A Creative Mind

In June 2017, five-year-old Caleb was diagnosed with T-Cell Lymphoma (a blood cancer).

He had been sick for a few weeks, unable to shake a cough. Anne and Anthony, Caleb’s parents, took him to the hospital and were told he just had a cold. But Caleb didn’t get better, so they returned to the hospital. This time the doctors noticed a lump on his neck.

“The doctors sent us the get a chest X-ray. Obviously they knew more than we did, that something was going on. The X-ray showed that Caleb had a big mass on his chest,” said Anne.

Caleb commenced his three year treatment plan at Monash Children's Hospital, which would include nine months of intensive chemotherapy.

“He’s only having chemotherapy at the moment. We’re just over half way through it. And after that he will have 2 years of maintenance, which we are looking forward to as it is a lot more low key,” said Anne.

The family of six from Gippsland, 300 km away from Melbourne, have found some challenges in adjusting to Caleb’s varied treatment schedule.

“It varies a lot – every 8 weeks his schedule changes. At the moment he’s in the hospital for 5-6 days and out for a week or so. Next month he’s going to be in there every second day getting treatment.”

The first few weeks when Caleb was in the intensive care unit (ICU) were especially difficult.

“Our children really missed him and us a lot, as we were both with Caleb at the hospital,” said Anne.

Anne is grateful for her family, who have cared for her three other children full-time while Caleb was in the ICU. It’s a balancing act, but has become easier since Anthony was able to take time off work. Taking turns with Anne, they have managed to have one parent in the hospital with Caleb and the other at home.

“I don’t know how we do it, but you have to keep on going and make it work somehow. Having family around makes the biggest difference,” said Anne.

Caleb’s longest stay at the hospital – five weeks – felt like a really long time for the whole family.

“Caleb has handled the treatment incredibly well and copes better than we do. He seems to adapt to whatever’s going on and accept where he is and what he’s doing at that time,” said Anne.

But of course Caleb misses playing with his sisters and brother and being outside, which he loves.

“Caleb’s diagnosis hasn’t stopped his creative little mind, as there are many wonderful distractions in the hospital which help him during his treatment.”

“He loves music therapy (funded by the Children’s Cancer Foundation) and play therapy. All of those things help him to look forward to hospital visits as it’s not all negative, but positive as well,” said Anne.

Caleb is also doing the Beaded Journey, a therapeutic program funded by the Foundation.

“It’s fantastic to do at the time because Caleb’s so young and we realised when he’s older, he won’t remember most of it. In a way it’s a good thing. The Beaded Journey will be good for him to look back on and realise what exactly he’s been through,” said Anne.

Over the last few months, Anne has learned to let go of the structure in life and go with the flow a bit more.

“The way my life was before was very structured and we did things a certain way. I think this whole journey would be overwhelming and stressful if you are trying to do things that way. So that’s one thing that I’ve tried to change as we’ve gone along,” said Anne.

“I hope one day, Caleb will look back and realise how resilient and strong he was during this time, and how far he has come.”

Thank you to Anne for generously sharing Calebs's story with the Children's Cancer Foundation.