In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Leah was diagnosed with a high-grade medulloblastoma brain tumour at the age of two. She has undergone several operations and a gruelling regime of high-dose chemotherapy and radiotherapy. Now aged 10, Leah has long-term side effects including problems with her speech and mobility, vision and hearing loss, as well as severe learning difficulties and growth issues due to hormonal deficiencies.
Here is Leah’s story as told by her mother Joanne…
Leah had just turned two in the summer of 2013 when little alarm bells started to ring. Our eldest daughter Jasmine was six and, compared to her, Leah was lagging behind when it came to developmental milestones in her speech and mobility. Whereas previously she had been happy to walk she wanted to spend more time in the pushchair and her behaviour changed in other ways.
It was more than just toddler tantrums. Leah became very moody and didn’t really want to play. It became harder to get her into her car seat, to choose her clothes for the day and get her to have a wash. If she didn’t want to put her shoes on, she would throw herself down and start crying, or curl up into a ball on the sofa. We had brought both girls up the same way and yet things were turning out so differently with Leah.
I was working part-time at a travel agent in Paignton and Mum was helping me out with childcare. The timing of our holidays that Summer meant Mum didn’t see the girls for three weeks; she immediately noticed a deterioration in Leah’s condition. Leah was a little girl who should have been developing rapidly but it seemed as if she was going backwards.
When we saw our GP in November, he referred us to a paediatrician to check Leah’s mobility. As we waited for the appointment in mid-December, we became increasingly anxious so went back to the GP. This time we were sent to A&E at Torbay Hospital. A paediatrician was waiting for us and organised scans on Leah’s legs and hips. There was a possibility that the problems were being caused by an infection of some kind or there was an outside chance that it was neurological. I thought maybe Leah was on the autistic spectrum and that would explain her behaviour.
On 4 December, Leah had an MRI scan.
“Less than two hours later we were taken into a little room to be told that Leah had a “mass” in the back of her head. My husband Wayne buried his head in his hands while I collapsed on the floor, crying. Leah was just two-and-a-half and remained under the general anaesthetic needed for the scan as we tried to comprehend the horrific news.”
It is impossible to explain how it felt in what was, at that point, the worst possible moment of my life. It was as if my whole world was over. I didn’t know what to think and I suppose, deep down, we didn’t really want to confront what it might mean.
I was terrified that Leah had cancer and that she wasn’t going to live. We were taken to Frenchay Hospital in Bristol by emergency ambulance. Our driver was Peter Jordan who, like us, lived in Paignton. I didn’t know this at the time but Peter, who was then working for the charity Brain Tumour Research, had lost his own father to a brain tumour just months before.
The journey to Bristol took around two hours and when we arrived at the hospital it was cold, dark and wet. I was scared and felt as if I had been transported into another world. Wayne had followed in the car and it was a relief when the three of us were back together. I was shell-shocked as we were settled in for the night. I counted down the hours by watching Leah as she slept soundly, no doubt exhausted and with the effects of the general anaesthetic still in her system.
“She was critically ill but looked as if she didn’t have a single care while I could feel the weight of the world on my shoulders.”
The following day, 5 December, Leah had another general anaesthetic and a drain was fitted to relieve the pressure caused by a build-up of fluid in her head. Having been told that the “mass” was a brain tumour but without knowing what this really meant or even if it was high-grade or low-grade, we were allowed to leave hospital the following day. Save for a small chunk of missing hair and a little plaster on her head, no-one would have been able to tell the nightmare of the past few days. We continued with our plans to take the girls to see Father Christmas and somehow got through each day on autopilot.
“We were back in hospital on 11 December to prep for surgery the next day. As a parent, the hardest thing you can do is to give over control of your child to someone else but this is what we had to do.”
We tried to occupy ourselves as best we could. Jasmine was with my parents and Wayne and I did some Christmas shopping for the girls. Less than four hours into what we had been told would be a ten-hour procedure, we had a call asking us to go back to the hospital. The neurosurgeon was waiting for us and the news was very bad. The pins used to hold Leah’s head completely still for the delicate neurosurgery had somehow fractured her skull. The procedure was stopped for a CT scan and it was decided the operation would have to be aborted so the damage could be repaired.
A week later, on 19 December, Leah went back into surgery to have the tumour removed. This time, we stayed in the hospital and, this time, the operation lasted for the full ten hours. Afterwards Leah looked so fragile; she was very lethargic and wouldn’t drink anything. Thankfully, we were told that the tumour, which had grown to the size of an adult fist, had been removed. However, a follow-up scan showed that there was residual tumour and a haematoma had developed. Four days before Christmas, Leah was back in surgery to have the remaining tumour and the haematoma removed.
“I was with Leah in recovery when one of the neurosurgeons came in and told me the tumour looked “nasty.” By the time my husband re-joined me, I was broken and on the floor in tears. Leah had cancer.”
The tumour was a high-grade nodular medulloblastoma and chemotherapy would begin within four weeks.
I’m not sure how we coped but I had to be there for Leah and I would climb into the hospital bed and cuddle her. Despite our love and care I didn’t feel as if she was coming back to us after the surgery. It was six days later, on 25 December that she finally opened her eyes and ate some chocolate buttons. She made a tiny sound of enjoyment and worked her way through a whole packet. It was the best Christmas present ever – Leah was awake and eating.
Disappointingly, Leah still wasn’t chatting but she would point at things and make the occasional grunting noise which was very distressing. You could look at her and it was as if she was shut off and not really there. She was suffering from Posterior Fossa Syndrome (PFS) which is a collection of symptoms, ranging in severity, which can occur in children after surgery to remove some brain tumour types. We were told the condition was temporary and we must wait and see if it would be weeks or even months before Leah started to recover properly.
