Jessica, aged 8, was diagnosed with stage 4 alveolar rhabdomyosarcoma, in June 2019. She sadly died 4.5 months after her diagnosis. The cancer had unexpectedly spread to her brain and spine, in spite of scans a few days before showing she was free of disease.
Jessica was diagnosed with stage 4 alveolar rhabdomyosarcoma in June 2019. Sadly, by the time she was diagnosed she was very ill. The primary source was thought to be her right foot, where a lump had appeared some months earlier, but had been wrongly diagnosed by a soft tumour specialist at Spire Bushey as a haemangioma (a collection of blood vessels that swell up). Jessica first started to feel ill two weeks before her diagnosis and rapidly deteriorated. She had seen the GP twice in the first week and visited A&E three times in the following week, but despite (what we now know to be) warning signs, Jess was wrongly sent home each time. We were eventually referred to an oncologist at Watford General Hospital who acted very quickly as soon as she saw Jessica and admitted her to hospital for further tests that same day. Two days later we were delivered the news that a tumour had been found on her spine and it was clear there was bone marrow involvement too and Jess was transferred by blue light ambulance to Great Ormond Street Hospital (GOSH), where later that week she was diagnosed with ARMS. Further tests soon revealed the extent of her disease, which by this point was wide spread. Jess needed daily blood and platelet transfusions and started chemotherapy straight away. After a month in GOSH she was well enough to return home in between her chemotherapy treatments, of which there were to be nine rounds. After Jess’ sixth round of chemotherapy (in October) Jess was sent for scans to show how effectively the chemotherapy was working and the results showed that she had responded well, with all the tumours presenting as ‘dead’ and the bone marrow had also cleared. Unfortunately, two days before getting these results, Jess had started to feel poorly again and was having bouts of dizziness. Several trips back into Watford Hospital and she was again blue lighted to GOSH where she was placed in intensive care. An MRI showed that the cancer was present in her spinal and brain fluid. This is something never seen before at GOSH. Despite attempts to deliver chemotherapy directly into Jess’ spinal fluid, she died suddenly, after a week in ICU, on Friday 18th October 2019 following a cardiac arrest. Jess’ death has had a huge impact on her family. She has a brother Finlay, who was only 6 when she died. She was also very close to her cousins and in particular, Shihang, aged 12, who was like a sister to her.
Her experience was horrific. We made the decision early on not to tell Jess she had cancer as she was an anxious child and we did not want her to worry. We felt shocked by the lack of treatment options available and it was heart-breaking watching her.
Jess was initially seen by a GP who told us we needed to wait three weeks for a scan, so we decided to seek private advice and Jess saw a ‘sarcoma expert’ at Spire Bushey, who misdiagnosed her. She was seen by multiple doctors during the two weeks of illness leading up to her diagnosis and not one of them picked up on the seriousness of her condition. We feel extremely let down. We were told that a GP may only ever see one child in their career that has cancer. Better diagnosis is essential.
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