When Jess Grant was poorly, too weak to walk, her mum and dad would push her wheelchair around the outskirts of Addenbrooke’s Hospital. They would look at the mass of building work taking place. After so many appointments in departments that were set up for adults, Jess talked about how wonderful it would be to have a dedicated children’s hospital.
“Jess felt very strongly that it would be good to have everything based around the child,” says her mum Anita, who has joined Cambridge Children’s Network to ensure Jess’s views and ideas are heard.
Karate-mad Jess started getting pain in her leg in August 2014. It was put down to a martial arts injury, but the doctor sent her for checks ‘just in case’. Age 11, she was diagnosed with Osteosarcoma, a rare bone cancer, which would require six rounds of high dose chemotherapy and major surgery.
“A lot happened in a very short space of time,” says Anita. “It felt like our whole lives had come crashing down.”
The family, who live in Ipswich, uprooted their existence and moved to Addenbrooke’s Hospital for almost 10 months. They even had Christmas there. Mealtimes were centred around the microwave, the toaster and M&S in the hospital forecourt!
“There was only one shower on C2 and usually a queue! It would have been nice to have some privacy. A single room with an en suite bathroom would have made such a difference. We missed being comfortable and having structure to our days. There was so much waiting around. Just waiting for things to happen.”
Anita and Kevin challenged each other to get outside and do 10,000 steps a day, but it was much harder for Jess to enjoy the outdoors she loved so much. “It was very rare that she’d get out into the fresh air. She was immunocompromised after her treatment, so we couldn’t even have a window open!”
School was incredibly important. Jess was hard-working and conscientious, throwing herself into learning with her teacher on C2 ward. Then the summer holidays started and frustratingly everything stopped. The structure that school brought to Jess's days was gone.
A talented musician (Jess played electric guitar, keyboard, and ukulele), Anita says it was music therapy which gave Jess a real boost. “Sometimes she’d look quite low when we left her, but we’d come back after a music therapy session, and she was a different child.”
Between July 2015 and May 2016, Jess was able to go back to her school on a reduced timetable, but things were never the same again. She had to learn to walk. She tired easily.
“It's hard to put in words how special Jess was. She was an amazing young lady, with a big beaming smile throughout everything. When she was going through treatment, she never once said it’s unfair what’s happening to me. She just took it in her stride.”
Having relapsed in May 2016, Jess had more chemo and another operation. She joined two drug trials in Birmingham and Cambridge. Throughout, the family made the most of spending time together. They went to the Lake District to see mountains and waterfalls, which Jess adored. She went to a Queen concert at Wembley and met her hero, Brian May. They became friends after he visited Jess at Addenbrookes in 2015 and would jam together.
By December there were no other treatment options available. Jess died in January 2018, aged 15.
Joining Cambridge Children’s Network was a huge step for Anita, but she has thrown herself into her role as a Design Champion, joining monthly workshops with other parents and carers. She enjoys the sense of community and shared experience. “I feel this is something Jess would have wanted to do," says Anita, "She envisaged herself working at the new children’s hospital, looking after children with cancer. I want to make sure her voice is heard."
“We get given a bit of homework ahead of each design workshop, which is lovely. I find myself thinking ‘What would Jess have thought about this?’ I talk to the group about what Jess said could have been better, but also what was good. You don’t want to lose that.”