Seizures, out of the blue, when she was just two months old were the first indication that Laurel had a rare, aggressive brain tumour. An MRI scan revealed both a tumour and a large cyst on the left side of her brain. Laurel underwent surgery followed by three months of chemotherapy, which was ineffective. A scan at the end of the treatment showed multiple new tumours had grown. Now 21 months old, Laurel is taking a combination of gene-inhibiting drugs, which have paused any additional growth.
This is Laurel’s story, as told by her mum, Eleanor…
Laurel is a sunshine baby and always makes people smile. She is wonderfully curious, engaging and friendly.
Laurel was two months old when she started having seizures in February 2025.
They began on the day of my husband Matt’s dad’s funeral. I was getting Laurel dressed when suddenly her body froze and her eyes locked on mine. I didn’t know it was a seizure, as I thought of seizures as someone shaking. Laurel went rigid and still, so still it seemed like she had stopped breathing.
I was so worried and thought she might be choking, as I had learned that choking could be silent. I put her over my knee and was patting her back when she started to relax and just fell asleep in my arms.
We instantly called an ambulance, but by the time it arrived, Laurel had woken up and seemed completely fine. The paramedics checked her over and told us to go to the GP or A&E if it happened again.
It did happen again, just an hour later, as we were leaving for the funeral. We had to make a hard decision. Matt went to his dad’s funeral, while my mum and I took Laurel to A&E at our local hospital.
The seizures continued to happen periodically while we were in A&E. The doctors initially thought this could be a Brief Resolved Unexplained Event (BRUE). Thankfully, one of the senior doctors on the ward spent some time with us and asked if Laurel had had a bump on her head.
She hadn’t had any knocks or bumps that we knew of, but we also felt sure it was something more than a BRUE. So, they decided to do a CT scan at our local hospital, which showed a large area of her brain that didn’t look right.
They didn’t give us much more information at the time, but said she needed to have a more detailed scan. We were taken by ambulance to Oxford Children’s Hospital at the John Radcliffe, for an MRI scan.
The scan found a tumour and a large cyst on the left side of her brain, and she would have to have surgery urgently.
They were confident they could remove the cyst, which was putting pressure on her brain and causing the seizures. However, it was the tumour they were very concerned about, as it was against major blood vessels and would be harder to get to.
While Laurel was coming around from the anesthetic after the MRI, the doctors took us into a little side room to tell us the results. We just held each other tightly and tried to take it all in.
It was incredibly scary and surreal. We were already in such a vulnerable place, with Matt’s dad having just passed away, and we were still really deep in grief.
After explaining what they had found, the doctors started talking us through the brain surgery Laurel needed and highlighting the serious dangers of such a procedure. You’re having to sign on that line, but you don’t really have a choice. I so clearly remember them saying, “If anything goes wrong during the surgery, we will call you straight away, so you can be by her side”. We were risking her life in order to save it.
Two days later, Laurel had her surgery, which took just over nine hours. Afterwards, we were told that the surgeons needed to make a tough decision on the table to cut through one of the blood vessels to remove more of the tumour. We were told this caused damage to the speech and language part of her brain.
Of course, we still don’t know what the long-term effects of that damage will be, but one area we have seen her struggle in is learning to eat and drink. She has recently started to eat and drink small amounts after a year of trying to wean her.
The surgeons would not have done this with an older child, but because Laurel was only two months old, they said the brain is so elastic at that stage that other areas of the brain would compensate for this.
When we were reunited with Laurel on the paediatric intensive care ward, I just wanted to hold her.
But she was this tiny, fragile body, hooked up to so much medical equipment.
She was heavily sedated and looked so different, but the nurses helped put her in my arms and she started to come around. After an agonising night apart, she was moved back up onto the ward, where I could stay with her, and day by day she started coming back to herself. The surgery had left her with weakness in her right arm and leg, but apart from this, I was amazed at how resilient she was. She was back to smiling and interacting with everyone so quickly. It was such a huge relief.
When they first looked at the tumour under the microscope, they thought it looked like a benign, slow-growing desmoplastic infantile ganglioglioma (DIG), so we had this initial rush of hope. However, genetic testing changed the picture, and Laurel was diagnosed with an infant-type hemispheric glioma (IHG). Her molecular testing classified the tumour within the paediatric-type diffuse high-grade glioma group, although Laurel’s individual tumour was not assigned a specific grade. The doctors explained that IHG is extremely rare and that there is still limited evidence about how best to treat it, particularly in a baby as young as Laurel.
Laurel was moved onto the oncology ward at Oxford Children’s Hospital and began her chemotherapy straight away. The routine was a week of treatment on the ward, then a week at home, and then back to Oxford for a week of chemotherapy, and so on for three months. It was incredibly intense.
A week isn’t much time to recover between treatments. During the weeks at home, Laurel’s blood count would crash and we would end up at our local hospital having blood transfusions or antibiotics for an infection.
We were in hospital more than we were at home over those three months. It was really, really difficult.
