Frank, now aged 6, was diagnosed in July 2016 and is currently three years clear of cancer. He was diagnosed with embryonal rhabdomyosarcoma in the nasal pharynx with optic involvement. His care was led from the Royal Marsden, Sutton.
In June 2016, Frankie, aged 2, started to wake at night screaming and saying that his nose hurt. We took him to the local GP and they said nothing appeared to be wrong with him. This continued for a few weeks and, one evening, when he was particularly upset, we took him to our local hospital, Pembury in Tunbridge Wells. They looked up his nose with an eye phone light and said there was nothing to see. He was now beginning to get streaks of fresh blood and mucus from his right nostril. We returned to our GP and they said he probably had a nasal infection and provided us with various nasal sprays. After the 6th trip to the GP when Frankie had blood coming from his right eye, we were sent to Pembury again. After a 5 hour wait they looked up his nose again and said that they could see something shiny and that they didn’t want to pull it out in case it was attached something. The Consultant, we needed to see was away for a week and so we were sent home again. During that week Frankie was so ill and in so much pain that we had to go to A&E twice. However, we were sent home as the Consultant was still away. By this point there was now a visible growth coming out of the bottom of his nostril, which was very bloody. When we finally saw the Consultant, he concluded that Frankie had picked his nose and the body had over repaired itself and created granulation tissue. He said it was nothing to worry about but that they would needed to remove it Under GA. They decided this approach would be better than an MRI given that the MRI scanner was so busy and it would be a longer wait for the scan. The Consultant managed to remove part of it but told us that it was bigger than expected and was positioned deeply in the nasal passage and too risky to remove. By this point Frankie was very poorly and we were sent home. He began to bleed from his eye and nose and I demanded to have an MRI scan. Finally, the scan revealed a large mass engulfing the nasal pharynx, moving the brain out of its way, destroying a bone in the back of his nose and lurking behind his eyes.
The diagnosis was embryonal rhabdomyosarcoma, a word we had never heard before. Frankie was transferred to St Georges Hospital, Tooting where he had a bone marrow aspirate, surgery to fit a Hickman line and another MRI scan. Emergency chemo began but we noticed that his right eye had become fixed. The Moorfields eye division at St Georges confirmed that his optic nerve had been damaged by the tumour and that he had probably lost the vision in his right eye.
Frankie underwent three rounds of intensive chemotherapy at the Royal Marsden in Sutton. Given that the tumour was inoperable, he was approved to have proton radiation in Oklahoma City, USA. Proton beam therapy is only suitable for a small number of people. It is used to help reduce the risk of long-term side effects that can often develop after standard radiotherapy. It can also be used to treat cancers that are close to critical structures in the body to minimise damage to healthy areas. He had 32 doses of proton with a GA each time. Alongside proton therapy, Frankie had three further rounds of intensive chemotherapy. During this time a neuro-opthalmologist confirmed that he was blind in the right eye. We spent 3 months in the US before returning to the UK for two further rounds of chemotherapy.
Frankie was scanned at the end of his treatment in February 2017 and the fantastic news was received that there was no evidence of disease! All clear! His Hickman line was removed and life returned to somewhat normality. He was been scanned 3 monthly for the last 3 years and his most recent scan in February 2020 he still remains clear. We are extremely lucky and forever grateful for the Royal Marsden and the Oklahoma proton centre for all they have done for Frankie. He is now 6 years old in Year 2 at primary school and loving life. He will have one more scan in July 2020. He requires a growth hormone injection everyday to stimulate his growth and he has also undergone surgery for cataracts in his eyes which have resulted from his treatments. Frankie and his family have been actively fundraising for Alice’s Arc since they were introduced in 2016.
From a terrible misdiagnosis which resulted Frankie loosing the sight in his right eye which was a hard pill to swallow. The constant fear of infection the relentless taking of his temperature as if a spike that would lead to 3 days hospital for IV antibiotics in a hospital that didn’t have an oncology ward it was a general hospital not an ideal place for a neutropenic child. Frankie underwent 7 blood transfusions and 3 platelet transfusions. We found our time in America a positive one and were looked after very well by the hospitals there. The journey was hard and terrifying at times, people often said I don’t know how you’re doing this, the answer was we have no choice in the matter we had to fight and stay as strong as we could for Frankie and his big sister Layla.
We would like to see kinder treatments, less mis-diagnosis. GP’s & hospitals should be educated more about rare children’s cancers to know the signs to look for. More awareness to be raised within communities, more adverts on TV or in newspapers for fund raising and awareness to be increased in the UK.
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