A mother has told of her gruelling terminal liver cancer battle which began just two weeks after her son was born – and left her unable to hold him due to the pain.
Gemma Small, 31, of the town of Horwich, Greater Manchester, received the awful diagnosis just after little Samuel was born in early February this year.
The early help council worker, who may now have as few as six months to live, told the Daily Mail: ‘I wish I could do more.
‘It makes me upset that I can’t and I feel like I’m missing out on time.’
And devastatingly, this is not Ms Small’s first fight against the brutal disease.
She underwent six months of treatment, ending in March 2023, for a rare type of eye cancer called uveal melanoma.
After finally getting the all clear, she and her partner, joiner Ciaren Hughes, 34, decided to start trying for a baby, ready to start their family life together.
They had put it off for years amid a series of challenging health difficulties for Ms Small, who broke her hip in 2019.
Gemma Small (pictured, with partner Ciaren), 31, of the town of Horwich, Greater Manchester, received the awful diagnosis just after little Samuel (pictured) was born in early February this year
The early help council worker (pictured with Samuel), who may now have as few as six months to live, told the Daily Mail: ‘I wish I could do more’
Devastatingly, this is not Ms Small’s first fight against the brutal disease. Pictured: The family together
She also has Lupus, an incurable autoimmune disease which causes joint pain, skin rashes and tiredness.
This is on top of a rare condition called hereditary angioedema, which causes flare-ups of swelling in the skin, airway and intestines.
The family have now created a GoFundMe page to raise money for a much-needed course of private treatment.
If it does not work, they plan to donate any remaining funds to others undergoing the same treatment.
Ms Small’s first diagnosis back in 2022 came as a ‘surprise’: ‘I’ve gone to the optician thinking I just needed glasses because I was getting a bit of blurred vision.’
But she was thankfully successfully treated with surgery and proton beam therapy – with doctors even telling her she was in the lowest risk category for relapse.
‘We thought, “It’s time for a fresh start now, have a baby, everything’s going in the right direction”‘, Ms Small explained.
Their beloved Samuel was soon born: ‘It was just a long time coming. I feel like we’d waited for so long, when we finally had him, it was tiring!
She underwent six months of treatment, ending in March 2023, for a rare type of eye cancer called uveal melanoma. Pictured: The family together
After finally getting the all clear, she and her partner, joiner Ciaren Hughes, 34, decided to start trying for a baby, ready to start their family life together. Pictured: Ms Small with Samuel
‘But we kind of felt a bit more complete, like we’d got what we’d been waiting for and we were ready to start making plans for the future things we want to do with him.
‘And then things went downhill very quickly.’
Ms Small had a routine scan booked for two weeks after the birth, Mr Hughes said: ‘We were debating whether to go for it or not because we just thought, “Nothing will come of it”.
‘But Gemma went for it anyway. And it was at that point they said they’d found a shadow on her liver.’
Though there was no live tumour on her eye this time, heartbreakingly, the cancer had spread to her liver – and it was at stage four.
Her mother, teacher Paula Small, 54, said: ‘It was just grim… It’s not what you want for any of your children, is it? And it’s not how it should be.’
And in a testament to her daughter’s character: ‘Gemma’s first response was apologising because we were all upset and she was apologising for us being upset.’
Going for the scan was Ms Small’s first time leaving her son, she added: ‘We’d actually been joking about it.
Ms Small’s (pictured with Samuel) first diagnosis back in 2022 came as a ‘surprise’: ‘I’ve gone to the optician thinking I just needed glasses because I was getting a bit of blurred vision’
But she was thankfully successfully treated with surgery and proton beam therapy – with doctors even telling her she was in the lowest risk category for relapse. Pictured: Ms Small with Samuel
Her mother, teacher Paula Small (pictured), 54, said: ‘It was just grim… It’s not what you want for any of your children, is it? And it’s not how it should be’
‘It was the first time she’d left him because we didn’t really want to be trailing him to the hospital.
‘And so, we were just joking about having to leave him for the first time, just to be told it’s an all clear again.’
The assessment of the scans was taking a long time: ‘She said, “Come on, let’s just go home, I want to get home to Samuel, it’s not going to be anything.”
‘And we just drove home. They told us while we were still in the car, just parked outside the house.’
Ms Small had been told lower risk patients such as herself did not normally get check-in scans but doctors offered them to her because of her young age.
‘I was seeing it as a reassurance scan’, she said, ‘so finding out something had come up from it was a shock and it just threw us’.