Despite this uncertain prognosis, it felt so good on 14 February to be finally home from hospital. Chemotherapy was already under way and we travelled to Bristol for high-dose treatment with methotrexate five days a week for four weeks while low-dose treatment took place in Exeter. Leah was prone to infection and there were many occasions when she would spike a temperature and be admitted to hospital for two days.
Leah had an MRI scan every eight weeks and the final post-treatment one on 23 October 2014 showed the tumour had gone. We felt amazing, the doctors were pleased and it was the best possible outcome at the time.
“Our joy was short-lived; three months later the tumour was back. We had no indication that anything was wrong when it was picked up in a routine scan. Leah seemed so well yet the tumour was already 1.5cm. It was a deeply shocking reality check and I was hysterical.”
Radiotherapy had not been possible before because of the associated risk to the development of such a young brain but now Leah was three and circumstances had changed.
We were back on a gruelling treatment regime, travelling to Exeter Monday to Friday for four weeks. Our best hope was that radiotherapy would keep the tumour stable and I felt broken when the next scan showed the tumour was growing again and had spread to her spine. I was so distressed that I was angry as I looked over at Leah and told her I thought she was tougher than this and she should sort herself out.
If we were to make progress in this battle, chemotherapy was needed once more to make the tumour more susceptible to radiotherapy. As a result, Leah had severe burns on her neck and at the top of her chest. She was uncomfortable and in pain, moody and lethargic.
“Our little girl was so diminished by the treatment that I pleaded with her consultant not to go ahead with the last two sessions. I felt I could no longer put her through the daily ordeal of a general anaesthetic, of being taken from my arms and laid down on what seemed to me to be a cold slab, and pinned down by a face mask.”
In the end, I felt we had to trust the doctors and Leah did complete the course of 31 sessions over six weeks. For Leah it was normality and she probably assumed everyone did it; it was probably worse for us.
The treatment finished in November 2015 and by January Leah was able to attend pre-school for three days each week. Her limited speech made her shy which in turn meant she had difficulty making friends and was often isolated from the rest of the class. Small things became a big deal and it meant the world to me when a teacher gave me a photo showing Leah holding hands with another pupil.
We awaited her first post-treatment scan with trepidation – I was terrified we would have the rug pulled from under our feet again, but it was cause for celebration when we learned it showed no disease at all. She continued with three-monthly scans and regular appointments for vision and hearing over the following 12 months.
Leah started school in September 2016 already aged five, a year later than most children and unable to run around, preferring to hold a hand when walking. She coped really well, attending full-time, although she did get very tired, and thankfully was given 1-1 support to help her with her special needs.
Concerned about her lack of growth, Leah had an insulin tolerance test (ITT) in June 2017 to assess pituitary function and measure her growth hormones. When the results came back, Leah was immediately put on growth hormone injections which she has been on ever since. It means we have to give her an injection with something like an EpiPen every night. Leah has six monthly reviews to check whether the dosage needs to be increased.
Leah remains very tiny and below the fourth centile in her NHS Red Book for her height versus her age. Her head only comes up to the shoulder of her cousin Thomas, who is just four months older than her.
Hearing tests were conducted every three months to start with. After two years of testing, it became clear that she had mild to profound hearing loss in her right ear and mild to moderate in her left – probably down to a combination of her chemotherapy and radiotherapy treatment. Leah was given hearing aids in May 2019 which made an amazing difference to her life as she could then hear everything.
This year, her hearing aids have been upgraded to blue-tooth which means she can connect them to her iPad so she can hear that clearly at the same time as people’s voices. This modern technology has certainly been of great benefit to Leah.
Recently Leah has undergone a synacthen test to check her cortisol levels – the body’s main stress hormone which helps to control mood, motivation and fear. If her cortisol levels are low, probably due to damage from the radiotherapy, she will have to go on medication to address the issue.
Added to this, the roller-coaster continues with doctors picking up recently that Leah has curvature of the spine, again probably a result of radiotherapy.
Five years post treatment, Leah has just moved from 12-monthly scans to 18-monthly ones, which might seem comforting, but for me it is really anxiety-inducing, especially as I don’t know who to ring anymore if something doesn’t feel quite right with Leah.
It’s really hard to know whether to bother the hospital or go to the GP who probably doesn’t have sufficient expertise to deal with Leah’s situation.
“Leah’s mental age is not the same as her physical age and I doubt it ever will be. I worry about what the future will hold for her – whether she will ever have a job or be able to live independently.”
Her sister, Jasmine, now 14, has lived with Leah’s difficulties since she was just six. She copes really well and is very protective of her, especially when we are out in public.
Over the last 12 months or so, I have worried about what would happen if something happened to her dad Wayne or me – I don’t know whether that’s as a result of the coronavirus pandemic or because Leah is growing up and has now reached double digits (being 10). The world is more accepting of people who are different than when I was her age, but with social media particularly I worry about her vulnerability, whether she might be exploited, how do I keep her safe.
Throughout all the times Leah has been in hospital we have got to know children with all different kinds of cancer; with leukaemia or tumours in other parts of their bodies and now they are back running, riding a bike and getting on with life. Meanwhile, Leah can’t run or ride a bike; she can’t read or even write her own name, or understand when it’s safe to cross a road, except at a pedestrian crossing which has a little green man light.
“As we have sadly learnt through Leah, the effects of brain tumours are so much more complicated and far-reaching than any other cancer and the impact even greater the younger the patient. This led us to set up a Fundraising Group under the umbrella of Brain Tumour Research, known as Leah’s Fairy Fund to help make a difference.”
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