Mum Sarah, 42, from Surrey and her 15-year-old daughter Jody have spent the last three years since Jody’s diagnosis with a brain tumour knowing nothing about what tumour type it is and questions, including viable treatment options, remain unanswered.
The family have only been told that it is fast-growing, aggressive and at Stage 4. But, despite three operations, several rounds of chemotherapy and radiotherapy and two recurrences, the medical team looking after Jody are dumbfounded as to what tumour type it may be. Sarah is currently looking into options to have the biopsies of each tumour tested privately to try and find out more.
Sarah said: “It’s so very hard not knowing what tumour type Jody has. It’s difficult to believe that after all the tests that have been done that they don’t have enough relevant information which could help to open up new treatment options for her. The medical team can only go on what they know based on a specific tumour type and, for Jody, they know very little.”
It was back in 2018 that Jody was first diagnosed with a brain tumour. During the school summer holidays when Jody was 12 years old, she began to take much longer to do tasks which she had previously been able to do, such as getting dressed in the morning. Sarah took Jody to the GP but her symptoms were put down to anxiety ahead of returning to school.
As Jody returned to school, Sarah noticed she struggled with the buttons on her school uniform. She also soon began to have periods of violent sickness, regular headaches, mood swings, face twitches and she was unable to walk in a straight line.
Unbeknown at the time, these are all classic symptoms of a brain tumour, as highlighted in The Brain Tumour Charity’s Headsmart campaign which aims to raise awareness of the signs and symptoms of brain tumours in children and young adults.
Sarah took Jody back to the GP a week after the schools returned and she was then referred to the Royal Surrey Hospital for a scan. This found the mass on Jody’s brain so she was kept in overnight and transferred to St George’s Hospital in Tooting the following day. A week later, Jody had surgery which removed most of the tumour.
Sarah said: “Before Jody’s diagnosis, I knew a little bit about brain tumours but not much – I don’t think many people do. I did know that something was definitely wrong with her when we went for that final GP appointment but I never imagined that it would be something as devastating as a brain tumour. I think the GP did suspect it though but didn’t want to tell us at that point before a scan.
“Looking back, Jody did have some symptoms over the years. She would be randomly sick on occasions but they would be treated as just sickness bugs or a one-off thing. I have no way of proving that this was linked to the tumour though as the doctors haven’t been able to tell us how long they think the tumour may have been growing for – it’s yet another thing which we have no idea about.”
After the surgery, it was confirmed that Jody’s tumour was cancerous. She needed several rounds of chemotherapy as well as six weeks of radiotherapy which meant missing the return to school. Instead, she had treatment at the Royal Marsden Hospital until the following July and she had to contend with the side-effects including sickness and losing her hair. She then had three-monthly scans to monitor her condition.
Sarah said: “Things were very intense after the first operation for a long time. A lot of the symptoms reappeared before the chemotherapy started and then the treatment was tough. Jody struggled with appetite and her hair fell out – but she took it all in her stride and just shaved it off as soon as it started coming out. She wears bandanas to school, and she was given a wig, but she is also quite happy for people to see her without any hair.
“Jody felt very isolated when she was out of school and she couldn’t really see her friends as she was in and out of hospital so much. We all hoped that life would return to normal when the treatment ended but, as a parent, I knew things would never be completely the same ever again.
“Jody has missed out on what life should be like for a girl of her age by not being able to go to school or spend time with her friends. She attended lessons run by the hospital when she was able to and she then had tutors at home for four hours a week. But none of this can or has made up for the precious time she lost.”
With Jody’s support, Sarah changed her from a large mainstream school to a smaller one so Jody’s medical needs can be more closely attended to and monitored if required.
It was during a routine scan in October last year that the family’s nightmare began once again as a scan found that the mass had grown so Jody needed more treatment. Ahead of a quiet family Christmas in line with Covid restriction, Jody had surgery in December, which removed all of the tumour, followed by six weeks of radiotherapy and oral chemotherapy. Then in July this year, Jody relapsed once again as another tumour grew. She had another operation, which again removed all of the tumour but also led to two focal seizures. She is also currently having a second round of chemotherapy.
Sarah said: “We were absolutely devastated when Jody relapsed – it came after 15 months of clear scans so we optimistically thought that the worst was behind us. Both relapses also didn’t show any symptoms either, which makes it so scary that something like this can happen yet it is only a scan which can make it apparent. Jody handled it all amazingly – her main concern was being able to keep going to school.
“The treatment, especially the oral chemotherapy which she is currently having and doesn’t require attending hospital, is a little easier. Jody can still go to school and now only misses the odd day – she loves school so it was clear that the treatment options had to work around this. She has lost her hair again and has some sickness but it’s better than it has been for her – she has been through so much.
“I try to keep life as normal as possible for Jody and for ourselves but it is very tricky. For example, we have to monitor her blood counts regularly in case of any drops which could show an infection or low platelet count which could mean having a transfusion. It does feel like there’s always something we need to do to ensure that she is properly cared for.”
Sarah has turned to the support channels offered by The Brain Tumour Charity to help her as she navigates Jody’s treatment and the care she needs and find out what she needs to know about the disease too.
"The Brain Tumour Charity's parents support group on Facebook is great. It’s helped me to talk to others who are experiencing similar things to myself, to ask questions of people who understand and it also provides a place to vent when I need to with people who know what you’re experiencing to listen and offer support."
Sarah added: "I definitely don’t think there is enough known about brain tumours and the treatments which could be available for people like Jody. I don’t think there’s enough support either, which is why we appreciate that offered by The Brain Tumour Charity. I find it absolutely shocking how little funding is devoted to brain tumours and how so little research has been developed over so many years. Much more needs to be done for both children and adults and also the medical professionals who really struggle too when options are so limited for people like us.”
Jody has also found the support channels offered by The Brain Tumour Charity useful, especially the organisation’s Instagram page as it helps her connect to people who are also affected by a brain tumour in some way.
Jody, who hopes to go to college before pursuing a role in childcare, said: “I really didn’t like missing school when the original tumour was first discovered. It is a little easier for me now that I am at a different school and I can have treatment whilst still going to classes. I do feel sad when I have to miss school for the different appointments I have to go to though, especially if it is a lesson I like such as childcare.”