In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
The youngest of four children (big brother Jordan is 16, Lillie, eight, and Sienna, five) Esmé, now three, was diagnosed with a rare high-grade form of ependymoma whilst still just one year old. GPs had previously diagnosed a sickness bug or urinary tract infection. Esmé underwent major surgery and completed a gruelling 19 months of chemotherapy.
Here is Esmé’s story as told by her mother, Wendy…
Esmé was still just one year old when she started regularly being sick between 3am and 6am. Initially the GP thought she had a sickness bug or a urinary tract infection, but I thought it was something more.
One day we were at gymnastics when her arms and legs seemed to just collapse. On another occasion, we were swimming and I suddenly realised Esmé was biting me. By Friday 26 October, Esmé was still being sick regularly and had become very weak after several weeks of vomiting and a couple of calls to 111. I took her back to the GP and he told me to pack a bag and go to A&E.
I was terrified that there might be something wrong with Esmé’s brain and asked the nurses at the Norwich and Norfolk Hospital, but they reassured me that scenario was very rare.
Esmé underwent a whole battery of tests, including bloods and checks for all kinds of allergy. The blood tests came back clear apart from a slightly irregular white blood cell count. Esmé was put on a drip to replace fluids as she had become very weak and dizzy from all the vomiting and could not keep anything down.
She was sent for an ultrasound the next day which came back all clear, but she continued to deteriorate. Esmé was unable to sit up or move other than just one hand and you could see how visibly disorientated she was when a nurse or doctor walked into the room. Her eyes would roll and look in the wrong direction as she tried to focus on where the sound was coming from.
We had a day or so of hope that it might after all just be a bad infection that she was fighting off because she seemed to recover out of nowhere and was sitting up, laughing and eating as if nothing was wrong.
Then, just as suddenly, Esmé became very weak again and dizzy. On Wednesday 31 October 2018, Esmé had a general anaesthetic and was given an MRI scan to rule out anything serious.
Only a few hours later, a specialist nurse and a consultant arrived. Before anyone opened their mouths, we knew it was something terrible. The doctor said: ‘I am sorry to tell you that your daughter has a brain tumour.’
“Our worlds fell apart. My husband Aaron collapsed into me in shock. We were both sobbing uncontrollably, although I did manage to ask how big the tumour was and if they were going to take it out. It was so frightening to hear that our little girl had a large mass at the back of her brain.”
We were told that we would be blue-lighted by ambulance to Addenbrooke’s Hospital in Cambridge as Esmé would need treatment immediately to remove the pressure on her brain. The tumour was growing in the cerebellum and was pressing on the part of the brain responsible for balance and motor-skills, making Esmé experience dizziness, lack of movement and constant sickness. On the other hand, we were told that had it not been growing in this location then there may have been no apparent symptoms until the tumour was even further advanced and, possibly by then, untreatable.
It wasn’t until we found ourselves at Addenbrooke’s and admitted to an oncology ward with lots of sick, bald children that I realised Esmé’s tumour was cancerous. She was given steroids to relieve some of the pressure on her brain and was put back on fluids. A number of tests were carried out throughout the night. We had endured weeks of sleepless nights, but this time was different. We had just had the worst possible news and knew nothing of what lay ahead for our baby girl, not yet even two years old.
As the week progressed, Esmé rallied. The steroids successfully reduced the pressure and gradually she was able to sit up and move around a bit, although not able to walk on her own just yet. She fell in love with a push-along pink Mini Cooper that was in the toy room on the ward and was chauffeured around in it throughout the day, even riding in it with her Mum and ‘Dandy’ (as she calls Daddy) pushing her to her second MRI scan.
This MRI scan was to check that the tumour hadn’t spread down her spine through the cerebral fluid which protects the brain and the spine. It was such a relief to learn that the results of the spinal MRI came back clear. It was the first bit of good news we’d had in quite a while, bringing an all too brief moment of elation and positivity.
Having a large family meant that there were lots of aunties, uncles, nannies and friends to visit Esmé, as well as to help out with our older children.
We then met with the two neurosurgeons tasked with saving Esmé’s life. They examined the MRI scans and explained the plan of action. Esmé was to undergo brain surgery on Tuesday 6 November to extract all or as much of the tumour as possible, while erring on the side of caution so as not to cause damage to the surrounding healthy brain tissue.
“Ahead of the big day, Aaron and I experienced mixed feelings of abject terror and massive anxiety, as well as a desire to get the surgery out of the way and remove the horrifying thing in Esmé’s head.”
Esmé was taken to surgery in her favourite little car. Aaron and I accompanied her to the operating theatre and remained with her until she had been put to sleep.
We had been warned that the craniotomy would probably take in the region of six hours, but that length of time came and went. We had a big group of family members in the hospital trying to distract us from what was going on a few floors above us in the main operating theatre.
By seven hours in, the piles of empty coffee cups had mounted up. Our nerves were in shreds as negative thoughts crept in. I was desperate to hear news and so worried that something had gone wrong.
It was almost eight hours before one of the two principal neurosurgeons working on Esmé came down to say they were just finishing up and it had gone as well as it could. In fact, they had gone on longer than expected, managing to extract everything they could see with the naked eye, having not been expecting that this would be possible the first-time around.
It was the news we had hardly dared to hope for. We broke down with tears of joy, knowing that Esmé had not only survived the operation, but she had done so well out of it.
Esmé was put in intensive care following the surgery, but amazingly went from strength to strength quite rapidly. Her vital signs were all stable and she responded well to her medications. At times she was semi-awake with her eyes intermittently open, although often falling back asleep. It all seemed to be a good sign.
