‘When Emily was born, she was healthy and pink, just like a newborn should be. She was checked by the midwives and doctors for the normal newborn checks and all seemed well. She wasn’t feeding great, but I put that down to her being less than a day old ! However, when Matt was dressing her the day after her birth, he noticed that she had a hard lump sticking out of the left hand side of her chest.’
When Emily was just four weeks old she was diagnosed with a very rare form of cancer.
Read Emily’s Journey Part One here: https://mummysginfund.co.uk/baby-emilys-journey-cancer-part-one/
Blog 2 – July 2016
Sat here at home watching my almost five month old sleep peacefully in her baby chair, she looks like any normal five month old. But, I am jolted back to reality every time I pick her up and feel the Hickman central line which she has permanently in her chest that delivers life saving chemo drugs and blood products to her.
Since my last post, so much has happened to us as family and Emily as an individual. We have met countless nurses, doctors, outreach workers, social workers, psychologists and parents in the same situation as us. We now know exactly what Emily’s tumour is and that it is treatable and she will get better. It’s just going to a tough ride for her and us over the next year to get rid of this nasty disease from her small body. We also know how your life takes on a ‘new normal’ which includes not planning too far ahead and living your life day by day, having an amazing support network in the shape of family and friends is vital and that our life is now dictated by how Emily is feeling, which can be quite difficult to tell ! And slowly, we are getting use to this. I have found it very hard given my job as a PA which is all about forward planning and knowing what you are doing months in advance. But, as each week and each cycle of chemo and its effects take over Emily’s little body, I am realising that although it is so hard at the moment, everything is temporary and it will get better once she is through the treatment. I also know that these nasty drugs are saving my daughter’s life and I’d rather go through this, than not have her in my life at all.
So, we are now on the journey to rid Emily of this nasty visitor. The biopsy showed that, like suspected, Emily’s bump is a cancerous tumour called Rhabdomyosarcoma. A sarcoma is cancer of soft tissue (such as muscle), connective tissue (such as tendon or cartilage), or bone and a Rhabdomyosarcoma usually begins in muscles that are attached to bones and that help the body move. Emily’s is located in the muscle between her ribs and skin on the left hand side. It has probably been there from very early on in my pregnancy and no one can tell me why or how it developed. It could be genetic; it could be cells not growing and dividing correctly or it could be just bad luck. No one knows. Most causes of this type of cancer are never discovered. But, what we do know is that it is very rare and only 60 cases a year are diagnosed in the UK. It is also much more common in boys than girls and for a newborn baby girl to have this type of tumour, it is incredibly rare. I almost feel like we are a case study as every nurse, doctor or anyone else we meet, are so intrigued and interested in what she has that I find I am repeating her story in every conversation I have!
Following Emily’s diagnosis, Dr Olga Slater (Consultant in Paediatric Oncology, GOSH), talked my husband Matt and I through her proposed treatment plan and Emily’s chances of survival. It was scary but necessary and she did it in a very careful and gentle way. A full bone scan, CT scan of Emily’s chest and a bone aspirate would be needed and they were to be carried out in the next few days so that treatment could start as soon as possible. Emily would also need a Hickman line inserting in her chest which would be the way the chemo drugs would be administered as well as any other medication, blood and fluids she would need throughout her treatment. My first thought was — oh no, she won’t be able to share a bath with her brother anymore, something that even though she was only 6 weeks old, she already clearly loved as did he! In the following days, Matt and I received so much information and met so many people, it felt like the days and nights passed in a blur. We were admitted to Elephant Ward at GOSH where all the tests and her first cycle of chemotherapy would be given. Yet again, we had to hand our daughter over to strangers who would knock her out and run the tests that would give us more details on the tumour as well as whether there was any other tumours in her body. To be honest, I hadn’t even thought about where she had any other tumours and the fact that she might, scared me to death. So, when all the tests came back clear and it became apparent we were only dealing with one localised tumour that hadn’t spread, it felt like a minor victory in what would be a long drawn out war. We celebrated with a glass of wine and a cold beer over lunch. Emily had milk. It was important to us to mark this small win as we didn’t know when the next win, large or small, would be.
Soon, the day arrived for Emily to have her first round of chemotherapy. I had been dreading this moment as this was the beginning of a journey that would see us in and out of hospital for at least the next 9-12 months as well as at the mercy of any germ that could give her an infection that her body wouldn’t be able to cope with. But, it was also the beginning of the end — the sooner we got started the better — and to be fair you build up that moment in your mind to be a big deal, but it’s actually quite a let down. It’s just like any other drug going into the body to kill off a bug that shouldn’t be there. It’s just a fairly massive bug and one that you really don’t ever want to experience.
We are now on our fourth round of chemotherapy and so far it hasn’t been too bad. Yes, she has been psychically sick and we have ended up in hospital for a few days after each cycle kicks in for either antibiotics or a blood transfusion, but the support around us to deal with this is incredible. From the community nurses who visit most days for a week after each cycle to our Clic Sargent support worker and our family, friends and neighbours — everyone has helped us. And for that we are so grateful. It is so important to have a good support network around you if you are going through something like this. They are there to talk with, cry with, laugh with and generally just to give you a hug. I don’t know how we would cope if we didn’t have these people around us.
And for some people, supporting us and Emily has meant raising as much money as possible. From my amazing singing family, Popchoir, putting on a gig at Koko in London to two very close friends cycling 100km across London at night and running a half marathon through the Royal Parks, people have stepped up when it mattered. I am also incredibly proud of our son Charlie who with his school friends and their mums, ran 5km in the Race for Life at Blackheath recently raising over £1500 for Cancer Research UK. Everyone is doing their bit. And that is so important.
As is another small victory that only just happened this week — her tumour is shrinking and it can now be removed through surgery, a thought that terrifies me. But – it’s shrinking, not spreading. It’s in retreat. Our unwanted visitor is starting to get the message. And that can only be a good thing.