How a PICC Line Improved 10-Year-Old Sidney’s Care

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.

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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.

“Sidney’s coping a lot better with the PICC line than he was with the port access,” begins Hazel. “Getting access via a needle [through the port access] week in, week out was too much for him.” Much like those initial blood tests, the port access required Hazel to hold Sidney down. “He refused to let anyone near him.” For six months, the use of gas and air to help calm Sidney down worked, until Hazel decided the port access was too exhausting - for both her and Sidney.

“We gave Sidney the option over whether to have the port removed and the PICC line fitted. He chose the PICC line and we haven’t looked back. I no longer have to sit Sidney on my lap, and he just lets the ellenor team get on with it.” In fact, Sidney’s becoming increasingly involved in caring for his PICC line, removing the protective sticker and flushing the line through himself - something ellenor’s nurses are happy to encourage.

Under the care of Medway and Royal Marsden Hospital, Sidney is primarily looked after by ellenor’s Senior Staff Nurse, Suman Turner, who comes to Sidney’s home every week. If she’s away on annual leave, ellenor nurses Tina or Megan will care for Sidney. “He knows his nurses well,” says Hazel. “We try to stick with Suman as much as we can to keep everything as normal as possible for Sidney.”

This partnership between ellenor and tertiary hospitals provides families with access to highly-skilled professionals, working together around the care of the child. Community care and monitoring means that families spend less time travelling to hospitals for treatment that can just as effectively be administered at home, like PICC line maintenance.

With the PICC line, Sidney is still mobile but care must be taken to not get water in it to avoid infection. “He does a lot of running around but can’t participate in contact sports or go swimming. During bathtimes, he also has to have his arm in the air so he can be washed. This is pretty normal for us, we’ve lived with [similar restrictions] over the past few months anyway.”

Back to School Highs and Finding the Strength to Combat the Lows

As lots of parents with unwell children will appreciate, gaining back control and returning to a routine is a major triumph. Seeing friends, learning with peers and feeling “normal” can help many children on the path to recovery. And what better way to reinstate on-site school learning than being awarded “Pupil of the Week” during the first week back?!

When speaking of the lows, Hazel struggles to explain the emotion behind parenting an unwell child. “One minute everything is fine and then the next minute the whole world has been turned upside down. Until you have that thrown at you, you don’t realise how strong you are. When you’re in this situation, the only choice you have is to be strong and carry on.”

Despite having some very low days, Hazel knows she can’t fall apart. Having a support network rallying around is essential to finding inner strength and ellenor provides exactly this. “The ellenor nurses have been there since day one.” From adapting care when Sidney refused to be needle-accessed at home to reinstating home visits with the newly-added PICC line, for Suman and ellenor nurses, Sidney’s care was Sidney-led.

“I can’t fault the ellenor team. Suman’s been absolutely fantastic.”

Fortunately for this family, there’s light at the end of the tunnel. Counting the days to the all-clear, Hazel can’t wait for it all to be over. To other parents with children struggling with a life-threatening or life-limiting condition, she advises, “Just take each day as it comes. When you both wake up the next day, consider it a bonus because no one knows what’s around the corner.”