Jessica, aged 8, was diagnosed with stage 4 alveolar rhabdomyosarcoma, in June 2019. She sadly died 3.5 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 has 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 do 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, Shihung, aged 12, who was like a sister to her. Jess' parents Laura and Simon are in the process of setting up a foundation, in memory of their amazing Jess, that will raise funds for Alice's Arc.
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 the career that has cancer. Better diagnosis is essential.
Gaspard, aged 4, was diagnosed in December 2018 and is currently receiving maintenance chemotherapy for stage 3 prostate embryonal rhabdomyosarcoma at Great Ormond Street Hospital. He has responded well to treatment and his tumour has shrunk substantially.
Gaspard was diagnosed at age 3, with stage 3 prostate rhabdomyosarcoma with a large 10x11cm tumour, involving bladder and lymph nodes. The tumor was so large that it was blocking most of his vital organs. Before the diagnosis, Gaspard experienced severe constipation, tummy pain and leg pains. Gaspard was rushed to Great Ormond Street Hospital in December 2018 as he could not urinate and his parents were given the diagnosis after tests and scans. He had to have 2 nefrostomies placed to drain his kidneys, a catheter to drain his bladder and a stoma bag to drain his bowel. Gaspard's treatment involved 9 cycles of Ifosofamide, Vincristine, Actinomycin (IVA) chemotherapy and 28 days of Proton Therapy in USA. Currently he is doing 6-12 months maintenance chemotherapy treatment. His response has been positive and the tumour has shrunk from 10cm to less than 2cm. Gaspard is French and is part of a family of 5, with two sisters. His parents Benjamin and Caroline have lived in London for over 15 years and work in investment banking and financial services. They have set up a foundation called Hope With Gaspard to raise funds for Alice's Arc and to promote awareness of Gaspard's journey and childhood cancer.
Gaspard kept his smile and innocence through out his cancer journey. His strength and courage have made his parents very proud of him.
We need to see more awareness for GP's around rhabdomyosarcoma and sarcoma cancers in general. There needs to be more communication between families affected by cancer and more communication around treatment options and drugs so families can make well informed decisions. There also need to be better treatments and clinical trials available for rhabdomyosarcoma.
Freddie, aged 4, was diagnosed with embryonal rhabdomyosarcoma in his left middle ear with parameningeal involvement, in July 2017. Sadly, Freddie passed away in October 2018, aged 5. His tumour returned aggressively to his brain, a new location. No treatments were available to stop it's growth.
Freddie was diagnosed with Rhabdomyosarcoma in late July 2017. He had started to feel unwell a few weeks earlier with an ear ache. After a few days a lump appeared in his neck. We went backwards and forwards to the GP and ENT specialist.
We were extra wary as in March 2017 Freddie’s younger brother had been diagnosed with a brain tumour and was receiving chemotherapy after a successful tumour removal. We knew the strange signs of cancer, we had trodden this path before, we had that awful feeling again. It just couldn’t be.
Freddie was suspected of having a severe infection in his neck. He started strong antibiotics. Then, trapping his finger in the art cupboard he turned around crying only half his face was not crying. He had facial palsy caused by what we now know was the tumour. Still we were sent away from A and E...... “no mum it’s not what you think it is”.... I will never forget those words.
A few days later Freddie was taken to GoSH where he started chemotherapy. A few weeks later we were splitting ourselves between boys at the were treated in separate countries! Freddie underwent proton treatment in Florida while Arthur continued his treatment in the U.K.
After months of madness the boys finished their treatment in the same day with an hour of one another. We started to recover....
However just weeks later Freddie started to have seizures. The tumour has returned, this time in his brain. He was given weeks. He fought every step of the way and died a few months later in our bed at home. Arthur remains in remission but desperately misses his brother. They had a deep bond as brothers and this reached even greater depths as they battled cancer together.
Freddie's parents are active supporters of Alice's Arc and have been fundraising for the last few years.
Freddie remained joyful throughout his cancer treatment. Always full of bounce, laughter and love. He had his brother to go through the journey with. They had their dressings changed, they talked about their wigglies, they took medicine together. They looked after each other through it all. Freddie was brave, determined and magical. You were lucky if you met him.
We would like to see quicker diagnosis and more awareness for parents. We would like to see kinder treatments. We would like more care given at home. We would like to see support for siblings of children with cancer and their friends.