Children's Hospice Week: How ellenor helps families get on with living their lives
For teenager Jack Browne and his family, support from the ellenor charity has meant a return to the normality of home and school that once seemed impossible.
When Kerry Browne’s 12-year-old son Jack was diagnosed with leukemia in June 2018, the situation snowballed quickly. After Jack’s body reacted badly to intensive chemotherapy treatment at Surrey’s Royal Marsden hospital, mother and son found themselves having to stay there- Jack as a patient, Kerry supporting him – for months in a row. “The care there was outstanding, but the whole situation was just such a bolt from the blue: one minute Jack was being checked out in A&E, the next we were away from home and he was hospitalised,” recalls Kerry. As a result, Jack’s anxiety levels around being in a hospital setting, “hit the roof”, and by September 2018 he was desperate to leave. “The Marsden team were brilliant at assessing how Jack was responding to his treatment in every way – both physically and mentally - and could see that a home setting would be far better for him; that’s when they came up with an alternative.”
With the Brownes living and working in Gravesend, the Marsden team suggested referring Jack to their local hospice charity, ellenor, for continued chemo treatment at home. “They told me that they often rely on organisations like ellenor to take the pressure off patients and their own resources,” says Kerry. “At first my heart sank, though. You hear the word ‘hospice’ and you just think ‘end of life’, but the Marsden staff were quick to put me straight and to stress that ellenor’s services are really wide-ranging. And they assured me that ellenor would be able to offer us plenty of support – something I really needed to hear, as we’d relied for so long on the Marsden 24/7 that I wondered how we’d cope away from them.”
From the referral onwards, the Marsden and ellenor teams liaised with one another, leaving Kerry and husband Mark with nothing to organise bar the signing of a little paperwork. “I got a call from ellenor just before Jack came home in September 2018, saying ‘We’ll be in on such-and-such a day this week, and, if it works for you, this is our plan,’ and it’s been that way ever since.”
Once back at home, Jack had a range of health complications as result of his treatment, but with the support of his consultant and ellenor’s nursing team, he got on top of them. Thankfully, these days, things are on a far more even keel for Jack – now aged 14 – his parents, and his 17-year-old brother, George.
“We all really appreciate the security that a routine brings, and of course it’s made a real difference for Jack, who’s happy, confident and busy back at school,” says Kerry. “He’s gone from having daily IV chemo treatments with the nurse at home to what’s known as ‘Routine Maintenance’, which we began in February 2020. Jack’s bloods are checked every week by Trish, his regular nurse, and they’ve got a fantastic relationship – he knows he can call her any time, day or night, for advice, support or just a chat.” In addition to check-ups from Trish, Jack takes a daily chemo tablet and sees his consultant back in the Marsden every 12 weeks.
But while helping the family maintain a routine has been a key part of ellenor’s role in supporting them, Kerry says the team’s flexible, patient-centred ‘can-do’ approach has proved invaluable, too. “Every step of the way, ellenor’s support has been about working around our needs, always being ready to accommodate new situations and supporting us in adapting to them. For instance, if Jack needs routine treatment during school time, rather than keeping him at home or his having to come out of school to receive it, Trish will just nip into his school, Jack will meet her in the sick bay and, quarter of an hour later, he’s back in the classroom.”
It seems, then, that the Brownes have come a very long way from the days of Jack’s first referral to ellenor and Kerry’s initial speculation as to what that involvement might mean. “What I know now is that nothing is too much trouble for ellenor, they support us in every way that they can and all free to those they support, without a penny of government funding. Ellenor certainly isn’t ‘just’ a hospice. What the charity actually does it to help people – both patients and their families - get on with living their lives with as little hassle and as much ease and enjoyment as possible. That’s certainly what it’s enabled us to do, and we couldn’t be more grateful”.
Our children’s nurses can deliver chemotherapy to our young patients in their own homes, ensuring that this essential treatment can be given in safe and comfortable surroundings for our most vulnerable patients. This session is also an opportunity for our nurses to offer ongoing advice and emotional support for the child, and their family, as we support them throughout their treatment.
£232 could help to provide a session of chemotherapy for a child at home.
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