Nicol had a lovely childhood full of smiles and curiosity, always eager to explore the world around her – until December 2020.
Nicol started walking with her right foot turned inward, which I thought was just a phase. But then, she stopped using her right hand and preferred using her left. Something didn’t feel right, but others reassured me that she might be left-handed.
About a week later, I noticed her head tilting to the right whenever she watched something or smiled, and her face seemed asymmetrical. Soon after, she started limping on her right leg, which left me feeling worried. Trusting my maternal instincts, I decided to call our GP.
I explained that Nicol had been limping for two days, and the GP advised us to go to A&E to have her leg checked.
Diagnosis
I took Nicol to A&E alone due to COVID restrictions which allowed only one parent to be with her. The doctor asked me several questions about Nicol's behaviour over the past few weeks. That same night, after a CT scan, we received the horrible news that Nicol had a brain tumour. I’ll never forget the moment they asked me to call my partner to come to the hospital so we could be taken to a quiet, private room to talk. It was in that moment that our lives broke down and completely changed.
We were transferred by ambulance to Great Ormond Street Hospital (GOSH). Once we arrived, Nicol had an MRI and a biopsy. Shortly afterwards, the neurosurgery team informed us that she needed to go straight to theatre for an operation.
Treatment
I was so scared and worried about what to expect because the brain operation carried risks of potential damage and complications. When Nicol woke up, she was unable to talk or walk.
Nicol underwent another brain operation in 2021, followed by chemotherapy, which resulted in numerous complications.
Her chemotherapy regimen changed every three months because nothing was working. Almost every three months, we were told that her tumour was growing and that new tumours had been found in her brain and spine.
We had to be careful because Nicol was born with a multicystic dysplastic kidney, meaning she only had one functioning kidney. In June 2022, she started her fifth treatment protocol, which we hoped would be effective. Finally, in January 2023, we received the encouraging news that the tumour was stable for the first time.
On the way to GOSH for Nicol's regular check-up, she had a seizure in the back of the car. Her oncology consultant recommended an emergency MRI. Following this, the doctors informed us that the tumour was growing and that a new tumour had been found in her brain.
Nicol had only one remaining treatment option available through the NHS. If this treatment didn’t work, she would’ve needed full radiation therapy for her brain and spine. However, because she was so small, this had the potential to cause permanent damage to her brain. We had heard about a promising targeted therapy from America, so we discussed the possibility of bringing this treatment to the UK with our consultants. We were informed that the process would take time. During the two-month waiting period, Nicol's tumour continued to grow.
We received the wonderful news that Nicol had been approved for the new targeted therapy and began treatment in August 2023. Unfortunately, not everything went as planned during the first three-month scan. The MRI showed a slight increase in one of the tumours, while the others remained stable. However, after consulting with the doctors, we decided to continue the therapy for another three months.
Nicol began having seizures, starting with one per day. By the second day, she was having two, and by the third day, she experienced five in a short span of time. This was worrying, as her seizures had previously indicated tumour growth. After an MRI to determine the cause of the seizures, we received more devastating news: one of the tumours had grown significantly.
After meeting with our consultant, we insisted on another biopsy. The doctors suggested that, during the biopsy, they would try to remove as much of the tumour as possible.
Nicol showed incredible strength. Just a few hours after her surgery, she was hungry and wanted to get up and walk. We continued her targeted therapy as before the operation. Eight months after the surgery, we’ve seen improvements in her condition. At each of her MRIs, we've received good news: all the tumours are stable, and one has even shrunk. This was amazing news for us.
Challenges faced
Over the past four years, we’ve faced numerous challenges. One of the most difficult was the COVID restrictions, which allowed only one parent to stay in the hospital at a time. This was particularly difficult because, during the times we needed each other’s support the most, we were unable to be together.
Our lives changed completely as I couldn’t return to work. For the first two years, we lived between GOSH and our local hospital. Nicol and I would return home for a few days, only for the cycle to start again.
In addition to dealing with temperature changes, viruses, blood transfusions, and infections, we had numerous appointments. At times, we needed to travel to GOSH twice a week. If the traffic wasn’t too bad, it would take at least two hours to get there.
Side effects of treatment
After undergoing various treatments, Nicol experienced different side effects. After her first two operations, she stopped walking and talking. We began the process of helping her relearn to walk and talk again. She still has weakness on the right side of her body, which stops her from running or jumping. Due to her tumour, Nicol is losing peripheral vision in the right side of both eyes. She experiences seizures because of the tumour's location, so she is on anti-seizure medication, which has side effects that affect her personality. As a result, her behaviour has become quite challenging.
After the last operation, the new medication worked well, allowing us to lower the dosage, which helped her recovery. She regained her sense of self but showed early signs of puberty, so she began monthly injections to stop the advancement.
The other side effects of this targeted therapy include stopping her growth, which is quite common. Her skin is sensitive, so she needs daily application of cream. Additionally, she is sensitive to sunlight, so we must keep her out of direct sun and use sunscreen with SPF 50. Otherwise, there is a risk of skin cancer. Her hair is starting to grow white, which everyone talks about. I often joke that she has the most expensive hair colour!
Advice for parents
When friends ask me how I knew something was wrong, I always say, 'Listen to your maternal instinct; it will never let you down.' If you notice something strange or unfamiliar, it's always better to have it checked and advocate for your child. When Nicol started showing her first symptoms, some friends told me, 'Oh, it's your first child, you're being too overprotective,' while others said, 'Don’t worry, a lot of kids walk like that.' But I kept telling myself something was wrong and that I needed to take action. I'm so glad I trusted my maternal instinct.
No matter what has happened or how bad the news is, my partner and I always try to stand up quickly, clear our minds, and think about what to do next and how we can help. Some people ask me how we manage, and I tell them 'It's not easy. It is difficult, scary, painful, and sometimes exhausting, but we never give up and lose hope for a moment. We’re parents, and if we are not strong and standing by our child, who will be?’
I often say that without research, many children facing brain tumours would not be here today. Every country needs to provide greater support, both from the government and the public, to ensure these children have a better chance of growing up and reaching their full potential.
Our free publication, 'Coping with Family Life and Cancer,' has been written by parents for parents to share their experiences, tips and advice to help newly diagnosed families cope better with the impact of cancer on their lives.