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.