A simple cold set in motion a domino effect of discoveries that would flip the Weaver family’s world upside down.
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One minute, young Shepparton parents Ben and Leonie Weaver were enjoying life, having started a family just 22 months ago, when they welcomed their son Rye, and expecting a second baby in six months’ time.
The next, that happiness was ripped from them and replaced with sheer uncertainty, fear and worry when Rye was diagnosed with leukaemia last week.
Speaking from his son’s bedside at Melbourne’s Royal Children’s Hospital, Mr Weaver said the shock diagnosis had come quickly.
Rye had been sick with a cold — nothing out of the ordinary in winter for anybody, especially a toddler — but then randomly developed a black eye.
How it came about puzzled his parents.
Having already mastered walking, Rye’s ability started deteriorating more each day.
Mr Weaver said they thought their timber floors were presenting a problem for him so they removed Rye’s socks to make it easier and found he was still struggling.
Alarm bells rang.
They headed to their Shepparton doctor for blood tests and discovered that Rye’s blood counts were all over the place and lower than they should be.
“Infections can do that, and an infection can cause him to walk with a pain in the hip,” Mr Weaver said, still thinking positively.
The clinic sent the family to Goulburn Valley Health’s emergency department on Friday, August 2, where they remained overnight.
The following day, staff conducted several more tests on Rye, including an X-ray and ultrasound, determining he had an enlarged liver and spleen, all the while communicating with the Royal Children’s Hospital behind the scenes.
When Mr and Mrs Weaver were called into a boardroom meeting at the hospital, staff broke the news they were looking into leukaemia and transported them and Rye to the Royal Children’s Hospital that night.
Instead of celebrating her birthday on the Sunday, Mrs Weaver sat by her one-year-old son’s side while he was poked and prodded as doctors performed a bone marrow check and gave him a lumber puncture, injecting chemo into his spine to determine if Rye’s condition was definitely leukaemia.
By the next day, it was confirmed.
“By the time we got to this hospital, he couldn’t walk, he couldn’t stand up,” Mr Weaver said.
“He still can’t walk, but he’s not in the pain he was in, which we’re happy about.
“He’s been on a lot of drugs and antibiotics to help relieve his pain.”
Doctors have told the parents that Rye should regain that function by the end of the month.
However, Rye’s journey is going to be a long one.
For at least the first six months of his treatment, the family needs to stay within an hour’s drive of the hospital, making it impossible for either Mr or Mrs Weaver to earn an income from their usual jobs in Shepparton.
“I’m self-employed, so I’ve had to stop all work,” Mr Weaver, a tiler and bathroom renovator, said.
Mrs Weaver, who works part-time as a dental nurse, has also had to pause her employment.
When Rye is discharged — likely on August 14 — he will be discharged to Ronald McDonald House in Parkville as an outpatient. It will become the family’s home away from home for half a year.
Rye will need treatment for another two years after the initial critical six months, but Mr and Mrs Weaver are hopeful it can be administered from home in Shepparton.
Mrs Weaver’s maternity checks will now need to be carried out at the Royal Women’s Hospital in Melbourne, with Mr Weaver predicting the couple’s second child will be born there too.
“By the time we get home we’ll have another child,” he said.
For the past 10 days, Mrs Weaver has spent nights at the hospital with Rye, while Mr Weaver has returned to his room at Ronald McDonald House.
During that time, Rye received one round of chemo and another intensive round of different medication.
Mrs Weaver’s sister, Katrina Burwash, has set up a GoFundMe fundraiser to help relieve the family’s financial burden during their temporary relocation to Melbourne.
Mr Weaver said the fundraiser meant the world to him and his wife, as they had no other means of income until they returned to Shepparton.
“There’s no other way until then,” he said.
At the time of publication, the fundraiser had raised just over $27,000 of a $50,000 target.
Ms Burwash wrote on the GoFundMe page: “Rye’s treatment is our top priority, but the associated cost of essential expenses such as mortgage, utilities, groceries and medical bills are overwhelming as Leonie and Ben are not able to return home to work during this period of time.
“These funds will help Rye and his family navigate this difficult period, allowing them to focus on his recovery without the added stress of financial burdens. Every donation, no matter how small, makes a significant difference.”
The link to donate to or share the fundraiser is here.
Senior journalist