Sia was diagnosed with stage 4 metastatic rhabdomyosarcoma in June 2021. The prominent tumour was on her lower left leg, but the disease had already spread to her spine, lungs and bone marrow. At first, Sia responded to first line treatment, but then it stopped working and Sia started second line treatment in December 2021, but by the end of January 2022 the disease had mutated and there were no treatment options left.
Sia went to heaven on 4th of February 2022, only 8 days after we learned that she was terminal and 12 days before her 5th birthday.
One Sunday morning, in May 2021, Sia started complaining that her leg was hurting. This led us to discover a swelling in her lower left leg, just below the calf. I phoned 111 and we went off to A&E for X-rays and blood tests – all of which came back normal. A follow up on the Tuesday was discussed before we left to come home, but this got pushed out to the following Thursday. At this point I already realised that it was more serious and got Sia seen by a private doctor that same week. He requested an expedited MRI appointment through the NHS, however this was complicated by the fact that it had to be done under a general anaesthetic because Sia was only 4 years old. It took 2 weeks to get a consultant appointment at the children’s clinic and another week from there to get MRI done. The same evening that the MRI was done we had a video call with the consultant doctor that saw Sia at the children’s clinic, where she confirmed that it was a tumour and that we needed to be at the oncology ward in John Radcliffe Children’s hospital in Oxford the next morning at 9am. This was supposed to be a day visit, however when they tested Sia’s blood her calcium levels were off the charts and she was admitted to hospital. This visit turned into almost a month’s stay.
They needed to get her calcium levels down before giving her the general anaesthetic as this can be harmful for her heart. She spent 2 nights in PICU as they started her on Prednisolone as cancer treatment for lymphoma – as this was the cancer they were expecting – but also to help bring down the calcium levels. On Monday 14 June the biopsy and bone marrow aspartate were done and Sia got her wigglies (Hickman line). The week that followed was awful. Sia was in a lot of pain with shooting pain down her legs. On 17 June we finally got the diagnosis. It wasn’t lymphoma as they initially thought, but rhabdomyosarcoma. You know it’s not good news when the doctor consultant begins with “I’m sorry it’s not lymphoma” – not that one cancer is better than another, but lymphoma has more treatment options available. Without chemotherapy Sia would be in increasing pain for the next few months until she passed away, so choosing to proceed with chemotherapy was the kinder option, and she started on IVADo the next day. Since she was already in a bad way, the chemo side effects were severe. She got really bad mucositis and was unable to eat or take oral medication, along with a herpes infection and thrush. We didn’t know if she was going to pull through, but she did. From there she started responding to the treatment and we made it home 2 days before the next cycle of chemotherapy was due.
To everyone’s amazement, she responded beautifully to the treatment and got stronger. She even managed to start school in the September. At the beginning of December – the weekend before she was due her final intensive chemotherapy cycle – I noticed the primary site tumour on her left leg were getting bigger again and feeling warm to touch. Tests confirmed that she had stopped responding to the first line treatment. The bone marrow was now clear, however the MRI and chest CT scan showed a thickening on the lining around her lungs. We started on second line treatment, and at first it seemed like Sia was responding – her mobility started to improve along with her mood – but then I noticed new tumours appearing. In January 2022, we were struggling to get her pain under control and she started vomiting and complaining of severe headaches.
She tested positive for Covid on 19 January 2022 – and I felt relief as it explained some of the symptoms we were seeing. She was hospitalised on 21 January for vomiting and a line infection. The vomiting continued and a CT scan was done that showed that the ventricles in Sia’s brain were bigger than expected for someone of her age. She was transferred to John Radcliffe hospital on 25 June for an MRI and on 26 January we received the news that there were no further treatment options available to her and she only had a few weeks left with us. The cancer had mutated and created something like a sugar coating all over her brain, which stopped the spinal fluid to be absorbed and was building up in her brain. This was the cause of her headaches and vomiting. Only 8 days later, Sia passed away.
Getting to diagnosis took a month – and that was the most difficult and traumatic part of our journey. Sia’s cancer was extremely aggressive and had already spread to other parts of her body, including her bone marrow, spine and lungs. Due to her being so unwell, she had adverse reactions to the first round of chemotherapy that kept us in hospital until 2 days before her next cycle was due. She needed blood transfusions before each of the first 5 cycles to get her blood count “numbers” up in time for the next round of chemotherapy. She struggled with eating initially, but having the NG tube was equally distressing for her, but in a different way and we decided to remove the NG tube after a week.
Sia was an absolute rockstar and faced everything head-on, right up to the end of her life. The chemo made her tired, but she still managed to start ‘big school’ despite this and didn’t want to miss out on a single moment of living life to the fullest. She was able to live a relatively ‘normal’ and ‘healthy’ life from August to December 2021. In December she became refractory and was more tired than normal due to the change in chemo drugs. This continued until the symptoms of the cancer mutation started in mid-January, when the headaches and vomiting started. It was only 2 weeks from this point (8 days from getting terminal prognosis) until she passed away.
We would like to see a greater awareness of symptoms to look out for, both for parents and GPs. There needs to be a fast-track procedure in the NHS to get to diagnosis quicker. Note though that a quicker diagnosis won’t necessarily result in a different outcome, but it would make that initial stage less traumatic for the family.
Also, more availability and speed for securing an MRI scan under general anaesthetic, as this also caused a delay in getting the diagnosis.
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