It’s just a week to go until Children’s Hospice Week 2020 kicks off. We’ll be celebrating the 54 Children’s Hospices across the UK, and raising money to suppor the vital care they provide for seriously ill children and their families.
This year that support has been needed more than ever before, with families feeling the effects of lockdown and disruption to services. We wanted to share this interview with mum Jen, whose daughter Betty was diagnosed with a highly aggressive brain tumour in 2017 when she was just seven months old. Betty went through 10 months of gruelling treatment: brain surgery, intense chemotherapy and radiotherapy. As a result of her treatment she has complex care needs, which can only be provided by Jen and her husband Joe, Betty’s grandparents, or trained medical professionals.
However, Julia’s House was there for Jen when Betty came home from hospital. They put in place a care plan so that they could help Jen look after Betty at home, and they have continued to support the family ever since. “Without Julia’s House there was no other childcare support for us, other than our own family,” says Jen. “The physical and mental strain is unbelievable, but Julia’s House come in and take all the pressure off – her nurse feels like part of the family. I trust her as much as I do close family.”
Children like Betty and Mum’s like Jen are being supported by children’s hospices all over the country, and this is the week that you can do something to support them, by getting involved in a Children’s Hospice Week challenge and sharing stories like Jen and Betty’s.
This is Children’s Hospice Week 2020.
This is. . . caring for a seriously ill child during lockdown
“These are frightening times for everyone but as a family we’ve had to do this kind of isolation before to keep Betty safe. Although, the day the letter arrived to tell us to stay at home as Betty was so vulnerable was quite scary. We were in lockdown about a week before the rest of the country out of choice and we have missed the great support we normally receive from family and friends, particularly from Betty’s grandparents. People are being really helpful and dropping food and supplies off to us although it’s not quite the same as having that help at home, and being able to get out with Betty to give her other stimulation. Our world is our home and our garden. We do miss our walks with Betty down to the sea.
“We know it’s a very challenging situation right now in terms of Coronavirus, but in so many ways for us to be all home together and Betty being well is a something we could only have hoped and dreamed of two and half years ago. While we do feel like a lot of people, that life is on hold, we have the perspective to enjoy our time together now because of the trauma we’ve been through.
The day the letter arrived to tell us to stay at home as Betty was so vulnerable was quite scary
“After a long and often frustrating journey, we had finally got Betty a place at a great pre-school which would then become her main school and that was going to make life a lot more manageable for all of us and be especially beneficial for Betty, but sadly it had to shut just as she was about to start to settling in. She has been going to an amazing pre-school up to now but of course, that had to close too, so she has been doubly affected. Betty is doing so well at the moment, sitting up on her own and her mobility is really improving, so pre-school was going to be a great help for her in building her physical strength and independence, as well as providing her with the dedicated one-to-one learning support she needs to aid her development. On top of this she has already missed out in her young life on so much ‘normal life’ due to her illness and treatment.
“We are making sure we’re doing lots of physical play at home, in between balancing working from home. It’s just so lovely spending time with Betty. It can be challenging at times as she needs a lot of stimulation to encourage her and we can’t leave her to play on her own much as she is deaf, developmentally delayed, part tube-fed, and has limited mobility, so we do need to keep a constant eye on her and support her development. I know lots of parents are facing challenges with pre-school children at home, but if you have a child with special needs, there’s a lot more to do on top of everything else. We’re trying not to put too much pressure on ourselves and just enjoying the time with her, but we do get tired.
I know lots of parents are facing challenges with pre-school children at home, but if you have a child with special needs, there’s a lot more to do on top of everything else.
“We’re having to have video calls now with our Julia’s House nurse, Natalie, instead of home sits. Things had to be flexible because Betty is so vulnerable. It is so helpful that Natalie is still in touch, we all really appreciate that. We have only just started the calls, which I think will be a support for me and Nat has also offered practical help such as shopping. It is really nice being able to talk to her openly as she knows what we’ve been through.
“I know times are tough for everyone at the moment, but I guess the difference for us is that we’ve already been through so much – living in hospital for seven months and watching Betty go through horrendous treatment for an aggressive brain tumour, not knowing if she would survive. That experience makes you look at the Coronavirus situation differently and appreciate what you have, which for us is being able to spend so much time with Betty right now, especially for her dad Joe who is normally out at work from 7am-7pm. We’re making the most of these weeks all together.
We’re having video calls now with our Julia’s House nurse, Natalie, It is so helpful that Natalie is still in touch, we all really appreciate that. . .It is really nice being able to talk to her openly as she knows what we’ve been through.
“We do sometimes worry about hospital visits, as we’ve been so reliant on the NHS since Betty was a baby for her treatment and her survival. Against all the odds, Betty is now in remission which is incredible and everything we ever hoped for, but we still have a lot of involvement with the hospital including MRIs every few months, so I do think about what effect the strain on the NHS will have on the vital support Betty needs. I also think about those families going through what we did two years ago, with chemotherapy wiping out their child’s whole immune system, it must be really worrying to have to go into hospital for treatment at the moment. How are they going to manage? Will that support be there for them now? When you’ve gone through such a traumatic experience yourself with your own child, you can’t help but think about other people living through that same life-changing situation right now and how difficult and frightening that must be in the midst of Coronavirus.
“Every day with Betty is a blessing to us. It is hard for us and everyone, not knowing how long the situation is going to be like this. We were making exciting plans for the future: Betty starting her new school, and we were going to move house too so we could have somewhere with easier access for Betty and her mobility needs. That’s all stalled for the moment but we are staying positive, taking stock and just enjoying this special time with Betty and as a family. She’s throwing herself around and keeping us on our toes – there’s no stopping her! She’s never been better, and we want to make the most of that.”
Get involved
This is your chance to get involved and support children’s hospices like Julia’s House and children like Betty. You can spin our wheel of fortune to choose your own Children’s Hospice Week money raising challenge or just make a donation today to support our work. Please do whatever you can to help us support the lifeline services that need your support now more than ever before.