Thank YOU for giving us hope: Zac Oliver’s mother reveals the elation and setbacks of a tumultuous week for her son days after his first pioneering cancer treatment – paid for by generous donors
- Zac, four, flew over for treatment at the Children’s Hospital of Philadelphia
- His mother, Hannah, reveals her emotions after she raised enough money to go
- Donations, including £100k from a Daily Mail reader, made it possible
- The hospital provides world-class treatment for his rare form of leukaemia
Just a few days after Zac Oliver learned he would be flying to America for potentially life-saving cancer treatment, his mother Hannah received a call from the mother of another desperately sick child.
‘We saw her little girl six weeks ago when Zac was having bone marrow tests and she was fine,’ says Hannah. ‘They were both running around having fun. She was happy.
‘Her mum took her to hospital because her temperature had spiked, which is normal in this world of childhood cancer.
‘She thought she’d be taking her home in 48 hours, but they sent her to a hospice and told her to start preparing for the end. The next day she messaged me: her daughter had died.’
Four-year-old Zac Oliver with his mother Hannah at the Children’s Hospital of Philadelphia where he went to receive world-class treatment
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Hannah, 37, is close to tears as she recounts this. This desperately sad story is another reminder of how precarious, and precious, every moment is for parents of a gravely ill child.
And how grateful she is for the generosity of the public in giving her own little boy a chance.
Zac is the four-year-old with the mischievous grin who captivated the nation when his story became public earlier this year.
Suffering from an incredibly rare form of leukaemia, his family wanted to send him to America for pioneering treatment not available to him in this country — therapy which could give Zac a fighting chance of survival.
When they made his plight public and launched a herculean fund-raising campaign, public donations poured in — including a £100,000 gift from an anonymous Daily Mail reader — enabling them to reach the £500,000 needed for the trip.
Hannah is truly touched by the many acts of kindness that have made her son’s treatment possible, particularly the mystery stranger who read about Zac’s story in this newspaper and has asked her not to reveal their identity.
‘When we reached our target, it was fantastic — the best feeling ever — but, within a few days, it suddenly hit me how quickly things can change when you have a very sick child,’ she says.
Today, Zac is very much alive.
If it wasn’t for the ever-present Hickman tube (a catheter to administer chemotherapy) in his chest — which Zac calls his ‘wiggly’ — it would be easy to forget how ill he is.
I met him this week in Philadelphia just before he began the first phase of the revolutionary immunology treatment.
He flips between giggles and childish huffs in a heartbeat, just like any other four-year-old.
Zac underwent chemotheraphy at the Princess Royal Hospital in Telford before travelling to the US
When they made his plight public and launched a fund-raising campaign, public donations poured in — including a £100,000 gift from an anonymous Daily Mail reader — enabling them to reach the £500,000 needed for the trip
He chatters away about dinosaurs and is very proud of the red sweatshirt a family friend made for him bearing the slogan I’m About To Be Genetically Modified. He doesn’t, of course, know what it means.
The pioneering Car-T cell therapy, which modifies the body’s immune cells to help fight cancer cells, gives him a 60 to 80 per cent chance at life.
Without it, he’d be unlikely to reach his sixth birthday.
He had the first stage of therapy at the Children’s Hospital of Philadelphia on Wednesday when T-Cells were harvested from his blood ready to be modified in a laboratory over the next six weeks, before being injected back into his body in January.
Hannah arrived in the States only 36 hours before Zac’s treatment and is often close to tears.
They spent the evening before his treatment playing a dinosaur boardgame in the comfortable apartment provided by the hospital for their stay, which Zac calls his ‘pretend home’.
He didn’t have a clue what was happening the following day.
Hannah, an occupational therapist from Shropshire, is grateful beyond words for the support of the ‘wonderful’ people of Telford and the generosity of that anonymous Mail reader, as well as celebrities like Simon Cowell and Dire Straits guitarist Mark Knopfler who’ve made it possible for them to be here.
But it’s not an easy time. Hannah says the day she spent with Zac at the hospital was ‘the most horrendous of my life’.
‘Zac was very frightened and extremely angry so there was lots of screaming. It took three of us to keep him on the bed.
‘In the end, they had to give him an anaesthetic to knock him out. You keep telling yourself it’s for his own good that you have to do these things.’
