Heartbreak for family as Kiwi boy battles leukaemia relapse, RSV

Domanic Grant is only 9 years old but has gone through more pain and heartache than most of us experience in a lifetime.

The young boy from Shannon, a small town near Palmerston North, is currently in Starship hospital, fighting leukaemia for the second time in his life – after inching so close to remission, and has now also caught RSV (respiratory syncytial virus) and rhinovirus.

His mum Cherie is by his side at Starship in Auckland, while his dad Phil is looking after the couple’s other five children at home.

They all desperately miss each other and don’t really know when they get to see each other again – but that’s far from being their main worry at the moment.

Domanic was diagnosed with Philadelphia Positive Lymphoblastic Acute Leukemia (pH+all) after an emergency trip on the air ambulance to Starship hospital in Auckland in November 2019.

“At 80 per cent leukemia in his bone marrow, our fight began,” recalls his father.

What ensued was a months-long battle that not even many adults are strong enough to fight but which Dom, as he is known among his siblings, handled like a trooper.

His little body endured extensive chemotherapy, steroids, and all manner of treatments. His family fought an agonising battle, with tears, emotions, and more heart-stopping moments than they’d want to experience for a whole lifetime.

Domanic’s dad Phil has a permanent head injury, and struggles with frequent migraines, which makes the task of looking after his other five children while his wife is in Starship with Dom all the more challenging.

Through it all, Dom has fought, winning battle after battle, with the stoicity and strength you never expect an 8-year-old to have to display.

Despite endless trips to the hospital to get his feeding tube reinserted only to then throw it up again, Dom managed to gain the necessary weight to not need the tube again at all.

You’d be hard pressed to find prouder parents, seeing their boy persevere through this unimaginable struggle.

It was all going as well as it could be and Dom was able to move back home to recover near his family, with regular scheduled visits to hospital for treatment. His body was responding to leukaemia treatment and he was so very close to being deemed in remission.

Things were starting to look up, to the point that Dom was even able to return to school for a couple of days a week. For brief moments, life was almost normal. Almost.

At the start of this month, Dom relapsed.

“It was a shock for us all because he’d been doing so well. He was so close to being in remission,” his dad says.

The boy and his mum said their hurried goodbyes to the family and, once again, boarded a plane to Auckland, back to Starship, now their home away from home.

Having his platelets..his feeling very under the weather

The family has been apart since then, with Cherie looking after Dom while Phil cares for their five other children.

“School runs, dinners, washing and cleaning and all the emotional moments of explaining to Domanic’s siblings regularly why he was in hospital and why we can’t visit him,” his dad describes. “They had so many questions I couldn’t answer. Nights I spent alone without my wife, lost, depressed, hurting and wondering if we are going to get through this, but most of all wondering if our son is going to survive.”

“He was so close to actually going into remission, his blood count was awesome, we had such high hopes,” his dad recalls, emotional.

Phil talks to Cherie and Dom every day on the phone, but hasn’t seen them since they had to rush to Starship again at the start of July.

“It’s heart-wrenching sometimes,” he says.

To make matters worse, Dom has also now contracted RSV and rhinovirus, and is on two courses of antibiotics.

“He has no fighting bugs at all to fight anything,” his dad says, unable to mask his worry.

“He’s very pale, he’s doing it so tough. But he’s such a happy boy, I’m so proud of him,” Phil adds.

Dom had his birthday recently and his parents managed to get him a portable Xbox screen, with help from the Make A Wish Foundation. Dom was also spoilt with balloons, cake and gifts, with the help of Gabby’s Starlit HOPE, a community that provides random acts of kindness to oncology kids and their families in New Zealand.

Back home in Shannon, dad Phil says he has been constantly amazed at the generosity of the community, including his children’s school.

“Everyone has been just amazing,” he says. “They do school lunches for the kids to take the pressure off me, people drop off baking, bags full of fruit … It’s just overwhelming, it really restores your faith in humanity.”

Phil spends his days looking after five children and checking for updates from Cherie on Dom.

“I miss her so much, she’s my rock,” he says of his wife. He can’t hold back the tears and his voice gives in a little. “I’m sorry, I get emotional talking about her.”

