Mom who lost son at 14 says cancer was ‘completely off our radar’

Louise Bennett, 50, is urging parents to be aware of the symptoms of childhood cancer after tragically losing her son Fred to the deadly disease.

Fred was 13 years old when he was diagnosed with acute lymphoblastic leukemia (ALL) in July 2019.

He had initially seemed simply tired and off his food which his family put down to normal teenage changes and the end of the school year.

And when his glands began to swell, they took him to the GP thinking it was probably glandular fever.

Louise, of Rugby, Warks., said: "When he began to feel tired and was off his food, we thought it was just typical 13-year-old changes, and the end of the school year.

"He had recently broken his shoulder in an ill-advised rugby tackle so we thought he just needed rest.

"When his glands began to swell, we suspected glandular fever and took him to the GP, who recommended a blood test to confirm.

"Within hours, we were in A&E being told that it was leukemia.

"He was immediately transferred to Birmingham Children's Hospital to begin his treatment."

Fred began a three-year treatment plan of chemotherapy but he still had leukemia in his bone marrow after his first six-week course.

Louise, who is married and has one other child, added: "He was moved onto a stronger course of treatment but this was still not effective.

"Early in 2020, as his leukemia was refractory he became eligible for CAR T-cell Therapy, a new form of treatment that used the body's own cells.

"Even though there were complications along the way, including a seizure and a positive COVID diagnosis, we continued to be hopeful that this treatment would work where chemotherapy had failed."

Sadly, Fred died in May 2020, aged 14.

Louise, who works in marketing, added: "Fred died shortly after he had received the CAR T-cells, nine months after diagnosis.

"They proved to be no match for the leukemia, which suddenly picked up speed and overwhelmed him.

"It all happened so quickly that he never knew he was dying."

Louise said she was aware of the signs of meningitis and sepsis — but is urging all moms and dads to be aware of cancer signs too.

It comes after a study published in the British Journal of General Practice found a child's risk of developing cancer is comparable to the risks of other childhood conditions such as diabetes, epilepsy and bacterial meningitis.

Louise added: "I didn't know anything about childhood cancer in terms of what to look for.

"I had memorized all the symptoms of meningitis. I knew about sepsis.

"I actually sent my husband a list of sepsis symptoms the day before we took him to the GP because that was in my mind.

"But a cancer diagnosis was completely off our radar."

The Children and Young People's Cancer Association says about 1,900 children aged 0-14 are diagnosed with cancer in the U.K. every year, and cancer remains the leading cause of death from disease among children.

Dr. Sharna Shanmugavadivel, a pediatric emergency medicine doctor, said: "While childhood cancer is uncommon, it is important that families understand it is not as rare as many people may think.

"Many people will be surprised to learn that the risk of a child developing cancer is comparable to the risks of other childhood conditions.

"Unfortunately, childhood cancer can be difficult to recognize because many symptoms, such as headache, vomiting or changes in behavior, are also common in everyday childhood illnesses.

"Rather than focusing on a single symptom, we are encouraging parents and carers to look out for patterns of change in their child's health that may need investigating.

"Parents know their child better than anyone. Our aim is not to cause concern, but to empower families with the knowledge and confidence to recognize when something feels different, speak to a healthcare professional when needed, and support earlier diagnosis that can improve outcomes for children with cancer.

"If symptoms don't go away after two weeks or something doesn't feel right, trust your instincts and see a doctor."

The three patterns to watch for, according to CCLG: The Children and Young People's Cancer Association:

Persistent symptoms that do not improve or go away as expected and keep coming back after a child has been unwell. Parents and carers should look out for symptoms that last longer than expected or where their child is taking more time than usual to recover from an illness.

Progressive symptoms that get worse, become more frequent or change over time rather than improving as expected. Parents and carers should look out for changes in the way symptoms develop.

For example, a child may start with one symptom, such as a headache, but over time the symptom may become more severe or additional symptoms may appear.

Clustered symptoms — a group of symptoms that appear together rather than a single symptom on its own. Parents and carers should look out for combinations of symptoms, particularly when they occur at the same time, persist or seem unusual for their child.

For example, a child who has ongoing tiredness alongside unexplained bruising, persistent pain, fever, or a lump may need further medical advice.

Symptoms of childhood cancer vary depending on the type of cancer, but some of the more common signs and symptoms include persistent tiredness or paleness, repeated infections, flu-like symptoms that don't go away, unexplained bruising or bleeding, ongoing fever or night sweats, persistent aches or pains, unexplained lumps or swelling, limping or leg weakness, changes in bowel habits, unexplained weight loss, slow growth and changes in behavior.