On course to make a full recovery before Christmas 2023, Sidney (10) has been a very unwell young boy since his diagnosis of lymphoid leukaemia in September 2020. Following years of school absences and online learning, Sidney is now back to school, looking forward to learning and playing with friends.
Mum Hazel spoke about the highs and lows of the past few years and how the family’s decision to insert a PICC line vastly improved Sidney’s experience of care.
The Battle for a Diagnosis
In September 2020, Sidney started the school year like all the other seven-year-olds in his class. After six months of Covid lockdowns and restrictions, teachers, parents and children felt cautiously excited about returning to normality. Yet Sidney had only gone back to school for half a day before Hazel was told something was wrong. “The school called me up and said Sidney’s got a high temperature and I need to pick him up. That’s how it all started,” explains Hazel.
At first, everyone thought Sidney had Covid, then Covid-related lethargy. “He was tired, not wanting to do what a child would usually want to do. We thought it was because we’d been in lockdown and he was adjusting” but when his temperature didn’t shift and he was still showing the tail-end symptoms of tonsillitis and a severe ear infection, Hazel took Sidney to the GP.
None of the myriad GP appointments indicated a serious illness. Certain something was up as Sidney wasn’t getting any better, Hazel pushed harder. “I was on the phone to [the doctors] pretty much every day,” she says. And so, before booking Sidney in for another GP appointment, his doctor suggested conducting a series of blood tests.
“I took Sidney for blood tests and had to physically hold him down. The doctors couldn’t draw blood from his veins so both Sidney’s hands and arms were prodded.” Finally, they had --success and within six hours, Sidney was diagnosed with lymphoid leukaemia.
Explaining Leukaemia to a Child
When the battle for a diagnosis was won, next came the challenge of explaining to a seven-year-old that they have a life-threatening illness.
“We explained to him that his blood wasn’t working. He had some bad blood that was attacking the good cells and he needs medicine to make the bad blood better.” Hazel felt relieved Sidney understood, though it’s taken him until only recently to be open enough to talk about his illness at home and school. Perhaps he has been piecing together his understanding over the years; Hazel admits that she now realises that Sidney understands much more than she anticipated…
“I can’t wait for it all just to be over now,” Hazel says. “It’s taken its toll; enough is enough.”
The Life-changing Nature of a PICC Line
Unsurprisingly, Sidney developed a needle phobia since the diagnostic investigations and with each distressing blood test, anxiety around treatment accumulated.
Working with the ellenor team, the family found a solution. Since February 2023, Sidney has had a PICC (peripherally inserted central catheter) line - a long, thin tube that’s typically inserted through a vein in the arm and passed through to the larger veins near the heart. With a PICC line in place, there’s no longer the need to regularly insert needles into needle-phobic Sidney.