Supporting families of children and young
 people with cancer in the East Midlands

PASIC brought us together more as a family, they were very supportive.

In May 2014, Jess, aged five years old, had been unwell for a while. Despite three trips to the GP, the family were told there was nothing wrong. Eventually, an x-ray showed Jess’ lung was full of fluid. Blue-lighted to QMC, she ended up on oxygen with emergency surgery the following day which revealed a lump in her chest. Jess was diagnosed with T cell lymphoma.

Jess in a hospital bed on a laptop

Jess in hospital

This terrifying time marked the start of an horrific time for the whole family. Her treatment lasted two and a half years and Jess faced many stays in hospital, chemo, steroids, multiple injections and painful procedures. She had a bad reaction to one lot of chemo; this caused a bleed on her brain and blood clot which resulted in her having seizures. When she finally came out of hospital at this point she was unable to walk and was back in nappies (she was five).

In her mum, Carol’s, words:

“Jessica’s big brother Chris was 11; at the time he never knew where he was sleeping as he would get a call at school telling him he had to go to Grandma’s as Jess was in hospital. He left for school one morning leaving Jess on the floor fitting while we waited for an ambulance. He never complained just got on with it. He is now a lively young man luckily doing very well at school and is lovely with Jess, they have a really nice relationship.

“I think the challenges we had were trying to keep things as normal as possible for Chris, and being at home as much as we could for him, as well as having Jess in and out of hospital sometimes very unexpectedly.  Trying to do things as a family, but temperature and infections getting in the way, meant lots of stays in hospital and having to cancel many things.

“You lose a lot of your social life and feel very isolated, but luckily PASIC activities and events we’ve attended over the years have really helped with this: Drayton Manor Park, Easter and Christmas parties, Butlins, cinema, hospital activity bags, school holiday activities. Being with other children in same situation (i.e. no hair) helped Jess’ confidence as they show they’re not the only one. Enjoying playing like a normal child, rather than feeling self-conscious about themselves is a real boost at PASIC events.

“We’re very proud of how Jess coped with everything. The injections twice a day were really bad, Jess hated them but knew she had to have them and eventually just said ‘right, I’m ready to do it’. We’re also really proud as now she has finished treatment she has become such a lovely young lady. After missing nearly two years of school she is very bright and has a reading age of years above her age which is amazing. She gets on with everything with a smile even when in pain.

Jess in a wheelchair with arms outstretched“Having Pasic about was wonderful, everyone was so friendly.  They gave us someone to talk to, a friendly face when you’ve been in hospital a few days. Our support worker always had a little something for Jess to do and a treat to take for Chris as well, so he didn’t miss out. They were always there to listen too.

“Jess has made marvellous progress.  Since finishing treatment she has a go at anything and everything, even though she still suffers with pain. She’s got her mobility back and is finally  out of a wheelchair; she’s started golf which she loves, as her gymnastics and dance had to come to an end due to pain issues.

“We received a PASIC grant for new clothes when Jess changed size due to steroids treatment which contributed to weight gain.

“At PASIC events it was nice to see other families in our situation, to talk to them, get advice and help each other. The children have something exciting to look forward to which has helped keep them going.

“I think as a family we’re just getting back to living a near normal life, but mentally thing are still quite fragile.  Any aches, pains and coughs give us a scare – I don’t think I’ll ever be as 100% carefree as before.

Cancer certainly changes your life forever!

Jess is now 12 years old and four and half years post-treatment. Thankfully she is doing well and has developed a love for golf! Generous Jess grew out her hair before having 12 inches cut off to donate to the Little Princess Trust – a charity providing real-hair wigs to children and young people who have lost their hair due to cancer treatment.

Jess lying on the grass with a dog