In September 2021, Tommy, aged 5, was diagnosed with embryonal rhabdomyosarcoma of the parapharyngeal region in the head, with tumours also detected on his lungs. Tommy has received IVADO chemotherapy and proton beam therapy in Essen, Germany, *radiotherapy on his lungs and then a year of maintenance chemotherapy. Tommy completed his treatment in April 2023 at Leicester Paediatric Oncology Department at Leicester Royal Infirmary Hospital, where he continues to be monitored with MRI scans of the primary site and CT scans/xrays of his lungs on a 4 monthly basis.
At the beginning of the summer holidays in 2021, we were on a camping trip in Cornwall and Tommy started snoring at night which was unusual. He continued without any other symptoms for the rest of our stay. The evening we returned home he spiked a high temperature above 40 degrees and was delirious. Unhappy to start the night without him being seen, we took Tommy to the local walk in urgent care centre. Here, they took one look in his mouth and immediately concluded that he had tonsillitis and prescribed 10 days of antibiotics. At the end of the 10 days, with us due to fly out to Spain for our family holiday in 3 days time, we took him to see our GP. He was content that the antibiotics had taken effect and the swelling in his mouth had gone down with only a slight redness and inflammation on the left hand side. Tommy was prescribed a further 5 days of a higher dose of antibiotics so he was fully covered especially with our imminent trip aboard. Once in Spain, Tommy, having not complained once from the start of his symptoms, on the final day of the prescribed antibiotics said his throat felt lumpy and we took him to see the GP on site. She prescribed more antibiotics, steroids and antihistamine as the swelling had increased and a lump on the left hand side of his throat was clearly visible. That night we became increasingly concerned by his laboured breathing. He was pausing for breath and we called the emergency line. By 5am we were at the closest hospital just outside of Cartagena. Here, we slowly made our way through the emergency system, which was not helped by the language barrier. Blood samples were taken with no warning and force, and with limited communication this was understandably very frightening for Tommy. We finally made it to the ENT department where many doctors examined him and he had a CT scan, as he refused the camera examination via his nose. We were repeatedly told they didn’t know what it was and they wanted to take a biopsy of the lump in his throat. After an excruciating experience of Tommy being taken away from us in order to be put to sleep without us by his side, he had a general anaesthetic and a biopsy was taken. Once the procedure was completed and we were told they didn’t like the sight of what they found, we made plans to get him back to the UK as soon as possible.
After a few nights stay in the hospital we managed to get him discharged and made arrangements to fly back to Stanstead in order to make an appointment the following morning with a paediatric ENT specialist in London. The consultant gave us hope as he believed this was an abscess caused by the tonsillitis, something that can happen, but more frequently in adults. After an examination of the MRI scan Tommy had there, the consultants saw no reason to believe it was anything other than an abscess and booked him in for a procedure to drain the abscess that should in turn immediately reduce the inflammation. At this stage, Tommy couldn’t sleep without us by his side throughout the night, as we had to wake him frequently in order for him to breathe properly. As Tommy was on his way to theatre we received the devastating call from Spain confirming that the biopsy results were back and that the swelling in his throat was in fact a malignant tumour. The consultant made the decision to go ahead with the procedure to reduce the tumour so that Tommy could breathe properly. Another biopsy was also taken. Thankfully, Tommy was able to breathe more freely following the procedure. However, his voice was significantly compromised and he could barely speak. Though this seemed a minor concern given the news we had just received. Tommy was then swiftly referred to Great Ormond Street Hospital. It was at this stage that we received Tommy’s specific diagnosis of Embryonal Rhabdomyosarcoma of the parapharyngeal region. Arrangements were quickly made for him to have a Hickman line fitted which would put an end to the frequent needles he was so terrified of. He was also booked in for a variety of tests, a lumbar puncture, bone marrow biopsies, MRI, CT & PET scans, all before he would need to start his first cycle of chemotherapy by a certain date. An additional small tumour was discovered in his lungs during this screening. He would require 9 cycles of IVA chemotherapy before radiotherapy treatment. In amongst all of this Tommy had to have almost daily covid swabs taken which became an enormous issue for him.
Tommy’s chemotherapy treatment started at the start of September 2021 at GOSH. The first 12 hours were particularly challenging as he suffered from terrible sickness. Throughout the first night, Tommy’s breathing deteriorated again significantly, this was caused by inflammation from the tumour in his throat, subsequently caused by the chemotherapy. By 5am the following morning he was transferred to the intensive care unit so that his breathing could be closely monitored. Soon after we arrived in ICU Tommy had a seizure. He was immediately taken to theatre to be sedated and put on a ventilator. They decided to give neurological protection for the next 48 hours in order for the swelling on the brain to reduce. We would not know the full effects of the seizure until he was brought round again. During this time they took an EEG and a CT scan, from this they discovered a second tumour in his lungs. This would change his staging from ‘high risk’ to ‘very high risk’ and would mean an additional drug, Doxorubicin, would be added to each cycle of his chemotherapy treatment. A few days later Tommy was taken off the ventilator and initially showed appropriate responses, with some but limited speech, as he came round from the sedation. However, he soon deteriorated and became unresponsive with limited to no movement.
The next few days were incredibly challenging as we witnessed this but he slowly started to improve again. We were then informed that they wanted to operate and remove as much of the tumour as they possibly could, but with limitations, due to its location in his throat. This would also mean Tommy being put back on the ventilator for a few days which was an incredibly frightening prospect. They would also insert a gastronomy feeding tube into his stomach, so we could feed him directly through this, as he had lost so much weight so quickly and hadn’t eaten anything for over a week. Thankfully, the procedure went well and Tommy came off the ventilator without the complications we had experienced previously. We were then incredibly grateful to be leaving the intensive care unit and were taken back to the ward to complete his first round of chemotherapy. After a harrowing 11 days we were eventually discharged and able to return home. Tommy was weak but managed to muster up the energy to play in his much loved sand pit! We then managed a couple of weeks at home before returning to GOSH nervously to start cycle 2 of his chemotherapy, this time with the added drug Doxorubicin. Thankfully, Tommy got through this cycle with minimal side effects especially compared to cycle 1. We then said our goodbyes to all that had cared for Tommy at GOSH and we were transferred to Ward 27, the Leicester Paediatric Oncology Department at Leicester Royal Infirmary.
Despite the knocks of chemotherapy every few weeks, Tommy continued to build up his strength having had such a bad start to his treatment. He caught covid at the start of cycle 5 which meant a 2 week stay in hospital but we managed to get home just before Christmas. At the start of January 2022, Tommy and I went to Essen, Germany for 2 months for Proton Beam Therapy. This was a very challenging time for him, for lots of reasons, but he got through his treatment having 30 general anaesthetics during his time there. Tommy also received his last 2 cycles of chemotherapy whilst we were there. By the last 2 weeks of radiation therapy, Tommy was unable to eat and at times, even speak, as his throat was so sore. He relied solely on the fortified milk given via his feeding tube. Thankfully, as the weeks went on and we returned home, Tommy improved daily and started to build his strength up again. We had a few weeks break in Tommy’s treatment before completing his intensive treatment with 10 fractions of radiotherapy on his lungs, due to the 2 tumours found. Having completed this he was then transferred onto maintenance chemotherapy.
We feel there should be far greater funding from the government dedicated to the research and development of advanced new treatments for children with rhabdomyosarcoma. Currently only 2-3% of cancer research funding in the UK goes towards ALL childhood cancers. We also believe there must be much more general awareness of this horrendous disease, that would in turn benefit the children and families exposed to this.
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A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
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