Please help raise £340.000 to safe Amelia's life!!!

Up until the summer of 2020, Amelia was a happy 2.5 year old who enjoyed all the usual things toddlers do. In August when she had a sudden temperature spike of 40°C I was obviously worried, but thought it was just a regular illness. When her temperature didn’t drop for 7 days, I took her to A&E where a doctor said it was a virus and to give her paracetamol. We fully trusted him so we did just that and returned home later that night. Her temperature did eventually drop after about 3 days – but came back a couple of weeks later.

We were then admitted to the children's ward at the hospital. She was given 4 antibiotics and she did get better, but her temperature remained high. Amelia was referred for an X-Ray and an abdominal ultrasound, which did not show any abnormalities. The doctors were still concerned though so we were then referred to the Birmingham Children’s Hospital and sent for an MRI scan.

September 14th 2020 is when we received the worst news we could have ever expected. Amelia had a large tumour in her belly measuring roughly 17 by 9 cm. The day after we were urgently transported by ambulance to the oncology centre at BCH, where they set up a central line, did a bone marrow aspiration and took a biopsy of the tumour for further examination.

At the time, the doctors already assumed it could be Neuroblastoma, but we had to wait for the results. Waiting felt like the worst part, but then the news that no parent would ever want to hear hit on the 22nd of September that my 2.5-year-old daughter does have Stage 4 Neuroblastoma that had spread to her bones and bone marrow.

The first chemotherapy cycle started the next day for a total of 8 cycles every 10 days. Amelia dealt with this stage brilliantly, but despite how bravely she fought, the neuroblastoma cells were so strong that less than 50% remained in her small body. This meant another 3 cycles of chemotherapy for 5 days every 3 weeks. Unfortunately though these cycles did not give any results and cancer cells were still present in Amelia’s body.

After multiple tearful conversations with our oncology consultant, they decided the best course of action would be to give Amelia combination chemotherapy with antibodies. This would mean another 3 cycles of treatment for 5 days every 3 weeks. We couldn’t be happier when we found out that this time the treatment worked and Amelia was back on track for the standard treatment protocol for Neuroblastoma. She then underwent high-dose chemotherapy, spending 5 weeks and 5 days in the hospital.

This was definitely the worst step of our treatment up to that point. Amelia was in so much pain it was difficult to watch, with mucositis meaning she couldn’t properly eat or drink. She was fed through her central line because she couldn’t tolerate tube feeding. It was all a horrendous experience but Amelia never complained and slowly did get better.

In September 2021 we had further scans, including an MRI, MBIG and ST which showed the same results as before. This was disappointing news, but Amelia is a fighter so we carried on for her. The next step of our treatment was radiography. Every day for 3 weeks straight she was put on general anaesthetic to go through this step of treatment. Again she pulled through like a champ, always with a smile on her face. We didn’t know where all her strength had come from but it was something we all had to learn from her.

In December 2021, we had another round of scans to see if radiotherapy had given any results. At that point she was fed through an NG tube, but together with our consultant we decided to stop this because she looked well and maintained stable weight. We did struggle with eating and drinking for a while, but she slowly got better each day. In January 2022, we her results came back stable, but showed some active Neuroblastoma cells with no change from the previous scans.

This meant the next step of Amelia’s treatment journey – 5 days of Immunotherapy, 10 days of antibodies and 6 cycles of retinoic acid. Amelia struggled with the retinoic acid as it made her skin extremely dry, her lips would crack and she was struggling to eat. She was put on medication to help her manage the pain and again she kept fighting on for another 6 months. Her central line was removed in the middle of August 2022, 2 years after her initial diagnosis.

The end of treatment scans were showing her disease was stable. Amelia rang the bell – the long-awaited moment! – to show everyone that she finished her treatment. It was an extremely emotional day for all of us, filled with happiness, sadness and feeling so very proud of Amelia for everything she had to go through.

Amelia was regularly monitored, with MRI scans every 3 months, which were all positive. She was now a 4-year-old, enjoying her life and seeing her friends. It took a while for her immunity to go back to normal and she missed a lot of reception days during the first year, but she was able to start school and absolutely enjoyed her new adventures. She finally had the childhood every child deserves, and we could finally rest knowing that her disease was at bay.

On 17 March 2024, Amelia woke up in the middle of the night screaming from pain in her leg. I tried to massage it as I thought she just had a cramp, but it wouldn’t go away and she kept waking up 3 times that night. I was worried because it carried on for the whole day. I sent an email to our oncology consultant, and he responded very quickly – he attempted to calm me down because her last MRI results were good and showed the disease was stable. He booked an emergency scan, but before we were able to attend it, Amelia started limping. Following further back and forth with our consultant, the limping turned out to be much more of a concern so we were rushed in for a MIBG scan on the 5th of April.

The results were crushing – Amelia relapsed, and a new tumour was found in that leg. A week later, on the 12th of April, our consultant officially confirmed the relapse.

We discussed a few different options for Amelia’s treatment. Considering Amelia’s history, we know that she responds very well to combination treatment of chemotherapy and antibodies. This is the only chance for Amelia to fight this disease and get her childhood back. She has already been through so much, the thought of having to go through it again is horrifying. However, we know that we have to do this for Amelia.

Unfortunately, this treatment will not be funded by the NHS, with 1 cycle costing roughly £21,000 privately. Amelia will need around 12 to 17 cycles, meaning a rough cost of £340,000.

I am begging everyone for help – this is our only chance to fight Neuroblastoma and save my daughter’s life. Every penny will bring us closer to starting treatment. Please donate if you can to give Amelia another chance. She managed to beat the disease once – we’re sure we can do it again with your help!