By Hannah Crocker
The parents of a seriously ill baby who had an orange-sized tumour are begging for help to save his life.
Little seven-month-old Tobias Duncan-Hambolu has been battling infantile fibrosarcoma, a rapidly-growing cancerous tumour, since he was just eight weeks old.
At a routine GP appointment, a doctor felt a lump in his stomach – but when Tobias stopped eating, his worried parents Katharine Duncan and Isaac Hambolu, both 29, took him back to the GP the next day.
The doctor told them to take him straight to hospital, where medics found a massive tumour in his abdomen.
The brave tot has had more than three times his body weight in blood transfusions, and undergone gruelling chemotherapy – but his aggressive cancer hasn’t responded to treatment, and he has since developed three more tumours.
Tobias – who has spent more of his life in hospital than at home – is fed by a tube every three hours because the tumours make him so poorly – and doctors have warned there is not much more they can do for the youngster.
Now, his desperate parents are trying to raise £200,000 so he can take part in an experimental immunotherapy trial in the USA, which will target the root cause of the tumour.
“The pregnancy and labour went absolutely fine, and he was a healthy 7lbs 5oz when he was born, so we presumed it was something that would pass.
“We went to the GP for his eight-week check-up, and she said she could feel a lump on his right-hand side, towards the back – she told us to keep an eye, and come back if anything changed.
“But the next day he wasn’t feeding at all, so we went back to the GP – she said she’d been thinking about Tobias since his appointment, and that we should take him to A&E.
“At that point, we knew something wasn’t right.”
Tobias was taken to the Royal Manchester Children’s Hospital, where he was given an ultrasound and put on fluids before being admitted to the oncology ward.
He was later diagnosed with infantile fibrosarcoma, and doctors told Katharine and Isaac that the rare cancer was one of only 50 cases in Europe in the past two decades.
Katharine said: “I’ve got a medical background, and I could see the ultrasound didn’t look normal.
“Immediately, it was presumed he has a cancerous tumour – Isaac and I were devastated.
“He was put on a feeding tube and given a lot of injections which he wasn’t happy with – he was crying and bruised, and it was very upsetting for us.
“We were told this type of cancer normally responds well to chemotherapy, but Tobias’ cancer is unusually aggressive – he also had an operation to remove the tumour, but doctors weren’t able to remove it all because it extended into his spine.
“Since starting chemo, he has grown three new tumours – his first tumour was the size of an orange, and as nothing showed on any pre-natal scans we think it must’ve grown since he was born, and another tumour that’s the size of a plum must’ve grown in the past month.
“He’s now started on stronger chemo – but because his case is so rare, there’s no protocol to say what his treatment should be.
“If the chemo still doesn’t work his only options are radiotherapy, which we’ve been told will be painful for him and unlikely to work, or radical surgery – but we’ve been told even that is unlikely to get rid of the cancer.
“I refused to give up on Tobias, and started researching online where I found a paper about immunotherapy, which is directed at the gene causing his tumour.”
Determined Katharine wrote to the drug company running an immunotherapy trial at the Farber Institute in Boston, USA, who told her Tobias was a good candidate – and that in similar cases, tumours had reduced by 90 per cent.
Since being diagnosed, little Tobias has had 30 units of blood – more than three times his body weight – and has undergone round after round of gruelling chemo – but so far, nothing has worked.
Tobias also has a rare B negative blood type – just two per cent of blood donors are this blood type, and they are usually ethnic minorities, which means his blood is in short supply.
Katharine and Isaac are working with NHS Blood and Transplant to encourage more minority and mixed-race donors to come forward, and the desperate couple have set up a JustGiving page to crowd-fund for the life-saving treatment.
Katharine said: “We’ve got to raise £200,000 to get Tobias over to Boston for the trial.
“He’s had three rounds of the stronger chemo so far and has three more to go, but if he grows another tumour they’ll have to stop it – and if the tumour is somewhere like his heart or lungs, they won’t be able to operate.
“So this is his last option – if the chemo doesn’t work, his only options here are palliative.
“He’s been through so much in his short life, but he’s still such a happy baby.
“He’s in pain a lot of the time and he throws up a lot, but despite everything he still smiles and he’s still progressing even though he’s so poorly.
“When he was first diagnosed it was absolutely horrific – I was still hormonal and I cried all the time, especially when he was having needles and tubes stuck down him – the hospital had to put me in isolation so I didn’t upset other mums.
“But as time’s gone on, it’s become our new normal.
“Isaac and I just want Tobias to have the best chance he can.
“There are times when I just want to break down and cry, but I can’t mope – if I was upset Tobias would see it and it would upset him.
“If he doesn’t have a lot of time left then I want him to be happy, so we try and stay happy for him.
“Being around him is all I need to be happy – I’ll never stop worrying, but as long as we’ve got Tobias we’ll be OK.”
To make a donation click treatment for Tobias.