In August 2014 while on a family holiday in Portsmouth, we had gone to the Isle of Wight for the day. Keira collapsed in the sea. Her dad pulled her out and I resuscitated her. An ambulance took us to the hospital and we were transferred to Southampton.
An MRI scan showed a tumour on her brain stem called ‘diffuse intrinsic pontine glioma’. While Keira lay in PICU fighting to live, we sat in a Doctor’s office where he told us she was unlikely to live beyond a year. The majority of children don't survive that long as it's a progressive disease with no cure.
She was a month shy of her 6th birthday.
We transferred to QMC hospital in Nottingham because it's the closest children's hospital to where we live. Keira had 30 sessions of high frequency radiation. She astounded her team of doctors when she went from strength-to-strength and did it without steroids as she never needed them. It is unheard of for a child to go through radiation with no steroids.
A few months later, an MRI scan showed Keira's tumour had shrunk by half; something the doctors said was rare. The most they had hoped for was a bit of shrinkage.
Keira continued going strength-to-strength, amazing doctors. We passed the year mark and Keira was strong.
In September 2015, 13 months after diagnosis, I knew there was a problem. We scheduled an MRI scan. Apart from sickness there were no other obvious symptoms. The results of that scan showed significant growth. The doctors were amazed that physically she was still strong with no headaches, eye problems or balance problems.
In October 2015, we were accepted to be treated compassionately for CED in Bristol (now relocated in London- Convention Enhanced Delivery) by Prof Stephen Gill. Keira's tumour would be the largest they had treated, but she was strong.
She underwent 13-hour surgery where a shunt and four micro-catheters were inserted into her brain. SP chemo could go directly into the tumour via a port on the left side of her head by passing the blood brain barrier.
That surgery was hard-going, and Keira was in high dependency for a week.
After she recovered, she was good, and she had two days of chemo infusion. Because of the size the tumour had grown to, she only received half the amount that other children received, but this wasn't without problems. Keira's brain shut down and she developed Posterior Fossa Syndrome which meant she had to re-learn to walk, talk and swallow. But learn them she did. It took hard work and patience, but she got stronger daily. After three months in hospital we were discharged, where on Christmas day 2015 she re-learned to crawl. Two days later she walked unaided for the first time in months. An MRI scan in January 2016 showed her tumour had shrunk by ¾; way more than any other child with half the infusions - BUT we had a new tumour. We had the main tumour under control, but she now needed to act on the secondary cancer.
Keira became the first UK child to receive a second dose of radiation on the same area. We attacked both tumours with 11 sessions of radiation at a slightly lower frequency. She needed a week of steroids from the last session for slight swelling but again the rest was done without.
Keira continued to fight back, amazing all her doctors and healthcare team!
In May 2016, an MRI scan showed Keira was showing NO evidence of disease, making her the first person to go NED with DIPG. She got stronger daily, returned to school, worked hard at physio, and speech & language etc. She had eight-weekly scans because she had beaten every statistic and flabbergasted doctors.
Every scan was clear, until January 2017. We then had a third tumour in her cerebellum. It was back with a vengeance and grew quick. She became ill with flu, which then developed into pneumonia. Whilst fighting pneumonia we started chemotherapy. Keira beat the pneumonia and continued getting stronger. She took two cycles of chemo systematically- TMZ, Thalidomide and Sodium Valproate, which has cancer properties. We didn't expect shrinkage as chemo can't often cross the blood brain barrier, but we hoped for stability. To give us time to find something. Another MRI scan showed significant shrinkage which surprised us all, but then pneumonia returned, and we were in and out of hospital. We almost lost her several times. Every time she got pneumonia it was harder to beat. We started with platelet and haemoglobin problems and low potassium and then the pneumonia created sepsis.
In April 2017 Keira was on six lots IV antibiotics for various infections, potassium transfusion and blood and platelet transfusions; we were fighting a losing battle.
In May 2017, I made the hardest decision any parent should ever make, but one I always said I would make if Keira was tired and had no fight left. I knew my girl better than anyone and knew what she would want, so I withdrew all treatment. I
signed a 'do not resuscitate' form and we took Keira to Andy's Children's Hospice in Grimsby. Keira astounded us all yet again when she defeated pneumonia and sepsis without antibiotics and she improved. She then got another serious infection in her CED port and she became semi-conscious and was put on antibiotics.
A week later she come around and improved again; she came off oxygen, was sitting herself up, she improved daily. Sadly, the infections had wrecked her body and she wasn't quite strong enough for chemotherapy. She developed a cold which flared the pneumonia up and was again put on IV antibiotics. This time we struggled even more. We were in hospital overnight then returned to the hospice with IVs. I refused to have her ventilated because it isn't what she wanted.
Two days later she developed shingles on her head, neck, stomach, back and feet, and was put on morphine for pain. A day later she took her last breath laid in her favourite place. The place where she felt safe- my arms.
She did it all; she beat the statistics and all the treatment gave her a good quality of life. We had lived all of her wants and ticked off everything on her bucket list. Through it all, Keira never moaned or cried. As long as she had mummy by her side she felt safe. She never thought of her disabilities and I never let her. If she wanted to do something, I adapted the activity to make sure she could do it. We did the hospital trips and treatment and balanced it with days out and holidays.
She was the first to help anyone and would give to anyone. She gave money to buskers and after we got third tumour, she saw homeless man in London. We had just been told we had a new tumour and it was quick. Keira was going off her feet fast and started with facial paralysis, but she didn't care; she bought this homeless man a sandwich and drink. He thanked her lots and asked me why she was in a wheelchair. I've always been honest about her tumour and Keira knew about them, so I told him, and he said she was amazing with all that going on to still help him. Her answer was, 'I have my mummy who loves me, I don't need anything else and I like to help'.
She loved without judgement. She was the bravest, most courageous child ever. Her favourite animal is a lion and she fought like a lion. Over the years people have nicknamed her lion cub and me lioness. Most people don't meet their hero, but I gave birth to mine. She's forever eight.
Written by Emma Wrenn, one amazing mummy- in memory of Keira x
My Shining Star gave some financial support to Keira’s family - Emma on her own with three children, one now an angel. We hope that by reading Emma's story, you will be able to appreciate just how hard childhood cancer families struggle, both financially and emotionally. Thank you Emma for being brave enough to share a huge part of your life - and most of all, your incredibly brave daughter with us xxx