Jacob Mortimer was diagnosed with a rare brain tumour when he was just six months old and sadly died a few months later. While his short life was filled with love and care, Jigsaw, Cumbria’s Children’s Hospice was able to support Jacob and his family through the toughest of times.
This is Jacob’s story:
Jacob was a normal baby – fascinated by his favourite television show Sunny Bunnies (he loved the orange one called Turbo) and watching the football with his dad and big brothers.
“He liked football, but then he was going to have no choice anyways because his dad and his big brothers support Man City,” mum Andrea says.
“And, I don’t know why, he must’ve taken after my mum, but he liked 60s and 70s music. His favourite was Mr. Tambourine Man that calmed him down, and nursery rhymes, he liked nursery rhymes.”
Born into a loving family in Penrith with Andrea, dad David and six half siblings, their world would be turned upside down in early 2021 when Jacob fell ill. Jacob’s illness started when he kept being sick and with blood starting to appear and he was taken into Carlisle’s Cumberland Infirmary for checks.
“The doctor said to me ‘do you think Jacob’s head is unusually large?’. I didn’t really think so… but the doctor said his head was large and then ‘we think he has fluid on his brain’”, Andrea says.
A scan revealed fluid was on his brain and there was a blockage. There was also a growth which they couldn’t rule out being cancer at that stage. He was rushed to the Royal Victoria Infirmary (RVI) in Newcastle on February 5th where he had an operation to help drain the fluid from his brain.
However, it was a few days later that doctors confirmed to Andrea and David that Jacob did have cancer, later discovering it was a very rare, atypical teratoid rhabdoid tumour (ATRT).
Although risky, it was decided that Jacob would have an operation and when he was safely through it, he would start chemotherapy. A second round of chemotherapy followed however, there would be some bad news to come for the family.
Andrea continues: “At the end of May he had another scan and the next day we went to see the doctor. They said I’m really sorry but there’s nothing more we can do, it’s grown back. We can do another operation, we can do more chemo, but he’s already been through a lot and it would just grow back. We can’t stop it.”
Doctors said Jacob now just had a few months to live.
Jacob fell ill again and was in hospital in Middlesbrough where it was discovered the tumour had grown and staff believed he had just a couple of days left to live. The family had the choice of taking Jacob back to the RVI or to a hospice in the north east.
“That’s when I thought about Jigsaw, I said can we not go back to Jigsaw which is in Carlisle which would be nearer to us,” Andrea recalls.
“Even the nurses in Jigsaw didn’t think Jacob had long left, but I don’t know what happened, he just went from strength to strength. He came back to being Jacob after about three or four days in the hospice.
“We were in the hospice for about a month and they were absolutely amazing. He started smiling, he was taking more notice and really engaging with you. We’d go out on walks and he’d be awake and looking around, just the old Jacob.”
At the end of June and following the care received in Jigsaw, Jacob was well enough to be able to go home, allowing Andrea, David and the rest of the family to spend some much-needed time together that they will never forget.
“We went on a holiday to Filey with three of the boys for a week, we went to Blackpool Zoo the day before his birthday, we had a birthday party, there was a charity bike ride for him from Carlisle so we went to see all the bikes set off. We just spent some quality time with him.”
After a few weeks together at home, enjoying being a family again, it was in the middle of August that Jacob started to be unwell again and needed medical attention. Arrangements were made to go back into the hospice on the 15th.
“The staff were brilliant again, we had the same room we’d had before and we were there for about two weeks and on the 28th August he passed away,” Andrea says.
“The nurses were absolutely amazing… I thought we’d have to go home but they moved him to the Butterfly Suite and they said ‘you can stay as long as you want’. They said I could come back anytime I wanted and we went back every other day, picked him up, listened to songs with him, talk to him.”
The Butterfly Suite provides a private and peaceful bedroom and lounge, a place for families to take time to say goodbye to children after they have died.
Jacob stayed in the suite until he left Jigsaw for his funeral.
Andrea and the rest of her family cannot thank the Jigsaw staff enough for the dedicated love, care and support they showed to them during what was an incredibly tough time.
“Being in there took everything off your mind because they were cooking your meals, washing the clothes and doing everything which allowed us to focus on Jacob,” Andrea remembers fondly.
“They are just amazing. You can just focus on the person that’s ill and they do everything else. Nothing is too much trouble for the staff. They will help out wherever they can.
“When he was in the Butterfly Suite they showed us the memory boxes we could make, books you could read to him, nothing was too much trouble and if they could help you, they would. They are just angels.
“You need Jigsaw – because they’re just amazing. You need them here so you can spend time with your little ones, teenagers or whoever that is in for end-of-life care. They provided you with some respite so you can have a bit of a break to keep you as the parent going to help look after the child who is ill.”