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





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