Josh Kelly was growing tired of doctors suggesting that an itchy, inflamed rash on his legs might be caused by a common bacterial or sexually transmitted infection.
He had every right to be. The happily married saxophone player had been with wife Maggie for 10 years and felt stereotyped as an up-and-coming musician on the Melbourne jazz scene.
But after two years of shoulder-shrugging from a string of specialists, he convinced himself that the spotted, eczema-like irritation which first flared in the shower one evening in June 2018 must be caused by the stress of his cut and thrust lifestyle.
It was a fair assumption by the 28-year-old who had recently welcomed his first child, a son named Remy, with Maggie, 32, all while running their boutique gift shop on Thornbury High Street.
So when Josh was diagnosed with stage two blood cancer on August 19 this year after a scan revealed two large tumours in his chest, he felt ‘angry and disappointed’.
He told Daily Mail Australia it’s ‘really disheartening’ to reflect on the time that’s been wasted without any treatment.
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Josh and Maggie Kelly with 18-month-old son Remy at Think Thornbury, their boutique gift shop 10 kilometres north of Melbourne CBD
Josh said he underwent countless STI screenings, including one for HIV, as well as being tested for Lyme disease which doctors believed he could have contracted in budget accommodation while touring in Europe.
‘I said to them, “you realise I’m married and have a child?” – we were tested for all of that during Maggie’s pregnancy,’ he said.
‘It felt like a sweeping generalisation about young people being really promiscuous. Neither of us have been with anyone else in 10 years.’
Doctors’ fixation on STIs resulted from Josh’s unusual readings of CRP, a protein made by the liver in response to inflammation in the body.
CRP tests help to diagnose myriad inflammatory diseases from autoimmune conditions like rheumatoid arthritis and lupus to reproductive infections like chlamydia and gonorrhea.
Typical readings for healthy patients fall between one and three milligrams of CRP per litre of blood, while levels between three and 10 milligrams suggest the presence of illnesses like diabetes or hypertension.
At one test Josh returned a reading of 160, but consistently passed STI screenings with a clean bill of health – leading doctors and dermatologists to shift their focus to the possibility of a staph infection, a relatively harmless bacterial skin condition.
And despite the development of additional Hodgkin’s lymphoma warning signs like fatigue and night sweats in early 2019, it was a common staph infection that he was repeatedly prescribed antibiotics and anti-septic body washes for.
Josh (pictured with a newborn Remy) urges young men to take note of changes in their body ‘no matter how insignificant symptoms may seem’
It wasn’t until he saw a naturopath at the start of the COVID-19 crisis in March – almost two years after his first symptom – that anything more sinister was suggested.
The naturopath referred Josh to an immunologist who studied his records and sent him for a CT scan which finally revealed the cause of his complaints: two tumours deep in his lung cavity, one more than 7cm long.
Maggie said she finds it difficult to comprehend that her husband has been sick with cancer ‘this whole time’ despite innumerable dismissals by medical professionals.
Now the couple are bracing for six months of gruelling BEACOPP chemotherapy, a potent cocktail of drugs that offers the best chance of destroying Josh’s cancer.
Josh (pictured with Maggie) said it is ‘really disheartening’ to reflect on the time that’s been wasted without any treatment
The talented musician now faces an uncertain future as he undergoes six months of gruelling chemotherapy, which can cause serious side effects that damage the lungs and heart
First symptoms of Hodgkin lymphoma
Excessive tiredness, fever, night sweats, unexplained weight loss, itchy rashes and painless swelling of lymph nodes in the neck, armpits or groin.
Source: Cancer Council Australia
Josh Kelly is one of roughly 600 Australians diagnosed with Hodgkin’s lymphoma every year.
It is a rare disease that accounts for just 0.5 percent of all cancers diagnosed in Australia, and one most likely to occur in people aged between 15 and 25 or those over 65 years old.
But as Josh’s story proves, the disease can develop at any time, even in people at the peak of their physical health.
Hodgkin’s is notoriously difficult to diagnose because symptoms are vague and easily confused with those of relatively harmless illnesses like bacterial infections – just like Josh’s were.
