On the 25th June 2019, 11-year-old Issy and her family were given the devastating news that Issy had Philadelphia Chromosome Positive Acute Lymphoblastic Leukaemia: a rare subtype of the most common childhood cancer, Acute Lymphoblastic Leukaemia (ALL). Two days after her diagnosis, she was referred to Momentum Children’s Charity and they have been there every step of the way ever since. Annie, Issy’s mum, tells their story:
“When Issy was diagnosed with leukaemia it was a huge shock to us all. There was an element of disbelief, initially, and then we were hit by a mountain of information with words that we didn’t understand, scary sounding drugs with endless side effects and procedures with inherent risks that required consent forms. At that stage, I was just looking for someone to tell me that it would all be ok in the end. But nobody can do that, no doctor can tell you that – so what you need on this journey is reassurance, support and distraction.
“Once the news had been broken to us it was straight up to the children’s ward in our local hospital for an overnight stay before an ambulance transfer to St George’s to begin treatment. Momentum was there for us from the moment we entered the hospital room that has now become like a second home to us. Mo the owl smiling down at us from the wall and the thoughtful overnight essentials pack provided by Momentum were such a comfort. I didn’t realise at that point how much of an impact Momentum would have on our journey and my ability to cope. We’re now 14 months into a two-year treatment plan and there are still moments of sheer disbelief and shock, and that’s when the Momentum team are there for us, to give us support and to keep us strong.”
With Issy being immunocompromised, the coronavirus pandemic, and everything that has come with it, has made an already incredibly hard time for the family even harder. Issy was recently admitted into hospital following a temperature spike and infection: “Issy was incredibly scared to be in hospital because of coronavirus. She’s 12 years old and she understands the risks. She was crying and really frightened to be there.”
Behind the scenes, Momentum Children’s Charity, knowing that Issy was a huge fan of musical theatre, had organised for Issy to have a Theatre Buddy in the shape of Wicked’s Helen Woolf. “Receiving that phone call from our Family Support Worker, Kerrie, to tell Issy about the theatre buddy, completely changed her whole attitude in hospital. She was so overwhelmed with happiness and excitement, and she smiled for the first time in a long time. She settled in, and she calmed down. It was priceless, absolutely priceless.”
The ripple effect of the pandemic has also meant that Annie and Issy have been separated from the rest of the family for long periods and, with schools closed, schooling at home for Issy’s sisters, Tilly and Evie, has been difficult. Momentum have organised, through their educational support service, for online tutors to support the girls with their schoolwork, in a way that works for the whole family.
“It’s crucial to me that all my girls feel supported in their progress at school, I’m so thankful for the online tutoring and support for everyone. It helps to alleviate the worry I feel for the family members left at home. Along the way, Kerrie has made sure that each member of the family feels heard, and seen, which is really important.”
As well as the online tutoring, Issy’s sisters have had video messages of support sent to them from Children’s Author, Dame Jacqueline Wilson, and Momentum’s Fairy Princess; and keen guitarist, Evie, participated in a music therapy session.
For Annie, Family Support Worker Kerrie has been there whenever she needs her; keeping in touch on a regular basis through calls, texts and, when safe to do so, visits.
“Kerrie has become like a friend; I feel I could tell her anything. With friends and family, you sometimes need to filter what you’re saying as you don’t want to shock or upset them, but with Kerrie I feel like I can just open the floodgates and tell her everything. Kerrie helps me feel hopeful, she makes me feel positive and she helps me feel strong; like I can do this. She’s been an unwavering support throughout our whole journey, and she’s got a great bond with Issy too.
“Momentum just seem to pop up when we most need them; without us having to tell them, without us having to call them. They’re like a little life raft bobbing up in the ocean, when you least expect it, but when you most need it. Lifting our spirits and distracting us from the reality of what’s going on – whether that be with a phone call, a visit whilst we’re in hospital, a gift for Issy and her sisters, a gift for me or, most recently, a few nights away from it all in one of their stunning cabins in the New Forest. We never thought we’d stay anywhere other than hospital or home during this pandemic but Momentum gave us the confidence to try one of their cabins - a clean, safe and beautiful place to take the children on holiday and spend precious family time together.”
“Momentum Children’s Charity simply close down the loneliness that you can feel on this journey.”