An 11-year-old whose younger brother has a rare brain tumour will be facing his own challenge this weekend to thank those who have supported the family through "an horrific 11 months".
Dylan Cone, from Istead Rise, Gravesend, helps his parents look after his sibling Zachary Staples who was diagnosed with an aggressive tumour last year.
Dylan in training for a mini marathon
Zac's parents, Karen and Luke Staples, noticed he was becoming very drowsy and withdrawn and was sick a few times in the morning so they took him to their GP who ordered blood tests.
But after becoming more and more concerned, they rushed him to A&E.
A CT scan revealed the tumour and he was blue-lighted to King's College Hospital in London for an emergency operation.
Mum Karen said: "Dylan came home from school that night and did not see his brother for a month. The impact has been so great, but he is such a wonderful boy – they are both special.
"Since Zac’s diagnosis it has been a nightmare – it has really been an horrific 11 months. Now we are just trying to enjoy the good days we have with him.
"His tumour is an embryonal tumour with multi-layered rosettes. It is a very rare, aggressive tumour occurring in under fours. I do not have exact numbers, but I only know of a handful of cases in the UK.
"We have recently been told his tumour has relapsed and we are devastated. We have exhausted all avenues of treatment."
Since his diagnosis, the four-year-old has spent four weeks in King's, undergoing three operations to remove the tumour.
Later, the family was based at the Christie Hospital in Manchester for six weeks so he could receive 30 sessions of proton beam therapy, a less damaging radiotherapy particularly suitable for developing brains.
Between September and December, Zac was an inpatient at the Royal Marsden Hospital for three weeks out of every four, having high dose chemotherapy with stem cell transplant.
Karen said: "Obviously Covid made everything so much more difficult. We have had to juggle things all the time. Only one parent could be with Zac at a time, so myself and my husband, Luke, took it in turns, with one of us staying at home with Dylan. Sometimes Dylan would also be with his dad."
Zac finished his aggressive round of chemotherapy just before Christmas but then found out the tumour had returned.
Karen said Zac and his brother Dylan have a really "close relationship" and the family involve him in an age-appropriate way in Zac's care.
She said: "They always think of each other. If one of them is given something, they always want to make sure their brother has the same. Dylan even wanted to spend some of his Christmas and birthday money on Zac.
"In a way we have tried to compartmentalise things for Dylan. We do not just want him to be the brother of a cancer patient. At school he can get away from that, and he is doing really well there."
The whole family receive help and support from the ellenor hospice in Coldharbour Road, Northfleet, including play therapy and counselling.
As a thank you, Dylan has signed up for a mini marathon of 2.62km at Gravesend Cyclopark this Sunday and has already raised more than £9,000 for the hospice.
You can donate to the fundraiser here.
