How I found out my child had a brain tumour

What does a brain tumour headache feel like?

In early 2011, Olivia’s brain tumour symptoms started with headaches and vomiting about once a month. The doctor diagnosed this as migraines. Sometimes these were followed by a few days of a feeling of pressure in her head and being unsteady and tripping up, but this always resolved within a few days.

We took Olivia to the opticians and she was found to have normal vision in both eyes, and this carried on until July 2011. Now Olivia’s eyelids were puffy and her eyes were only half open – some days were better than others. The doctor diagnosed this as hay fever.

The headaches continued until August 2011 when Olivia had a severe headache with vomiting, which lasted five days. Olivia was now unable to lie flat and was either vomiting or nauseous most mornings. Olivia kept getting a sensation – which we later found out was pressure in her head – which she described as ‘feeling like she was going to die’.

We called NHS Direct and they diagnosed her with a sickness bug. It was now early September and Olivia was not getting any better. We took another trip to the doctors and listed all of Olivia’s symptoms: headaches once a month, daily nausea and vomiting with an inability to lie flat, excessive thirst, going to the toilet a lot, weight loss, droopy eyelids, and a feeling like she was going to die. This time acid reflux was diagnosed and treatment was given for that.

Over the next few weeks, Olivia got worse. There were lots of trips and phone calls to the GP and a referral was made to a paediatric gastroenterologist. The appointment was for a few months’ time.

Radiotherapy and chemotherapy

Olivia had a mask made for her six weeks of weekday radiotherapy. Alongside this Olivia was to have daily oral chemotherapy then a further 12 months of chemotherapy on a 28 day cycle – five days on and 22 off.

The radiotherapy went well with Olivia only having minimal side effects of hair loss, and some skin irritation and nausea.

Two days into the radiotherapy it was decided to insert a Ventricular Catheter (VP) shunt. This made a huge difference to Olivia’s vision which we hadn’t realised was so bad. She came round from the anaesthetic and her first words were ‘wow, I can see’.

The radiotherapy continued and Olivia managed afternoons in school with her friends. She never once complained despite the mask getting so tight (due to the weight gain caused by steroids) that it left dents in her skin.

Break in treatment

Olivia had a break in treatment following the radiotherapy and restarted oral chemotherapy, in the form of temozolamide, at the beginning of January 2012. She coped with this amazingly well once her sickness was brought under control. Again, she spent most days at school. Three-monthly scans showed no change in the lesion.

Things continued much the same until the end of May 2012. Then we noticed Olivia having episodes where she would wander off, grasping with her hands and being unresponsive, followed by a strange taste in her mouth.

This was diagnosed as focal epilepsy and numerous medications were tried to control it. Unfortunately this failed to bring the seizures under control, with Olivia having up to eight seizures per day.

Right temporal lobectomy

In October 2012 it was decided to list Olivia for a right temporal lobectomy. In order to control the seizures they would remove the part of Olivia’s brain causing them. This was performed on 20 November 2012. Olivia again faced this with the strength and determination she had shown throughout her treatment. She skipped into the anaesthetist’s room knowing she was going to be in theatre for at least eight hours.

We kept ourselves busy with our two other children and ten hours later Olivia came out of theatre connected to various monitors and was catheterised. Again, in true form, within two days Olivia was disconnected from all the monitors and walking around the ward.

Just two days later, only four days after surgery, Olivia was discharged. Unfortunately two days after that she was re-admitted as an emergency. She was confused, lethargic, having hallucinations and her right eye was deviating. She was treated with ten days of IV antibiotics for suspected meningitis. This was her longest hospital stay.

Cure was no longer the aim of treatment

In July 2013 it was decided for Olivia to have a lumbar puncture. Test results unfortunately showed malignant cells. After discussions with Olivia’s consultant it was clear that despite MRIs being stable, something else was going on and cure was no longer the aim of treatment.

We decided on a further treatment plan to try and extend Olivia’s life. The way things were progressing Olivia’s consultant felt that without treatment it was estimated she would have around 4-6 months to live – with treatment lasting approximately 12 months.

Olivia’s school funded a trip for us to Disneyland Paris. We had an amazing time and Olivia’s wish to take her younger sister to Disney was granted.

The day after we came back home, on 23 July 2013, Olivia was admitted to Alder Hey for insertion of an Ommaya Reservoir. This was for the new treatment protocol so that the chemo would go straight into her Cerebrospinal fluid (CSF).

The morning of the procedure she wasn’t quite herself. She never seemed to fully recover from the anaesthetic and had become incontinent. Over the next couple of days she was back on her feet, but still incontinent, and not herself at all. Four days later she became unresponsive.

Our last few days with Olivia

At this point we were told there was nothing more they could do. We were advised to sign a Do Not Resuscitate order (DNR), which we did. We were transferred back to our local hospital, to Olivia’s favourite room, for end-of-life care.

Olivia amazed us all, entering the ambulance unresponsive and gradually getting more alert as we got closer to home. By the time we arrived at our local hospital she was trying to sit up. The next day she was wandering around the ward after her beads of courage!

We decided at this point to take Olivia home and spent the best weekend together with Olivia and her brother and sister, laughing and joking. She gave us so many lovely memories.

Over the next few days Olivia began to sleep more, until the Thursday when she woke for the last time. I got the chance to tell her how much I loved her and how brave she was. She used all her strength to reply that she loved me too.

Olivia slept peacefully after that until late Saturday night, 10 August 2013, when she slipped away peacefully surrounded by family, her favourite nurse Holly, and our priest. This was less than four weeks from the prognosis of 4-6 months we’d been given if she went without treatment.

She was an amazing, inspirational young girl who never complained as long as she could be at school with her friends, the teaching staff and the teacher with whom she formed a very close bond. She showed us the true meaning of courage and touched the lives of all that met her or even just knew of her.