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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Orla Tuckwell

At just two years old Orla Tuckwell has endured four operations and gruelling chemotherapy, after being diagnosed with a medulloblastoma. Orla, from Broxbourne in Hertfordshire, was constantly sick for weeks before the brain tumour was discovered. Biopsy results then revealed the mutation of her tumour type is so rare specialists cannot find another case anywhere in Europe. The specialists are unsure how well the NHS standard of care will treat the tumour, so her family - including mum Naomi, dad Adam, and older sisters Ava, eight, and six-year-old Poppy are now crowdfunding to raise money in case they need to access private treatment in the UK or abroad, as well as help with rehabilitation costs for Orla to help manage and overcome the severe side effects of major brain surgery and high dose chemotherapy.

Here is Orla’s story, as told by her mum Naomi…

In August 2022 my husband Adam and I were on a family holiday with our three girls. Orla had been on reflux medication since she was a baby, but we knew she needed weaning off them at some point. Being out of routine on holiday, it happened naturally and she was fine, running around and having fun.

We were back home about a week, when one morning I found a patch of yellow sick in her cot. She seemed a little off that day and was sick again and we thought maybe it was withdrawals from the reflux meds.

“Then she started being a bit off-balance when she was walking, so I took her to the GP.”

I thought maybe she was just weak from the sickness, and not eating well. The doctor sent her for blood tests which came back clear.

I was still concerned so I made an appointment for Orla to see a paediatrician privately, the same person she saw as a baby with her reflux problems. But before that appointment she was being sick more frequently and one evening in early September it was really nasty so we took her to A&E at the Princess Alexandra Hospital in Harlow. They checked her over but couldn’t find anything wrong.

She continued with constant sickness and became really lethargic, and clingy. On 15 September we saw the private paediatrician. Typically, Orla was really well that day, and we thought we looked a bit silly for being so worried, but he arranged for more specific bloods to be taken the following week, thinking she may be gluten intolerant.

“The day we had bloods we ended up taking Orla straight round to A&E again, because she couldn’t stop being sick and she’d lost so much weight.”

We were so worried about her; she was so weak and it was incredibly frustrating that nobody could tell us what was wrong. The hospital ended up admitting her and she was there for 10 days, getting progressively worse. They put a gastric tube into her stomach through her nose to feed her, because she wouldn’t even drink water or take any oral medication.

To our relief she managed to take some milk one night and we thought she was doing better, but then she projectile vomited it all back up. It just kept coming and coming, and it was terrifying to see. The doctors thought she had a gut motility problem and were in talks with the Royal London Hospital to see a specialist gastroenterologist and get her transferred.

We were waiting for a bed to become available there, when on 29 September she had an ECG and an echocardiogram because her heart rate was low and her blood pressure was high. They also did a CT scan, because that combination indicated possible cranial pressure.

Later that afternoon a specialist nurse came to me and asked to speak to me and Adam.

“I looked at her and I just knew something was really wrong. She took my hand and said ‘it’s OK we’re going to get Orla through this’.”

We were taken to an empty ward; two specialist nurses, a paediatric consultant and the doctor who was looking after Orla sat us down. They said ‘we’ve found a mass, and fluid, on Orla’s brain’. I just burst into tears and Adam dropped to his knees in disbelief ; we couldn’t believe this was happening to our baby. It felt like the whole world was crashing down around us. I can’t even remember what else was said because the whole thing felt like an out-of-body experience, other than we needed to get her transferred to Great Ormond Street Hospital (GOSH) immediately.

They said ‘you don’t need to do anything, when you get there everyone will be there for you’. We arrived a few hours later and were taken straight to Koala Ward where the surgeons and anaesthetists were waiting for us.

The first thing they wanted to do was fit Orla with an external ventricular drain (EVD) to remove the excess fluid from her brain and relieve the pressure. I remember so many forms with all these awful risks listed that we needed to sign.

“Adam asked what our other options were, but the surgeon just said there are no options, she had to have this done.”

It was awful; we had no control of anything that was happening to our baby, and we had no way of helping her. We had to just wait and hope. They operated at about 10:30pm and we got a call after 1am to say she was out of theatre and it had gone well. Her tumour was a solid mass, but it also had a cyst attached to it, which they managed to drain too. It went from being 7cm in total to about 4cm.

The next morning, she was really groggy but the following day she woke up and it was literally like having our old Orla back. She was happy; she wanted to eat and play and wasn’t being sick. It was so amazing to see, and for a few days we were all happy.

They performed the tumour resection on 4 October and we were told it would take about 10 hours, so Adam’s brother and a couple of his close friends came to London to meet up with us for lunch to help distract us. Adam and I ended up going shopping in Oxford Street because we only had a few clothes with us, not having expected to be at the hospital for so long. We bought Orla a load of Frozen toys from the Disney Store too.

“It was so strange; it was really busy but to us it felt quiet and eerie. It was like we weren’t fully there; we were just floating through the crowds.”

We went back to GOSH to wait for Orla to come round from the operation, but she was in a lot of pain when she did. It was heartbreaking seeing her in so much distress. She wouldn’t settle and the anaesthetist had to stay with us for hours and give extra pushes on the morphine pump to calm her down.

The surgery was a success, they managed to remove the whole tumour. But there were side effects; she developed Posterior Fossa Syndrome and couldn’t swallow. She kept choking and we had to work with speech therapy to help her eat and drink safely again. She had a bit of paralysis down one side of her face too and couldn’t walk, so she needed physiotherapy. But we accepted all that, hoping we were nearing the end of this gut-wrenching experience.