The scariest thing? ‘I felt perfectly fine. I had no signs, no symptoms, nothing…
‘In some ways, you don’t want to know but in other ways, it’s good because at least now we’ve been able to do something about it.’
‘We thought, “It’s time for a fresh start now, have a baby, everything’s going in the right direction”‘, Ms Small explained. Pictured: The family together
The cancer returned two weeks after Samuel was born. Though there was no live tumour on her eye this time, heartbreakingly, the cancer had spread to her liver – and it was at stage four. Pictured: The family together
In a testament to her daughter’s character, Ms Small’s mother (pictured) said: ‘Gemma’s first response was apologising because we were all upset and she was apologising for us being upset’
They were soon given the heartbreaking news there were no treatments available on the NHS: ‘It just felt like they’d already given up before anything was happening.’
Mr Hughes explained this was because of her Lupus, which affects her immune system and makes it not strong enough for immunotherapy.
This is a common cancer treatment, which sees the body’s own immune system leveraged to recognise and attack cancer cells.
So, they have ended up having to take matters into their own hands, going private to undergo chemosaturation therapy.
Doctors cut the liver off from the rest of the body and intensely target just that organ with chemotherapy, meaning the side effects are not as bad as regular chemo.
But Mr Hughes said: ‘It’s not a cheap deal. The last thing any of us want to do as a family was to ask for money.
‘But we kind of realised that this isn’t something we could possibly ever, ever accomplish on our own.’
Ms Small needs four rounds, each costing £40,000 – totting up to an eye-watering £160,000 total, with the family emptying their savings to pay for it.
‘I was seeing it as a reassurance scan’, she said, ‘so finding out something had come up from it was a shock and it just threw us’. Pictured: Ms Small with Samuel
The family have now created a GoFundMe page to raise money for a much-needed course of private treatment. If it does not work, they plan to donate any remaining funds to others undergoing the same treatment. Pictured: Ms Small with Samuel
She has had three rounds so far – and things are looking good, even from just after the second round, which saw the tumour shrink by just over 50 per cent.
‘They said, “We’ve never seen those results before after just two treatments”‘, she explained.
She hopes the four rounds will eradicate the tumour enough that it will ‘open up options’ with the NHS: ‘You don’t just want to sit back and accept it.’
But it takes a toll, with the family – including baby Samuel – needing to take the roughly six-hour drive down to Southampton for the specialist treatment every four to six weeks.
It is a short window to fit in recovery from the last round and pre-op prep for the next: ‘It doesn’t leave us much time for life in between.’
And it is ‘exhausting’, Ms Small added, leaving her nauseous, tired and bruised, with thinning hair and no appetite.
Her Lupus-related joint pain and fatigue has returned too – she had to stop the immunosuppressants she takes to manage it to be strong enough for the cancer treatment.
Mr Hughes also emphasised: ‘Even with private treatment, even though we’re hoping, completely hoping, that Gemma kicks its arse and we get some sort of miracle out of it, it is a terminal illness.’
The family (pictured) treasure the ‘cheap days out’ they are able to have, often with a picnic to a park, as they save every penny they can for the treatments
Ms Small added she was ‘frustrated’ the NHS started by telling her there was nothing to be done – only to mention the possibility of private treatment once she asked.
‘It should be for everyone. You shouldn’t only be able to get the treatment if you can pay’, she said.
She was told they were hoping to get NHS funding for this kind of treatment by next year: ‘But that doesn’t help me.’
The couple were deeply thankful for the support from family, friends and colleagues, who have donated raffle prizes, undertaken sponsored bike rides and runs and attended walks and coffee mornings all to help raise money.
Ms Small dreaded to think what they would have done without it: ‘It’s just horrible, what could have happened… We wouldn’t have got this far without everyone else.’
And they treasure the ‘cheap days out’ they are able to have, often with a picnic to a park, as they save every penny they can for the treatments.
Even now, she hates to think of missing all Samuel’s biggest landmarks: ‘His first birthday, when he starts nursery, when he starts school, all the things you want to be able to get to.
‘I think that’s what hurts the most, knowing that might not happen.’
But Mr Hughes was determined about their son’s first birthday: ‘We’re going to make sure you get to see that.’
NHS England makes the decisions about what treatments are funded on the NHS.
An NHS spokesperson said: ‘NHS England is currently reviewing new evidence and a policy proposal that it has received.
‘While this review is underway, the commissioning position remains that NICE guidance does not require the NHS to make chemosaturation routinely available, and that it can have serious complications.’
