The Hollie Taylor Fund at CCLG is raising funds to support research into malignant rhabdoid tumours.
"Hollie was born 6 weeks premature on 23 November 2011. She weighed just 3lb 6oz and spent her first month in the excellent care of Forth Valley Royal Hospital’s Neonatal Unit before finally getting home in time for Christmas. Hollie continued to flourish; she was happy, healthy, chatty and keeping everyone on their toes with her new found skill of walking. A few months later, at a regular paediatric checkup it was noted that Hollie was occasionally slightly unsteady on her feet and sometimes preferred to crawl, she would also hold her right arm against her body, but did not appear to have any other discomfort or problems using both arms.
Over the next months Hollie had a few periods of what appeared to be viral infections and sickness bugs and was frequently generally unsettled. It was during one of these viral infections that Hollie’s right pupil became an irregular size and subsequently her eyelid appeared to be drooping. She was referred for further eye examinations. However, before the referral appointment was allocated and whilst awaiting results of another suspected infection, Hollie was admitted to Forth Valley Royal Hospital (FVRH) on 3 October 2013 with a dangerous fever and vomiting.
Following consultation with two specialist paediatric hospitals, Hollie was transferred to Yorkhill Children’s Hospital on 5 October for a CT scan and further investigation of her eyes. From here everything went so fast it was a blur. Hollie was 22 months old when she was diagnosed with cancer. The irregularity with her eyes was found to be Horner’s Syndrome caused by a large tumour within her lung cavity, intertwined with the nerves and pushing into her spine. The tumour had also collapsed her lung so the next day Hollie underwent an MRI, CT scan and biopsy; she had a chest drain and a Hickman line inserted in preparation for chemotherapy. The histology results came back on the 14 October and it was confirmed that she had a Malignant Rhabdoid Tumour.
On the 16 October 2013 Hollie began her 30-week suggested chemotherapy treatment protocol with the understanding that there was less than 5% chance of the treatment being successful. The first 12 weeks of chemotherapy had significantly reduced the tumour to less than 3cm in diameter and Hollie underwent surgery in January 2014 which removed 75% more. During all this treatment Hollie remained cheerful, still loving to get up and about playing in the Schiehallion ward when she was able and relaxing in the company of any Disney princess or a game when she wasn’t. Surgery was followed with 5 weeks of radiotherapy alongside the remaining 18 weeks of chemotherapy. This part was the hardest for Hollie as she got burned by the radiotherapy/chemotherapy combination and suffered from oral and gastrointestinal mucositis.
Hollie’s last treatment was the 3 July 2014 and she would continue to be monitored every 3 months, however, she was finally able to begin adjusting back at home, she started eating, began socialising and even started nursery.
However, her routine MRI scan in January 2015 confirmed the devastating news that the tumour had doubled in size, Hollie’s prognosis was now terminal as there are currently no other treatments available at this time for Malignant Rhabdoid Tumours. The expectation for this rare and aggressive tumour was that Hollie’s life would be greatly reduced and it was thought that she would survive less than 6 months.
Hollie and her family began packing a lifetime of experiences into an unspecified period of time. Over the next few months she visited the Disney princesses, met Peppa Pig and enjoyed spending days with family and friends, but she was plagued with illness and gastro problems due to her low immunity. After another short stay in hospital in March 2015 to combat a recurring Cdiff infection, Hollie began to flourish again, getting stronger, more active and her funny, mischievous little character began to shine brighter.
An amazing 8 months from her terminal prognosis passed and her routine MRI on 31 August 2015 showed miraculous results; Hollie’s tumour had shrunk by 28%. Just over 6 months later on March 2016 it was confirmed the tumour had shrunk again and there is the possibility that the cells remaining are inactive or dormant. Hollie continues to be monitored every 6 months.
Hollie is now 4 years old, enjoying every day, having fun, creating adventures and her new love is My Little Pony, which she loves as much as her nursery and friends.
John and I now feel we can relax a little, enjoy our time with Hollie as she continues to thrive and delight with her bright and crazy personality. We can also devote more time to raising funds for CCLG and the much-needed research for Malignant Rhabdoid Tumours."
Elaine, Hollie's mum.
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You can also make a donation by text message. Text HOLLIE to 70500 to donate £5. Terms & conditions of text donations