In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Marissa from Sutton Coldfield in Birmingham was just three and a half years old when she collapsed out-of-the-blue which led to the ‘miracle’ discovery of a rare and inoperable optic glioma tumour. Doctors thought Marissa may be suffering from encephalitis after a bout of chicken pox, however further tests revealed she had neurofibromatosis type 1 (nf1) a genetic mutation which can cause low-grade tumours in the body. After a year of chemotherapy to save her eyesight due to the placement of the tumour, six-year-old Marissa, who started school in September 2020, lives with complications due to the tumour and nf1 and is monitored with regular scans. Her grandmother, Shirley is sharing Marissa’s story to help other families who may be navigating their own diagnosis.
Here is Marissa’s story, as told by her grandmother, Shirley…
Marissa is my eldest granddaughter and the way I’ve dealt with her diagnosis is through the thought process of ‘what I don’t know can’t hurt me’. Rather than focusing on what might happen, I’ve dealt with the facts and information – on a need-to-know basis without looking up information on the internet.
Marissa was diagnosed when she was three and a half, and I feel like it was a miracle she was diagnosed at all.
In April 2019, she’d had chicken pox and was back at nursery when my daughter - Marissa’s mother, Carly called me to say she was on her way to pick up Marissa as the nursery staff said she wasn’t very well and she had vomited – we thought it was probably still the chicken pox virus working its way out of her system.
The next call I had was from Carly saying ‘she’s gone all floppy, she’s not moving’.
I was in London at the time and as I rushed back to be with my daughter and granddaughter, Carly took Marissa to the local primary care unit which was round the corner from nursery.
Marissa wasn’t moving, she was unconscious and limp as if she were a ragdoll.
She was blue-lighted to Good Hope Hospital in Sutton Coldfield where she had a CT scan which showed something on her brain. There was no space in intensive care at Birmingham Children’s Hospital so she ended up at Royal Stoke University Hospital.
Doctors were looking out for encephalitis which is a swelling of the brain that affects 1 in 1,000 people after chicken pox and she was placed in isolation whilst they carried out these tests – unsure if what they were dealing with was contagious.
The consultant at Royal Stoke checked her over and noticed café au lait marks on Marissa’s body. They look like birth marks and are flat pigmented spots on the skin – named as such because they look like milky coffee stains. She’d had them since birth with a mixture of large and smaller marks and had the start of freckling near her arm pits and groin – we hadn’t really thought anything of them before.
The consultant ordered more tests including an MRI scan and, in the meantime, Marissa came round and was well enough to go home, pending the results.
“There was still no explanation as to why she had collapsed as the team of healthcare professionals couldn’t find a medical reason for this. In light of what happened next, we felt and still feel like Marissa collapsing was a saving grace to diagnosing her brain tumour.”
In early June, more than a month after Marissa was sent home from nursery, Carly received a phone call from the team at Sutton Coldfield with the devastating news that Marissa had a low-grade but rare brain tumour called an optic pathway glioma caused by the nf1. We were told that half of the cases of nf1 are genetic and others are spontaneous and Marissa’s was the latter. Due to where it was growing on her brain, the tumour was inoperable.
We couldn’t believe it.
In July, Marissa started chemotherapy via a port in her chest. Every week for 70 weeks she was due a dose of chemo and after the first few weeks of treatment she wasn’t very well. We were told that she could lose her hair, she may vomit and have a high temperature – there were more side effects to this treatment. Marissa was in and out of hospital when her temperature was above a certain number which happened regularly.
It was horrible to see her so uncomfortable but we knew it was in her best interest.
After her third week of treatment someone ticked the box to check her liver by accident - on her treatment plan they don’t usually check the liver. The results showed Marissa’s liver was functioning 19 times higher than normal level and it was starting to fail, she was having an allergic reaction to the chemo.
The healthcare team were baffled and sought advice from doctors in the USA and Marissa was eventually placed on treatment most-commonly used in Australia. This was a higher dose on a monthly cycle, this time only for a year.
Advice from the medical team who looked after us was to be truthful with Marissa from the beginning and so we were. And although she was too young to understand, we felt like that was important to gain her trust and it helped us, as a family, to digest what was happening.
Although the tumour was diagnosed as low-grade, benign is not fine. The placement of the tumour meant it was inoperable and the treatment she was having was to try and save her eyesight.
We were fortunate in a way, that Marissa’s treatment continued when COVID-19 restrictions saw lots of adult patients’ treatment halted.
In July 2020, after 12 months of chemotherapy, the charity End Of Treatment Bells sent a bell to Marissa’s house to signify the end of her treatment. We celebrated with neighbours in the street who gathered as Marissa rang the bell on her driveway with everyone applauding.
Now, Marissa doesn’t remember much of what she went through, the hospital trips, the treatment, the isolation. As a result of her diagnosis, she is behind other school children her age and has just been diagnosed with ADHD something very common in people with nf1. She’s a bright and bubbly young girl outside of school and to have a conversation with her you wouldn’t know anything is wrong or different.
She’s now six and in year one at primary school and has regular scans and eye tests to monitor for any changes.
Marissa is the reason why I took part in the Jog 26.2 Miles in May Challenge for Brain Tumour Research. When I saw the event advertised, I immediately thought that it was something I could do, something accessible which could make a difference.
I don’t think I’m special for taking part in the challenge but I think together with other fundraisers, when you put us together we can achieve something wonderful.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure