When Michaela gave birth to their first child, she and her husband Vincent were overjoyed.
Little Raphael was the perfect bundle of joy they were hoping for – and the first few months of his life were “textbook”.
But at the age of eight months, the couple suffered every parent’s worst nightmare.
The brave boy showed signs of lethargy, was pale and had numerous bumps and bruises all over his body.
His mother, 32, took him to his GP but claimed doctors told her it was an infection.
Then, on her fifth visit, Raphael was taken to the hospital, where he was diagnosed with leukemia, a form of blood cancer.
Although initially better, he relapsed twice and now refuses any treatment.
His life expectancy is unknown and Michaela and Vincent fear that he could die any day.
Michaela, a childminder from Manchester, said: “No one knows how long they have left and a couple of weeks ago someone even told us they only have a few days.”
“We use the time we have left to go out with him a lot because he enjoys the fresh air and to plan fun trips, for example to the zoo and to everything that has to do with nature, the forest or water .”
“I wish I could take everything from him and my heart is sad that he had to live this life.”
“It is not fair and so cruel for an innocent child to endure the pain and suffering that he has felt.
“Now his leukemia is essentially refusing any treatment he has as it has become invisible leaving him in the final stages of the disease.”
Michaela recalls that the first months of his life were “textbook” and Raphael achieved all the necessary milestones.
But after examining his symptoms, they discovered that the “lumps” on his skin were actually enlarged lymph nodes.
“When I was putting him on one morning, I noticed a big bump under his armpit and small bumps on his head and I was very concerned,” Michaela said.
“It didn’t seem normal, but I was a first-time mom and I figured I’m not panicking about anything.”
“But I knew something was wrong and the fear got over me.
“When the counselor came in with the results of his diagnosis, they were kneeling on the floor and I could tell from their body language that it wasn’t good news.”
“I screamed when they told us it was leukemia and I felt sick — I couldn’t stop crying and gagging.”
I screamed when they told us it was leukemia. I couldn’t stop crying and choking.
The next day, Raphael was promptly fitted with a Hickman tube to his chest so he could begin treatment, which included fluids, chemotherapy, and blood transfusions.
For the next seven months, the three-year-old remained hospitalized with his parents taking turns going home.
He was declared cancer-free in June 2021 and the family were delighted to celebrate his recovery.
Tragically, he relapsed six months later and was diagnosed for a second time.
The mother-of-one said: “One testicle was enlarged so both had to be removed.”
“He had many more chemotherapy treatments and a bone marrow transplant, but then he developed complications with his intestines, where he had to be IV-fed for 12 hours a day.”
Then, the day before his scheduled discharge, doctors confirmed that he had relapsed again, this time ending incurably.
In March 2023, Raphael was placed in end-of-life care, and with no treatment available, his parents endure a heartbreaking wait.
“I’m totally deaf”
“I’m completely deaf,” said Michaela. “He’s tired but still trying to play and eat.
“His body is no longer making new blood, so he has to have transfusions every day.
“We had to quit work, are financially strained and don’t see our families very often anymore.”
With their devastating story, the couple wants to help prevent others from going through the same pain.
“My advice to other people is to know the signs and symptoms to look out for and show strength in your child,” Michaela said.
“It’s important to have some downtime for yourself because it’s detrimental to your body and mind.”
“Life in the hospital is exhausting and the roller coaster ride of news, treatments and machines makes it impossible to rest.
“I can’t imagine how traumatic that was for him.
“My fun, resilient and lovely boy is being taken away from us way too soon.”
What are the symptoms of childhood leukemia?
Leukemia is the most common cancer in children under the age of 15.
More than 650 children and young adults are diagnosed with the disease in the UK each year.
It is a type of blood cancer that affects the white blood cells in the blood and bone marrow.
Some types of leukemia are acute, meaning they develop quickly, while others are chronic and develop more slowly.
Leukemia in children is almost always acute. Symptoms include:
- Constant tiredness
- feeling breathless
- More prone to bruising
- nosebleeds or bleeding gums
- A petechial rash (round red or purple patches on the surface of the skin that don’t change color when you press on them)
- Frequent infections
- weight loss
- Swollen lymph nodes in the neck
- stomach pain or swelling
- bone pain
- night sweats
- General malaise
Treatment depends on the type of leukemia and the patient’s general health, but often includes chemotherapy or stem cell transplantation.
Survival rates are improving. Between 1997 and 2001, 79% of 0-14 year olds and 56% of 15-24 year olds survived.
From 2012 to 2016, the leukemia survival rate had improved to 88% in 0-14 year olds and 76% in 15-24 year olds.
Source: Blood Cancer UK