Archie’s diagnosis and treatment

Katie lives in Melbourne with her wife, Marina, and their 18-year-old son, Archie.  

Archie was diagnosed with Ewing sarcoma, a rare type of soft tissue cancer, at 12 years old.

“Archie’s a very motivated and physically active person. He’s always done things like dance, hiking and camping, trampolining, acrobatics and he cycles a lot. He enjoys the outdoors,” Katie said.

About three months before his diagnosis, Katie remembers Archie’s shoulder line looking swollen. He had an avocado sized lump above his collar bone. After multiple tests and a biopsy, the family was given the diagnosis and treatment began a week later in early December.

“We spent Christmas Day on the ward. Archie had three months of chemotherapy, then major surgery to remove the tumor and reconstruct his shoulder, and then another six months of chemo with his arm in a sling and leg in a moon boot.”

The family spent eight months in and out of hospital, almost all through COVID lockdowns.

“If you added up all the days living and sleeping on the ward, it would have been five months. Archie wasn’t allowed visitors and only one of his parents could be with him in the ward.

He was very nauseous throughout treatment. He loves food and cooking and is very adventurous in his taste. So that was a big impact, not being able to cope with eating lots of food.”

Katie found comfort in the weeks leading up to Archie’s diagnosis and after his treatment ended, initially with Redkite’s one-on-one counselling on the phone and then the Redkite Coffee Catch Ups.

“Nothing really prepares you for when the treatment is done and you and your family must get on with life as if nothing has happened, all the while dealing with the regular scans and checkups and the terrible anxiety that Archie’s cancer might return.”

How Redkite helped

“I think for a long-time after he went into remission, one of the things that Archie struggled with was the traumatic impact of treatment. I reached out to Redkite to work out how to be the best possible mum for him when he was struggling.”

Katie attended online Coffee Catch Ups consistently during the two years of COVID lockdowns in Melbourne. She was back at work, working remotely, so it was quite easy for her to go online meetings for one or two hours a week, fitting them into her work schedule. Speaking to other parents, going through the same or similar things around the country was invaluable. No-one understood better than they did.

“Being in hospital for all those months, with the further complication and restrictions of COVID made it a very lonely, scary time, and that’s when I first reached out to Redkite counsellors on the phone. For me it was a critical role that Redkite has played in my life and our family’s life.”

Katie took a year off work during Archie’s treatment, as his treatment routine was “intensive”.

“Every two weeks Archie would be required to have more chemo, as an in-patient. What you don’t know at the start of the journey is there are many times in between treatments when your immune compromised child has a temperature or infection, and you have to go back in as a matter of emergency.

One of the biggest emotional rollercoasters was managing Archie’s expectations of precious time spent at home.

People assume that once you’re in remission, that’s it. I think it’s interesting from my perspective, I’ve learned just how lonely and scary and difficult the post-treatment period is.”

Katie went to Redkite Coffee Catch Ups for three years.

“They were really important to me.”

Archie has finished school and after recovering brilliantly from further surgery, is back to enjoying his passions including ice hockey, snowboarding, cycling and getting on the road with his P plates.

Archie has experienced quite a lot in his life so far, and gained a level of “maturity, wisdom and kind of a perspective on life that is possibly a little bit different to peers his age,” his mum said.

“He’s quite independent and focused on making the most of life and not wasting opportunities and time. I feel very excited about this phase in his life.”

Archie finished treatment four years ago and is now in remission.