Unlike cervical, breast and colon cancer, there are no screening programmes for Hodgkin’s and it cannot be diagnosed with a generic blood test, leading health organisations to label it a ‘silent killer’.
Warning signs include itchiness, inflamed rashes, fatigue and night sweats – all of which Josh experienced – as well as painless lumps in the neck, armpits or groin and unexplained weight loss.
‘It’s so frustrating,’ he said. ‘I put my trust in doctors assuming they were doing the best they could do. I understand it’s hard to diagnose, but why was it not on their radar this entire time?’
Josh and Maggie enjoy their last days as a duo in February 2019, one month before Remy was born
In its initial stages, most forms of lymphoma are highly treatable and associated with long-term survival, which means early intervention can be the difference between life and death.
It’s even curable at stage four when tumours have spread to organs outside the lymphatic system.
But patients like Josh Kelly still face incredibly difficult decisions about treatment which causes serious side effects that could change the course of their lives.
While BEACOPP chemotherapy offers the best chance of destroying cancerous cells, it can also lead to chronic heart problems and irreparable lung damage – a bitter pill to swallow for a brass-playing jazz musician who relies on that organ for his art.
‘They’re really confident that this is treatable, but this is still going to be with me for the rest of my life,’ he said.
‘The side effects on my lungs, it’s really concerning for me as a sax player.’
Hodgkin lymphoma explained
Hodgkin lymphoma is a rare form of cancer that starts in a type of white blood cells called lymphocytes.
The disease begins in a lymph node, usually in the neck, then spreads through the lymphatic system from one group of lymph nodes to another.
Hodgkin lymphoma represents just 0.5 percent of all cancers diagnosed in Australia. About 11 percent of all lymphomas are types of Hodgkin lymphoma, while the remainder are non-Hodgkin.
Non-Hodgkin lymphoma may arise in lymph nodes anywhere in the body, whereas Hodgkin lymphoma typically begins in the upper body, such as the neck, chest or armpits.
Hodgkin lymphoma is often diagnosed at an early stage and is therefore considered one of the most treatable cancers.
Approximately 600 people in Australia are diagnosed with Hodgkin lymphoma every year, most commonly younger people aged 15 – 29 and older people over the age of 65. It is more common in men than women.
The causes of Hodgkin lymphoma remain largely unclear, but risk factors include family history – with those who have a parent or sibling who has had Hodgkin’s slightly likelier to develop the disease – certain viruses, including glandular fever and HIV, and a generally weakened immune system which can occur because of autoimmune conditions or lengthy periods taking immunosuppressant drugs.
Source: Lymphoma Australia
Maggie said she finds it difficult to comprehend that her husband has been sick with cancer ‘this whole time’ despite innumerable dismissals by medical professionals
And like all types of chemo, the treatment will affect Josh’s fertility, leaving him with a 50 percent chance of conceiving naturally again.
It’s only this that brings an audible tremor to his wife’s voice as the young couple consider the prospect of a future dictated by IVF.
‘I feel really sad about it,’ Maggie said.
‘It’s pretty devastating. We decided to have another child at the start of the year, but now.. I feel incredibly lucky to have Remy, but we’d really love to have another.’
Josh and Maggie decided to have another baby so that Remy would have a sibling to grow up with, but his devastating diagnosis has put those plans on hold indefinitely
With an incredibly tough road ahead, close friends have started a crowdfunding campaign to offset Josh’s loss of income while he undergoes treatment.
Donations – which reached almost $46,000 at the time of writing – will be used to pay for living expenses, childcare and the financial hardship that will come from Maggie managing their small business alone.
Eager to help others avoid the battle he is facing, Josh urged young men to take note of changes in their body ‘no matter how insignificant symptoms may seem’.
‘It might be nothing but it doesn’t hurt to get stuff checked and find out,’ he said.
‘I think I’d say I have a lot less trust in doctors now. For the rest of my life I’ll be taking more responsibility for my health and following up on everything.’
Maggie added: ‘I’m just so grateful we found someone who finally listened.’