Betsy was diagnosed with a diffuse optic nerve glioma in May 2016 when she was just 2 ½ years old. The slow-growing tumour on her visual nerves is not malignant but it has adversely affected her eyesight: now aged 4 ½ Betsy is registered blind. Her mum, Rochelle, explains how the Children’s Hospice at Home Nurses from Rennie Grove Hospice Care have made such a difference to the whole family.
“At the time Rennie Grove was mentioned to us everything was a bit of a blur as we came to terms with Betsy’s diagnosis and the fact she would need to undergo many months of gruelling treatment to shrink the tumour and minimise its impact. I’m pretty sure it was our social worker at Great Ormond Street Hospital who gave us the charity’s contact details and later that summer we got in touch and two of the team’s specialist children’s nurses came to our house for an initial assessment.
“I remember it well: my ‘team’ were all with me; my husband and both my parents had all been allowed compassionate leave from work but we knew normality had to resume. I remember feeling apprehensive about the visit and also that it was a hot summer’s day and Betsy was listening to Christmas songs!
“Anne, one of the nurses, lifted Betsy up and cuddled and danced with her, which she loved. Although still very tearful and anxious, I was immensely reassured because I felt real warmth from the Rennie Grove children’s nurses from that first moment. All the nurses are brilliant – but I must make a special mention of Jane, who has become very important to us as a family over the two years she has been supporting us.
“To have someone medically trained who at the same time feels like a friend was just what I needed. I find it admirable the way the nurses manage to be so many roles in one. To us, they have been a play specialist, a nurse, and the most wonderful listeners. They are so flexible and fit in with whatever is needed during that particular visit. Thankfully we never needed the nurses to visit out of hours, but they always reminded me I could call them at any time of the day or night, which gave us that priceless sense of reassurance.
“In the early stages, they would help me with the nasogastric feeding where a narrow feeding tube would carry all the nutrients and medication Betsy needed directly into her stomach. They helped me cope with the distressing side effects of chemotherapy and to find ways to engage Betsy when she was feeling so unwell and learning to deal with no longer being able to see.
“She has completed 18 months of chemotherapy, which has successfully shrunk and stabilised the tumour on her optic nerve. Now she no longer needs to undergo chemo, the nurses are still there to help Betsy thrive. It gives me the chance to do whatever is best for me on that particular visit, whether it be to have some one-to-one time with my younger daughter, Ava, who is now 2 ½; to do boring but necessary housework or just to go for a quick coffee with friends.
“I look forward to their visits so much as the children’s hospice at home nurses have a way of making you feel so relaxed and at ease. They recognise when I am fragile and find a way of listening to my concerns whilst still ensuring Betsy is cared for, nurtured and supported. It’s great to have these scheduled, regular visits, which have become a crucial part of mine and Betsy’s routine. But it’s also such peace of mind to know the charity’s nurses are there 24/7 should we need them.
“I also really love the events put on in the holidays specifically for Rennie Grove paediatric patients and their siblings. On my own, it can be a challenge to take my daughters to certain places and experience soft play or arts & crafts. My girls absolutely love – and I really look forward to - these days. Betsy has the opportunity to explore soft play independently, which is so beneficial to her in so many ways. It makes me realise that with a bit of time and space she can do anything despite her visual impairment and that realisation really does fill me with warmth and pride.
“Ava also gets to burn some energy and spend some time with her sister at these special soft play events. I always come away feeling very grateful for the opportunity and thankful that I accepted the specialist children’s nurses from Rennie Grove into our lives. They have made this journey so much easier and more positive.
“And I know they will be there for as long as we need them. Although Betsy’s tumour is benign, it has caused life-long damage and the expectation is that she will need further treatment intermittently as she grows and develops. For example, the bit of the brain that helps to control hormones can be affected by optic pathway tumours so she’s currently undergoing further tests to identify any hormone replacements she may need. It’s so reassuring to know that the children’s nurses from Rennie Grove will be there for us through the tests, the results and any treatment, offering their expertise and specialist support - or sometimes just a listening ear when times get tough.”