“Without our clinical psychology sessions this journey would have been even tougher.” Polly’s mum, Emily.
Meet Polly, also known as Gumdrops by her adoring mum. Polly is 10, and loves dancing, Monsters Inc, and ponies. She was also diagnosed with a life-changing benign Optical Pathway Glioma at just 14 months’ old, at Alder Hey Children’s Hospital.
Polly lives with her mum, Emily, in Wallasey, Merseyside, who has bravely shared her and Polly’s story with us. Polly and her family are supported by a Tom’s Trust clinical psychologist at Alder Hey.
Polly’s story, told by her mum Emily
“When Polly was around 12 months old, I noticed she had a turn in her eye, and it had protruded so I made an emergency appointment at the GP and optometrists. We were told it was a concern and sent to Alder Hey for further investigation. When we arrived, we found ourselves in oncology where we received the awful news that broke our hearts. Polly had a scan to confirm what the consultant believed. The news no one wants to hear ‘your child has a brain tumour and needs to start chemotherapy quickly’.
“Christmas was approaching, and Christmas eve 2014 Polly had her first chemo. We managed to have Christmas eve at home where Santa spoiled her. Boxing day came and despite the cold temperatures I felt like I had a little radiator in my arms. We went straight to Alder Hey. This was such a scary experience for all of us, her first temperature on treatment. Polly was admitted and had to stay in for a few nights.
“When Polly was first diagnosed, we brought her a Sully teddy (the main character in Monsters Inc). He was bigger than her. She loved him, loved the films and the song ‘If I didn’t have you’. Sully and Polly go everywhere together – every treatment, every injection, every painful procedure – Sully was always there to see Polly through.
“Polly continued her chemo for a year until unfortunately the tumour grew. All this was confusing for Polly so when she started treatment, we had a plan ‘let’s give your tumour a silly name’ She called him Randal – another monster from Monsters Inc. When Randal grew, Polly started a chemotherapy medication called vinblastine. By this she had lost her hair and was poorly. Polly went on to develop Sepsis – thankfully we made it to the hospital in time.
“When the next chemo was due Polly had an allergic reaction, so the decision was made to swap her chemo to Avastin and Irinotecan. During this time all remained stable.
“Sadly, during Polly’s treatment, we have lost some truly remarkable children and teenagers. Polly has taken these losses very hard and misses them every day. Every Christmas Polly has the same wish – instead of a huge list of personal possessions she asks that all the children in heaven are to have a very Merry Christmas.
Polly and Dr Meghan Owens, TT clinical psychologist
Polly’s future:
“When Polly first started her treatment, we were told she was blind in her right eye, because Polly’s tumours are in the optic nerves. Also, at the age of six Polly was diagnosed with precocious puberty, which meant her puberty was kicking in earlier. To slow this down she stared hormone injections. Other long-term conditions that Polly faces a result of her tumour and treatment are trauma induced OCD, autism, ADHD, and sensory processing issues.
“Polly struggled in mainstream school so moved to one for children with social communication difficulties and has now caught up, despite missing school a lot. Friendship wise she does find it hard to get close as she has experienced the loss of so many friends.
“Polly has been on treatment from 2014 to 2023, and right now everything has remained stable. She will have regular scans and vision checks probably all her life. According to our consultant although he is optimistic everything will remain stable there would be no other treatment options left in the UK. If she required further treatment it would have to be in America.
“Polly is such a kind and caring little girl who is the light of my universe. Everyone who meets her says that she is such a character with a heart of gold, and you usually hear Polly before you see her. Polly’s dream job is to be a hair fairy and have a wig business for children who can’t make it out of the hospital. She wants to call it Silva Thread after her friend who passed away.”
Tom’s Trust support:
When asked about how the support from Tom’s Trust had helped Emily, Polly and their family, Emily added:
“Tom’s Trust clinical psychologists are second to none. Other services I feel have failed us in some way or not been anywhere near as supportive kind or understanding. Tom’s Trust clinical psychologists are always at the end of the phone and always act in the best interests of Polly and the family without judgements. Every request or question I have they have always found a way to answer it and got back to me with in a short time. The sessions have always been Polly friendly without feeling like a clinical appointment which was important to us because Polly always felt worried going back into the hospital. I am truly grateful; without the sessions we had this journey would have been even tougher. Our sessions have helped us to feel a little stronger to be able to cope during challenging times.”
