Our daughter Sophia was born in 2013. She was all we ever dreamed of and more.
Fast forward nine years later and one day, when we went to our local park, she started complaining of a headache. We left early and she threw up. I assumed she had too much sun that day. A few weeks later on holiday, she had to come in early from the pool twice because she was complaining of a headache and vomiting again. We decided to book a doctor’s appointment when we got home. With almost a two month wait to see the paediatrician at the hospital, we started to become very anxious.
When we finally got to see the paediatrician, he said he sees so many children with headaches mainly due to mental health so not to worry. However he said he would book an MRI for the following week in case of a rare chance that it was a brain tumour. We realise that it is unusual for symptoms such as Sophia’s to be picked up and checked for brain tumours so we were fortunate that this doctor did so. The morning following the MRI we woke up to message to call the hospital. We were told that Sophia had a brain tumour and to go to Leeds General Infirmary immediately. I screamed out in pain at this news for a couple of minutes and then I got up and went to fight a battle no parent should ever have to face.
When we arrived at Leeds we were told the brain tumour was massive and needed immediate surgery. Sophia’s brain surgery lasted 13 long hours and when she emerged alive in intensive care, the amazing brain surgeons said the surgery had been successful and they managed to remove about 65% of the tumour. I can still remember everything from this short period of time: the way Sophia was calling the intensive care nurse Mum and how incredibly lucky we felt that she made it through as her surgeons had warned us of her chance of death. Over the next twenty hours, her eyesight came back and, despite needing constant top-ups of morphine, she began to learn to walk again. A week later we were so relieved to be told we could take her home.
Six weeks later the full diagnosis was back. A brave doctor gently put her hand on my knee and told me Sophia had Stage 4 pineoblastoma. I can still remember every moment of that car journey home, where we felt frozen as we slowly digested the news. We cared for Sophia way more than we cared for our own lives. The fight was on!
Whilst we waited for proton therapy to begin in Manchester, we noticed Sophia’s eyes had started to go off-centre as her aggressive tumour was growing rapidly. However, three weeks in to her six-week treatment her eyes were back in line and the proton therapy had worked better than we could have dreamed of. After a full six weeks of proton treatment, the tumour was gone just leaving a small scar of left-over residue! We cried a lot of happy tears.
Sophia then began four rounds of brutal high-dose chemotherapy treatment with a stem cell transplant. We are thankful to Leeds Hospital for the nasogastric (NG) tube for feeding, many blood and platelet transfusions, as well as antibiotics after every round of chemo. Without these Sophia would not have made it through.
Writing this two years after the first diagnosis, Sophia is getting stronger every day. She has started secondary school and, although only a part of her hair has come back, her memory and life quality is good.
The chance of relapse is always in the back of our minds especially when she has her six monthly MRI scans. Mainly though, we know how lucky we are to still have Sophia and we are so grateful to the NHS staff that worked 24/7 to save her life.
We are pleased to be able to share Sophia’s story with you via OSCAR’s so if you are affected by brain tumours, you can learn more about what can happen. Since being in touch with OSCAR’s, they have been a source of comfort in the background allowing us to contact them whenever we needed to. OSCAR’s provided Booster Boxes to Sophia as well as her little brother which were full of gifts of their favourite things to cheer them both up during such a difficult period of their lives. OSCAR’s also visited Sophia’s school to talk to her classmates and teachers so they could understand more about what had happened and how they could make her feel more comfortable returning after a year away.
