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


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