In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Eleanore Guthrie, from Jarrow, Tyne and Wear, was just four years old when she was diagnosed with a craniopharyngioma. She was constantly being sick and started suffering severe headaches. Her mum, Karen, took her to hospital but feels her concerns were dismissed. On another visit, she was told Eleanore had chronic pneumonia. Eleanore eventually received her devastating diagnosis after having a CT scan in 2021. Since then, she has had seven operations and undergone proton beam therapy. She now has adrenal insufficiency, diabetes insipidus, and an underactive thyroid which means she has no growth hormone function. Karen and her husband Stuart have been fundraising for Brain Tumour Research. On 30 September 2023, the family will lead a Walk of Hope in Newcastle to raise more money and awareness.
Karen tells Eleanore’s story…
Eleanore was the nicest child you could ever meet; everyone loved her, and she was so easy going but now she is the complete opposite.
Throughout 2019, Eleanore was always poorly, and she was vomiting all the time. She was supposed to attend nursery two days a week but between September and December, she only went six times because she would be required to be off for two days after being sick.
She started saying she had a headache all the time; we had to take her to South Tyneside District Hospital or Sunderland Royal Hospital repeatedly because she was often dehydrated. She would eat a bag of crisps and then vomit about 200ml. She would then have a drink and vomit again.
“I felt I was being turned away and no-one was listening.”
In February 2020, during COVID, I took Eleanore to Queen Elizabeth Hospital in Gateshead because she was so unwell. The doctors said she had chronic pneumonia; she was put on antibiotics but she continued to be sick throughout the year.
On 8 January 2021, my brother’s birthday, Eleanore was vomiting but it was really strange. She would open her mouth and thick liquid came up her throat like a snake. She never retched; it was so weird.
“A few days later, she was so dehydrated, I called the GP who said I should take her straight to Accident and Emergency at South Tyneside District Hospital but it was during the pandemic and we were sent home.”
On 19 January, Eleanore was still vomiting, nothing would stay down. We went back to the GP, but she said she had no idea what was wrong, so she sent us to Queen Elizabeth Hospital along with a letter which said the hospital needed to investigate.
“At the hospital, Eleanore vomited in the strange snake-like way she had before. A nurse saw it and was shocked, saying she had never seen anything like it in her life.”
Eleanore stayed in hospital overnight; they thought she may have had appendicitis and ordered an x-ray. While waiting, a junior doctor asked me what the consultant said when he looked behind Eleanore’s eyes. Nobody had looked, so he did. Straight after, he got a consultant to take a look, who said they needed to do a CT scan.
“They said they had found a mass on her brain and she needed to be taken to the Royal Victoria Infirmary (RVI) in Newcastle. I was just screaming, saying ‘don’t let her die, don’t let her die’. It was horrific.”
Two hours later, she was having surgery at the RVI. Everything was happening so quickly, and I didn’t know what was going on. I hadn’t eaten for 36 hours so I wasn’t feeling great. They did a biopsy and needed to insert an external valve drain to remove excess fluid from her brain. Eleanore was then in intensive care for two days.
We were told the tumour was a Craniopharyngioma and they would need to remove as much of it as they could. They said they would not be able to remove all of it because it was on the pituitary gland.
Eleanore went into theatre on 29 January; the operation lasted ten hours.
“We were told the tumour had been the size of a tennis ball but was now the size of a small grape. Unfortunately, the procedure left Eleanore with adrenal insufficiency, diabetes insipidus, and an underactive thyroid so she has no growth hormones. She is now on medication for life.”
After that, my husband Stuart and I were so frightened every time Eleanore became unwell or something didn’t seem right, we kept going to the hospital to get her checked out.
In July 2021, an MRI scan showed the tumour was developing cysts, one of which was attached to her optic nerve. A week later, they fitted an Ommaya reservoir to drain excess fluid.
In September, Eleanore started to get really bad headaches again. Another MRI scan showed there was a further buildup of fluid, which was causing intense pressure in her head, so the Ommaya reservoir was used for the first time; a doctor stuck a needle in to expel liquid from the cyst.
“Things were going OK until 11 December. We were at home and Eleanore suddenly started screaming, saying ‘Mummy and Daddy, where are you?’. She had gone completely blind.”
