When Felix White, aged four and a bit, held his lightsaber, he truly believed he had phenomenal powers. ‘And in many ways, he did,’ says his mother Colleen, 48, a former management consultant.
‘His incredible kindness and spirit, his immense love of life – no matter what it may throw at you – and his amazing ability to live each moment fully, inspired us all to get the very most out of every day.’
He loved ‘secret path’ walks near the family home in Hove where he was always looking for the hole in the hedge that would lead into ‘lost worlds’ or adventure.
Felix’s real-life journey into the complete unknown began in February 2009 when one evening during supper he said: ‘Don’t make me laugh! My back is hurting.’
The GP was reassuring, but when Felix didn’t want to get on a trampoline a week later with his identical twin Elliot, Colleen was worried enough to take him back. ‘The doctor felt his tummy all over,’ Colleen recalls. ‘Then she turned around and her face was a different colour. I said: “You felt something didn’t you?”. She nodded.’
Colleen took Felix straight to the Royal Alexandra Children’s Hospital in Brighton where a scan showed a growth in his abdomen, and later that night, they were referred to the Royal Marsden Hospital in London.
While his father Matt, now 52, a management consultant, scrambled childcare for Elliot and the twins’ elder sister Grace, Colleen struggled to take in the enormity of what was happening.
It was only as the ambulance, with Matt following in the car, drew up outside the Marsden and she saw the words Institute of Cancer Research that the penny dropped.
‘There was the starkest realisation something absolutely catastrophic was happening,’ recalls Matt.
Felix was diagnosed with neuroblastoma, a particularly aggressive form of childhood cancer. It starts in the nerve tissues and usually affects those under five.
By the time children are diagnosed – around 100 each year – the disease has often already progressed to a high-risk stage. Four out of five children relapse after treatment and once relapsed, the survival rate is less than 10 per cent.
Felix’s tumour, which was just above his left kidney, was stage four, the most advanced form. ‘Our consultant, Professor Andy Pearson, was amazing at keeping us focused on the next step,’ says Colleen. ‘He said: “We are confident we can keep Felix going.” And that was all we wanted to hear.’
Chemotherapy started the next day – Felix had 19 rounds over 17 months to reduce the tumour, followed by surgery, then a bone marrow transplant and radiotherapy on the main site, and then on a secondary cancer at the back of his head.
‘Felix approached all this with such amazing trust and grace, we were able to hold our own fear inside, because he felt none,’ Colleen says.
He named his chemotherapy lines ‘blasters’. The drugs were ‘Power Ranger juice’ and radiotherapy became ‘beaming’.
‘I’d wake and feel this overwhelming wave of horror that this terribly wrong thing is happening, then Felix would ask with a big smile: “Are we blasting or beaming today?” In the end, Elliot and all their four-year-old friends wanted “blasters”, too.’ At night, when Felix had fallen asleep, Colleen would sit up late reading research papers, feeling her heart fall apart.
With no standard treatment protocols for relapsed neuroblastoma, many parents head to Europe or the U.S. to take part in clinical trials which offer a shred of hope.
Trio: Elliot (left) and his twin brother, Felix, pictured with their elder sister, Grace
When doctors in the UK could do no more, Matt and Colleen piled the kids into the car and drove to Germany where Felix could get a drug called ch14.18.
A form of immunotherapy, which harnesses the power of the immune system, this has been successful in treating neuroblastoma but isn’t available on the NHS due to the cost. A small charity, Solving Kids’ Cancer, paid the £60,000 for the treatment.
But it was tough on Felix. ‘He had to have injections in his legs and had side-effects such as itching and lost a lot of weight,’ says Matt. ‘But at the end, we felt brilliant because we got a clear set of scans.
‘We went on holiday to Mexico; Felix was on amazing form, and got fitter and fitter. We went back to Germany expecting the doctor to say: “You’re done!”. And I’ll never forget his response. He said: “Take a seat, it’s not over yet.” ’
Matt says he was more deeply shaken by those words than by the initial diagnosis. ‘At diagnosis, you haven’t got a clue,’ he says.
‘But by then I knew that if he relapsed, he couldn’t be saved. We were both in a very bad state, but me more than Colleen. I didn’t have any more hope, I felt totally lost.’ They walked back through the hospital together in silence to find Felix happily drawing.
‘He looked at us with those blue eyes and we thought: Well what are we going to do? Give up?’ says Matt. ‘Colleen did what she always does. She got on the phone and found out where the hope is. That’s pretty much what she did for the whole two-and-a-half years.’
Within a couple of hours, Colleen had Felix’s doctor from the Marsden on a conference call with Dr John Maris, head of paediatric oncology at the Children’s Hospital of Philadelphia in the U.S. which offers clinical trial options for relapsed neuroblastoma not available anywhere else in the world.
At the end of February 2011, Felix was given another form of immunotherapy. But he developed a stutter, and a scan showed the cancer had moved to his brain.
Legacy: Sadly, on the morning of August 23, 2011, Felix had a fatal heart attack in NYC – but his death has helped countless other children
Brain surgery is not normally attempted in neuroblastoma, but Colleen’s response was to talk to Memorial Sloan Kettering Hospital in New York, where another expert had expertise in removing tumours.
‘Dr Maris considered, listened, discussed with other doctors and agreed to operate,’ says Colleen. ‘Two days later, Felix had the tumour removed, and two hours after that he was sitting in bed eating a cheeseburger.’
Colleen and Matt never once considered giving up treatment.