As hard as it was, we did not let this experience rob Laurel of her babyhood. We made the most of every moment, making lovely memories both on the ward and at home. After the first few weeks, we knew the routine and had all the right books and toys, learned how best to manage her side effects and connected with wonderful care teams at each hospital. Because she was immunosuppressed, only Matt, my mum and I could hold or touch Laurel during this time. It was an incredibly tough and bonding experience.
After the first three months of Laurel’s chemotherapy treatment, Matt and I got married.
Laurel finished her first round of treatment and had her MRI scan in the week leading up to our wedding. The doctors said they would have the MRI results by the Friday but asked if we wanted to know before or after the wedding. We decided to wait until after.
We already had the date for the wedding, 31 May 2025, in place before we found out about Laurel’s cancer. We decided to keep it, but reduced the wedding party to just our bridesmaids, groomsmen and immediate family.
It was a beautiful day. Although Laurel obviously wasn’t feeling very well after months of intense chemotherapy, she did brilliantly and she was such a special part of it. It was amazing for our family to come and see her as well as be part of the wedding.
It’s a good thing we waited until after the wedding for the results of Laurel’s MRI scan.
Not only had the original tumour grown, but multiple new tumours had begun to form in different areas of her brain. The doctors said the chemotherapy obviously wasn’t working, so they stopped treatment immediately.
We had been putting Laurel’s tiny body through such harsh treatment for no result.
Of course, you’ve got to try, but we’re still living with the knock-on effect of that. We still haven’t shared the wedding photos because life has never been the same since.
It was such a magical day but having that news just days after the wedding kind of stopped time at that moment. Her consultant explained that radiotherapy was not a realistic option because the tumours were in different areas of her brain and, at such a young age, the treatment could cause devastating damage to her developing brain.
The consultant told us there was a combination of targeted drugs, dabrafenib and trametinib, which he thought might be able to pause the tumour growth. Genetic testing had identified a rare BRAF G469A mutation in Laurel’s tumour. This is different from the more commonly targeted BRAF V600E mutation, which Laurel’s tumour tested negative for, so she did not qualify for dabrafenib and trametinib through the usual NHS treatment pathway. Her consultant therefore applied to the pharmaceutical company for Laurel to receive the drugs through compassionate access.
After an agonising wait, the application was approved. That access changed everything for us. Chemotherapy had failed, further surgery was not possible and radiotherapy was too damaging.
Laurel started taking dabrafenib and trametinib in August 2025. She has an MRI scan every three months and, thankfully, there has been no further growth of the tumours. It is as if everything has been put on pause inside her head.
Because there was so little experience of giving this combination to a baby as young as Laurel, finding a dose her body could tolerate has been a rough ride. She developed severe side effects, including a bleeding bowel and terribly itchy eczema across her skin. Treatment had to be paused to allow her body to recover and, when it was restarted at a lower dose, the difference was remarkable. Her gut has healed and her skin is much more manageable.
The drugs have now held the tumours stable for around a year and are much gentler on her body than chemotherapy, so she is able to enjoy life so much more.
Her development has just rocketed, and she’s doing so well.
Apart from her nasogastric (NG) tube, you wouldn’t know anything was going on with her. Laurel is now 21 months old and she’s in the best health that she’s ever been. It’s so wonderful. She’s not immunosuppressed anymore or suffering from major side effects.
We’re now going to baby groups and thinking about nursery and all these kinds of things, so it feels like we’re in a very different place now.
Laurel is making friends. She’s incredibly social and very confident. I think that comes from having such a positive experience with the staff in the hospital. Even though all these bad things were happening to her, she never seemed to hold a grudge, and she’s not scared of doctors and nurses, which is amazing considering everything.
We know how precious this period of stability is and that things could look very different if the drugs stopped working. So, we treasure every moment and love watching all the wonderful relationships she is building with our friends and family.
We know that targeted treatments can continue to work for years for some patients, while for others they eventually stop working, and nobody can predict what will happen to Laurel. We have been told that she will continue taking the treatment for as long as they keep working.
That uncertainty is exactly why research is so important. There is still so much to learn about this complex disease and about how targeted treatments can be used in children like Laurel.
We need more investment in research because her future, and the futures of children like her, depend on new treatments being developed.
We’ve been told further surgery is not possible because of the diffuse nature of the tumours and where they are. Radiotherapy at such a young age could cause devastating damage to her developing brain, so that is not an option either.
It’s difficult because people who see us regularly say how well Laurel looks, and she does. She is thriving. She isn’t undergoing chemotherapy anymore and, day to day, she is doing brilliantly. But the tumours are still there.
These drugs haven’t cured her; they have stopped them growing. In terms of a cure, we are actually no better off than where we started.
That’s a strange place to be. We have this huge question mark hanging over the future, knowing that at some point things could change. It’s hard.
These drugs are Laurel’s Plan B while she waits for a cure. They bought her time. What we need now is for research to turn that time into a future.
Developments in treatment can’t come soon enough for us and for all the other families in this incredibly vulnerable position.
However, although this is our reality, we can’t live every day thinking about what might happen. We need to be present with our precious little girl, who is growing up so fast, and give her a magical childhood.
While Laurel waits for a cure, we’re making sure she doesn’t have to wait to start enjoying her wonderful life.
Eleanor
August 2026
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Laurel’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
