Isabellah was 3 years old when in August 2021 she was diagnosed with embryonal rhabdomyosarcoma. Her mum, Amy shares her story...
Before Isabellah’s diagnosis, she was in nursery and absolutely loving it, while we were enjoying doing things with her during the summer. But this all changed when she began to develop symptoms a few weeks prior. She had a bit of a congested nose, which, at first, we thought was hay fever or a cold, or some sort of virus that she’d picked up at nursery.
We certainly never thought it could be what it was. Cancer had never even crossed our mind.
Soon after, we went to Wales for three weeks on holiday. For the first week and a half there were no problems at all, but after that, Isabellah started snoring, which she’d never done before, and she kept waking up asking to come into our bed.
Soon after, she developed bad breath and her beathing became difficult, so my husband Rob and I decided to take her to the GP’s, where she was twice diagnosed with polyps. I wasn’t happy with that, so we went to A&E in our hometown, where we were told the same. I took her home, but by the next day, the snoring was that bad, I had to stay up all night. It was terrifying.
By morning, what we’d later learn was a tumour, had sprouted out of her nose. Knowing it was something more serious than polyps, we took her back to A&E, this time at the James Cook University Hospital in Middlesbrough. At first, they suspected she might have a toy or something similar stuck up her nose, as it smelt like something was in there. However, an MRI showed something more, so they transferred us to Newcastle where the oncology team became involved.
We waited quite a while for Isabellah’s diagnosis. It turned out that the smell was actually an infection around the tumour and the first biopsy mainly took the infection and not enough tumour, so it had to be redone.
After a 10-day wait, we were eventually given the news that our lovely daughter had cancer - embryonal rhabdomyosarcoma. The first thing the doctor said to us is that it’s a curable cancer, but it’s also notoriously aggressive and grows really quickly.
Things went downhill very fast. Firstly, Isabellah developed sleep apnoea, triggered by her tumour. It looked like she had stopped breathing, and it was absolutely terrifying to see. For her own safety, she was then fitted with a tube to help her breathe, because the tumour was through her nose and dangling down the back of her throat, restricting her from doing so. Because of this problem with her breathing, she had to have emergency chemotherapy to shrink the tumour down, which melted off half of the dangling part of the tumour, and caused her to actually cough it out.
They kept her under sedation for two weeks and she was very out of it. It was really difficult seeing her like this, but thankfully, she was back to normal pretty soon after her sedation finished.
With the tumour being where it was in her nasal pharynx, it was in an inoperable position and couldn’t be surgically removed. Instead, Isabellah had laser treatment to burn off the bits that were melting in case she choked, before going on to have nine rounds of intense chemotherapy, followed by six weeks of proton beam therapy in Manchester. Her maintenance chemotherapy is due to finish in September 2022, with an extra six months a possibility.
She’s been so brave throughout her treatment and done amazingly all along, even the doctors can’t believe how well she’s done. When she was first diagnosed, we did her bedroom up as we thought she was going to be bedbound, but she’s just proven everybody wrong. Not once has she let her cancer bring her down.
Isabellah has so much energy and everyone on the ward knows when she’s there! She chases the nurses and throws paper snowballs in the doctor’s office. She’s wild and bubbly, and also very kind and very, very lovely. She’s really happy and we’ve been trying our best to enjoy as many things as we can, though we’ve got to be careful around other children while she still has her Hickman line in.
She missed a lot of nursery after she was diagnosed, but once she finished her intense treatment, she had some time there with her friends which she loved. She can’t wait to get back to school properly. Once her treatment is finished, she’s also looking forward to our pet pug, Benson, coming home. He’s been living with my dad and though she gets to visit, she can’t wait to be reunited with him fully when her wires are out.
We’ve set up this fund as we really want to see more research going on for this particular type of cancer, for the doctors and scientists to know more about it. They know how to treat it, but there’s still more than can be learnt. There’s always more to know.
There must be kinder treatments for children like Isabellah, treatments that mean they don’t have to suffer some of the horrible side effects that they do. That’s what we’re hoping for the future.
I’d also really like to raise awareness, both of childhood cancer in general and the type of cancer Isabellah has. A lot of people think of cancer as an adult disease and don’t understand that children are affected as well.
We’ve called the fund Mighty Isabellah’s Journey because there’s no other word to describe her. She is just so mighty! At first, people asked us how we cope, but we just looked at Isabellah and it was really hard to feel beat by it, when she wasn’t letting it phase her. She’s inspired a lot of people, not just family, not just friends, but people at school and in the community as well.
She’s a real-life hero, and we are just so, so proud of her and how far she's come and how she handles everything.
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