Hannah, an occupational therapist from Shropshire, is extremely grateful for the kind donation of the anonymous Mail reader, as well as celebrities like Simon Cowell and Dire Straits guitarist Mark Knopfler
After a 45-minute operation to insert a cannula into his neck, Zac was hooked up to a machine for five hours while his blood was pumped back and forth into his body as the T-cells were collected.
Twelve hours later, after being discharged from hospital, he developed a rash and was briefly readmitted.
Thankfully, he is now fine and looking forward to visiting a dinosaur museum before he returns to the UK on Monday.
But Hannah continues to worry.
‘When Zac began to lose his hair with the chemotherapy, I shaved off some of mine to try to ease his fear. I said, “It’s OK — look, Mummy is going to lose her hair too,’’’ says Hannah.
‘God, I would have given anything to take away that tube in his neck.
‘It was like when he came round from the anaesthetic after they’d put the Hickman line in at Birmingham Children’s Hospital. He screamed and screamed and screamed.
‘He bit the doctor and kicked the nurse. He ended up giving himself a hernia because he literally screamed that hard and threw himself around the bed and no one could calm him. He was petrified.’
Four out of five children with Zac’s rare near-haploid strain of lymphoblastic leukaemia die, but at four years old, he is too young to know how desperately ill he is.
Hannah has only told him that he has ‘poorly blood’. His confusion is soul-destroying to see. For a mother it’s unbearable.
Take the day before his treatment, when we went with Hannah and Zac to the Children’s Hospital of Philadelphia, where they had back-to-back meetings with doctors, nurses and therapists.
Hannah and Zac arrive at the airport; they received hundreds of thousands in donations to make the trip possible
Zac suffers from an acute lymphoblastic leukaemia and is the only youngster in the UK with near-haploid, a rare strain of the blood cancer
The vast, gleaming Buerger Center for Advanced Paediatric Care with its roof garden and green spaces doesn’t look like a hospital.
Zac was full of beans and excitement. It was only when his mother took him upstairs for blood tests that he realised it was not an adventure playground after all.
‘They tried to put a wristband on him and he just screamed and ran off. He wouldn’t come back.
‘Then, he just burst into tears saying he wanted to go back to his hospital at home.
‘I wish he was a bit older so he could understand he’s not being punished — that it’s for his own good.
‘He just doesn’t realise why he has to keep going to hospital, keeps having all these different people poking, prodding and hurting him.
‘Sometimes he says he doesn’t want to get better any more. It’s not that he doesn’t want to be cured.
‘He’s just so fed up now. Sometimes you wonder if…’ Hannah bites her lip, unable to voice her fears.
The enormity of having to make life-and-death decisions for her son weighs heavily on Hannah.
Had the Car-T cell therapy been made available to Zac in the UK, instead of the chemotherapy or bone marrow transplant that were offered, doctors would be making these decisions for her.
‘Sometimes I wonder if I am doing the right thing,’ she says. ‘As soon as we hit our goal (of raising £500,000), I panicked and phoned Professor Robert Wynn (the consultant paediatric haematologist at Royal Manchester Children’s Hospital and lead on Car-T therapy in the UK).
‘I wanted to make sure I was doing the right thing because it feels very much like something I’ve engineered.
‘To have the responsibility of making decisions about a child’s life is a lot for a mother to carry.
‘Doctors are trained to do that. I’m not. I’ve had quite a few nightmares recently — things like Zac’s Hickman line coming out, or at night thinking about what songs I’d play at his funeral or what if we came out here and he got really poorly and we didn’t end up coming back. How would I get his body back to the UK?’
Hannah’s torment is such you can’t help but wish you could lessen it. Zac’s platelet count is the healthiest it has been since his leukaemia was diagnosed in May.
Indeed, he is in such good shape Hannah has been told he’ll be able to return to the UK for six weeks of bridging chemotherapy treatment rather than remain in Philadelphia, as she’d originally been told.
While she is delighted to be going home, where she has the support of her close-knit family, she is worrying herself half-sick too.
For, had she not decided upon Car-T therapy, Zac would now be undergoing a brutal chemotherapy regimen — called the intensification phase — to kill off remaining leukemic cells that may be inactive.