In less than 24 hours, Esmé was back on the ward. Four days after major brain surgery, she was walking up and down the ward, whilst holding Daddy’s hand. Everyone on the ward, and especially Aaron and me, were absolutely elated.
The results of the MRI scan confirmed what the surgeons had thought: they had succeeded in removing every bit of visible tumour.
Esmé was eating well, talking, smiling and walking about. The physios came round each morning and were pleased with how Esmé was getting on and surprised that there had been no adverse effects from the surgery in terms of movement or balance. The speech therapist said the same and the specialist nurses confirmed she was doing astonishingly well, considering the physical trauma she had been through.
The next major milestone was the tumour analysis results coming back from the lab. These were delivered on 12 November at a meeting between Aaron and me with a neuro-consultant and one of the neurosurgeons who had operated on Esmé. We went into the meeting with high hopes because of the recent MRI results that the next steps would either be no further treatment, although with scans every three months, or a few sessions of chemotherapy to flush out any possible remaining cells.
“The news that the tumour was actually a rare form of a high-grade ependymoma sent us reeling. We were told that if Esmé had been an adult they would have recommended radiotherapy, but as she was so young, radiotherapy would have major adverse effects on her brain and subsequent development.”
Instead, they wanted to try her on 56 treatment weeks of intense chemotherapy which had a 40% chance of success.
The course of chemotherapy was to be delivered via five different drug types, with a different one every two weeks on an eight-week cycle. We were warned that Esmé would probably have terrible side-effects and they would need to monitor her white blood cell count and check for damage to her bone marrow.
It was a worst-nightmare situation, considering just two weeks earlier we still thought Esmé had an infection or a virus. We had to face the fact that, despite being put through the trauma of surgery, Esmé was facing a long and very rough road ahead and would be poorly with the chemo and in and out of hospital, probably every week. She would also lose her hair and have a compromised immune system with a high risk of illness or infection.
Esmé was given a lumbar puncture not long after the meeting to extract some fluid and check if any tumour cells had travelled down her spine that couldn’t be seen on the MRI scan.
Before she could start chemo, Esmé had a lumbar drain procedure as her spinal fluid was still building up where the tumour had previously been. She then got an infection in her spinal fluid which delayed the procedure to have a Hickman line inserted into one of the main arteries that goes into her heart. This was to deliver her chemotherapy drugs easily and safely without the need for a new cannula every few weeks. As with the MRI scans, for both the lumbar procedures and the Hickman line, Esmé had to be put to sleep.
The Covid-19 pandemic meant that we had to take the children out of school well before they closed so that our whole family could shield Esmé.
Esmé finally finished her chemotherapy treatment on 2 May after 19 gruelling months, but we weren’t able to celebrate by ringing the bell because visitors aren’t allowed on the ward at the moment. Sadly,that will have to wait.
We did have a break in December 2019 so that the family could get away for a few days to celebrate Esmé’s third birthday, thanks to some help from a children’s cancer fund. The break had to be extended over Christmas as Esmé developed an infection in her Hickman line. During the break Esmé, however, still had to go back into hospital on a daily basis for antibiotics and blood checks.
Esmé lost all her hair during chemo, but she still looks beautiful.
We haven’t been able to go back to hospital to get the Hickman line removed because of the Covid-19 restrictions which means that Esmé can’t have a bath or go in the paddling pool and we aren’t able to take Esmé for an MRI scan as the hospital is only going ahead with emergency scans and those for patients not needing a general anaesthetic.
“We are desperate to get back to normality. It will be incredible to be able to take Esmé out to do all the things she has been missing out on and for us all to be together doing fun things as a family. Sadly, however it looks like the coronavirus is going to delay this for a while yet.”
The schools are starting to go back, but our children will need to continue to shield. Although Esmé has completed her chemo, we have been told that her immunity will be compromised for at least six months, so that means the kids will all be home until November.
We have remained upbeat and positive and are hopeful the treatment will work first-time for Esmé. However, it is frightening the number of families we have got to know in hospital who have been affected by brain tumours and particularly who have tragically gone on to lose a precious child. It is heart-breaking and traumatising and something we never thought we would witness in this way. Esmé often asks for a particular friend of hers who passed away recently, which is so hard. We so hope we won’t have to experience such pain in our family and pray that the ringing of the bell really will be the end of treatment for Esmé. We know that Esmé will have scans for many years to come to check for regrowth of the tumour.
The effect on our family finances has been huge. Aaron is a self-employed painter and decorator, but had to give up working to be there for Esmé and me, as well as the other children. And to drive us the hour and 10 minutes to hospital appointments. He is just starting to work again now, but only on outdoor projects because of Covid-19 and protecting Esmé.
We have been overwhelmed by support from our local community and the thousands of pounds raised through a GoFundMe page to help us through this really difficult time. Without the generosity of friends, family and complete strangers I don’t know how we would have been able to pay the bills. Sadly, however, the fundraising has slowed up and we are now finding we are struggling again massively and having to use credit cards for everyday living expenses and extra travel costs. Aaron loves being with Esmé, but can’t wait to get back to providing for us.
It is shocking and very upsetting that there is so little funding going into research for brain tumours and that it remains the biggest cancer killer of children. It is a scary journey for Esmé and all the other children we have met going through this. I just want my beautiful girl well again and for us to enjoy being a family together out and about without having to panic she might pick up a virus and spike a temperature.
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