When children are coping with serious illness, many parties – often based in different areas – may be involved in their treatment. The practical and emotional implications of coping with a complex schedule of appointments can, quite understandably, sometimes feel overwhelming for the families involved. ellenor, along with other organisations, offer practical medical support to ensure that the whole process runs as smoothly as it possibly can. This enables families to get on with living their lives, as one mum explains:
Five-year-old Bonnie-Louisa Meehan-Lysandrou has been undergoing treatment for Acute Lymphoblastic Leukaemia (ALL) since her diagnosis in March 2019. Initially treated in the children’s Tiger Ward at her local hospital, Queen Elizabeth in Woolwich, Bonnie was then referred to The Royal Marsden Hospital because she needed highly specialised treatment to deal with an additional fungal infection that only the team there could administer. “It was a particularly difficult time,” recalls mum Louise. “Bonnie reacted badly to treatment, and it took some time to work out what her body could and couldn’t handle, which meant a lot of time spent in the Marsden.” In May of the same year, once a treatment regime was sorted, the ellenor team became involved, with the aim of working in conjunction with the two hospitals to administer Bonnie’s treatments in the comfort and familiarity of her own home.
For the whole family – which also includes dad Jim and elder sister Brooke - ellenor’s involvement meant life became that little bit easier. Says Louise, “The ellenor team make a huge difference. We began having a range of ellenor nurses visiting us, and between July and December, they came in every day, including at weekends to administer the infusion of antibiotics that Bonnie needed via a portacath – the portable catheter through which drugs are delivered into her system. These days, we have just one nurse, Becky, who’s been coming to us for several months now. Luckily, there has been no reduction at all in the support we’ve received from ellenor, even in lockdown and Bonnie and Becky have been able to build a really good relationship. I know, too, that I can ring Becky any time If I’ve got any questions or concerns.
With Bonnie requiring treatment so often in the early days it was great not to have to bundle her up and take her into hospital – her having her treatment at home works so much better, even if, these days, thankfully things are calmer.
Now, Becky comes once a week on a Monday to do Bonnie’s blood tests , a quick process – it only takes around fifteen minutes. And I know that she’ll be coming at around 9.30am, which means I can have applied the special cream she needs an hour beforehand, so that everything’s ready for Becky when she arrives. It all saves so much time and helps things run that bit more smoothly.
Bonnie is your typical five-year-old little girl: chatty, cuddly, loves playing princesses and Roadblox on the computer. Having ellenor involved in her care has helped to ensure that she’s able to concentrate on these things, rather than her life – and ours – being dominated by trips to and from hospital. We’ve always felt that communication between the Marsden, Queen Elizabeth’s and ellenor is really good, so that everyone knows what’s going on and that we always know what’s going on, too – which means less to worry about. ellenor’s care has helped us feel that our family life is that little bit more normal.”
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