Zac and Hannah at home together in Shropshire before they made the vital journey to Philadelphia
Zac in hospital – ‘When Zac began to lose his hair with the chemotherapy, I shaved off some of mine to try to ease his fear. I said, “It’s OK — look, Mummy is going to lose her hair too”‘
‘A doctor in the UK turned round to me and said, “You’ll never know whether it’s the Car-T that cured him or the chemotherapy’, but when I asked the team in Philidelphia what would happen if I just stopped his chemotherapy they said, “The cancer would come back”.
‘That’s why, if we’d continued with the chemotherapy treatment in the UK, he’d have to have had three years of maintenance chemotherapy.
‘Even with that, I was told Zac had a greater chance of dying than living.
‘The American team also spoke to me about expectations of what Car-T cell therapy would do and the understanding it doesn’t necessarily work for all children.
‘I know all this anyway but actually having those conversations …’ The sentence ends.
‘It’s scary now it’s happening — scary that when we get back to England next week, the chemotherapy regimen is not going to be as intensive as it would be if he wasn’t having Car-T therapy.
‘For the next six weeks, the bridging chemotherapy is going to be like a holding dose, so his leukaemia might start to rise.
‘The doctors here have said not to worry. Should that happen, they said they can manage it when we’re back here in six weeks.
‘But it’s quite frightening thinking we’re not going to have the really intensive chemotherapy to try to obliterate this cancer because we need to keep him really safe and keep his body in good shape to re-infuse the Car-T cells. It’s like a Catch 22.’
Hannah, pictured with her son Zac, is stunned after a Daily Mail ready anonymously donated £100,000 so the youngster can fly to the US for treatment for his incredibly rare form of leukaemia
To see Hannah in such low spirits is deeply sad. Zac’s father Mark Garbett, a heating engineer, who separated from Hannah before Zac’s birth, but remains very much part of his life, expected to be here to support her.
But his passport was delayed so he didn’t arrive until after the operation.
Her husband Wayne, a plasterer, who she says is ‘my rock’, is at their Telford home looking after their young son Leo.
A hospital, Hannah insists, is no place for a three-year-old. ‘I’d love to have both my children with me so we can have fun and enjoy ourselves but there’s nothing fun about this.
‘When I’m away with Zac, say in hospital, I’ve got all this guilt because I haven’t seen Leo.
‘But I can’t do it any other way because I’ve got a sick child to care for. Wayne is good at holding the fort and making sure Leo is OK.
‘As I said goodbye to them at the airport on Monday, I said to Leo, “We’re going on a plane to get Zac his special medicine because we can’t get it here. We’ll both be back very, very soon and I’ll take you on the aeroplane next time.”
‘I turned round, started walking off and burst into tears. I get very sad at times, and frustrated that our life is as rubbish as it is.
‘When we were campaigning, it was a huge distraction. I’d go for days without crying, which is quite unusual because usually you wake up in the morning, think about your little boy and you cry. You get in the shower and you cry.’
The funds raised for Zac’s treatment, which have now reached an astonishing £600,000, are administered by a trust and will be spent on research when Zac’s medical needs have been met.
‘I can’t put into words how grateful I am for everyone’s kindness. Without it, Zac wouldn’t have this chance.
‘Ninety-three per cent of kids who have had this treatment — and they’ve done more than 300 in Philidelphia — are in remission.
‘Unfortunately, a very minute proportion of children have got near-haploid (fewer than 0.5 per cent of childhood leukaemia sufferers worldwide), so it’s difficult for the doctors to say whether it’s going to be effective or not.
‘I’m not blind to the fact that Zac’s a high-risk patient, but what else have we got?’ Hannah rests her head back on the sofa. She is truly exhausted.
‘When that little girl’s mum phoned me, she asked if we had some money in Zac’s fund to do genetic testing in case there was some form of immunotherapy that could save her daughter.
‘I thought to myself, “Do you know what? I’d give you all of my bank account if I thought it would make a difference.” She could have had whatever was in there.
‘But it was too late.
‘So, you come back to the realisation that, yes, we’re trying the hardest to get the best cure for our son that actually might not work and you know we’ve got a long road ahead, but at least we’re on that road.
‘Whatever we’re going through now — and no matter how scared I feel — Zac has a chance.’
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