Isabella Steele

Isabella was diagnosed with stage 4, Embryonal Rhabdomyosarcoma on January 13th, 2022 at the age of 20 months old. Her tumour presented along the jaw and towards the skull. The tumour was deemed inoperable due to its complex location. Isabella received nine rounds of chemotherapy (IVA) and 31 days of intense proton radiation therapy at the Christie, Manchester. This was later reduced to 28 days due to how sensitive her skin was to the radiation. Six months of maintenance chemotherapy was also planned. Her care was led from Children’s Hospital, Belfast.

Sadly,  a few months after Isabella started maintenance, an MRI scan on the 7th October 2022 showed that Isabella had relapsed with disease now present in the parameningeal region and fluid around the brain and spinal cord. Her primary area of disease remained stable. Isabella passed away 19 days later, aged two years old.




Isabella 's Story...

Isabella turned one on 5th May 2021. She was just like every other one year old, enjoying time with her sister and cousins. Covid restrictions started to lift and she was able to start Mums and Tots classes at the end of November 2021. Isabella soon started to have days where she went off her food. She was also quite unsettled at the time but she was teething so I assumed it was down to that.  A couple of weeks later Isabella’s cheek was swollen so I rang the GP and set up an appointment where he told me it was a viral infection and antibiotics would clear it. I did ask if it could be cancer but was told I was being an overly anxious mother. Isabella started her medication and seemed a little better but the swelling on her cheek remained and her appetite still didn’t improve. A further GP appointment followed and a different antibiotic was prescribed. Again, I asked about cancer but was still told it was just an infection. It was now the middle of December 2021 and Isabella was still not her usual self so I decided to take her to hospital. They took her blood, checked her over, told me it was a completely different infection and gave her a stronger antibiotic. I told them my concerns again and I was told it’s not cancer. To help set my mind at ease,  they referred Isabella for an ultrasound, which didn’t show anything suspicious. I felt relieved after this and we went home to finish the course of antibiotics. However, Isabella was still no better – she was not sleeping well and had lost  a considerable amount of weight.
At this point, I took her directly to the Children’s Hospital in Belfast. Straight away, they told me it was a tumour but didn’t know if it was benign or malignant and they would need to do a series of tests. Isabella had her first anaesthetic for an MRI CT scan, a biopsy and bloods taken. On the 13th January, 2022, we received the devastating news that it was malignant and that she had stage 4, embryonal rhabdomyosarcoma. At this stage, I told my work that I would be unable to continue with my job. Isabella quickly had surgical procedures to insert her Hickman line and her NG feeding tube. The tube was inserted given the substantial weight loss. I felt in complete disbelief but I felt comforted that plans were put in place and treatment started so quickly.
Chemotherapy commenced and she started to lose her hair, which felt challenging as so much was changing. We had to shield a lot as the chemotherapy lowered Isabella’s immunity making her neutropenic. We didn’t want infections to cause her to delay her next treatment cycle. After three months an MRI showed that the tumour had shrunk and the swelling in her face was visibly smaller. Side-effects were being well-managed and Isabella was putting weight on and seemed brighter. Halfway through chemotherapy, we travelled to the Christie, Manchester for 5 and a half weeks of proton beam radiotherapy. Isabella’s older sister, Olivia Mae travelled to see her at weekend with her nanny. Radiotherapy was a lot harder on Isabella’s body. She needed an anaesthetic each day for each dose of proton radiation. This meant she was nil by mouth until 11:30 AM most days and after two weeks Isabella needed to take a couple of days break. Unfortunately, she spiked a temperature which kept her in hospital for 48 hours. Isabella also started to get sores and feel lethargic. She was also unable to make tears in her left eye and the skin on her cheek started to break down so we used an ointment to help it heal. Her skin sensitivity resulted in her needing to take another three-day break from treatment. In July 2022, when proton was completed, we flew home for two more cycles of chemotherapy. At the end of the intensive treatment an MRI revealed that she was stable. I felt elated and we were able to return to Mums and Tots and see people again.
Isabella started maintenance chemotherapy in August 2022 which involved IV chemo once a week and a daily dose of oral chemo. It was wonderful to see Isabella doing so well and feeling so happy. However, her appetite still remained limited. Towards the end of September, she started being sick when feeds were administered or immediately afterwards. This resulted in an MRI and on October 7th, 2022, my worst fears were confirmed with the news that she had relapsed. This time it had spread to the parameningeal region and around the fluid in the brain and spine. Surgery was not possible and chemotherapy would need to be devised according to how she responded to each cycle. I was devastated. I needed to do everything I could to save her life and so we started treatment a few days later. She seemed to respond well and even started playing and we were discharged.
A few days later, she was sick and went to hospital to be checked over. However, as it was just once we were discharged and Isabella went home and played with her sister. On 25th October 2022, Isabella had her first seizure and we were admitted to hospital. I never thought the next 24 hours would end the way they did. Isabella had multiple seizures and with each seizure it took longer for her to come round. The crash team were outside and nurses were controlling her breathing. I had to sit helpless hoping each time she would be okay. The seizures continued and the oncologist wanted to do an emergency MRI but the radiologist explained how dangerous this would be in her condition and we opted not to go ahead. Isabella passed away on the 26th October 2022 at 5.30pm in my arms whilst I was reading to her.

What was your journey with cancer like?

Our cancer journey, like most others – hard, scary, having your mind think through all the what ifs and fear beyond belief. We had to live day by day to cope.

During Isabella’s treatment, I connected with several parents whose children were rhabdomyosarcoma survivors. Their stories gave me so much hope. I felt pleased that Isabella’s side effects during chemotherapy weren’t as bad as I’d expected. However, in general it was harder than I ever imagined. Time and time again, I held my baby girls hand as she was put to sleep, had bloods taken, had NG tubes reinserted and I felt so powerless that I couldn’t protect her from these procedures. It felt particularly hard given Isabella was so young and she couldn’t communicate to explain how she was feeling. She also didn’t know exactly what was happening and this broke my heart. Caring for a toddler going through chemotherapy and radiation is something no parent should have to experience.

Looking back it was a hard 11 months that brought so much complexity. The only thing I’m thankful for is that due to Isabella’s age she had no idea about what cancer was and the only thing she ever really knew was true love. She still smiled and laughed just the way she did before her diagnosis.

What changes would you like to see for children diagnosed in the future?

I was disappointed that there was a four week lag running back and forth to the GP and receiving various courses of antibiotics that clearly won’t working before the rhabdomyosarcoma diagnosis. Quicker and more efficient diagnosis for children with cancer must be a priority in the future. In addition, I did raise the question of cancer on several occasions and was told I was being overly anxious. I would like to see doctors listening  and not dismissing parents concerns about cancer.

At the point of relapse, the odds of survival dropped considerably although I still held on to hope in order to have the strength to carry on. There need to be more effective treatment options at the point of relapse and less harmful treatments.


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Our Mission

We have already raised £3,500,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.
Raised £3,500,000