Parents’ heartbreak as disabled son is diagnosed with cancer

You’d be hard-pressed to find two more devoted parents than Ian Hoy and Monica Kasunic.
The Sydney couple are parents to William, 17, and Samantha, 13. Will is autistic and also has a developmental delay, anxiety and ADHD.
Life was challenging enough for the family when, earlier this year, Will seemed more lethargic than usual.
“Every year since he started school, every term, week one is good and he starts getting sick at the end of it, he’s off week two, back week three, and the rest of the term there’s no problems,” Ian, 42, tells 9honey.
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They then noticed a “fleshy lump” on the right side of Will’s neck.
“I said, ‘I’ll keep an eye on that’ and that had gone down.”
Then another appeared, on the left side.”
Will began to fatigue more than usual, missing school, which was out of the ordinary because he loves school.
It was during a scheduled paediatric appointment that Will’s doctor became concerned.
“He didn’t really like the story. He goes, ‘Ah, a bit too long, a bit too big’ because the mass in his neck was measuring about four and a half centimetres,” Ian recalls.
They were sent to the oncology unit at Sydney Children’s Hospital at Westmead, where Will endured a biopsy on the lump.
Ian and Monica were told staff would test it on the spot and if it was cancer, they would insert a port during the same procedure for the chemotherapy treatment that would need to begin.
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“The senior registrar actually ran down for the pathology results, and then ran straight back up and said, ‘Put the port in now.'”
Will’s formal diagnosis came on July 10. He had Stage 3b Hodgkin’s Lymphoma.
“It was painful, but we’re very realistic to what’s coming along. I think we prepared ourselves,” Ian says of his and Monica’s reaction to the devastating news.
“And we’ve done a lot of work on ourselves anyway the last couple of years that has just really solidified us. That made us able to handle this even better than most.”
Both parents come from a healthcare background which proved to be a blessing, and a curse. They knew exactly what their son was about to go through to fight the disease.
”So it was that broken-heart moment, but what can we do? We’ve just got to push through. We’ll get through it.”
They were told their son’s prognosis was “quite positive” but complications would see Will spend extended periods of time in hospital.
They almost lost him more than once.
Ian and Monica have been supported by their incredible family, one of whom launched a crowdfunding effort to help them cope with the cost of treating their son’s condition.
The family was already struggling financially when Will was diagnosed with cancer.
His disability continues to evolve and present new and significant challenges, meaning one parent always needs to be available to care for him.
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“Being a single-income family, I get a carer’s pension, every little bit’s awesome, but it’s never enough in the grand scheme of what it costs to keep the family going and keep him happy and all that sort of stuff,” Ian says.
It was his brother Peter who set up a crowdfunding effort to help support the family.
“My brother’s been phenomenal. He’s one of my, if not my best friend,” Ian says.
The family received an unexpected boost to their fundraising efforts when they were invited onto Ben Fordham Live on Sydney’s 2GB after Peter wrote into the program.
“The last time I checked before, it was like $70,000 … I’ve got no words.”
Ian admits he does shed tears as he watches his son struggle through treatment.
“Yeah, I cried at the start because you have to, you’ve got to get that stuff out, but it can’t hold us back on the journey we’re on now,” he says.
“I’m strong and tough enough to admit every man needs to cry.”
Will has just finished round two of his treatment after his first was delayed by complications.
”You get steroids for 15 days and then the first five days is IV drugs. Then day eight is an IV drug, and day 15 is an IV drug,” Ian explains.
Keeping Will happy in hospital can prove challenging and he has a long road ahead.
”He has his iPad, he has his Aunty Fi’s iPad,” Ian says.
The hospital also gives patients access to an impressive collection of movies.
While on the phone to 9honey, Ian called out to his son to confirm his favourite movie, which Will yelled back was most definitely “Shrek!”
“He loves all the Dreamworks movies,” Ian confirms.
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