Eli: A Cheeky Little Monkey

Elias (known as Eli or Monkey, as his mother Nelly affectionately calls him), is 20 months old.

On the 1st March, Eli was diagnosed with a rare soft tissue cancer rhabdomyosarcoma on his prostate and bladder.

Eli is Nelly’s life and she reached out to the Children’s Cancer Foundation to share his story.

“Eli is my reason for sharing our story. Without him, I would have a completely different story. This journey is so hard but it's ours,” said Nelly.

Nelly is a first-generation migrant refugee from Afghanistan.

Twenty years ago, when Nelly was 9 years old, she and her family fled their war-torn country seeking a peaceful life in Australia, although they spoke no English.

“My family and I have worked extremely hard to be where we are now and are forever grateful to be in a country where we feel safe and can call it our home,” said Nelly.

Nelly was with Eli’s father for approximately 8 years but left him due to domestic abuse when Eli was three months old.

“After a very rough start to motherhood, I decided the best hope for a better life was to leave my home and belongings behind and start fresh again with my little Monkey,” said Nelly.

Nelly re-iterated to us that the domestic violence part of her story is an important part, as it defines the strength she has within her that helped her to cope with Eli’s treatment. 

“I know there are families in similar situations, who think they can’t cope, and I hope this will give them the hope and courage to make a choice,” she said.

“I made the choice to protect my baby from an abusive relationship, and yet I could not protect him from cancer,” she said.

“For me, that is the hardest part of Eli’s diagnosis…I don’t have the power to make it go away.”

Nelly and her son lived with her parents for 10 months, until they were able to move out on their own, on Eli’s first birthday. Slowly, they bought new belongings, turning their house into a home.

“Exactly 4 months after Eli and I moved into our new home, our world fell apart,” said Nelly.

Nelly suspected Eli had the symptoms of a UTI, which led to her to discover a lump in his belly the size of her fist and rush him to hospital.

“A few hours and two ultrasounds later, the nurses told me that it looked like a tumour and it was blocking his bladder,” said Nelly.

“I knew something was terribly wrong, but I never thought that I would ever hear the word ‘cancer’.”

By 7pm, Eli was transferred to the Monash Children's Hospital and had his first general anaesthetic for an MRI. The next day, Eli underwent biopsy surgery to ensure that his cancer had not spread.

Four days after Nelly discovered the lump, Eli started his first dose of intensive chemotherapy – a treatment that he is almost half way through.

“Eli has had too many general anaesthetics, scans and other procedures to count. He's had all the side effects that chemotherapy causes. And he’s lost his beautiful hair and long luscious lashes,” said Nelly.

Eli has struggled to regain weight, so had to have a nasogastric tube inserted.

“Since he's such a cheeky little monkey, I've had to learn insert the tube myself to save us the 45-minute trip to the hospital every time he pulls it out with his trademark cheeky grin and an ‘uh-oh’,” said Nelly.

“Eli’s little body is battling to fight this cancer, but his personality shines so bright that I'm blinded by it,” she said.

Nelly has always worked, and so the long days caring for Eli, especially after he has gone to sleep, and she is alone, have been hard.

“Parents have it tough on a normal day but when your child is sick, it tears apart your soul every moment of every day,” said Nelly.

Eli’s bright and cheeky personality has won over doctors and nurses at the Children’s Cancer Centre.

“From the moment we walk in to when we leave, he has everyone wrapped around his little finger and obeying his every command,” said Nelly.

“Eli’s resilience is what I strive for. His smile is what I fight for. And his laughter and happiness are what I dream of. He may be battling a monster inside, but it has not dulled his beautiful spirit one little bit.

“I've become even more determined to ensure he has a fulfilling and loving life and we do our best to make the most of each day no matter how hard that is to achieve sometimes,” she said.

Nelly thanks the staff at the Children’s Cancer Centre, many of whom are funded by the Children’s Cancer Foundation, who have helped Eli and herself throughout their cancer treatment journey.

“I can’t thank them enough for their support, generosity and care – I have so much respect for them and families they help each day,” said Nelly.

The Children’s Cancer Foundation thanks Nelly and Eli for the privilege of sharing their story.

If you or a loved one are struggling with your child’s diagnosis or treatment, please contact us to discuss accessing counselling by a qualified professional.

Young and healthy Elias