Mum with stage 4 cancer welcomes miracle baby but worries how long she has left

A woman who believes she is the first person in the UK to give birth knowing she has stage 4 cancer, has had a healthy baby girl.

Joanna Jonathan, 36, from Haslingden, Lancashire, had baby Dylann on 15 June 2021, almost two years after being diagnosed.

‘Not being around my daughters is my biggest fear,’ she says.

‘Knowing one day I’ll not be here for my children is like a dagger to the heart. No mother signs up for this.

‘We’re supposed to protect our babies, we’re supposed to be here for them.

‘My children are so young, there’s a real possibility that they won’t remember me at all, only from pictures and what they’re told of me.

‘It’s heartbreaking, but they have an amazing father and I’m beyond grateful I got to give my babies the gift of each other.

‘They will forever know just how much I loved them. If my love for my children could keep me alive, I’d live forever.’

Despite her worries about not being around to see her girls growing up, Joanna and her husband Daniel were delighted to add to their family as it was something they didn’t think could happen after she was told she had ALK-positive lung cancer.

‘All my medical team, GPs, oncologists and midwives told me I was the first woman to have stage four cancer and have a baby,’ says Joanna.

‘While it’s not uncommon for women to be diagnosed during pregnancy, especially for the hormone-driven breast cancer, they don’t know of anyone who is two years into a stage four cancer diagnosis who has gone on to have a baby. It’s quite surreal.

‘I’m very lucky that although my cancer is incurable, it isn’t hormone driven so the option to have a baby hasn’t been taken away, which is the case for lots of other advanced cancers, unfortunately.

‘But I’m so very proud that I’ve given other women, and men, with ALK-positive lung cancer, hope for the future and having families of their own.’

Joanna was pregnant with Freya when she started experiencing a myriad of illnesses, including repeated chest infections, a cough, loss of appetite, breathlessness and a hoarse voice.

She was initially diagnosed with pleurisy, pneumonia and several other conditions. But with her health not improving she was eventually given a chest x-ray, followed by a CT scan and bronchoscopy.

Joanna was finally diagnosed on 23 July 2019 – 14 months after she started experiencing symptoms – and told she has ALK-positive lung cancer, which is a mutation in the DNA of the lung cells that happens when two genes become fused, mainly affecting young and middle-aged women.

The cancer had spread to her lymph nodes and both sides of her chest and she was told it was stage 4 – the most advanced stage.

In November that year, Joanna began targeted chemotherapy treatment, which included taking a drug called Alectinib.

Despite undergoing treatment, Joanna unexpectedly ended up falling pregnant.

‘It wasn’t planned at all,’ she says. ‘I was on contraception at the time and she is just a little miracle.

‘My pregnancy was tough. The anxiety that comes with a cancer diagnosis is only made worse by all those extra hormones.

‘Being such a unique case, there wasn’t really the support I think that I needed.’

Because Joanna already had cancer, she says she didn’t qualify for the care given to those diagnosed during pregnancy. She says this caused some issues when she needed treatment because nobody really knew what to do with her.

‘But I had amazing support from my family and I got through it just fine,’ she adds.

Even though the drug treatments are not recommended during pregnancy, Joanna and her doctors decided to go ahead with the course.

They made sure the baby was developing healthily with regular scans and check-ups.

‘I take targeted therapy in tablet form every day,’ she says. ‘Stage 4 cancer isn’t curable, but it can be maintainable for several years.

‘Whilst the drugs aren’t recommended during pregnancy, for me the risks of stopping outweighed the risks of staying on them.

‘I had a long discussion with my team before making any decisions.

‘I had extra scans to ensure the baby was developing as she should and all was okay, she is absolutely perfect.’

The family were delighted to welcome Dylann in June and the now three-month-old is doing well.

‘I already had Freya, she was six months old before my diagnosis but I didn’t think I would be able to give her a sibling,’ she says.

‘I have two sisters and a brother who I am very close to so I’m overjoyed to be able to give my girls that relationship.

‘Whatever happens in the future, they’ll never have to face it alone.’

Although Joanna is continuing treatment, she knows that her cancer is incurable and she may not be able to see her children grow up.

Joanna tries to stay positive and hopes to be there for Daniel and the kids as long as possible.

‘Right now, I have to live in the state of mind that I have years and years left,’ she says.

‘I can’t face the alternative at the moment.

‘My husband and I have talked and he knows my wishes but that’s a far as we’ve got.

‘I’ll know when the time is right, unfortunately, death by cancer is often slow and painful, I’ll have time to prepare when I need to.

‘But I hope that’s not for a long time yet.’

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