Our beautiful daughters Neve and Belle were born two months premature on Saturday 10th November 2012. We were overjoyed that they were here but fearing for their survival as they were so small. Neve, weighing just 3lb and Belle just 2.16oz spent two months in Neonatal at St James Hospital, Leeds. On 17th January 2013 they are finally allowed home (2 days after they should have been 'term'). Our Son Hiro was besotted by them. He would come in from school and look at them closely before informing me 'who was who' - often getting it wrong, as they were identical.
Over the coming months their personalities established. Neve was known as 'noisy Neve' and Belle 'the bellower'! They had been discharged from 'Jimmies' with feeding issues and this we felt was a struggle in itself. Little did we know what was lurking around the corner.
In April I took both girls for their 2nd immunisations. Several days later Neve became very ill. She refused feeds, looked pale, cried a lot and had developed two black eyes and bruising on her body. On Sunday 5th May, my husband Darren brought Neve into the LGI (Leeds General Infirmary) as she had been sick after her milk (again) and was looking terrible and constantly crying. From that day forward our lives were turned upside down.
On Sunday 5th May, Consultants sat us in a room, and, looking like they were about to cry themselves, informed us that Neve was very poorly and had ALL (acute lymphoblastic leukaemia). Leukaemia we thought.... cancer.... surely not our baby girl. Soon after, the attention was brought to Belle, who was at home with me and Hiro playing. They asked Darren to bring her in, as she had started to become anaemic two weeks prior. Several agonising hours later and after many blood tests, Belle too was diagnosed with ALL.
Devastation and fear hit us. How could this possibly happen to our beautiful daughters?
Immediately that evening Neve (being the hospitals immediate priority) was sent to theatre for a Hickman line inserting and treatment (fluids & steroids) were started. Belle (whom was about 3 days behind in her severity) followed suit not long after.
Neve managed 15 days intensive chemo/treatment before passing away on Monday 20th May. She was terribly poorly and as well as suffering with ALL and being high risk, she also had several bacterial infections along with an extremely sore bottom (from the side effects of the chemo). That day our hearts were left with a huge piece missing. A piece that will never be replaced. On Monday 29th July, our gorgeous Neve was laid to rest.
We are still at the LGI (3 months later) with Belle, who is about to start her 3rd round of chemo. She has battled through so far and astounds me each day with her determination. We have such a long journey ahead and one that we still can't believe we are a part of.
We miss our baby daughter Neve so much and it is all still very stressful for us as a family, as we struggle to juggle 'normal' family life for our Son, Hiro, and be at the hospital for our daughter Belle. But unfortunately we have no choice, but to carry on for their sake. Surviving is all we are doing right now..... that's about as much as we can do!
Looking back, I wish I had the knowledge that I do now about leukaemia and the warning signs. I had no idea about the disease, and we are still learning now, but without the information provided by your site, we would have even less knowledge.
One day we hope to look back on this journey and start enjoying life. But for now we have to just keep going and keep strong, and not let this cancer beat us!