Desmoplastic
Small Round Cell
Tumor Charity
Fourteen year old Sasha, a professional gymnast competing regularly in international competitions had struggled with back pain from late summer 2021.
At the time she was living with her family in Doha, Qatar. Training five times a week and pushing her body to its limits were routine for her, back pain appeared as though it came with the territory. She had tried physiotherapy and acupuncture but nothing appeared to alleviate the pain. Struggling to get comfortable at night, Sasha slept like a frog on her front with her legs tucked up.
By November, Sasha was struggling with stomach pain, often experiencing stomach upsets. A trip to her GP suggested it was probably viral, he could find nothing abnormal. By the end of the year it had become the norm as Sasha competed in an international gymnastics competition in Rome.
The daughter of a British father and a Ukrainian mother, Sasha returned to Doha in January. Determined to her core Sasha continued training despite the pain. When war broke out in the Ukraine in February 2022, the family’s worries were diverted as they tried to get Sasha’s grandma out of the country to safety.
Thankfully, it was a mission they managed and Sasha’s Grandma arrived in Doha in early March. She had been there a matter of days, on the 13th March, when Sasha’s condition rapidly deteriorated, she was heavily jaundiced and passing blood. Living in a foreign country came with complexities, not least a completely different medical system to navigate but a trip to the medical centre for bloods which showed that Sasha’s liver function was affected was followed by a trip to A and E and admission to ICU where Sasha was catheterised and given an ultrasound. This was followed by an MRI, which posed particular challenges as Sasha was unable to lie still due to the pain and therefore needed to be sedated.
The MRI found abnormal growths throughout Sasha’s abdomen including in her liver and kidneys. The head of oncology told her parents that it was unquestionably cancer and that Sasha would need a biopsy to determine the type of cancer and her treatment. It was a procedure that needed to be done back in the UK so staff at the Royal Marsden quickly became involved remotely in her care.
Unable to travel on a commercial plane because she was so unwell, Sasha was repatriated via air ambulance with her mum and dad by her side. Her siblings and grandma remained in Doha where good friends supported them in the absence of their parents, whilst the family started what would be an 18 month journey of commuting between two lives and two countries.
Once back in the UK Sasha was admitted to PICU at St George’s hospital in London where she had a biopsy and a drain fitted to remove ascites. It was the 27th March when Sasha received a diagnosis of Desmoplastic Small Round Cell Tumour, a cancer her parents had never heard of and were given little information about. Sasha was transferred to the Royal Marsden, but before she could begin treatment she needed stents in her liver (at King’s College Hospital) and her kidneys (at St George’s). They were procedures that weren’t without problems, only one out of the two liver stents were successful and surgeons were unable to place stents in her ureters which meant she had very limited kidney functionality – only 60% function in one kidney and about 20% in the other. However following the procedures Sasha was stable enough to begin chemotherapy.
In April Sasha started what would be the first of 14 cycles of VDC/ IE. Going to The Royal Marsden Hospital in Sutton for chemotherapy and the family’s local hospital in Ashford when Sasha needed blood transfusions or had an infection. Only three miles from home, Sasha had open access to the ward and quickly built up a special relationship with Dr Jill.
On Easter Sunday Sasha began to feel unwell and headed to the hospital to be checked out. It was to be the start of the most serious infection of her journey. Sasha’s body began to shut down and her organs began to fail. She was once again transferred to PICU at St George’s, where cultures came back showing a fungal infection in her line. Sasha spent just over three weeks there, dealing with the effects of chemotherapy and her hair beginning to fall out on top of the infection.
Navigating cancer, was however only part of the challenge that faced the family. Having arrived back in the UK with their own home rented out and a life and schools in Doha, accommodation and logistics were beyond complex. Sasha’s parents switched at airports monthly, going between caring for Sasha and their other children. Sasha navigated a new school despite only being able to attend for short periods and took qualifications to become a gymnastics judge. With the family planning to spend Christmas 2022 together in the UK, another hospital admission for Sasha put plans into jeopardy. It was a relief for all when she was finally discharged late Christmas Eve and the family were able to spend some much needed time together.
Like many DSRCT patients, proven treatment options for Sasha were limited and her family had begun to investigate trials for when her VCD/ IE protocol finished. As a paediatric patient these were limited with many available trials stating that participants needed to be over 18. Striking lucky and on the verge of getting accepted to a trial at Memorial Sloan Kettering Hospital in New York, the family began a fund raiser to raise the tens of thousands the trial would cost.
January brought with it mixed blessings, scan results showing Sasha’s tumours were stable but consultations with surgeons resulted in the news that the placement of those tumours meant any debulking surgery was impossible. Worse yet Sasha’s prospect of starting on the trial was revoked because of an issue with the drug being trialled, which meant it was no longer available to new patients.
It was back to the drawing board and despite trying to reach out worldwide no new viable trials or surgical options were available.
In March 2023 her family decided to try complementary therapies and Sasha and her dad headed to Switzerland for holistic treatment. Sasha’s dad explained that at that point it felt as though they had nothing to lose. They stayed for three weeks and took part in a protocol that involved thermal and magnetic treatment, with emphasis of eating organic vegan produce alongside it. It was a protocol Sasha hated, she longed for home, missed her home comforts and found the regime restrictive and frustrating.
Back in the UK, Sasha’s liver stent needed changing and she had further surgery at King’s College Hospital. This was followed by a bout of pancreatitis where doctors struggled to get the pain under control. Sadly, at this time scans showed her tumours had also started to grow again. Sasha went back to Switzerland for further treatment but decided she no longer wished to continue that program. By this time Sasha’s weight had dropped significantly and she was very weak.
In July 2023 the family were finally reunited, all moving back home to the UK. In September Sasha commenced further chemotherapy using the VIT protocol but after only one cycle it was clear that she was unable to tolerate the chemotherapy in her weakened state. Sasha stopped all treatment in September 2023, having made the decision to stop treatment and told Dr Jil that she simply could no longer continue, her weight had dropped dramatically and she was extremely weak. In October she started palliative care.
Once again Sasha was in hospital on Christmas Eve, but once again she made it home as the family set about making sure it was the best Christmas ever. A room crammed with presents, but more importantly a room filled with love.
In the months that followed Sasha’s pain was kept under control with fentanyl patches and ketamine. She continued to attend school for short periods whenever she could, enjoying the normality it brought to her life. Sasha loved spending time with her friends both those she had newly made and her friends from Doha when they were able to visit. One particularly memorable evening was when a friend flew from Doha to accompany her to The Royal Albert Hall – a night of party dresses and magic – a night to be a young woman not a patient with cancer.
Sasha celebrated her 16th birthday in January 2024 alongside her friends with an ABBA themed party. She celebrated to the full. Sasha would have love to travel, yearning for the Maldives and her friends in Doha but her weakened condition and lack of availability of travel / medical insurance meant neither were possible. Sasha died in April 2024, just over two years after her diagnosis knowing she was loved and that her family would have done anything for her happiness.