Precious: Zac Oliver pictured with his 33-year-old mother, Hannah Oliver-Willets
When four-year-old Zac Oliver was diagnosed with an incredibly rare form of leukaemia eight months ago, he was given a less than 25 per cent chance of survival.
His family wanted to send him to the U.S. for pioneering CAR T-cell therapy, increasing his chance at life to between 60 to 80 per cent.
When they made his plight public and launched a fundraising campaign, donations poured in — including a £100,000 gift from an anonymous Daily Mail reader — enabling them to reach the £500,000 they needed.
Two months ago, Zac had the first stage of therapy at the Children’s Hospital of Philadelphia (CHOP) when immune cells called T-cells were harvested from his blood ready to be modified in a laboratory. This week, the cells were injected back into his body.
Here, in this deeply poignant diary, his mum Hannah Oliver-Willets, 33, writes about the heartache and joy of the past month.
Try as I might, I can’t sleep. Tomorrow, Zac and I leave for Philadelphia for the final stage of his CAR T-cell therapy.
It’s mind-boggling to think that, if this treatment works, Zac could start school full-time next term, play with his friends, go swimming, do anything he wants to do free from the horror of cancer.
The enormity of these possibilities keeps me awake. Without the generosity of everyone who has given to Zac’s fund, we would not have this lifeline. I can’t find the words to express how truly grateful I am.
Then the panic sets in. What if the therapy doesn’t work? What if I’m shortening Zac’s life, not saving it? The unknown is terrifying.
Saying goodbye to my beautiful boy Leo was really tough. Wayne [Zac’s stepfather] and I explained he won’t see his brother for a while because Zaccy has to go to America for some special medicine.
Leo asked if he could come. He’s only three, so he doesn’t understand.
On a journey: Hannah and Zac pictured outside the Children’s Hospital of Philadelphia
My sister, Sarah, is coming with us. When she offered, a huge weight was lifted. I’ve been panicking about being in the U.S. on my own; when I was there for the first part of Zac’s treatment last year, it was hard.
Zac didn’t want to get on the plane. When I explained we needed to get his special medicine, he said: ‘I don’t want to get better.’
What he’s trying to say is he’s fed up with being poked and prodded and forced to take medicine that makes him sick.
We’re travelling out a week early to do some fun things first. I used the promise of a trip to the Adventure Aquarium as a bargaining chip.
I took Zac to the Adventure Aquarium, where he stroked sharks and high-fived a stingray. He loved it, but on the way back to our apartment asked if he could go to his real home where his family is.
‘My sister, Sarah, is coming with us. When she offered, a huge weight was lifted’: Zac pictured with his aunty outside the hospital premises
We went to CHOP today to get Zac used to the hospital. There’s a clock in the waiting area with metal mazes for balls to roll down, mesmerising to a four-year-old.
A lady who works there asked if he’d like a toy. Zac looked at me as if to say: ‘Is she really going to give me a toy instead of medicine?’ I nodded. He picked a teddy that talks and lights up. He has it tucked up in bed with him now.
We took Zac to the museum today, but Sarah has not been herself and said she feels sick. We both looked at each other and said at the same time: ‘Surely not?’
We stopped at a pharmacy to get a pregnancy test. Sarah, who has a little girl, Alexa, is going to be a mum again. Zac keeps touching her tummy. He loves the idea there’s a baby in there. I remind him he used to be in Mummy’s tummy.
Was the cancer part of him then? Time and again I’ve asked myself how Zac got this. Is it my fault? Maybe it’s an answer I’ll never get.
Sarah keeps dashing off to be sick, so we spent the day in our pyjamas watching Disney films and playing ‘hide and seek baby dinosaurs’, one of Zac’s favourite games.
The doctors call Zac’s cancer cells ‘hidies’ because they find little places in the body to hide, where it’s difficult for the chemotherapy to reach them. It’s why the prognosis for children is so poor. [Four in five children with the rare strain of lymphoblastic leukaemia die.]
Hopefully, the T-cells will get into all those nooks and crannies, but no one knows for sure because the treatment is experimental.
‘That panicky feeling as to whether I’ve made the right choice for Zac grows as the day of truth — when the T-cells are re-infused into his body — gets close’, Ms Oliver-Willets says
We went to CHOP again today. There was a lady called Mabel in the waiting area with her husband, John, whose three-year-old niece was having major heart surgery.
Mabel told me John had CAR T-cell therapy on November 23 after being given a 30 per cent chance of survival with traditional therapies. His scans have come back clear of cancer.
I tried not to cry, but I couldn’t help it. I was sitting with someone who was riddled with cancer a few months ago and is now cancer free because of the therapy I’ve fought so hard for my son to have. It felt as if someone or something had placed them there to reassure me.
That panicky feeling as to whether I’ve made the right choice for Zac grows as the day of truth — when the T-cells are re-infused into his body — gets closer. Now two strangers have given me hope.
This morning, we explained to Zac this was the last day we could do something exciting before we start treatment.
He wanted to go to the dinosaur museum. Zac adores dinosaurs and it was a joy to see such a very happy Zaccy. For a few hours, I could put all the worries aside, like a normal family.
Medicine: Zac begins his conditioning chemo-therapy, a toxic regimen to eradicate the cancer
Zac began his conditioning chemo-therapy, a toxic regimen to eradicate as much cancer as possible and make way for the T-cells.
