Holly’s Story

Holly Olivia Prince

Holly Olivia Prince our third and youngest child and was born 2nd December 2016. From the minute she was born we knew that Holly was a precious little girl. She weighed just 5lb 5oz so she was tiny but had a full head of red hair -the only red head in our family. She was just beautiful. As Holly grew up she had an impact on everybody around her. Everyone would always comment on her beautiful red hair and infectious smile. She was cheeky and funny – a little pocket rocket with the most incredible laugh. She loved to play jokes on people and everybody at nursery and school wanted to be her friend. Her older brother and sister were constantly bossed around by her and she always got her way.

When Holly was a baby doctors noticed that she wasn’t growing as fast as she should be and she was measuring small compared to other children her age. When she was one she was referred to a growth specialist at The Royal Manchester Children’s Hospital. After many tests it was found that Holly lacked growth hormone. We were given growth hormone and had to inject this into Holly’s leg everyday. At first this was a daunting task but Holly and us soon got used to it. Holly was then reviewed regularly but the growth hormone didn’t seem to be working. The doctor told us that he suspected that the reason for her small size was more likely to be something genetic. We were referred to the genetics department who put us into the 100,000 genomes project – a project to find rare genetic diseases by searching through your genome. Holly was on this project for two years. Searching through genetic data takes a very long time. In the meantime we carried on life as normal. Even though Holly was smaller than her friends it didn’t affect her in anyway. She was a force to be reckoned with. Everybody loved her.

At the end of February 2020 we received a letter out of the blue from the genetics department at Manchester saying they would like to see us. We had a feeling it could be a result from the project but we weren’t sure. We got to the hospital on 3rd March 2020 and went up to the 6th floor genetics department. Our consultant invited us in. A result had come back. Holly had an ultra rare genetic condition called Bloom Syndrome. A condition that the geneticist had never come across before. She started to tell us about the condition and then told us her life expectancy was dramatically reduced because of an extra-ordinarily high risk of developing cancer at a young age. It absolutely floored us. We were devastated and could not comprehend what we had just been told. We went home and tried to take it all in. It was an extremely difficult time for us and all of our family.
We reached out to the Bloom Syndrome community online. This was the best thing we did. We found support from people all over the world with children and adults living happy lives with the condition. We started to feel more positive about the future. We were referred to an oncology doctor who was an expert in Bloom Syndrome – Dr Stefan Meyer. He looked after 5 patients with the condition which is a lot considering how rare it is. Our appointment to meet and chat to him was April 2020. Then covid hit. Dr Meyer rang me to cancel the appointment because it wasn’t urgent but we did have a good chat over the phone. He reassured me that Holly would be closely monitored and when the pandemic calmed down we would have a face to face appointment. Life carried on as normal as it could during Covid. That special family time was so precious looking back at it now. We eventually got a new appointment through the post 19th June 2020 on Ward 84. Weirdly the day before this appointment I noticed blood in Holly’s urine. Not a lot but it was there. We went to meet Dr Meyer and he was very informative and reassuring that we could screen Holly regularly as she grows up and catch any cancer early. I mentioned to him that blood had appeared I her urine the day before. He wasted no time in getting a sample and booking us in the following week for an ultrasound. A week later on 26th June an ultrasound scan revealed that Holly had a Wilm’s Tumour on her left kidney. We were absolutely devastated.

The next few weeks were so hard. Holly had to start chemotherapy and undergo a 5 hour surgery to remove her kidney. We were hopeful that we had caught it really early and the tumour was only small in size. We were dealt another blow when the histology of the tumour came back as ‘high risk’ which means that the type of cancer cells that were in the tumour are resistant to chemotherapy and therefore the risk of relapse is high. We remained positive that all of the cancer was removed in surgery but Holly had to undergo 7 months of intense chemotherapy to try and kill off any remaining cells. The four drugs she had from September 2020 to March 2021 were extremely toxic. Holly lost her hair and was in and out of hospital with fevers due to being neutropenic. People with Bloom Syndrome do not tolerate chemo the same as someone without the condition so doctors reduced the dose but even with this she was struggling. She got just over half way through the treatment and doctors decided to stop treatment as it was making her too poorly and she was at a very high risk. We finished treatment and then a few weeks later scans showed No Evidence of Disease. Holly was in remission and we were so happy. We threw a big party with all our family and friends. She was thriving and started in the nursery class at school. We had the best summer in 2021 making special memories together.

3 months later on 6th September 2021 we went for our first 3 monthly check-up post treatment which was an X-ray and an ultrasound scan. The scan revealed another tumour, in the space where the kidney used to be. The cancer was back, Holly had relapsed. From the scans the cancer seemed localised to that area and no sign of metastasis. Holly had to undergo surgery again, this time it was a longer operation and more complex. The doctor advised against chemotherapy due to her sensitivity last time so we were referred to The Christie for Proton Beam Therapy to the area where the cancer came back. In November 2021 Holly had to have 14 days of being put under general anaesthetic to have the proton beam therapy. She was an absolute superstar and this treatment had very little side effects compared to the chemotherapy. After this treatment our oncologist back at Manchester wanted to see us before Christmas to check on Holly. We had just had the most magical week at Center Parcs Winter Wonderland where Holly was riding ponies and whizzing up and down slides. She seemed so well but the X-Ray’s revealed that the cancer had spread to the lungs in the pleural cavity and there were 3 tumours this time. Her chances of surviving were now dramatically reduced but we never gave up hope. Holly started new chemotherapy treatment over the Christmas period. After two rounds of treatment scans showed that the treatment was working and Holly continued with life between chemo treatments, going to school and even doing a dance show. But by the end of February 2022 scans showed that the cancer had progressed significantly around the left lung. Despite new treatments Holly became very poorly in early March 2022. She lost a lot of weight and struggled to eat so had to be fed through an NG tube. She thought on for four more weeks but sadly lost her fight at 8pm on 8th April 2022.

Our lives will never be the same without Holly. Our hearts have been broken into a million pieces and she will be forever loved and missed. We will never get over it but setting up this charity is a way of surviving. It gives us purpose and a way of ensuring Holly’s legacy lives on. Most of all we want to do Holly proud by making others feel happy when going through these tough times.