Parenting a child with cancer

Teddy was born on the 21st December 2016, a beautiful healthy baby. But on 17th April 2017 at just 16 months old our world was rocked when a large tumour was found in Teddy’s abdomen. A few days later he was diagnosed with Neuroblastoma, a childhood cancer with a poor prognosis which affects around 100 children a year in the UK. Up to this moment I had found motherhood relatively easy; Teddy was very calm and happy, my parents lived nearby and I met an amazing group of Mums to spend time with. I adored motherhood and Teddy’s first year was one of the happiest of my life.

The photo below was the first Instagram post of Teddy in hospital, five days after being admitted. I had regularly posted photos of Teddy on my account, which I began as a way of feeling less lonely at the start of motherhood. At first, I was hesitant to share the news of Teddy’s diagnosis. It felt too personal, too raw. But in the first week after his diagnosis, I had trawled social media searching for similar experiences to ours, hoping to see positive outcomes and find stories that would bring me strength. I found some incredibly inspiring accounts belonging to other oncology mums that made me feel hopeful and less alone. I decided to share Teddy’s story to make it easier to update friends and family and to try to make our journey less lonely, and hopefully to help others in the same situation feel less lonely too.

Teddy was initially hospitalised for 23 days, during which time he had a central line inserted in his body (to administer drugs and take blood), a tumour biopsy, and the first two rounds of chemotherapy. We also spent a night in PICU where his chest was drained because his lungs had filled with fluid and he was struggling to breathe. This was a terrifying time; we were in unchartered territory and finding it hard not to break down. But my friends were just wonderful. They organised care packages for us, held my hand during his first surgery, and travelled across the country to comfort me. They sent messages every day to let me know they were there and we were loved.  I will forever be grateful for their support which got us through the nightmare of those early days.

Neuroblastoma requires very intense treatment. Teddy has endured more medical procedures in nine months than most people experience in a lifetime. On top of looking after him, we have the added stress of having to fundraise hundreds of thousands of pounds to get him further treatment not yet offered by the NHS. Fortunately, his treatment is working and he currently has no evidence of disease. We are currently in Barcelona to get Teddy vital immunotherapy treatment. As luck would have it we used to live here and so have a network of friends who have been helping to make things as easy as possible for us.

The last nine months have been tough, but the love and support of friends, family and total strangers has got us through. As a mum I’ve felt very lonely at times. Seven weeks straight in hospital in the summer left me feeling extremely isolated.  We can’t socialise with him much or take him to toddler groups as his immune system is too fragile to be around other children. But having a wonderful network of friends to support me, even if just over the phone, has made a huge difference. Social media has also made me feel less alone. Twelve thousand people follow Teddy’s story on Instagram (which totally blows my mind!) and send messages of love and support on a daily, if not hourly basis. People don’t always know exactly what to say, but that doesn’t matter, it’s the thought that counts, and knowing people are thinking of us is so important.

You can find out more about Teddy’s fight here and if you’d like to donate you can do so here.

Written by Emma.

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