In his first in-depth interview since his little boy fell gravely ill in the US, Stephen Knox, from Belfast, reveals the full anguish the family faced and why they urgently need more cash.
What started as a journey of hope for the parents of Belfast tot Oscar Knox turned into their worst nightmare last week when doctors in the US feared they may lose their brave boy.
Little Oscar’s life hung in the balance for four days and nights after his lung collapsed while he was being treated for a serious heart condition which was picked up shortly after his arrival in the US.
Leona and Stephen Knox left Belfast with little Oscar two weeks ago prepared for a six-month stay when their son would receive a cutting edge treatment to halt progression of his aggressive cancer.
Instead the couple found themselves being told to prepare for the worst.
They endured an agonising vigil as little Oscar fought for his life, with doctors expressing their fears that he might not make it.
Speaking from the hospital in Philadelphia where a now stable Oscar remains in intensive care, his dad Stephen said: “It was very scary. We were told to prepare for the worst.
“The outlook was bleak and we thought we were going to lose him. His lung had collapsed and he wasn’t responding to treatment.
“He was linked up to so many machines. They then decided to use an experimental technique which had never been used before in that situation and thankfully it worked.
“This is the best children’s hospital in the world and if we had been at home when it happened Oscar might not have made it, as they wouldn’t have had the expertise to save him.”
Oscar won the hearts of people all over the world when his brave battle with an aggressive childhood cancer was charted on Twitter, attracting thousands of followers.
The family raised £280,000 in a few months to take him to America for immunotherapy treatment.
However, shortly after arriving in Philadelphia they received a crushing blow when doctors discovered Oscar had the potentially fatal heart condition, pulmonary hypertension, which meant he could no longer receive the immunotherapy treatment his family had pinned their hopes on.
Pulmonary hypertension is high pressure inside the pulmonary arteries.
It is a serious medical condition as it results in damage to the right-hand side of the heart.
This leads to symptoms including shortness of breath, fatigue and feeling faint or dizzy.
If it is not treated, the condition can cause heart failure
Oscar was admitted to intensive care with plans to fly him back home when his condition stabilised.
However, his lung collapse left him gravely ill.
Stephen says: “Shortly after he was admitted to the hospital when they were carrying out tests, they did a heart echo which picked up the problem on the right side of his heart which pumps blood round the lungs.
“We don’t know why he developed it; it could be because of the chemo or stress. He was linked up to all sorts of machines which, even at that point, was pretty scary.
“Then his lung collapsed and he was linked up to even more machines but they didn’t hold out much hope.
“It was a really tough couple of days and hard for us being so far away from friends and family.”
The couple have been keeping supporters updated on Oscar’s progress via his Twitter account and on their blog on his fundraising website.
They had described in heart wrenching detail the agony of those few days when they thought they had lost their little battler.
“We each said our private goodbyes. It was surreal, and heart wrenching, to say the least. The doctors wanted a discussion with us about when is enough, which was very traumatic. When is enough enough? When do you give up on your child? An impossible scenario to comprehend and one we never want to face again.
“We weren't being asked to turn off machines, but it was explained to us that the treatment Oscar was receiving wasn't working, and the next step was for them to insert a breathing tube, a traumatic procedure that he wasn't likely to survive.
“Did we want to put him through that trauma, when it was likely to end in his death? Or do nothing and let him slip away?
“We certainly weren't giving up, but we actually felt like his little body had had enough this time, and we didn't want to have to agree to anything that would add to that pain.
“After everything he has come through, the fight he has put up for his life, it was cruel for his fate to be placed directly in our hands. We know how it must have seemed to those doctors — a critically ill child, with a rare genetic disorder, a rare cancer, and a rare heart and lung disease ... that child doesn't have much of a chance.
“But it’s Oscar, and he beats the odds to achieve the impossible, and you can't give up on him.”
In the end the decision was taken out of their hands when little Oscar once again fought back from the brink. Stephen said: “Oscar is brilliant. He is such a wee fighter and deals with everything so well.
“He is now stable and eating well and smiling and his ability to deal with it helps make it easier for us.
“You do get conditioned to it and now we can look at it as just another hurdle we had to overcome.”
Oscar will need to go straight to intensive care when he returns home hopefully next week.
Doctors in America are currently in talks with their colleagues in Belfast and Great Ormond Street children’s hospital in London to decide where best he can receive the care he needs.
Stephen added: “They are hopeful that we will be able to get home soon but we are not sure yet if it will be Belfast or London.
“Oscar will have to be flown home by air ambulance and we just want to get him back near family and friends again.”
The family has not yet received the final bill for Oscar’s medical treatment but fear that every penny of the £280,000 they have raised will be needed to cover it.
It leaves them with the new pressure of starting from scratch to raise funds in the hope that Oscar will be able to receive treatment for his cancer in the future if his heart condition stablises.
Oscar was born with the rare condition, Jacobsen syndrome that can cause heart, stomach and breathing problems, as well as blood disorders and learning difficulties. He was then diagnosed with stage four neuroblastoma — an aggressive childhood cancer which could kill him.
He has already endured painful chemotherapy and radiotherapy treatments in an effort to beat the disease.
The family had hoped he would receive immunotherapy therapy treatment in America to clear up any neuroblastoma left in his body.
The treatment would also have boosted his immune system to fight the cancer if it was ever to come back.
It took just over three months to raise the funds.
During that time Oscar’s heart-melting smile and courage in facing his cancer won him a huge celebrity following which includes Olympic medallist Paddy Barnes, Westlife singer Nicky Byrne, the late Ulster rugby player Nevin Spence and Girls Aloud singer Nadine Coyle.
Now every penny of the money which it was hoped would pay for cancer treatment may be gone.
Stephen says: “It is unbelievably expensive and we expect that all the money will be taken up by medical fees. We don’t know what will happen now but there is a possibility that the heart condition could fix itself through time. That would mean he could receive treatment for his cancer but we don’t have any money now to pay for it.
“We desperately need to continue the fundraising.”
The family has been overwhelmed by the support of the Irish Community in Philadelphia who have also taken little Oscar to their hearts.
A Team Oscar Phili Fund has been set up and a number of fund raising events are being held in the US city to help the Belfast tot.
Stephen says: “The Irish community here have really rallied round us, bringing us meals and presents and so many people have been calling at the hospital and even bringing money, it has been unbelievable.
“We have also been keeping an eye on the news back home and its really keeps us going to know that so many people are supporting us and keeping the fund going.
“For us it is yet another hurdle to get over. Oscar is a wee fighter, he is brilliant and he is always smiling. Seeing him happy and in good spirits is what has kept us going.”
How you can help Oscar
You can help raise vital cash for Oscar’s treatment. Some people have organised pub quizzes, discos, runs, car washes and bag packing at shopping centres. Others have placed collection boxes in their workplaces or local shops or obtained permission to collect at certain events. For further information and to request collection boxes/buckets and posters, e-mail firstname.lastname@example.org. Make a donation at the JustGiving.com/OscarAppeal page. Keep up to date at oscarknox.blogspot.com.