We rushed her to the RVI where she had her head drained again to reduce the pressure. This resulted in her vision coming back, but she lost all of her peripheral vision which has been really hard for her to adapt to. We agreed to drain her head every two weeks to keep the pressure low, otherwise she would go blind again.
The staff at the hospital suggested Eleanore undergo radiotherapy but Stuart and I felt she was too young for such aggressive treatment. We started researching alternative treatments and came upon a trial based in the United States which claimed to be able to tackle the cysts. We discussed this with our consultant; he asked for information to be sent to him and agreed to have an online meeting with the team in America to discuss it. Our consultant was happy to go ahead with it, and the medical board at the hospital approved the treatment which they allowed to be done on the NHS at the RVI.
The treatment started on 11 March 2022 and continued until 12 August. It had worked to reduce the size of the cysts, but one was still attached to Eleanore’s optic nerve, creating a risk to her vision.
“I had a video call with the brain surgeon who said they needed to intervene and do something about the cysts, otherwise she would be totally blind by Christmas.”
On 14 September, Eleanore had trans nasal surgery where the surgeon cauterised the cysts. After the operation, they were unable to wake her up; they sedated her and intubated her to help her breathe for 11 days, it was horrific.
I asked the medics if they had checked to see if her tonsils were swollen. It transpired they were swollen so they removed them. Six hours later, Eleanore woke up and pulled the tube out of her throat! She had been on so many different drugs, and she was suffering severe withdrawal symptoms which made her aggressive and extremely restless.
Eleanore had check-up meetings every four weeks and was doing really well until 18 December when she said she wasn’t feeling well. She said the pain in her head was too much and she had had enough. The next day was her birthday, but she was not herself at all, so we took her to the RVI on 20 December. A CT scan showed the fluid on her brain was not moving because all of the ventricles were blocked by a new cyst. The following day, she had another operation so another shunt could be fitted. After all of the treatment Eleanore had been through, it was devastating.
On 27 December, Eleanore didn’t feel well, and she slept all day and all night. She had an MRI scan which showed her shunt was blocked so she needed more surgery to fit a new one.
Eleanore had another MRI scan at the RVI on 6 January 2023. It showed the cysts were blocking pathways in her brain and they were too deep to do anything. The consultant again said she would need radiotherapy, which we agreed to go ahead with.
Eleanore started proton beam therapy at The Christie in Manchester on 6 March. She had 28 sessions over seven weeks; she was under general anaesthetic for every session which left her feeling exhausted. She lost her appetite, she lost 5kg, and her hair fell out in the areas where the beams were targeted.
At the end of the treatment, Eleanore had an MRI scan which, unbelievably, showed the cyst had trebled in size, it was humungous. She had surgery to remove the cysts on 28 April. She also needed to have another Ommaya reservoir fitted; they were unable to remove the original one she had because her brain had started to grow around it, so it remains.
Eleanore is so fatigued all the time now. She comes home from school, sits down, and falls asleep. She’s way behind at school; she hates it and cries every day. She doesn’t want to play with any children, she has been through COVID and then been in hospital so much, so she hasn’t had the opportunity to play with other children. We’re hoping to get some play therapy for her to help with this.
“Eleanore has been through so much, but her older sister Alba has also been through this. No-one acknowledges that, no-one asks how she, me or Stuart are. They only ever ask about Eleanore which is a bit heartbreaking. If I think too much about it, I fall apart.”
I can’t believe how much the brain tumour changed Eleanore’s personality. I don’t think people realise that we’ve lost the little girl we knew. This is the hand we’ve been dealt so we want to get on with it and do what we can to help tackle this devastating disease.
“The lack of funding and research into brain tumours is shocking and more needs to be done. The oncologist told me that, without research, Eleanore’s type of tumour will never get a full treatment plan, so we would never know why it happened and how to best treat it. That just set me off.”
We did the National Three Peaks challenge in September 2022. Stuart has done sponsored bike rides and we have held charity nights. So far, we have raised £28,000 for Brain Tumour Research.
On Saturday 30 September, I will be leading a Walk of Hope at The Town Moor in Newcastle. So many people will be there, and I have organised food trucks to be there. I want to make it as big as possible, and I’ll do as much as I can to make it happen.
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