HE USES THE WORD CANCER, AND HE KNOWS HE HAS A LUMP

Family speak about the heartbreakeak of having a desperately ill child

THE family of a six-year-old boy battling a rare strain of cancer have spoken of the heartbreak of having a desperately ill child.

Harri Gillen was diagnosed with a rhabdomyosarcoma tumour, a rare and aggressive cancer that only affects a few UK children each year, after parents Liz and Lee discovered a lump on his left forearm in November 2014.

After being given chemotherapy that finished in June 2015, Harri was given the all-clear.

But last year the tumour returned and the youngster is being treated again.

“He’s fine in himself but the chemo makes him very poorly,” dad Lee Gillen said.

“He vomits quite a lot and he is often reluctant to go to the hospital.”

Harri has a week of treatment and then two weeks off.

“There are things he cannot do, like go swimming, and he cannot go to places like cinemas. His immune system is suppressed and he is vulnerable to colds.”

He has a lung infection at the moment.

“Because he has had surgery on his right arm twice they have removed two of the biggest muscles in his arm,” Lee, 45, said.

Harri, from Rhiwbina, Cardiff, does not know the full extent of his lifelimiting condition.

“He uses the word can- cer, and he knows he has got a lump and we try to involve him as much as we can in terms of terminology,” Lee said.

“We give him as much information as we think he can handle.”

There are times when the family struggles to cope. “But we see so many families in similar situations and there is always someone worse off than you,” Lee said.

Lee discovered the lump in Harri’s arm when he was putting his son in his pyjamas ready for bed.

Their “worst fears were realised” when they were told it was cancer.

“It’s frightening and it is scary and you feel vulnerable,” the dad-of-two said.

Since 2015 the family and their friends have been raising funds for charity by climbing up Pen y Fan 10 times in 24 hours in a challenge called “Ten-y-Fan.”

Last year £50,000 was raised for cancer charity Latch.

This year it is hoped a similar sum will be raised for charities Dreams and Wishes and When you Wish Upon a Star.

“We have got 150 who have registered for the event so far,” Lee said.

“Last year we had 180 to 200. We’d like to get 300.”

Harri managed a climb last year and it’s hoped he will be able to join in the event this year, on May 13.

For more information visit http://www.ten-yfan.org/