Read a Message of thanks from Angus' family
A cancer diagnosis for your child is every parent’s worst nightmare.
It became our nightmare in 2013 and it is still continuing today. Angus is an exceptional 12 year old boy. Though parents are invariably biased and I don’t claim to be any different, Angus, the second of our four beautiful boys, has always been an outgoing, confident, independent, kind, generous and organised child. We adore him and will always want the best for him.
In the autumn of 2013, at 10 years of age, Angus pointed out a large lump in his neck. We were immediately concerned, and saw our GP straight away. We were reassured that it was likely nothing, that kids often have lymph nodes swell as a result of exposure to infections or viruses, and the blood tests Angus had all came back normal. We relaxed and waited. After 6 weeks, the lumps were still there. Were they larger? It’s so hard to tell when you are watching your child so closely. We went back to the GP. This time an ultrasound was ordered and more blood tests. The bloods remained normal and the ultrasound was inconclusive and not worrying in a child who was so well that he was still playing rugby league twice a week plus training.
Our GP was not satisfied however and arranged an appointment with a surgeon at Sydney Children’s Hospital for removal of a node. When we returned to the outpatient clinic for the post-surgery follow up appointment, the experience was nothing less than bizarre. Along we went with our beautiful, seemingly healthy son. All blonde hair, tanned skin and a big smile. The surgeon smiled at us in the waiting room while she saw to other tasks before calling us in. We looked at each other and commented that everything must be ok. But it wasn’t.
“We have the pathology from the lymph node we removed. Angus has Hodgkin’s Lymphoma.”
Lymphoma. Is that cancer? I looked at my husband. He was visibly shaken. I looked at Angus. For the first time in his life, Angus was completely unaware of what was unfolding around him. The surgeon then said, “I have arranged for the oncologist to join us” and like a surreal game show, Dr Toby Trahair, who we would come to know very well, entered the room. “It’s treatable”. “It’s curable”. And it was. Kind of. Two months of awful, painful, sickening chemotherapy and Angus was given the all clear. By Christmas his hair was coming back and in January we took our regular camping holiday down the coast. We were lucky. We were grateful. I said to Toby at a visit in those early days, “Everyone said it was a good one to get”. Toby replied, “There is no such thing as a good cancer”.
We went back to our normal, crazy life (there is no other type with 4 active boys), and appreciated things more. Angus shrugged off what we thought was a blip and took to skate boarding with amazing determination. We spent every check up with Toby explaining the source of all those bruises! He topped off 2014 by being elected school captain of our lovely school. I recall the tears of joy on the day of the announcement. We were so proud of his achievement. He didn’t let anything stop him from pursuing his goals.
However, things didn’t go as we hoped. More lumps appeared in Angus’ neck in late January 2015. I tried to reassure him and myself that it was just from the cold that he had recently suffered, but the panicked look on the faces of our oncology team at our February 2015 review told another story. Pathology on a lymph node confirmed it. Angus was one of the very few in whom Hodgkin’s Lymphoma recurs. We have calculated that there might be one child in Australia in Angus’ position each year.
2015 has been a tricky year. The first lot of treatment, brentuximab vedotin was effective, but there were only two rounds of that on his protocol. The high dose combination chemotherapy that came next was ineffective. The cancer grew during that treatment. Next came radiotherapy. Two areas, his neck and chest, were treated every day for 21 days. Angus was patient and serene as they pinned him down in a custom-made mask each day, to position him for treatment. He says he liked radiotherapy - heaps easier than chemo according to Angus. After the radiotherapy came an autologous stem cell transplant. For Angus that meant 30 days in isolation in hospital, and another 21 days at home in isolation. Not easy for a social, active kid. Then the post treatment scan. No active cancer. We are so incredibly grateful, but, we are not done.
Angus’ type of cancer, initially has a low rate of recurrence, but after one relapse, the recurrence rate is significantly higher, in the order of 40-50%. But it’s more than just that. The research suggests that not responding to treatment - as occurred with the high dose combination chemotherapy in Angus’ first relapse - increases the risk of recurrence. If it comes back again, things get trickier. Some treatment options have been exhausted, some didn’t work at all for Angus. The next time, treatment will be more aggressive, more dangerous and less effective. But, there is good news. A recent study demonstrates that the use of brentuximab as a post-transplant therapy reduces the risk of relapse by 50%! Initially great news.
However, this drug, though approved for some patients, is not available to relapsed Hodgkin’s Lymphoma patients though the PBS. He will need 16 doses administered once every three weeks. It usually costs around $11,000 per dose. Takeda have agreed to provide the drug at a reduced price. It will cost us around $5000 per dose. So many people have assisted us in so many ways as we have navigated this challenging time. We are definitely aware and appreciative of how fortunate we have been. The $81,000 that we need to pay for Angus’ treatment is a lot of money. Any support that you might be able to provide is humbly and gratefully received.
Trisha - Angus’ mum
"Please note that all monies donated to Rare Cancers Australia Limited are used charitably at the discretion of the RCA Board of Directors. The wishes of donors are, wherever possible, taken into account by the Board when allocating available funds.”