Isabellah was diagnosed with Embryonal Rhabdomyosarcoma, fusion negative, located solely in her nasopharynx, aged 3 years old. She was diagnosed on the 27th August 2021. Isabellah’s treatment was led from RVI Newcastle. She received intensive chemotherapy and proton radiation at the Christie, Manchester. Following this she had six months of maintenance chemotherapy and treatment ended in September 2022. Isabellah had a complete response to treatment.
It all started in August 2021. Isabellah had cold-like symptoms which we attributed to picking up germs in school. It never crossed my mind that it could be cancer. The cold-like symptoms continued and we noticed more unusual symptoms such as snoring and very bad breath. In addition, she started to lose her appetite. This culminated in a night where her snoring and breathing were very odd whilst she slept. I stayed up all night watching her. Isabella’s tummy would go in and out like strangely as if she was desperately trying to get air. At this point, I took her to the Doctor. We were told it was polyps. I still wasn’t happy and took her to our local urgent care where I was again told it was polyps and to go home. I made the decision to take her to A&E in a bigger hospital (The James Cook) in Middlesbrough.At first they thought it was maybe a toy stuck in her nose. However, Isabella’s breathing at night was getting worse and worse and she had very low oxygen levels. Isabellah had an MRI which identified a mass on her nasopharynx.
We were taken by ambulance to Newcastle RVI. I knew something serious was happening but cancer still didn’t cross my mind. We waited in A&E and a Doctor from Paediatric Oncology introduced herself. I asked what oncology was and they explained that it meant cancer. I think my heart stopped there and then. I couldn’t understand. She explained that whenever there was a mass in question, they must be involved. Isabellah was then taken to ENT department. We stayed there for a painful, ten days waiting for results and another biopsy. Isabellah’s oxygen went as low as 64 %!!!On a Friday evening at 8pm, two doctors and a nurse walked in. And my gut was telling me… this is cancer. The doctors explained that Isabellah did have cancer, a cancer known as rhabdomyosarcoma that was curable. They reassured us that they would do everything they could to help her. I screamed, screamed more than I ever have before. I felt completely numb. Isabellah started emergency chemotherapy in September in order to shrink the tumour as it was blocking her airway. She was put in a medically induced come for one week. During this period, she had one cycle of chemotherapy.
When she was woken up a week later, she started coughing and just like a horror movie blood was coming out of her mouth and nose. She then coughed up a chunk of the tumor ! Her voice immediately changed!. For her own safety, she was rushed to emergency theatre to burn any potential parts of the tumour that could compromise her air way. It was the longest hour and a half of my life. Isabellah was then in PICU for another week. When she woke up, Isabellah was extremely high after the sedation drugs. She didn’t sleep for days, she was aggressive and delusional, seeing spiders on the wall. After two weeks of slowly weaning her off these, we finally got some calm after weeks of stress and anxiety. We got to go home and adjusted to life enduring chemotherapy every three weeks. Isabellah was originally categorised as intermediate risk, but because the root of the tumor location was slightly higher, they decided to assign her to high risk as they didn’t want to do surgery to remove it. Therefore, proton beam therapy was chosen as the treatment alongside chemotherapy. Isabellah had proton therapy around the same time as her sixth and seventh rounds of chemo. We went to The Christie, Manchester, it was hard as we had Christmas there and Isabellah couldn’t leave the apartment hotel as Manchester was so busy. We didn’t want anything such as colds to jeopardise her proton treatment. After six weeks of proton therapy, she rang the bell. It was a huge milestone. She had received a higher dose of proton radiation but she only had two mild symptoms – a red nose and crusty red snot.
Isabellah then had the rest of her intense chemotherapy back ar RVI Newcastle. She finished this in February 2022 and the had a break in treatment for seven weeks. She then commenced maintenance chemotherapy. Before maintenance she had a scan and it was confirmed that there was no evidence of disease and just dead residue tissue. Doctors explained that this would be her ” new normal nasopharynx “.We found maintenance difficult, maybe even more difficult than intense chemotherapy. Whilst on maintenance, Isabellah had many colds, and temperatures. This would effect her neutrophils, meaning chemotherapy had to be delayed time and time again. It was hard. After a few weeks Isabellah’s dose was reduced and she tolerated that much better. During her treatment, Isabellah never got a very serious infection (apart from once when a cold caused her to have a very high temp, she was ok after 48 hours). Oddly enough, once maintenance was over she contracted a skin bacteria in her line ! What are the chances !
Isabellah finished her last chemotherapy on September 27th 2022. It was glorious, it was freedom. But we wouldn’t get that full freedom back until her hickman line was removed. Her doctor was incredible and managed to get the hickman surgically removed two weeks later. It was an incredible feeling. We had Isabellah’s end of treatment scan results just before she finished maintenance. The doctor came to us smiling. She told us that the MRI scan shows Isabellah’s ” residue tissue ” was completely GONE !!! There was absolutely nothing there and they had been expecting residue (just dead cells). But it was gone! They said Isabellah had a complete response to treatment and that the proton played a big part as it continued to work for months after it finished.
The journey was difficult, it was life changing, it was like a nightmare only it was actually our reality. I found myself sitting there sometimes looking around thinking…… how is this real life?
Isabellah took it like a true warrior. She NEVER once let it bring her down and she was always smiling. She understood she was sick and she had a “poorly nose “. She understood that the medication she had to have wasn’t nice but it would help her. She embraced her bald head! The only thing Isabellah didn’t like was the fact she was bed bound for two days having intense chemotherapy. Once the tube was taken off, that was it she was up and running around the room and ward.
Isabellah was never violently sick, she would be sick around two hours after chemo hit and go off her food but other than that she was fine. Isabellah wanted her hickman line out but she never once complained. She was amazing and a true inspiration.
For me, I think I took it harder than Isabellah. I think I may have PTSD. I am forever paranoid, full of anxiety and I feel very angry, because I’ll always wonder why, why did this happen? It was very hard but Isabellah was the one who got me through with her strength and attitude, yet she was the one so very sick. I’ve said it before and I’ll say it over and over. How can I feel weak when my child is so strong? She was the strength I needed to get up and carry on. Out of the family I am the worrier. Family where devastated when I had to tell them the news. Financially it was awful. For months you get some financial charity help but it barely covers the cost of food,
In the future, I would like to see Doctors (not Consultants) take childhood cancer more seriously. They seem to think because it is perceived to be rarer than adult cancer, it won’t happen, when in fact it does. In Isabellah’s case, we were told to go home.
I’d like GPs and staff educated more on childhood cancer and symptoms. A Dream of mine would to be that no child has to lose their hair or immune system. I pray one day childhood cancer will be treated 100% effectively and parents get told something along the lines of ” your child has cancer but we WILL cure them” unfortunately it’s not that easy. Cancer is a very complex disease.
I want trials to be more organised and more common sense really (Isabellah’s maintenance trial was all over the place). I’d like Doctors to speak to parents in more detail about maintenance.
I’d also like more people to be aware, I personally find that people aren’t aware or in denial about childhood cancer. They see it as an adults disease when it’s not and childhood cancer is sadly on the rise.
I’d like more funding into childhood cancer MAINLY SOLID tumours in the same way that funds have been invested into research for leukemia.
I also want more support for parents who suffer PTSD from their child having cancer.
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