At the end of December 2022, when Alexia was just 9 years old, she began to feel very unwell. She experienced varying symptoms from insomnia to severe headaches, stomach problems, loss of appetite, physical weakness and personality changes. She also began to drink excessive amounts of water at night and had an insatiable thirst. Her mum, Alana, took her back and forth to the Doctors and A&E where they carried out various tests over 10 weeks to figure out what was going on, but all the results were within normal range.
By the end of February 2023, Alexia was unable to eat anything without being sick and began to lose a significant amount of weight. The doctors thought that she might be suffering from anxiety or was being bullied at school or maybe had a food allergy. In March 2023, she came home from school and said she was unable to see the board clearly, her parents found this strange as she had an eye test the previous week and the results for this was normal.
Mum Alana said, “I was sitting next to Alexia on the sofa at home and she told me that she couldn’t see me and could only see half of her Dad, who was sitting opposite her. At this point we knew that something was seriously wrong.
“We went back to the Optician who had seen her the previous week, and he told us to go to the Doctor and to call him when we were there so he could speak to the Doctor directly. We were referred immediately to a specialist Ophthalmologist at the hospital who confirmed that the health of Alexia’s eyes was fine, however there had been a change in her vision which was not normal.”
Alexia’s Mum took Alexia back to A&E where Alexia began to vomit and was admitted to the ward for further testing. The next day she fainted and by that afternoon she could only see a pinhole. A second MRI was taken of Alexia’s head (this time using dye), which revealed a tumour on Alexia’s pituitary gland which was touching her optic nerves and affecting her vision.
“It was our worst nightmare come to life and as I listened to the doctor telling us this news, it felt like an out of body experience. I could not believe that this was happening to us.”
Alexia was transferred immediately by ambulance to the Paediatric Intensive Care Unit (PICU) at St George’s Hospital and the children’s ward, where she lived for the next three months. During this time, she underwent her first brain surgery which took six and a half hours. The surgeons tried to remove the tumour however they decided it was too high a risk. Instead, he took a biopsy and drained some of the fluid around the tumour relieving some of the pressure on the optic nerve with the aim to improve her vision.
‘We were relieved that some of Lexi’s vision returned but we were devastated that the surgery was not successful.”
The results of the biopsy showed that Alexia had a rare mixed germ cell tumour and she spent the next three months living in hospital as her medical team worked out a treatment plan and next steps. During this time Alexia’s vision started to deteriorate again. She was given an emergency round of chemotherapy to see if the tumour would respond and spent the next months in the Royal Marsden in Sutton receiving intense chemotherapy treatment. In between her treatment cycles she would be allowed to go home however, she would often become unwell and had to be admitted back to St Georges Hospital in the children’s oncology ward.
‘To say our world was literally turned upside down would be an understatement. It was an extremely traumatic and upsetting time for us all but especially Alexia as she was often in isolation because of the high risk of infection so she could not see many of her friends or family.
“When we told Alexia that she had a brain tumour, her first question was ‘Am I going to die?’. She was worried that everybody who gets cancer dies. It was such a difficult time for the whole family, but it was even more traumatic for Alexia when she lost her hair. Despite all this, she always tried to smile through her pain and put on her ‘brave’ face.”
In August 2023, Alexia had brain surgery for the second time. This time with the purpose to remove as much of the tumour as was safely possible. After five hours in surgery, her neurosurgeon was confident, that despite the dangerous position of the tumour, they had managed to remove most of it. The surgery was successful and subsequent MRI and CT scans showed that most of the tumour had been removed.
Her treatment continued in the months that followed where she underwent daily Proton Beam Therapy (PBT) at the University College London Hospital (UCLH).
“During our journey, we always noticed the Spread a Smile entertainers visiting, but it was when we were at UCLH that we really got to know them. They would attend the PBT children’s ward every Friday and all the children especially Alexia would look forward to their visit.”
Alexia loved taking part in the weekly art classes and really enjoyed the days when Buddy the therapy dog would visit. The visits from the therapy dog was one of the things that impacted Alexia the most. Many times, when she was admitted to hospital and was so weak that she could not move much, she would ask for the therapy dog to lie next to her on the bed and she would stroke him. His warmth and gentle nature provided Alexia with great comfort during times of distress and helped to give her the strength that she could get through it.
“We also met Buddy’s owner, Josephine, one of Spread a Smile’s Co-founders. I found out from Josephine how the charity started. She was very encouraging, and it made such a difference to connect with someone that could relate to how much life changes after a cancer diagnosis.
“Spread a Smile provided a much needed and welcome distraction whilst Alexia was in hospital. She would try so hard to be brave all the time and keep a smile on her face but I knew that she missed being at home with her siblings and friends. We would often hear the singing and laughter before we saw the familiar Spread a Smile t-shirts and she would be eagerly staring at her door waiting for the opportunity to see one of the entertainers.
‘In one of her admissions when she was in isolation, they even stood at her door and did a performance just for her. It really made her feel special and reminded her that life wasn’t always going to be this hard and maybe there was a light at the end of the tunnel.
“It really brought tears to my eyes to see how much effort the Spread a Smile team put into making each child feel special and putting a smile on their faces. It really made a huge difference to me as a parent to see how happy it made Alexia every time she spent time with one of the Spread a Smile team.
Alexia really enjoyed the wide range of activities that they put on for the children and she was able to interact with other children who also had cancer.
‘In those moments they were just a bunch of kids enjoying time together and just being children. The sound of her laughter and the smile on her face gave me hope and reminded me that one day our family would be back together, and Lexi would be ok.
“When Alexia was well enough, we also went to an afternoon tea that Spread a Smile organised in London, which she really enjoyed and she got to interact with other oncology children who were at the same hospital but whom she had not met.
In February 2024, for Alexia’s 10th birthday she wanted to do something impactful to help other children who had cancer. She remembered
how happy she felt when she saw Spread a Smile’s entertainers and how they made her forget how difficult it was being in the hospital. For her 10th birthday she shared how much of a difference Spread a Smile made to her life at hospital and asked family and friends to donate money to her fundraiser for Spread a Smile instead of giving her a birthday present. She was really chuffed to raise even more than she thought she would have and managed to raise £750.
“It meant a lot knowing that our friends were acknowledging and supporting a cause that has made and continues to make such a difference to Alexia and us all.
“Spread a Smile offers virtual art and singing clubs and although Alexia has thankfully not had to be admitted as often as before she has still been able to join in with the weekly virtual classes and looks forward to this every week. SAS has been a huge help in helping Alexia to transition back to ‘normal life’ and continues to be a part of her journey even after the completion of her treatment.
“Spread a Smile has played a massive role in our whole family and even with Alexia’s siblings and will always be a charity that we will continue to support and recommend to other oncology families.
Please help ensure we can continue to support children and young people like Alexia and their families by donating today. Thank you.