It’s been a while since I last sat down to write about Emily and her fight against cancer. In fact, it’s almost been a year. Looking back at the previous posts, it’s is hard to believe that we have actually gone through all of it and come out the other side.
The past 17 months have been a rollercoaster ride of emotions. We have gone from being ecstatic at Emily’s arrival to being scared out of our wits after hearing the words ‘it’s cancer’. I never, ever thought that the unusual lump she had on her chest wall would be cancer. It never crossed my mind. But it was, and in that split second, our life changed forever.
Following surgery in September 2016, Emily completed her two final intensive chemotherapy cycles in November and was officially declared in remission, with a clear MRI scan in December. The relief that the surgery and chemo had been successful and done their job was immense. The tumour was gone, the cancer cells were dead and there was light at the end of the tunnel. However, the team at GOSH were cautious and asked us if we would consider Emily receiving six months of maintenance chemo. This was to give Emily the best possible chance of staying in remission. Being so young and growing so quickly can mean that cancer cells can reappear. Matt and I agonised over whether to put Emily through even more treatment, but in the end, we decided that we should give her the best possible chance we can.
So, in January 2017, after a break of almost 8 weeks, Emily started maintenance – a four week cycle consisting of two visits to Safari Ward (day care oncology unit at GOSH) on two Mondays out of four to have one drug administered by the nurses and a daily dose of another drug, given by us at home, along with anti-sickness meds and prophylactic antibiotics. It took a while to get into a rhythm, but it soon became the norm. In between visits to GOSH, the community nurses would still visit and take Emily’s bloods on a twice weekly basis. And if she spiked a temperature, which she did at least two or three times during the 24 weeks of treatment, we would have to visit Kings College Hospital in Denmark Hill, to make sure she didn’t have a serious infection. Even though maintenance is a lot less harsh on the body, the immune system is still very vulnerable and we had to take all the same precautions we had done previously.
Luckily, Emily tolerated the maintenance well and managed to complete most cycles with very few episodes of neutropenia (low neutrophils in the blood leading to an increased risk of serious infection). Her hair and eyelashes started to grow back, she started to crawl then walk and learnt the word ‘no’! She also turned one in March, as well as celebrating her christening with family and friends. We even managed a trip home to my Mum’s in Ireland, so Emily could meet the aunts, uncles, cousins and friends who had supported us from across the Irish sea. Major milestones that I never thought she would achieve.
Whilst all this was happening, I also decided that I needed to return to work – both for financial and emotional reasons. My company had been incredibly supportive during the past year, allowing me extra maternity leave and keeping in touch with Emily’s progress. But, it was time to head back. So, after searching high and low for childcare options for Emily – we eventually found Jess (our nanny) who is amazing – and I returned to work part time in May 2017. Life had started to resemble some form of normal.
Finally in July this year, Emily finished her maintenance chemotherapy and an MRI scan a couple of weeks later confirmed she was still remission – yay ! She had final blood tests, a chest x-ray and her central line was removed. After 16 months of being prodded and poked, spiked temperatures and neutropenia, Emily is finally free of the harsh chemotherapy regime and her body has slowly started to recover. Of course, this doesn’t mean that it’s over. She will continue to be monitored closely by GOSH with chest x-rays and MRI scans every three months for the next two years, so if our unwanted visitor decides to visit again, it will be caught again! There are also likely to be late effects from the chemo that we don’t know about yet. And I am certain that every time she falls ill, we will be thinking – oh no it’s back.
But, we remain positive and have had a fantastic summer. We went on a long overdue holiday to Tenerife with friends. We visited family and friends outside of London. We enjoyed picnics in the park. We had an ‘end of treatment’ party. We did normal things together as a family. Our summer was just like everyone else’s – at last.
And as we continue to watch Emily grow and become the feisty and fierce diva we know she is, I am grateful for having her in my life. Her happiness and energy is contagious. She is my brave, little warrior and always will be.
September 2017 is Childhood Cancer Awareness Month #CCAM.
Everyone at MGF-HQ wishes Emily and her family all the best for a cancer free life.
Read her earlier journeys here:
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