Oscar Knox: Days out at the beach, trips to the cinema and now starting school
The Belfast Telegraph's Mum of the Year tells Stephanie Bell about the agony of finding out her son's cancer was back, but of the family's determination to see him make the most of every day
Published 27/01/2014 | 08:30
Leona Knox has faced many tough moments over the past three years and two weeks ago one of the toughest yet was letting go of her first born, Oscar, as he started school. For mum and son it was a huge wrench as it was the first time 'Wee Oscar' had ever mixed with children his own age because of his battle with cancer.
Oscar just loves school and the change in him in just two weeks as he discovers the pleasure of playing with his peers for the first time has given his entire family a welcome sense of normality and happiness.
Oscar was only three when he was diagnosed with a potentially deadly Stage 4 neuroblastoma.
The Glengormley child won the hearts of tens of thousands of people when his parents Leona (32) and Stephen (33) were forced to go public with his illness to try and raise £250,000 needed for life saving treatment in America.
More than 42,000 people continue to follow Oscar's battle through his Twitter account – 'Fearless Oscar Knox'.
Determined Leona has also won the admiration of many in her own tireless battle to give Oscar the best chance of beating the cancer he continues to fight.
The mother of two, whose youngest daughter Isobella is now three, was stunned last year when she was presented with the Belfast Telegraph Mum of the Year Award.
Her trophy takes pride of place in her living room. Leona says: "I was so overwhelmed I was shaking and crying going up onto the stage. It meant so much and it was such a nice feeling to think that people think you are a good mum; that's what every mum aims for.
"To hear my name called was such a shock. It was so empowering as a woman to sit in that room at the Belfast Telegraph Woman of the Year Awards and hear the stories and see what women are achieving, especially coming up against barriers and difficulties. I really loved the whole night."
Last year was especially hard on the family as in April their hopes and prayers appeared to be answered when a scan revealed that the cancer was no longer present in Oscar.
For the first time since he was diagnosed at the age of three Oscar was able to enjoy normal family outings without the risk of infection.
Many of the treats which other families take for granted were packed into three very special months as the Knox's enjoyed simple pleasures such as eating out together, trips to the cinema and even a holiday in Scotland.
Oscar was getting ready to start school in September and had his school bag picked and his uniform bought.
Starting P1 is a big step for every child but for Oscar just the ordinariness of being able to do what other children his age were doing was cause for major celebration for the family.
Tragically, though, it didn't happen. In July it became obvious very quickly to Leona and Stephen that the all-too-short reprieve from the disease had ended and their son was once again facing a battle for survival.
Leona recalls: "When we were told the cancer was gone everyone was euphoric but Stephen and I were living in reality and we knew it could come back again. We were shocked, however, at how quickly it happened.
"In July it came back even bigger and badder and it was a huge blow as we thought we would have more time living a normal life.
She adds: "In those three months we did cram in as much as we could of things Oscar had missed out on.
"We were really shocked and totally devastated when we found out it was back. We had just got him prepared for school and bought his uniform and he couldn't wait until September 1.
"It was absolutely heartbreaking for us and Oscar. He started treatment and he got really sick and suffered terrible side effects from the chemo.
"To go back down that path knowing what it had done to him before was just awful, it was a terrible time."
The couple also faced a new challenge in that being a little older, Oscar was more aware of what he was going through.
Earlier in the year they had explained in simple terms to him that he had cancer and was sick and had got better.
They then had to try and help him understand that he was sick again and was getting treatment that would again make him better.
Leona says: "That was so hard because he was so aware of it and we were trying to cope with it ourselves as well as manage his fears and anxieties."
Oscar is now on a less toxic chemo which he can receive at home once a month and which has given him back some quality of life.
While it is keeping the disease at bay it is by no means a cure and the family still has some tough decisions ahead in terms of treatment.
They are looking at options for treatment in both America and England.
In the meantime they are trying to stay positive and enjoying the simple pleasure of Oscar starting school.
Leona says: "We are in a good place as the treatment is working enough to keep the cancer at bay and Oscar is able to eat and run around and have fun.
"He started school on January 7 for two hours a day for the first week, which was enough for him.
