How does it feel to learn your newborn son was born with cancer? This is exactly what happened to Natasha Lucas. Shortly after being born, Natasha’s son Ashton was diagnosed with congenital Acute Myeloid Leukaemia (AML), a form of blood cancer that only affects 1 in 5 million people.
To raise awareness of this rare form of cancer, Natasha shares her family’s story with us in this blog. Read on to learn how she navigated this shocking news alongside her husband Nathan and Ashton’s older brother Levi.
Silence and fearing the worst
The staff asked if I wanted skin to skin when the baby was out. I said ‘yes’ as I’d missed out with Levi, my first.
A couple of moments later, Ashton was born. But after they pulled the curtain down briefly, they didn’t bring him to me, they took him away.
I couldn’t see over the curtain, but one thing I knew … it was quiet. Very quiet. Ashton hadn’t cried.
I know they don’t cry straight away but this seemed different. All the doctors looked at each other with facial expressions of concern.
My worry turned to shock when I saw Ashton for the first time a few hours later. It looked like he’d been in a boxing match with Mike Tyson. He was swollen and bruised with little lumps behind his ear, on his neck, on his back and on his eyebrow.
It was overwhelming. I broke down. It hurt even more when the nurses looked at us sympathetically. That didn’t fill us with hope.
Everything from then on is now a blur. We were transferred to Westmead. Ashton had a central line put in, a bone marrow aspirate, multiple skin biopsies and blood transfusions.
Then our worst nightmare was finally confirmed: Ashton was diagnosed with congenital Acute Myeloid Leukaemia (AML) and he had it quite severely.
Nathan and I couldn’t believe it. There was no way a baby could be born with such a horrible disease, we thought.
Pushing through doubt to find hope
The doctors gave us 2 options: Treat him with chemotherapy and he’ll only have a small chance of surviving. Or don’t treat him and he will surely die.
Which do you choose? Do you let him go without trying? Or do you go through with treatment, potentially doing more harm to him than good?
We decided to give him every fighting chance he has. But if I’m honest with myself, I wasn’t hopeful at the time.
I thought about what everyone would think when I told them our new baby had cancer. I thought of having to tell Levi why his baby brother couldn’t come home to meet him.
I didn’t want to get too attached to my son in case something went wrong… until a couple days into chemo, he looked at me.
It was the first time he had really opened both of his eyes. He stared at me, as if telling me through his gaze, “Mum, I’ve got this. You don’t need to worry”.
It broke my heart that he could possibly sense my doubt.
So, from that moment, I told myself to snap out of all the negativity and the what ifs. I told myself to live in the moment, take each day as it comes and make the most of the time we have with him.
From then on, we kept praying for Ashton every night and telling him how much we love him, how proud we were of him. And each day Ashton taught us a new lesson and continued to show us just how strong he is.
Finding connection and looking to the future
When you hear your cancer doctors say your son’s cancer is very rare, that they’ve only seen it three times in 30+ years of experience, it can be isolating.
Ashton went through three rounds of chemotherapy from when he was born in November 2020, through to April 2021.
Each round lasted 5-10 days and took 4-6 weeks to recover from. So, we had to stay in hospital for long periods of time. And it was hard because no one could meet him because of covid – Nathan couldn’t even stay with me on the ward.
Ashton then had a relapse in mid-2021 and needed more rounds of chemo. He also received a bone marrow transplant from an anonymous donor in Europe, and had to stay in hospital for further tests, anti-fungal and anti-viral treatment and blood transfusions.
As you can imagine, it’s been a long and difficult journey for us. Along the way, I started a Facebook Page for Ashton because writing helped me a lot mentally. I also wanted to raise awareness that you can, in fact, be born with cancer.
Since creating the Page, three families from the UK, two from the USA and one from Queensland have contacted me, as they’ve also had babies born with cancer. It means so much to us to be able to connect with these other families.
It also helped that the doctor we had was so attentive and reassuring. She told us to not dwell on the word ‘rare’. It doesn’t necessarily mean ‘bad’ or ‘no cure’. It just means that there aren’t many studies, so it makes it more difficult to pick the best treatment plan. Hearing it explained like this actually helped us a lot with our mental health.
Ashton’s at home with us now – he rang the bell in February 2022 – and we feel so thankful and blessed. He’s walking and healthy and is just the most beautiful, energetic and playful little boy I know.
Thank you to Natasha and family for so generously sharing your story with us, to raise awareness of congenital AML in our community. It really helps other people understand the real impact of cancer.
If you’re interested in sharing your cancer experience publicly like Natasha, we’d love to hear from you, too. Please visit this page to share your story with us.