Life for Derry tot Ross Barr has been a painful and gruelling battle for survival so far.
Against the odds, Ross recently celebrated his second birthday, as he was diagnosed at just five months old with a malignant brain tumour.
A brave little battler, he has come through months of aggressive chemotherapy which, because of his age, came with many horrendous complications.
Just last week, his doting parents Sinead and Joe were overjoyed when an MRI scan revealed the cancer was gone.
However, the child’s future is far from secure as he faces at least another two years of tests before he will be given the final all-clear.
Dad Joe, a former Commonwealth Games medallist, recently came out of retirement to participate in the arduous 1,350-mile cycle Race Around Ireland to raise funds for the Children’s Cancer Fund.
Despite winning the title and beating world champion Fabio Biasiolo into the bargain, Joe’s focus remains on his young son who he says is the real champ.
Joe and his wife Sinead today share the terrible ordeal their family has come through for the same reason that Joe got back in the saddle — to highlight the need for support for the charity.
“I did it for the charity, not for me,” said Joe.
“At the end of the day it’s not about me, but about creating awareness of all these children in Northern Ireland who have cancer and who need help.”
Life for Joe, his wife Sinead, son Reuben, four, and baby Ross changed forever when their baby’s cancer was detected. It was Sinead who noticed that her son’s head appeared to be growing at a different speed to the rest of his body.
She alerted her Health Visitor and after some tests and an MRI scan the couple were given the devastating news that their four-month-old baby boy had a large brain tumour at the back of his head.
Little Ross had a grade-four tumour which is the highest grade and most aggressive type of cancer.
Worse still was that it was attached to his brain stalk which is the main central nerve chord of the brain.
“Our world was shattered, things like this don’t happen to us, it felt like we were talking about a stranger,” said Joe.
Ross was admitted to the Paul Ward in The Royal and had to go through seven days of preparation for surgery to have the tumour removed.
His mum Sinead said: “When Ross was in surgery it was the longest day of our lives.
“The operation took 10 hours and when we went to see him in intensive care after the operation, nothing prepared us for how he looked — his tiny body was so pale and fragile, we were distraught to see him so vulnerable but on the other hand thankful and happy that he had successfully come through major surgery.
“We sat for hours staring at our beautiful boy, trying to comprehend the events of the past week and what lay ahead for our wee family.
“The neuro surgeon explained he was satisfied he had removed most of the tumour and all we could do in the meantime was wait for the tumour to be analysed.”
The couple had another blow when told little Ross’s tumour was malignant and aggressive.
“Once again we were devastated, this was the news we dreaded to hear,” said Sinead.
An intensive course of chemo began and for the next year the family’s lives revolved around the hospital.
“We juggled family life as best we could, taking it in turns to stay at the hospital with Ross while the other stayed at home with Reuben,” said Joe.
“The months passed slowly. Ross was allowed home from time to time and the journey to and from Belfast was terribly hard on his little body.”
The intensive chemo also brought another set of challenges.
Joe explained: “At one stage Ross was on the brink of permanently losing his hearing and because he was too young to talk, it would have left him deaf and dumb.
“We had a wonderful neuro surgeon Mr McCarthey who had to make the terrible decision of whether to give him one last blast of chemo and risk deafness or not give it to him and risk leaving cancer cells.
In the end he didn’t give it to him and waiting for the scan to see if the cancer had gone was almost unbearable for us.
“Fortunately it was the right decision and everyone is amazed at how Ross’s hearing has come back.
“His immune system was also destroyed. That in itself has presented a huge challenge.
“Ross has to have an MRI scan every 12 weeks for the next two years.
“He is vulnerable to infections and if he gets one he cannot have the anaesthetic he needs to have the scan and so it has to be pushed back.”
During the difficult months of the last year, the couple found relief and normality in a special facility near Newcastle called Shimna Valley run by the Children’s Cancer Fund.
Joe explained: “Whenever you go down there they do everything for you, so effectively it's a home from home and it allowed us to be together as a family again.
“It’s a fantastic place and the reason why I decided to do the race.”
While little Ross is currently clear of the cancer and making good progress with his walking and talking, the family’s life will never be the same again, says Joe.
“We now know every day we have got Ross is a bonus. What he has struggled with is unbelievable,” he said.
“It affects the family in so many different ways, it pretty much takes it apart and then you have to rebuild it again and you do rebuild it, but in a different way.
“It will be two or two and a half years before we get to a place where we can be relatively comfortable that the tumour might not come back.
“But between now and then there are no guarantees and we just have to count everyday as a plus.
- If you would like to donate to the Northern Ireland Cancer Fund for Children can do so by visiting the website justgiving.com/joebarr-racearoundireland .