My little boy has been diagnosed with leukaemia three times – I’m terrified he could die any day
WHEN Michaela gave birth to her first child, she and her husband Vincent were overjoyed.
Little Raphael was the perfect bundle of joy they had hoped for – and the first few months of his life were “textbook”.
But by eight months old, the couple suffered every parent‘s worst nightmare.
The plucky tot began displaying symptoms of lethargy, along with being pale and having numerous lumps and bruises across his body.
His mum, 32, took him to see his GP, but claims doctors told her it was an infection.
Then, on their fifth visit, Raphael was rushed to hospital, where he was diagnosed with leukaemia – a form of blood cancer.
Despite initially getting better, he relapsed twice and is now rejecting all forms of treatment.
His life expectancy is unknown, and Michaela and Vincent fear he could die any day.
Michaela, a childminder from Manchester, said: “Nobody knows how long he has left, and someone even told us he only had a couple of days a few weeks ago.
“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 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”, Raphael hitting all the necessary milestones.
But after getting his symptoms checked out, they discovered the “lumps” on his skin were actually enlarged lymph nodes.
“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,” Michaela said.
“It didn’t seem normal, but I was a first-time mum so I thought I was panicking over nothing.
“However, 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.”
I screamed when they told us it was leukaemia. I couldn’t stop crying and gagging.”
Michaela
The following day, Raphael was rushed to have a Hickman line attached to his chest so he could 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 were excited to celebrate his recovery.
Tragically, six months later, he suffered a relapse and was diagnosed for a second time.
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.”
Then, on the day before he was due to be discharged, doctors confirmed he had relapsed again and this time it was terminal.
In March 2023, Raphael was placed on end-of-life care and now, as there is no more treatment available, his parents face a heartbreaking waiting game.
‘I’M COMPLETELY NUMB’
“I’m completely numb,” Michaela said. “He’s tired, but still tries to play and eat.
“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.”
The pair want to use their devastating story to help ensure others don’t have to go through the same pain.
“My advice to other people is to know the signs and symptoms to look out for, and to show your child strength,” Michaela said.
“It’s important to have time out for yourself, as it’s detrimental for your own body and mind.
“Life in hospital is exhausting and the rollercoaster of news, treatment and machines makes 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.”
What are the symptoms of childhood leukaemia?
Leukaemia is the most common cancer in children under 15.
More than 650 kids and young adults are diagnosed with the condition every year in the UK.
It is a type of blood cancer that affects white blood cells in the blood and bone marrow.
Some types of leukaemia are acute, meaning they develop quickly, while others are chronic and develop more slowly.
Leukaemia in children is almost always acute. Symptoms include:
- Constant tiredness
- Feeling out of breath
- Dizziness
- Paleness
- Being more prone to bruising
- Nosebleeds or bleeding gums
- A petechial rash (round red or purple spots that appear on the surface of the skin that don’t change colour when you press them)
- Frequent infections
- Fever
- Weight loss
- Swollen lymph nodes in the neck
- Stomach pain or swelling
- Bone pain
- Night sweats
- Generally feeling unwell
Treatment depends on the type of leukaemia and a patient’s overall health, but it often involves chemotherapy or stem cell transplants.
Survival rates are improving. Between 1997 and 2001, 79% of 0 to 14-year-olds and 56% of 15 to 24-year-olds survived.
By 2012 to 2016, leukaemia survival had improved to 88% for 0 to 14-year-olds and to 76% for 15 to 24-year-olds.
Source: Blood Cancer UK