Seven year old Lilyana, from Derby, was diagnosed with Acute Lymphoblastic Leukaemia when she was just four years old. PASIC have been supporting her and her mum, Kirn, from the start of their cancer journey. We spoke with Kirn about their experience.
“When the doctor told me she had cancer my first thought was ‘what do we need to do to beat this?’.
“Reality hit when I was told Lilyana would lose her hair, she’d always loved having her hair done in different styles and took big pride in it. I then had to explain to Lilyana what was happening and that we had a long fight ahead.
Lilyana and Kirn were immediately given access to PASIC Support Workers to guide and support them.
Kirn says, “they’ve been invaluable. I’m used to doing everything myself, but they’ve helped out, even when I didn’t ask.”
They’ve always been there if I’ve needed a chat, or if Lilyana needed something to occupy herself whilst in hospital.”
Lilyana and Kirn have enjoyed many PASIC trips, including Alton Towers, Derby Pantomime and our Spring and Christmas parties.
We’ve absolutely loved every trip we’ve attended with PASIC. One particular memory I have is when Lilyana was at Alton Towers and managed to get a photo with all the PASIC Support Workers. They all had the biggest grins on their faces and it shows how lovely a bond they all have, and how much we will miss them!”
As well as the fun stuff, we’ve been able to provide financial support during difficult times. Sadly, like many families, Kirn found it hard to manage work commitments with caring for a child with cancer. Unfortunately losing two jobs during Lilyana’s treatment and with additional costs of having a sick child rising, Kirn needed some additional support. PASIC was able to help with grants and supermarket vouchers.
The financial help relieved some of the stress I had. It meant I could make sure I had Lilyana’s favourite foods in for when she had cravings caused by her treatment.”
After three years of treatment Lilyana finally rang the ‘end-of-treatment bell’. Of course, she wanted her PASIC Support Workers Emma and Joanne there to celebrate. They were delighted to be invited along.
“Now that Lilyana has finished treatment, it’s a little daunting but also exciting. She was four when she was diagnosed so we’ve both missed out on a lot of soft plays, parties, etc.
Lilyana is looking forward to swimming and having fun with friends again.”
“All I can say is thank you to the whole PASIC family for helping me and my baby get through a very tough journey. Through the parties and trips, I’ve been able to see Lilyana just be a kid and enjoy herself. She’s even asking to volunteer for PASIC when she’s fully recovered!
To have Emma and Joanne there when Lilyana rang the bell is a memory we will cherish forever.”
PASIC will continue to support Lilyana and Kirn for up to three years following the end of treatment, helping them navigate a return to ‘normality’.
