Zoë Hope Fund

In the two weeks leading up to Zoë’s diagnosis (just after Christmas 2015), I remember that she slept more than the other babies we would be around at parent and baby groups. She was always a good sleeper and had been a happy and content baby, I was breastfeeding her and she was a healthy weight – I was a brand new mummy, we had been trying to conceive a long time and she was truly beautiful and I loved my time with her on maternity leave. The only signs that something ‘was wrong’ was when I noticed she was sleeping more during the day and she was pale in colour over that short period before her diagnosis.  

The day of her diagnosis I was out with a friend and her baby in town. We were changing our babies at a changing station in a department store toilets and I noticed a few very small deep purple bruises on Zoë’s beautiful chubby thigh. I observed it with my friend, took a photo and thought I would keep an eye on it. That evening I was giving Zoë her bath and I observed the bruises were still there. I did the ‘glass test’ rolling a glass over the bruises to check if they disappeared, something I knew to do to check for meningitis – the bruises didn’t disappear but Zoë seemed happy and had no temperature or fever. I called my mum who was a retired nurse to talk it through with her –  I also commented on the phone to mum about how pale her skin was, but reasoning it’s the North East, she is a Geordie girl and its winter! As a precaution mum suggested I called 111 (the NHS non emergency number). I called and they booked us an appointment for later that evening at children’s A&E, and when my husband, Nathan got home from work we all bundled into the car thinking we would simply be returning home again with some antibiotics for her a few hours later – nothing life threatening had crossed our minds at this point. 

In the hospital they checked Zoë over but commented on how happy she seemed, no temperature, no signs of distress and they ruled out meningitis immediately. “Its probably just a virus” the Doctor said, laughing with a colleague – lightheartedly googling a non-urgent virus that can cause rashes and showed me the condition on his phone – “nothing to worry about I’m sure - but we will take bloods as a precaution to check all is OK”. That was at 9pm. We waited in a consultation room for hours, Zoë asleep soundly in her car set, the usual ‘come on we want to go home, we have work tomorrow’ hospital wait…. and the minutes turned to hours.

A junior doctor came to examine her tummy, said nothing and then more waiting. As the clock turned past midnight my husband told me he knew at that point something was wrong – it was all taking too long. At 2am the doctor from earlier came in to speak to us – he had been called back in from home (he was on call). His face was grey, he paced outside the door before coming in to speak to us. He looked at us both and said “I am so sorry but your daughter has leukaemia.”

White noise filled my ears as the shock hit – we were both trying to take in his words. He told us we could stay in hospital with Zoë for the rest of the night and we would meet the leukaemia team in the morning. He left the room – he had clearly not expected it either. Nathan and I met each others gaze and broke – as our eyes met and the reality hit, we embraced each other, cried and prayed as our world unravelled while our beautiful Zoë slept soundly. That was the worst night of our lives and feelings we will never forget. 

We had a fantastic leukaemia Consultant ‘Dr Geoff’ and a fantastic team of leukaemia nurses and staff at the Great North Children’s Hospital in Newcastle who were all very experienced, and who explained things brilliantly and helped us to feel supported from the start. Our lives changed literally overnight – Zoë’s treatment started immediately in order to save her life. Blood and platelet transfusions, surgery to have a Hickman Line fitted, steroid and chemotherapy treatments, and regular lumbar procedures under general aesthetic all began.

The treatment plan was two years long in length – 6 to 8 months of ‘intensive treatment’ which involved various chemotherapy drugs and then a ‘maintenance phase’ would last a further 18 months. We didn’t go home for 6 weeks initially and throughout the intensive treatment phase we spent more time in hospital then at home – hospital became home for us with Zoë and I staying on the ward whilst Nathan tried to continue working full time, visiting us between his shifts, and before and after work. The support of our family and friends got us through and we are so thankful for that. We are also thankful for the physios, play therapists, OT’s, nursing staff and additional staff who all got to know Zoë and became part of our family during that time. 

Zoë did absolutely brilliantly throughout her treatment – she went through more than any little person ever should and she did it with such strength and beauty. She made it through the intensive phase and we enjoyed a few months of ‘semi-normal’ family life – we were able to take her on holiday for her first birthday and met up with family when we could around her treatment times. As she entered into the ‘maintenance phase’ of treatment sadly we found out at one of her clinic appointments that the leukaemia had returned. Nothing more could be done. We had 3 very special weeks with her – supported by friends and family who were praying for her.

On 10th June 2017, only 21 months old, Zoë went to start her eternal life in Heaven. We miss her every day and we look forward to the day we are reunited with her. 

Zoë was full of joy and she loved to laugh. She engaged people wherever she went and people would literally stop in their tracks to talk to her and comment on how beautiful she was. She loved reading books and flicking through pictures. She loved ‘Mr Tumble’ and would sway along to the music and touch her nose when the song would tell her to! She loved eating ice-cream and we have some great photos of her completely covered in it! She loved her sleep and was a happy and content sleeper (like her mum!).