Dear Benjibob

Dear Ben

This time last year you were full of life and enjoying your time with your friends.  We went on holiday to Dubai and you had a fantastic time at the waterpark.  You will be like that again soon.

In September, our world changed when you went into the hospital.  The day that you had your first operation to remove what we thought was a nodule on your vocal cord was terrifying.  What came next was even more frightening.

In September you were referred to a specialist team to have the lesion removed.  We were assured over and over again that the lesion was benign and we reassured you of that too.  You will remember that two weeks after your first surgery your airway obstructed and we ended up in A+E and were then blue lighted into London.  Do you remember?  It was the most frightening day of my life.

From that point the journey changed direction.  No one knew what the lesion was but we had our suspicions.  The Doctors called it a tumour, but again assured us it wasn't cancer.  How could it be?  Children don't get cancer in their throat.  That's what we were told. 

Your life changed Ben, as did all of ours.  Scans after scans and various tests.  Chasing results and praying.   Surgery every two weeks as the tumour just kept growing.  In between all of this, you went to school.  You still liked life and you continue to do so.

You have asked me and Daddy so many times why this has happened to you and we truly do not know.  You have cried and told us is not fair.  It is not fair, you are completely right.  But we can't change it and you know that.

You have been through so much, dragged on train after train to the hospital.  Had scans, operations to have your hickman line inserted and your gastrostomy tube put in.  You have completed 7 cycles of chemo and dealt with the worst side effects imaginable. 

You have not complained, not really.  You have dealt with this head on and with dignity and determination.  You ENT Doctor always comments on your strength and you like that.  He is right, you are strong.

We finally received our diagnosis in December.  You have Rhabdomyosarcoma of the larynx.  You are lucky they tell us as it is localised and hasn't spread.  You are lucky because the aim is to cure your cancer.  You are lucky because the type of Rhabdo. that you have is Embryonal and has a better outcome.

I can use technical terms now with you Ben as you understand them all and in fact use them yourself.

With your diagnosis came the change to your treatment plan and the need for radiotherapy.  The Doctors wanted you to have Proton Beam therapy in Jacksonville and that is where we brought you and here were are.

Ben, your journey has been incredible.  You have dealt with each hurdle with a mature and sensible approach.  I am proud of you every day.  I have seen you very very frightened, only a couple of times on this journey Ben and believe me you have every right to be afraid and every right to be cross. 

You aren't though, letting this beat you.  You still do bonkers things and we have our fights.  You still know which buttons to push!

Ben, you have raised a fantastic amount of money for your charity and have such a kind heart.  When I watch you with the other children that have cancer, you would never know that you are affected too.  You care for others.  You are so very kind.

Ben, you make me proud of you every minute of every day.  I am with you always through this and throughout your life.

Your strength inspires me and many other people.

You are an amazing little boy who is growing into a lovely young man.

I love you Ben and I always will.

 

Keep going Darling and keep fighting, you are almost there.

 

By the summer you will be a happy and lively boy again.  I can't wait to see you swim and play football again.  I can't wait until I see you playing with your friends again and getting up to mischief.

You are my world

Love you always Ben

Mummy xxxxxxxxxxxxxxxxxxxxxxxxx