"He is now going in for three hours a day and he absolutely loves it. We have seen a massive change in him and we are just amazed at what school brings to a child.
"He has spent his young life surrounded by adults and never experienced running around in a playground with other children and he is so happy.
"Even the wee things he is saying that he has picked up from other kids in school and just being a wee boy and having a bit of independence is wonderful. He cries at the weekends when there is no school.
"It's what we have craved so much, a bit of normality. When we needed to launch the campaign we were all thrust into the limelight. We never wanted it but we embraced it and needed it. We just want to get a balance now and protect Oscar and let him enjoy being a normal little boy."
Isobella, who was one when her older brother was first diagnosed with cancer, is also enjoying life at nursery school now that she has turned three.
Leona says: "All she has known is her brother being really ill and us caring for him and worrying about him and it is nice for her to see other kids who are healthy, which we hope is helping her to understand that life is going on normally."
Just last week, Oscar inspired a record number of people to attend an all-day blood donation session in Belfast City Hall as part of a new campaign supported by Leona and Stephen to help the Blood Transfusion Service attract much needed donors.
In just over a year Oscar has received 30 blood transfusions and almost 140 platelet transfusions and would not be alive without them.
Around 400 people answered the call on Tuesday during the special event at Belfast City Hall, which was led by the Lord Mayor Mairtin O Muilleoir who was the first to donate.
Leona says: "I don't think people are aware of what blood is used for and how many donors are needed. We just wanted to help make people more aware that adults and kids with cancer need blood and that there is a shortage of donors in Northern Ireland.
"We need new young donors who will become lifelong donors."
The event came about after the city council last year unanimously voted to back a motion put forward by Sinn Fein councillor Tierna Cunningham to host the session in honour of Oscar's battle.
People queued on Tuesday from early morning to get in and many waited up to three hours to give blood.
Leona says: "We are entirely overwhelmed and delighted by the numbers of people who turned up, and the length of time some waited to make their donation.
"Looking at all the faces in the crowd, strangers sitting patiently waiting for up to three hours, it was a really emotional thing.
"Anyone we spoke to said their reason for being there today was 'to help Oscar', 'because of Oscar', 'to help kids like Oscar', and many were young first time donors – it was such a humbling experience.
"Some were terrified of needles and visibly anxious, others hadn't given blood in over 30 years and had been inspired to start again, and many were wearing school uniforms or had just completed exams.
"Everyone said they felt so good afterwards, knowing that they have made a difference to someone in need.
"We tried to speak to as many people as we could, but if we didn't get to speak to anyone we would like them to know that we are entirely grateful for what they did in Oscar's name.
"It was another one of those times when words just aren't enough."
All of the new donors are now registered on the NIBTS database and most pledged to return to local sessions in the near future.
Leona adds: "Nothing makes what Oscar has been through worth it but if he has to go through it we want to try and turn it into a positive and with 8,000 to 9,000 more donors needed every year, we are just glad we can offer some help in his name."
Top bakery backs Mum of Year
Irwin's Bakery, Northern Ireland's largest independent plant bakery, is the sponsor of this year's Mum of the Year Award.
The family owned company, based in Portadown, has been baking bread for nearly 100 years and also has a strong presence in Britain and Ireland. Particular favourites are its famous Nutty Krust plain loaf, Irwin's Softee and its muffins and rolls.
Employing almost 450 people locally, Irwin's has a growth strategy based on product quality, tradition and innovation, and also plays a major role in the local agri-food sector and the wider Northern Ireland economy.
In the last 12 months the progressive firm has added a number of new lines including Irwin's Bagels, Irwin's Fruit Toast, Irwin's Sandwich Skinny's and undertaken re-branding of the Rankin Selection range.
Hannah Robinson (below), the company's marketing manager, says: "Irwin's Bakery has been baking bread for families across Northern Ireland for over 100 years – and understanding our consumers means really appreciating the work which goes into being 'mum'.
"We're delighted to continue our sponsorship of the Mum of the Year category, and have been privileged to meet and hear the stories of so many inspirational women who represent the extraordinary courage, devotion and hard work of mums across Northern Ireland."