breathing. Not your normal snore, but more of a whoop. That is what I used to call it. The "whoop."
It got so bad one night that he had to be blue lighted to GOSH. It was so frightening and the absolute worse part of this journey. I remember anaesthetists talking to me about intubation and I remember how tired his breathing was and just how tired he was.
We have come so far. I could have lost him then as the tumour was found to be covering his airway. He was literally breathing out of a hole the size of a pierced ear hole.
That is how it started really. This journey. That is how it became catastrophic. That is why we are here now.
Dr Dreamy met with us today.
I was ready to go to town on him and his pathetic nurse. If there is anything that I have learnt over my career it is that there is absolutely no need to suffer. If you or I take paracetamol for a headache, do you really think that that is adequate pain relief for a child with both external and internal burns to the throat? Exactly. I had to get him morphine. And I did.
I was ready.
I got up at six.
Work mode kicked in and I became the person in charge, not just the mummy. They were going to get it.
They didn't though.
They had heard. Dr Dreamy and nurse Drippy had been told we were cross, they had been told Ben was suffering and they were ready. She, nurse Drippy, as usual, was shocking.
Nurses, well good nurses anyway, have an intuition. It is true. We really do.
I have never nursed kids before but my intuition tells me what they need.
In fact, it is common sense. A child should not be in pain, they need not to cry out in agony. They need to be cared for and supported. They failed Ben, not me. I knew what he needed. Their job was to provide, they didn't though.
Another doctor at another hospital did though. He recognised how Ben was struggling. He helped him.
Dr Dreamy was quite informative today. He was adamant that Ben should not have further surgery unless a new tumour arises, the multiple surgical procedures have exacerbated Ben's tumour.
He told us that Ben would need a follow up in three months, six months and then a further plan would be set. He told us that Ben would have repeat scans.
We knew that.
The NHS do not pay for follow ups out here , but Dr Dreamy will waiver the fee. You see? I knew washing my hair and wearing a new dress would help!
Seriously though, he has offered free follow up care, should we choose it.
He told us a lot today.
I know that Ben will need to be followed up closely but he needs to be a normal boy again. If the cancer isn't a killer then for him, this this will be. He tells me every day. "Mum, I just want to be a normal boy"
But, what is normal? Ben has cancer, other children have asthma or diabetes. Others have critical problems. We are lucky.
Ben's scans for at least three months will look a total mess to the un proton educated, we were told. His throat is, and, will be battered. We knew that.
He told us, Dr Dreamy, how proton worked. I hung on his every word!There are cells (cancer) that are killed immediately and others that lie dormant that just get a blast. Of proton radiation that is. I didn't know this.
The dead ones are seen straight away, but the dormant ones are only killed when they try to multiply. It may take 2 years to see the full effects of proton.
Some of this I knew. Some of it, I still don't get. Maybe because I am not ready.
He was in full swing today, Dr Dreamy, so I tried my luck.
No, I didn't ask him out!, I asked him about prognosis.
It is dangerous to ask because you will get an answer.
Will you ever be ready for the answer that doesn't say that for definite your child will be cured. 100 per cent.?
He didn't tell us this.
He has never seen a tumour like Ben's, no one has.
In the U.S there has only ever been one case that he knows of that is similar.
He told us to use rhabdomyosarcoma cure rates as our benchmark. He said 75 percent.
Is that good? Is that ok? I have no idea. 100 percent would be ideal.
It is what it is.
I asked him what next.
He told me to cross that bridge .....
So we move forward.
Ben is in the 75 percent. Isn't he?
I could not ever tell him that he had to do this again. No way. For us he has to be cured. There is no choice. He / we - can't do this again.
Today though was a beautiful day, weather wise. We spent our afternoon by Jax beach. I love it there. We all do. It is refreshing, it is natural. It is beautiful.
I don't want to leave here. I really don't.
I pushed Ben in Chloe's buggy. I do that a lot now. He is too tired. But the fresh sea air? It must help?
We continue though, the way we know how.
He looks amazing today, that makes us feel better, I wish he would swallow though. The very hard part of this journey is knowing that your kids, at some point take control. When they do, you lose yours. They try to control what they can, regardless of their age. More often than not, their choices are rubbish. They are kids after all!
And then they choose well, just when you least expect it.
Ben helped a new friend tonight. He was amazing. Our new friend had a 3pm appointment. When we arrived at 840pm, she was still there, tired and feeling sick. She looked like a baby. Her mum was alone. She was crying. She was 11, our new friend.
She was in so late as she had had a panic on the table tonight. If she didn't get back on she would have had to have an anaesthetic. Ben talked to her. He told her how scared he was at first. He told he it was ok in the end. She went! She did it!
You see, he is kind. Very kind. He has always been more focused on helping others, not on himself. This self focus scares him. He doesn't want to be unwell.
I still am amazed each day by his courage and bravery. Don't get me wrong, he still has his moments! But you accept that. After all, I have mine. I am not unwell. I am not in any pain, well not physically anyway.
I have a lot to tell you right now, but the time isn't right yet.
So the in laws are arriving and that will definitely give Ben a further boost. A change of company is so refreshing. When you are used to people it is hard being just the four of us. I used to wish for peace and quiet. To not have to see people day in and day out. Now I am craving you. I am craving your company. I want to hear your stories and find out what you are doing. I want to see you. I want to be normal too, just like Ben does.
He only has 4 more protons to go. He is doing fantastically. I can't wait now until it is over and we can start the recovery process. I long for the day he is chosen to play a football match again or to be in a school play. I will never miss one of these events. Ever again.
His radiotherapy reaction is looking pretty good if I do say so myself. I have moved on from the aloe now as it stings. Plain old petroleum jelly, plenty of ice therapy and keeping is lubricated all the time seems to be doing to trick. I can't treat the inside for him. He won't do what I want him to do so we will just wait, wait until he heals.
I am getting tired now. Tired of being the mother with the child with cancer and tired of the constant roller coaster, but I know it is coming to an end.
In the beginning I embraced this journey, but it is tiring now.
In the beginning I didn't mind when people looked or asked what was wrong with him, but it is tiring now. In the beginning, though, I could not see any light and the end of this long tunnel. But it is there now. Shining so brightly. Within our grasp. We just need to get there. It won't be long now.
We have plans. We still have places to visit and things to see.
Amelia island, again. Clearwater.
Lots to do and running out of time.
The strangest things make me happy. If Ben has a poo. Oh, I am thrilled! Seriously I am. If I take his temperature and it looks good, I could throw a party! Seriously, I could! If he laughs or jokes and looks like he is enjoying himself. I am happy, content. Relaxed.
You see, your kids mean everything to you. I have realised now how in life, I have often been selfish. Self absorbed in my work or generally in myself. Trying to please others who really don't matter. Trying to find my inner peace. But I know now. I know that I feel at my best when my children are at theirs. Never will I put them second to anything. They are, and will always remain, my priority. They are mine. They are my life. Their wellbeing is my inner peace.
It is what it is..
So, it is time now to enjoy the weekend of no treatment. To entertain the in laws and to have some fun.
So for now I will leave you to enjoy your weekend too.
Love always - the Carters xx
Sent from my iPhone
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