‘Felix was the happiest boy in the world, he wasn’t tired, he wasn’t depressed, and we always felt, that if anyone was going to survive this, it would be him,’ says Matt. ‘We took all our cues from him and while he was happy and healthy we had to keep trying.’
Solving Kids’ Cancer paid for Felix’s treatment in the U.S. too, a cost of around £300,000.
‘No one asked: is this child’s life worth this scan or surgery,’ Matt says. ‘They said: “You focus on Felix and we will take care of the bills.” ’
Then in June, four days after a once-in-a-lifetime trip to Disneyland, Felix complained his lungs hurt. ‘And then I felt real panic because that was the first time Felix had suffered pain, and it was unbearable to me,’ says Colleen.
Felix had more surgery, but following radiotherapy, he developed pneumonia. To give doctors a chance to clear Felix’s lungs, he needed to be put into an induced coma with a ventilator to do his breathing.
Colleen still finds thinking back to this moment unbearable. ‘The hardest thing was that Felix was talking and laughing and playing Lego when the team came in and said: “OK we’re ready to do it . . .” It was really shocking.’
She falters, looking to Matt to find the words she can’t say. ‘I don’t think any of us clocked that that was goodbye.’
‘As Grace and Elliot left, Felix said: “See you guys tomorrow.” Even when there was so little hope, we all had so much belief this would be just another procedure Felix would get through,’ says Colleen. ‘Even his doctor said: “Felix will show us the way. Maybe the little boy from England will be the one to beat this thing.” ’
The little boy from England never regained consciousness. Matt remembers talking to him and telling him stories and desperately watching his heart rate fluctuate on the monitors. ‘Felix was by then so grey, so un-Felix,’ says Colleen.
‘There was this constant internal struggle with wanting it all to be over for him, but being desperate not to let him go.’
During these unimaginable days, Colleen and Matt signed an agreement that in the event of their precious boy’s now inevitable death, his tumour cells could be drawn and used for research. ‘We thought some good has to come from this,’ says Matt.
On the morning of August 23, 2011, Felix had a heart attack. Matt was there, but Colleen had left briefly to get books and shoes for Grace and Elliot who were starting school the following week.
‘We got in the car to go back to the hospital and Grace and I were crying, and Elliot looked out of the window and said very calmly: “This is the way the story was always going to end.” Until that moment I think we had done our job of protecting them from worry really, really well.’
Felix hung on until the family arrived. ‘We were all with him, talking to him and stroking him,’ Colleen says. ‘I said: “It’s OK, Felix knows the plan . . .” And then we watched his heart rate drop to 75, 60, 40 then zero. And then it was over and everyone sat in silence.
‘Elliot was sitting playing Lego, then he got up on the bed and straddled Felix, holding his arms like a marionette. For a moment it felt shocking, but for Elliot it was completely normal to want to feel what death meant for his twin.’
Felix’s blood was drawn moments afterwards and his cells have since been used to help develop successive versions of a group of drugs, ALK inhibitors which turn off the cancer-causing ALK gene. When tested in mice with neuroblastoma, the survival rate was high; the new drug is now being put forward as frontline treatment for children with Felix’s disease.
WHAT IS NEUROBLASTOMA?
Neuroblastoma is a rare type of cancer that mostly affects babies and young children.
It develops from specialised nerve cells (neuroblasts) left behind from a baby’s development in the womb.
Neuroblastoma most commonly occurs in one of the adrenal glands situated above the kidneys, or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis.
It can spread to other organs such as the bone marrow, bone, lymph nodes, liver and skin.
It affects around 100 children each year in the UK and is most common in children under the age of 5.
The cause is unknown. There are very rare cases where children in the same family are affected, but generally neuroblastoma doesn’t run in families.
Source: NHS Choices
The impact he’s had on medical research is best described by Dr Yael Mosse, the doctor who drew his blood for the research. ‘I am not sure I can begin to share with you the impact your beautiful son has had,’ she wrote to his parents.
‘It is far-reaching and truthfully immeasurable. I can tell you that Felix is always with me, in everything I do – in the lab and in the clinic. He is the overarching motivation for our work and I make sure everyone knows about his journey . . .
‘And about the gift you shared with us when he died . . . I drew his blood myself at the deepest and darkest time for your family – and when I walked his cells back to the lab, we vowed do better for other kids. This has been an immense privilege for me that I never take for granted.
‘Thanks to Felix, we’re moving ALK inhibition upfront for kids newly diagnosed with high-risk neuroblastoma. Thanks to Felix, some very special children are living longer and with exceptional quality of life.’
Seven years on, Colleen doesn’t feel the pain any less. Every milestone Elliot reaches is bittersweet: she sees Felix’s life unlived and Elliot, now 13 and Grace, 16, feel it, too.
‘There are times when the pain is so immense and so deep it takes my breath away.’
Matt is still haunted by horrific images from Felix’s last weeks. But neither ever doubted they did the right thing in fighting to the very end. ‘Felix’s story is a love story,’ says Colleen. ‘A love story with the saddest ending.’
The last day Colleen worked as a management consultant was February 13, 2009 – the day she took Felix to the doctor. She’s now training to be a midwife. ‘I knew I wanted to work in the NHS after all the amazing things it had done for Felix and our family,’ she says.
The biggest fear for his parents is that beyond the family, Felix will be forgotten. But it is so unlikely that will happen. The bank of Felix’s cancer cells has been officially changed from COG-426 to ‘Felix’, so every day, his name rings out in the lab where scientists work to find treatments to end the devastation of neuroblastoma.
‘Felix White will never be forgotten,’ says Dr Maris. ‘My own personal belief is that this is only just the beginning of the impact he will make on medical science.’