“Sometimes I pile all my kids into my bed, just to have someone there next to me. My son should be at kindy this week but I can’t handle not having him near me so I’ve been keeping him home,” he says.

Cherie spends her days by Dom’s side at Starship, away from her other children for weeks on end. “She’s amazing with him,” Phil says. “This is so hard on her but she just keeps her cool and makes sure he keeps his cool.”

Phil talks about Dom with the admiration of someone talking about their idol. “I’m just so proud of him, he truly is my superhero, without a doubt. His attitude is just so inspiring. I call him and I get emotional because I can’t hug him through the phone and he just smiles and stays so positive for me, for all of us.”

Phil says he and his wife have had their hearts broken many times over witnessing Dom’s small body fight the cancer.

At one point, the then 8-year-old boy became depressed and stopped talking altogether.

“My mum died four years ago from leukaemia,” Phil explains. “Dom used to go to her blood transfusions and sit on her knee, watching cartoons. That’s why his depression rocked him quickly when he was diagnosed. He had a blood transfusion on his first day of his first diagnosis. He didn’t speak for 3 weeks. He knew – because nana had blood transfusions and then died. He would wake up screaming ‘I don’t want to die’. It was heart wrenching.”

Dom, a keen gamer, found comfort in the hours spent battling different monsters and demons to the ones threatening him in real life.

Just like that the 3 boys have been tested to see if they a match to be the doner…so proud of them

“He loves gaming, loves Fortnite. It keeps him busy and happy. He’s so obsessed with it sometimes he’d be throwing up because of the chemo but just aiming for the bucket without even stopping the game,” his dad says.

Phil credits the game with getting his boy out of his depressive state at the start of his cancer journey.

For a while, Dom refused to talk about anything related to his diagnosis but, whenever anyone mentioned Fortnite, his eyes had the same healthy glint they used to have before the diagnosis.

Wanting to feel closer to his son and fight this feeling that he was being taken away from him, Phil borrowed a console from a friend and started playing Fortnite with Dom.

“When we’re playing, we don’t talk about the diagnosis, we just talk about the game. It brings us closer and it makes him happy.”

His siblings, three of them younger than him, don’t really understand why he can’t just be home with them. “We can’t show them what’s wrong, you can’t put leukaemia into a picture. They see him have some good days and they get confused,” Phil says.

They all desperately miss mum and Dom, and are too doing everything to help. Just last week, Dom’s three younger brothers all gave vials of blood to be tested for a bone marrow transplant. Now they’re waiting to hear back on whether they’re compatible.

Phil and Cherie are scared to get their hopes up. “We’ve had high hopes before and the rug was pulled from underneath us when he re-lapsed,” his dad said, getting emotional again.

“I feel weak in my heart and legs, not knowing where this next journey will lead us as a family, the future is uncertain. I’m worried about not being there with him, when he may need me, and if things go wrong … I don’t even want to think about that road.”

Loving having kiwi fruit

There are 545km between Shannon and Starship hospital in Auckland. Phil and the children don’t get to go visit Dom and Cherie nearly as much as they’d like but are hopeful to be able to hug them soon.

For now, there’s little hope that Dom will sleep in his own bed in the next six months. In addition to leukaemia, his already weak body is having to fight a bout of RSV and rhinovirus, all while enduring chemotherapy.

The latest hospital document states that Dom’s cancer is “potentially curable”. Reading that word “potentially” made Phil “weak at the knees”. He needs his boy home.

“What I wanna do the most is go up there, give him a hug and fall asleep with him … I just need to be close to him,” Phil says, wiping away his tears.

Now eatting Coco pops

It’s late in the evening and Domanic’s dad has to go put his other five children to bed. He’s hoping to hear from his wife Cherie one more time before he goes to sleep.

None of them know when Domanic will be able to go back home. But they know they’ll do anything to make it happen.

Can you help?

Phil and Cherie have started a fundraising page to give Dom the best possible chance to fight this battle.

There is no ultimate fundraising goal, other than anything that contributes to Dom’s health and happiness.

“All funds will go to Dom journey wherever needed, travel, overseas treatment, goal is a open end, if any surplus left after kicking leukaemia, will be donated to other children fighting leukaemia, or start a charity in Dom’s name for children with leukaemia,” his dad wrote on the page.

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