Sarah Kerby with her son, Willy Boyett, who has had 88 blood transfusions in the space of 10 months. Photo / Supplied
Sarah Kerby with her son, Willy Boyett, who has had 88 blood transfusions in the space of 10 months. Photo / Supplied
Willy Boylett is a 5-year-old braver than most. This is the story of his harrowing cancer journey and his family’s gratitude for the kind act by everyday Kiwis that’s helping save his life.
On a dreary Auckland Sunday, Sarah Kerby sits in Starship’s ICU with a birthday cake she knowsher son, Willy, can’t blow the candles out on.
She watches her little boy’s chest rise and fall with the aid of a ventilator and quietly celebrates his entry into the 5th year of his precious life.
“We’re just trying to give him as normal a year as we can, under the circumstances,” she tells the Herald. “I’m just trying to be a normal mum.”
While far from the birthday any parent pictures for their child, Nelson-based Kerby, 31, is grateful to be sitting there at all. Because the week before she almost lost her son, twice.
“He was the only cancer kid [in Starship’s ICU] at the time so it’s quite a mind complex to know that your kid is the sickest cancer kid in the country,” says Kerby, who also has a 9-year-old son, Baillie.
But after 18 days in ICU – where the average stay is 48 hours – something remarkable happened.
“He just started doing better,” says Kerby. “Now he’s up and about. He had a shower yesterday, and there’s talk of maybe moving us back to Christchurch hospital today,” Kerby tells the Herald, her voice a mix of exhaustion and hope.
Willy Boylett, 5, celebrated his birthday while in Starship's ICU. Photo / Supplied
It’s a dichotomy of emotions that have sat with Kerby ever since Willy’s diagnosis which came after a month of illness including fevers and suspected ear infections and was first thought to be leukemia.
But an MRI found neuroblastoma in the form of a 12-centimetre tumour on his adrenal gland. A less optimistic prognosis, it marked the beginning of what’s been a nightmare for Kerby, Willy and their family.
“It’s hell,” says Kerby. “It’s all I can describe it as. You’re worried about your son who’s just been given a 50/50 prognosis, but it just destroys your whole life. Your ability to work, your home. You’re moving to another town, supporting your other children. The ripple effect just impacts everyone,” says the brave mum who takes week-about shifts with Willy’s dad, Jake Boylett, to be with their son for treatment in Christchurch.
Through it all, Kerby says her little boy has been “a champion.”
Willy Boylett, 4, is battling cancer. He has undergone 88 blood transfusions since his diagnosis. Photo / Supplied
“Sometimes, if he doesn’t want to do something, it’s actually taking the time to let him have a turn with it. Feel it and see what it looks like, and maybe we’ll demonstrate it on teddy. So he’s quite involved with his own care. He likes to push his own syringes in and stuff.
“As long as he can sort of understand what it’s for and is allowed to have a bit of autonomy with it, he’s usually pretty good.”
Amid the trauma of watching her little boy’s fight, Kerby has been heartened by something thousands of ordinary Kiwis are doing that is helping save Willy’s life: donating blood.
In the past 10 months, Willy has needed 88 transfusions.
Just under half of those have been in the three weeks he’s spent in Starship.
“It’s amazing seeing this gift that some complete stranger has taken time out of their day to go and donate, and seeing that coming back into my boy to literally keep him alive,” says Kerby.
“When he’s due for a transfusion, you can tell ‘cause he’s just a ghost, you know. He’s transparent, he’s lethargic and then as soon as a blood product comes back into him it’s just like giving someone a really big cup of coffee.”
Willy spent 18 days in Starships ICU after developing neutropenic sepsis during cancer treatment. Photo / Supplied
Kerby, who has started donating herself and describes the process as “cathartic”, says she has immense gratitude for people “who will never know” how much they’ve helped.
“I think people have no idea how often transfusions can occur,” she says.
New Zealand Blood Service (NZBS) National Marketing and Communications Manager Asuka Burge says while Kiwis are heading into holidays and taking a break from our normal lives, the reality is people still get sick, require ongoing treatment, have accidents and have babies - all of which could see them require a transfusion.
“Last year 53,537 units of blood, plasma and platelets were issued across Aotearoa between December to February. Behind the numbers are mums, dads, children, friends – who when they needed blood or plasma were at their most vulnerable ...”
Ahead of Christmas, 16,467 donations still need to be made for a summer that has a forecasted four per cent increase in demand on last year.
While Burge notes people don’t donate for “the kudos”, the NZBS app has a feature that alerts people when their donation has been used.
“Donors actually get a notification when their blood is used to save a life. You can be doing something really mundane; your phone will buzz and say you’ve helped save a life. We know our donors don’t do it for the kudos, but it’s a pretty cool feeling to know you’ve made a difference.”
Meanwhile, it’s hoped Willy, who tells his mum he wants to be a nurse or a surgeon when he grows up, can enjoy Christmas at home in Nelson with his family.
“We’ve got everyone’s family coming to our house at the moment and we’re just really hopeful and optimistic that we might be allowed home for Christmas,” says Kerby. “But with this recent hiccup … it’s looking pretty 50/50.”
To find out how you can donate blood, visit nzblood.co.nz
You can also donate to Willy and his family through givealittle
