Megan passed away after a 5-year battle with ependymoma

It’s more than two and a half years since Megan lost her life to cancer

I am writing this more than two and a half years after Megan, our youngest daughter, finally lost her battle with cancer. She was just 11 years old and had spent five of her young years living with cancer. It’s hard to remember what life was like for our family before cancer struck. As with so many families, life was busy juggling work and family commitments. The photograph albums remind me life was good. Fun. Normal. Simple.

That all changed when Megan was diagnosed with an ependymoma, a rare form of brain cancer, just before her 6th birthday. It took a few weeks and help from a paediatric friend to get a diagnosis after what started out as a sharp pain in Megan’s buttock area that frequently woke her in the night with screaming pain. An MRI confirmed everyone’s worst fears, cancer.

Our little girl endured countless treatments all with a smile on her face

Surgery at the hospital in Nottingham was successful and the 5cm grade two tumour was removed from Megan’s spinal column. A month later Megan was boogie boarding off the Cornish coast.  Life was back on track, with every moment more precious and treasured.

Over her five years of treatment, Megan suffered two recurrences, each one shattering our hopes of a positive outcome.  In that time Megan had to endure three spinal surgeries, traditional chemotherapy, proton beam therapy in Oklahoma, full brain radiotherapy, a trial chemotherapy, delivered daily directly into the spinal fluid via a port in the brain, plus operations to put in and take out the Hickman lines, and a shunt to drain off excess spinal fluid.

It’s an absolute credit to the medical team and support staff at the hospital in Nottingham that of the 300+ days spent in hospital, many of our memories are happy ones.  Megan felt special.  She would often skip into hospital when her energy levels allowed.  The play nurses kept her occupied, the hospital school teachers entertained her,  the professors joked with her and the nurses cared for her with such love and kindness. In short, Megan felt safe in hospital. The same went for our 10 week stay in Oklahoma, Procures’ (proton beam provider) medical team was incredible, taking good care of Megan, and us too.  So many times we were blown away by the kindness of strangers, and friends and family, all wanting to help us in their own special way.  We were also grateful to work for such supportive companies and bosses that stood by us, gave us the time and space we needed, on so many occasions.

Megan’s diagnosis taught us to live in the moment

As soon as Megan’s cancer returned, we knew her chances of survival were dire.  The statistics confirmed that for her type of cancer, and yet we clung on to hope, picking ourselves up after each devastating blow. Living under the cloud of cancer teaches you to live in the moment; children do it naturally. We stopped planning ahead, and started living more spontaneously. We enjoyed such simple pleasures and took nothing for granted. And for much of the five years, because of Megan’s ability to smile her way through her ordeal, we made the best of the situation, creating such precious memories, which we are so very grateful for.  

Megan suffered from terrible side effects of her treatment

Some of the harsh realities of cancer treatment is not always known until you experience it for yourself or through someone else. For Megan, full brain radiotherapy was brutal, especially felt through the loss of her short term memory. Megan’s memory was impressive from a very early age, she used to win every memory game, and you could rely on Megan to know where anything was. To see her lose her short term memory just a few months after radiotherapy was cruel. However, Megan in her usual, understated way, coped with it surprisingly well, but for her young friends, and especially her sister, it was upsetting. There were many other side effects for Megan to deal with including hair loss, lack of motivation, stunted growth, severe tiredness, the list was endless – but the memory loss delivered the biggest blow.

Megan’s terminal diagnosis and last few months

In May 2016 a routine MRI scan, after a reasonable stable period, showed the cancer had spread and was confirmed as terminal. Within a month following the terminal diagnosis, Megan was hospitalised twice following two major seizures. With the support of Macmillan, the Derby community nurses, and our local doctors, we were able to bring Megan home and care for her. She was able to enjoy her 11th birthday at home with her best friend, and family. Megan remained with us for another three months, thankfully comfortable and without pain. She quietly slipped away on 20th September 2016 with my husband and I and her sister by her side. 

Family life as we had known it stopped the day Megan passed away

Other than losing Megan, my greatest pain is the affect cancer has had on her sister. For so many years, the two sisters were best buddies and partners in crime. They loved each other. Megan’s memory loss became so severe that she had a less than one minute retention span, which meant she withdrew from normal daily interactions, lost enthusiasm and motivation and her personality changed considerably. To us, she was still a happy, smiley, loving little girl, but for her sister, she felt rejected by Megan, like she wasn’t ‘needed’ anymore. I am saddened to think of Megan’s sister dealing with losing Megan, long before Megan died.

As parents we did the best we could at the time, but in reality, I was so wrapped up with caring for Megan, I lost sight of giving Megan’s sister what she needed – to feel equally loved and cared for, and as important to us, as Megan was. It’s taken a very long time to repair the feeling of hatred and betrayal Megan’s sister has towards me. When Megan died I felt like I had lost both my girls, not just Megan. Family life as we had known it stopped that day.

To date, Megan’s sister doesn’t talk about Megan at all, including past family moments. Maybe one day she will be ready. But it does mean, for us, we now live our daily lives as a family of three, as if it’s always been like that. Whilst that may mean as a threesome we don’t talk about Megan, Megan is very much part of this family and household. Her bedroom is still as she left it (not as a shrine but a comfort); her shoes and coat are in the boot room; her froggy stickers can be found on many of our windows; photos of the girls are in most rooms; the homemade Christmas decorations come out every year. And so on. Megan will always be part of this family and the subtle reminders around the home are a constant reminder that she is still with us.

Life without Megan

So, two plus years on, how are we ‘coping’ without Megan? Losing Megan feels like a dark hole has entered our lives which will never leave us, nor should it. We will always carry the sadness of losing the thing most precious to a parent. Over time though I think you learn the ability to walk around that hole and become able to enjoy life again; something of course Megan would have wanted us to do. The valuable lesson of ‘living in the moment’ has been a great saviour, and we have both become accustomed to committing to the day or event with the enthusiasm it deserves. Megan continued to smile every day until her body wouldn’t allow her to anymore. We hold on to that thought and take strength from knowing she coped, so we should too. Losing Megan has reminded us once again that life is finite and unpredictable. So my husband decided to take early retirement, valuing time over money, and I have become a part-time student studying horticulture at a local college. I have found solace in gardening, and welcome the preoccupation of learning something new. It’s also led to an opportunity to work on a show garden this year sponsored by Children with Cancer UK. Some of Megan’s friends will be helping to weave an End of Treatment Bell for the show garden and, in so doing, is helping to keep Megan’s memory alive.

End of Treatment Bells are placed into hospitals for children and adults with cancer to ring after their gruelling treatment.

Garden designer Ben Stubbs was inspired by Megan’s story. Ben designed The Children with Cancer UK Strength of Humanity Garden illustrating the impact of childhood cancer on young people and their families. Click here to read the article.