Ben was 12 years old and had just settled down in secondary school when one Friday evening in October 2012 he had just got back from school and he told us he had found a lump on his neck.
We took him to the doctors and they went through the usual things like antibiotics and viral illnesses but weeks went on and still no change.
They sent him for various scans and that’s when they diagnosed him almost two months after finding this lump with a cancer of the soft tissue called rhydomyosarcoma. He was in no pain or discomfort at this time, they did a biopsy and inserted a Hickman line ready for treatment to beat this nasty disease.
The treatment started on the 31st December 2012 where he went to have his first block of chemotherapy, but the tumour had grown since the placing of the Hickman line and caused the line to kink which would not allow anything through it. He was in theatre the next day, 1st January 2013, where another line was placed on the other side and the old line removed. He started his first block soon after getting back on the ward that same day.
After 2 block treatments in the February they said it was inoperable due to its location and said radiotherapy was also needed. But because of the area it was in they spoke about proton beam therapy instead of the conventional radiotherapy. This wasn’t available in this country so he was forwarded to the panel who decided the funding was there for him to travel abroad to receive the treatment.
The next few weeks went by and we were told to make plans to travel to Jacksonville in Florida.
We flew out in March and spent 10 weeks where Ben received 30 sessions of proton beam therapy and also chemotherapy.
On our return the tumour had started to shrink dramatically and was barely noticeable. Ben continued with chemotherapy until December 2013.
We were advised while this tumour was at its smallest it would be in his best interest to try to remove it.
So Ben was in theatre for 7 hours in March 2014. The tumour was removed but with no clear margins so they were not confident that had removed it all. So as a safety precaution they gave him another 6 blocks of chemotherapy.
However, the tumour started to grow back almost immediately after surgery with the chemotherapy having no affect. It was at this point that Ben’s Clic Sargent social worker spoke about making a wish.
She said “make it a good one as it’s a wish”.
So after some careful thought and discussions Ben wished to have his own tractor, which along with f1stock car racing and farming, these were his love of life.
Josie’s Dragonfly Trust came forward with a donation to help Ben with his tractor and us as a family gave the rest to get him a tractor he wanted.
It was an oldish tractor but he loved it and it got him out and about when he was feeling up to it.
They gave him 2 more weeks of conventional radiotherapy to try to slow the growth. It now came to light that Ben had fallen into the 10% bracket of being chemo resistant and the only thing that had slowed the tumour down was the proton beam therapy he received in the USA.
He was then to try various clinical trials as options were becoming scarce.
They had no affect and from then on his weight started to drop off him and eating was a problem.
He had a stomach peg put in to try to give the nutrition he needed.
And after more clinical trials the words that will always haunt us for ever were said…”there is no more treatment available for Ben.”
He was put on palliative care and 4 weeks from then Ben sadly grew his wings on the 3rd May 2015 at home peacefully.
-Written by Howard Turner, Ben’s dad.