He was brilliant. He let the nurse draw bloods and check his weight, height, blood pressure and oxygen levels without making a fuss once.
Our doctor, Dr Shannon Maude, told me about a new CAR T-cell therapy trial about to open specifically for hypodiploid patients like Zac, to find out at what point in the treatment protocol it’s best to carry out the therapy.
I was so happy when I heard this. Without research, children with cancer will continue to die.
After the meeting, Zac was hooked up to his chemotherapy drugs and spent five hours in a chair playing on his tablet.
In all likelihood, Zac will suffer after-effects. A lot of children have problems later on. For now, I just want him to have a ‘later on’.
The doctors say he’s doing amazingly well. He always smiles and has a magical aura about him. Sometimes I wonder if there’s a bigger force protecting him.
Support: The nation rallied around the brave youngster and generated more than £500,000
Zac didn’t want to get up. Usually, he’s awake before me, prizing my eyes open with his fingers. Today, he was nauseous and tired.
After he’d finished retching over the loo, I dressed him in his comfy jogging bottoms as he lay on the bed with his head under the pillow. I just wish that I could take away his suffering.
His dad, Mark, flew in a few days ago. He arrived as my sister left, so we met him downstairs and went to CHOP together. He brought the Zak Zoo series of books about a boy who owns a zoo. Zac loves them. I read to him as he falls asleep. I like to think of him playing with those animals in his dreams in a place where there is no cancer.
Today, Zac had to have a bone marrow biopsy and lumbar puncture. When we were taken down to theatre, he took one look and ran.
The doctor pretended to play hide and seek and somehow managed to hook him up to the general anaesthetic without him noticing.
As Zac lost consciousness, we supported him to lie down. There was no screaming. No fighting. No pain.
My dad has flown in to stay with us. Zac was so excited to see him. He adores his grandad. I am very blessed with my family. I wouldn’t have got this far without their selfless love and support.
Zac woke in a really bad mood. His back hurts and he feels sick. At the hospital, Zac ignored all the nurses. No matter what we said or did, nothing was right.
This is not uncommon when you have a child with cancer. But that’s OK because tomorrow they will be back to themselves and you know, deep down, your child is a beautiful being with manners.
In the apartment after the chemo, Zac was doubled over in pain for about 20 minutes. After he had a sleep, he was fine, but you can’t help panicking. The motherly brain going into overdrive thinking of the worst that could happen.
Rest day: Zac enjoys a well-deserved break after his intense cancer treatments
Today was Zac’s first day off after a week of treatment. He had toast in bed while watching cartoons. He didn’t want to go out, which I was glad of, really.
Everywhere is so crowded on a Saturday and I constantly fear infection.
Last night, Zac wet the bed again. That’s four times this week. It’s not like Zac. I hate what chemo does to my poor baby’s organs.
He spent the afternoon sleeping, woke for some apple juice and a game of dinosaur hide and seek, then went to bed. The chemo is making him so tired.
As soon as he got up, Zac asked if he could take his grandad to the dinosaur museum. We knew he must be feeling better.
When we walked in, he pointed to a dinosaur that looked like the Loch Ness monster and shouted: ‘Look, Grandad, it’s an elasmosaurus.’
He’s endured so many horrible things in the past eight months. Tomorrow marks the beginning of a new era. His T-cells are being re-infused and then we have hope.
Thank you everyone for making that possible.
More support: Zac pictured with his grandad and Dr Shannon Maude
Daunting: The medication which Zac undertakes is emotionally and physically gruelling
Today, Zac didn’t want to go to hospital. He asked if we could take him to his real home instead to see Wayne and Leo.
At the hospital, we were taken to Room 46 where Zac will receive his T-cells. I call them his ‘Pac-Mans’ because they are going to gobble up the cancer cells.
The T-cells were brought to the room in a small cool box. The delivery man handed a large syringe to Dr Maude, who began to push the T-cells through Zac’s central line into his heart, to then disperse into his bloodstream.
A smell of sweetcorn permeated the room. Apparently, it’s the preservative they use on the T-cells. It was weird watching my son being infused with millions of cells, which are about to kill the cancer cells.
I just saw war: a battle between good and bad beginning in my four-year-old’s body.
Even though I know it is Zac’s best chance of survival, I still wanted to shout ‘stop’. Within ten minutes, Zac started itching all over and screaming. He became so distressed he wet himself. They gave him a dose of lorazepam to calm him down.
Eventually, he fell asleep. We got back to the apartment at 5pm, all of us very tired. I dread repeating it all again tomorrow.
‘In six weeks, a bone marrow biopsy will tell us whether he is clear of cancer. I find myself praying. I’m not religious, but what else can I do?’
Zac woke up in a fantastic mood — singing, dancing, giving cuddles and kisses. He was amazing at the hospital. His grandad distracted him as Dr Maude slowly infused the last of the Pac-Man cells into Zac’s body.
He was checked every 15 minutes for an hour afterwards and we were discharged. It’s been a great day. Now we can only hope.
In six weeks, a bone marrow biopsy will tell us whether he is clear of cancer. I find myself praying. I’m not religious, but what else can I do? I’ve fought as hard as I can for Zac.
All that’s left now is to wait while this war wages in his little body and pray the Pac-Mans win.