Isabellah's rhabdomyosarcoma story

She started snoring

Isabellah was three years old when she was diagnosed with Embryonal Rhabdomyosarcoma fusion negative in her nasopharynx. Isabellah’s symptoms began as cold-like symptoms, and we didn’t think too much of it as we thought she had simply caught a cold from school or had hay fever. After a week, she began snoring which was unusual as Isabellah had never snored before.

Getting a diagnosis

I took her to the doctors, where we saw a nurse who said it was polyps. Unhappy, I took her to A&E and they said the same and sent us home. That night after being told to go home as it’s polyps, I became concerned, I watched Isabellah all night long as her snoring became very bad and her ribs were going in and out like it was difficult to get air in. We took her to A&E in a different town as we were not happy with being told to go home. Little did we know this would be the beginning of a seven week stay in hospital. Isabellah had an MRI and they found something in her nasal passage.

Medically induced coma

The day after, we were told we were being transferred and my heart sank as I thought it must be more serious if we are being sent to a bigger hospital. Waiting in A&E, a doctor walked in, and she said she was from the oncology department. I remember asking ‘what is oncology’? She said it was cancer and I felt a thump in my heart. I kept saying to my partner, ‘no way there must be a mistake, maybe they are just checking, it won’t be cancer’. After ten days of waiting we got the devastating news that Isabellah in fact had cancer. The doctor said it was a curable cancer and that they will do everything to treat her. Isabellah’s condition got very bad while we were waiting for her diagnosis, and she needed to be put into a medically induced coma as the tumour was blocking her nasal passage and throat. Her oxygen at one point went as low as 64%.

Emergency surgery

The plan was to keep her sedated so the chemotherapy could shrink the tumor while in the PICU. After one week Isabellah was woken, but like something out of a horror movie she actually coughed up half the tumor. She had to go to the emergency theatre to have any potential tumor bits burnt in case they fell into her throat. This was the longest hour and a half of my life. She stayed in paediatric intensive care unit (PICU) an extra week and was then woken up. This was another hard part as she was very high on sedation drugs. She would see things like spiders, would sometimes be violent, awake all night, she didn’t eat, or drink and nappy changes were very difficult. After two weeks she was off the drugs and we finally got to go home.

Intense treatment

Isabellah had nine intense chemotherapies, six weeks of proton beam therapy and six months maintenance. Isabellah was amazing during her proton therapy, she had to have aesthetic everyday apart from weekends and she only got two mild side effects. She had a red nose and red crusty mucus. She was a warrior and although we were in and out of hospital a lot, she never had anything serious happen to her during her treatment, thank goodness.

Complete response

We had the end of treatment result in March 2022 and the news that Isabellah’s tumour was dead, but she would have some kind of dead tumour tissue there which would be her ‘new normal’. Then in September we got the news that the dead tumour tissue was completely gone. Isabellah had a complete response. Doctors said this was due to radiotherapy working months after as Isabellah had the higher dose. I do worry sometimes about future side effects, but the results we got were better than expected.

Mighty Isabellah

Isabellah has shown beyond strength, she is an actual superhero. She was the strength we all needed to get through, yet it was her fighting this battle. How could we feel weak when she showed incredible strength? We are so proud of her, she is back in school now and enjoying her life. She still has routine scans every three months which will increase in time to four months then every six months. We call her mighty Isabellah.

Amy, Isabellah’s mum, March 2023

Update: February 2024

In December 2023, we have had another clear scan! The perfect Chrismas gift. Isabellah is due another one on March. Here is a photo of Isabellah at Christmas, she was very excited to see the gifts from Santa.

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