'I thought I was thirsty – then was told I have cancer so rare it doesn't have a name'

A “tough cookie” teenager who sat her GCSEs despite being in immense pain from a cancer so rare that it doesn’t even have a name is dealing with her illness by “making jokes and laughing”.

Alissa Bowman issues first started last summer when she found she was thirsty all the time. Blood tests ruled out diabetes so medical staff just said to “see if it passes”.

But it worsened when she went into Year 11 at school and found she was tired all the time, had lost her appetite, and just wanted to sleep.

Then her issues intensified when she was on holiday in Thailand last October.

Alissa, from Mirfield in West Yorkshire, said: “I was really pale because my body wasn’t getting the nutrients it needed, it was all being washed out.”

She added: “One day I got a headache and told my dad I was going for a nap. That’s when I got crazy ill. I’ve never felt so bad in my life.”

Alissa was in pain, being sick and her heart rate was “through the roof”.

After calling her mum back in England, medics put her on a rehydration drip. She recovered but her health declined a month later when she was back home.

The 16-year-old added: “I was booked in for some blood tests but didn’t get the results, so I assumed they were fine.

“Then the Wednesday before Christmas I couldn’t get out of bed, so we chased the blood test results and they’d been forgotten about. When they looked at them, I was admitted to hospital the next day.

“I had a full day of fasting for urine and blood tests and was then sent down for a brain scan. That’s when a doctor from a different hospital came over and I got told I had a brain tumour. “From that moment it was go, go, go.”

A scan on Christmas Eve revealed that the tumour was in the middle of Alissa’s head and meant that her pituitary gland wasn’t working. This had brought on diabetes insipidus which is why she experienced a raging thirst.

It was also putting pressure on her optic nerve.

Alissa said: “I was in utter shock. I thought when am I going to wake up from this bad dream. I had to phone my dad to tell him the news because he hadn’t been there. It was pretty crazy. I remember asking the nurse ‘am I going to die?’”

Following successful through her right nostril, to remove as much of the tumour as possible, a tiny sample of tissue was taken to try to identify her tumour type, but this wasn’t clear.

At first, Alissa’s medical team thought she had a type of germ cell tumour, a germinoma, that was slow growing. But the biopsy results ruled that out.

The next best guess was a craniopharyngioma that had erupted in the brain, but that wasn’t definitive either, so the tissue sample was sent off to specialists in Manchester for a second opinion.

Six weeks later, a surgeon rang Alissa’s mum Fran with a diagnosis of Langerhans cell histiocytosis (LCH), and Alissa was transferred from neurology to an oncology team. But that team ruled out LCH.

Now Alissa’s case is being presented to a national panel to try to determine its name and nature and she’s been enrolled in a research project in Newcastle to study it further.

In the meantime, Alissa has completed four out of six rounds of chemotherapy.

Before she started it, she was warned about the side effects by her specialist nurse, Shona, and given the opportunity to freeze her eggs in case treatment affected her future fertility.

She said: My gut instinct was not to have IVF, and I listen to my gut because it’s always right, but I did go ahead with it in the end. I had to have injections every day into my stomach and, at times, in my thigh. Then I had to have a porta Cath fitted for the chemo.

“This was in May so it was GCSE time and I remember being in absolute agony during my English exam but I was determined to do it. The day after that I had a lumbar puncture for the research project, so that was two anaesthetics.”

Alissa sat her rest of her GCSE exams when she could and manged to get the grades she needed.

And now, despite everything she is going through, she is determined to focus on the positives and said: “I’m a tough cookie. I don’t let anything get to me, so I just had this feeling I was going to tolerate chemo really well, and so far I haven’t lost any of my hair so there was no need for me to go to that wig shop in London.”

Alissa is now waiting for the results of her latest MRI scan, hoping the remaining tumour has at least shrunk.

She said: “I went on social media looking for inspiration from how other people were coping with cancer and everything was negative.

“I’m a positive, outgoing person and I was so scared that I was going to end up like that. I decided to try and get myself better – there’s no way in hell I’m going to let this get to me.

“Ever since then I’ve been so stubborn, I don’t like sympathy.

“Yes, you’re going to be in pain and times, but what’s to say you still can’t go to parties with friends and enjoy it. I’ve been to parties when I couldn’t even stand up. You have to be positive. You can 100% get through this.

“My brother and sister have been great, my mum and dad too. Everyone has their way of coping and mine is by making jokes and laughing.

“People see a cancer patient and they might get intimidated because of how they look but they’re still the same person on the inside and people need to remember that.”

Alissa’s mum Fran has been so inspired by her daughter’s attitude that she will be running the London Marathon next year to raise money for the Brain Tumour Charity.

And they will both be attempting the Three Peaks Challenge on October 5, alongside 70 friends and acquaintances including teachers and school staff.

Writing on her fundraising page, Alissa’s mum said: “To hear someone say the words ‘you have a brain tumour’ to your then 15-year-old daughter was the most shocking, unexpected and devastating news.

“Without research, young people like Alissa face too much uncertainty. To be told by national experts that they have never seen a case like yours before is quite unnerving.

“She is one in millions! This is why research is so important.”

You can support Fran and Alissa’s fundraising efforts for The Brain Tumour Charity here: https://www.justgiving.com/page/fran-bowman-1718364803184