But then a few days later we were called in because they had the results of her biopsy. Of course were hoping it would be low grade, but we found out it was a high grade medulloblastoma.  

They said it looked typical for this tumour in a child under three, which meant she would be low risk within her group, but they still needed the molecular results back. Those would take up to six weeks, but they didn’t expect to see anything out of the ordinary as it would be incredibly rare. It was as favourable and positive as it could be, but we were still being told our little girl had cancer. I couldn’t really process it and Adam was really upset, he couldn’t talk.

“His mum was also battling ovarian cancer, and having his mum and our daughter deal with cancer at the same time was devastating.”

Nobody should have to deal with that much trauma in one go. We left GOSH on 18 October with a plan to start chemotherapy the following week. On 25 October we all went up on the first day of treatment as a family, Adam took the girls into London and I stayed with Orla. But nobody came to take her and nothing was happening. I asked what was going on and her specialist oncologist came in and said we needed to talk about Orla’s treatment. I knew it wasn’t good news from the look on her face.

She said we needed to change Orla’s treatment plan because the molecular results had already come through. Orla had a MYCN amplification in the tumour but didn’t have the TP53 mutation; normally they are seen together.

“I said what does that even mean? But she didn’t know, so they moved Orla to the high-risk protocol.”

Again, everything came crashing down around us. It felt like every possible bit of bad news we could get, no matter how unlikely, we were getting. It meant Orla couldn’t start treatment and we had to go home. Adam was also really angry that they’d told me all this on my own, and everything was so unclear.

On 28 October we went back to GOSH and Orla started her induction chemotherapy, with five cycles. She did well on her first cycle, and we were able to take her home, but then she spiked a temperature and we ended up back at the Princess Alexandra for over a week. Then she got an infection and mucositis, so she needed a peg to be fitted into her stomach to feed her as it was too painful putting a tube down her throat.

At that point she was offered ovarian cryopreservation, where they would freeze Orla’s tissue for use in the future, because it was likely the chemo would make her infertile. We were told it was quite new for a child this young to be offered this procedure on the NHS. We read up about it and went ahead because we wanted Orla to have the opportunity to make her own choices. So, on 25 November we went to St Mary’s Hospital in London to have the cryopreservation and the peg fitted at the same time.

Later that day we went for the second round of chemotherapy at GOSH but Orla developed a respiratory virus.

“She was so unwell; she wasn’t tolerating any feeds and she did cycles two and three without going home in between.”

They also harvested and froze her stem cells ready for them to be given back to her after high-dose chemotherapy. She didn’t leave hospital until 10 January 2023.

During that time Adam’s mum, Gill, also deteriorated. It was a real challenge, Adam was visiting her every day in a hospice, was seeing Orla at GOSH and trying to see our other two girls was well. We sometimes had to get friends to look after the Ava and Poppy, and they started struggling too, sometimes I didn’t see them for a week.

Gill ended up leaving UCLH at the beginning of November, because there was no more treatment they could give her. She passed away at the beginning of December. It was a truly awful time.

We did everything we could to make Christmas as magical as we could for the girls. We had to spend it at GOSH, but the Young Lives vs Cancer charity arranged accommodation so we could be up there all together as a family.

On 16 January Orla went back in for the fourth chemo cycle, and they had to change one of the drugs because it was damaging her high-frequency hearing, resulting in partial hearing loss.

We were due to do cycle five in February but they skipped it, because of concerns over the MYCN amplification and what it means for her tumour.

“Her consultant was working with other specialists to try to find out if anybody else in the UK or Europe has this tumour with the same amplification, without the TP53 mutation. They couldn’t find a single case.”

Because of that they didn’t know whether they were over or under treating it. Her consultant chose not to expose Orla to any more toxicity from the induction chemotherapy. Instead, the specialists agreed to start her on the high-dose chemotherapy on 20 February, which she has to have in place of radiotherapy.

That will keep her in hospital for about eight weeks. It will wipe out her bone marrow and she’ll need her stem cells back.

After that, it’s basically the end of her treatment. They hope this will cure her, but from our perspective it’s really scary because there are so many unknowns. They will monitor her with MRIs every three months for at least the next 5 years, but a relapse of a medulloblastoma is not good news. If that happens it’s unlikely the NHS will be able to do any more because she’s under three and not eligible for radiotherapy.

We’re constantly anxious about the future. What might happen to Orla if this doesn’t work doesn’t even bear thinking about, so we’re raising money via Go Fund Me.

“Because nobody knows what her amplification and mutation means, we need to be prepared in case we need treatment, possibly abroad, that the NHS doesn’t offer.”

It’s shocking how little is known about this disease, and how under-funded research into brain tumours is. Hopefully we won’t need the money we raise, and it can be donated to help further research for future patients.

Orla’s had to endure four separate operations, awful chemotherapy, side effects, infections, and she has to have a general anaesthetic every time she has an MRI. It has been heartbreaking to see her so ill, and watch her battle over and over again. It feels like we deal with one thing, and then there’s more bad news and more debilitating treatment for Orla to face. It’s far too much for a two-year-old to cope with, she should be playing and learning not living in a hospital; she is such a brave little fighter. All of this has really set back her development. But when we can get her home, even just for a few days, it’s amazing how much it helps her physically and mentally being around the people who love her most in the world.

The last six months have been devastating for our family, but we are also so grateful to the people who have helped get Orla to where she is today. There are no words to describe our gratitude towards the amazing NHS staff at both Princess Alexandra and Great Ormond Street Hospitals who have literally saved Orla’s life and do this day in, day out for lots of other children just like Orla.

Naomi Tuckwell
March 2023

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.

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