A mum has shared a harrowing ordeal after her toddler was diagnosed with terminal leukaemia three times which is rejecting all forms of treatment – now he’s on borrowed time.
When Michaela gave birth to her first child with her husband, Vincent, they were overjoyed – but eight months later, the pair suffered every parent’s worst nightmare.
The plucky tot began displaying signs of lethargy, along with being pale and having numerous lumps across his body, as well as unexplained bruising across his body.
The mum, aged 32, spoke with doctors but claims they told her it was an infection – then, on the fifth visit, he was rushed to the hospital and diagnosed with leukaemia, a form of blood cancer.
After relapsing twice, Raphael has now spent more of his life in hospital than at home and is currently on borrowed time, with his life expectancy unknown – especially as his body is rejecting treatment.
“Nobody knows how long he has left and someone even told us he only had a couple of days a few weeks ago,” the childminder, from Manchester, told NeedToKnow.co.uk.
“We’re making most of the time we have left by taking him out a lot, as he enjoys the fresh air, and planning fun trips, such as trips to the zoo and anything that includes nature, forests or water.
“I wish I could take it all away from him and my heart is sad that he’s had to have this life.
“It’s not fair and so cruel for an innocent child to endure the amount of pain and suffering he’s felt.
“Now his leukaemia is essentially rejecting any treatment he has, as it’s become invisible, so he’s in the last stage of the disease.”
Michaela recalls the first few months of his life being “textbook” with him hitting all the necessary milestones.
But then, after the aforementioned symptoms began, they sought out medical advice, where they found out that the “lumps” were in fact enlarged lymph nodes.
She said: “I came across a large bump under his armpit and little ones on his head while getting him dressed one morning and I was extremely worried.
“It didn’t seem normal, but I was a first-time mum, so thought I was panicking over nothing – but I knew something wasn’t right and the fear washed over me.
“When the consultant came in with the results of his diagnosis, they were kneeling on the floor and I could tell by their body language that it wasn’t good news.
“I screamed when they told us it was leukaemia and I felt sick to my stomach – I couldn’t stop crying and gagging.”
The following day, he was rushed to have a Hickman line attached to start treatment, which included giving fluids, chemotherapy and blood transfusions.
Over the next seven months, the three-year-old stayed in hospital, with his parents taking it in turns to go home.
In June 2021, he was declared cancer-free and the family was excited to celebrate his recovery – but then, six months later, he suffered a relapse.
The mum-of-one said: “One testicle had become enlarged, so both had to be removed.
“He had lots more chemotherapy and a bone marrow transplant but then had complications with his intestine, where he had to be fed on a drip for 12 hours a day.
“One day before he was due to be discharged, they confirmed he had relapsed once again and this time, it was terminal.”
In March 2023, he was placed on end-of-life palliative care and now, as there is no more treatment available for his case, they are left in a heartbreaking waiting game.
She added: “I’m completely numb.
“He’s tired but still tries to play and eat, but his body isn’t producing new blood anymore, so he has to have transfusions daily.
“We’ve had to give up work, so financially we’re strained and we don’t see our families much anymore.
“My advice to other people is to know the signs and symptoms to look out for and show your child strength.
“It’s important to have time out for yourself, as it’s detrimental for your own body and mind.
“Life in a hospital is exhausting and all the rollercoaster of news, treatment and machines make it impossible to rest.
“I can’t imagine how traumatising this has been for him.
“My funny, resilient and adorable boy is being taken away from us far too soon.”
