Clare B
Posted by

My story: My baby twins Neve and Belle

Clare B
Posted by
19 Sep 2013

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!

Comments

19.09.2013

It's hard to know what to write after reading such of such terrible trauma, but it's harder to write nothing at all. I am so sorry to read of your loss. It is impossible to imagine what pain losing a daughter would mean. Your strength is incredible - I only hope that your lives begin to piece back together as you build a life for yourselves with Hiro and Belle as she grows stronger and healthier with each day. Wishing you all the best and a speedy and complication-free recovery for little Belle.

Anonymous
20.09.2013

I am so very sorry to read about Neve but pray that you will continue to be strong for Hiro & Belle xx
God Bless x

Anonymous
20.09.2013

My heart is very heavy for this family and just shows we must keep up our pace and beat this terrible cancer

Anonymous
21.09.2013

So sorry for your loss of lovely Neve. Wishing you all the strength in the world for you and your husband to keep managing and making life work for you both, of course for Hiro and Belle too. Hope Belle copes well with all the chemo her poor tiny body has to endure. Sounds like you've got a little fighter there. Sending warm wishes.x

Anonymous
21.09.2013

As an ID twin this story breaks my heart. I am crying just reading. I am so sorry for you and your girls. They will never forget that bond. it will be a glowing light in their hearts Xox

Anonymous
23.09.2013

Your strength amazes me Clare. Hiro and Belle have a fantastic mummy and daddy and Neve was very lucky to have you both for the time she did. All my thoughts are with you all. X

Anonymous
24.09.2013

Prey daily for your strength Clare and Darren
you were alwas such a special work collegue

And you are a very special Mum

JS x

25.09.2013

So, so sorry to here about your loss Clare. You are so brave to share your story like this and it makes me even more determined to do my bit to help beat blood cancer. I've got everything crossed that Belle's treatment continues to go well and would like to thank you for your courage - puts some of my more trivial worries into perspective. God bless.

Anonymous
26.09.2013

I read your story with immense sadness and no young family should ever have to suffer such awful pain and heartache. Your strength and determination are nothing less than incredible. It is difficult finding the rights words and I do hope that knowing others are thinking of you can bring some comfort and help you to remain strong. Your beautiful Neve and her wonderful smile will always be remembered with enormous love and have a special place in your hearts. I continue to hope that Belle will make a full recovery and that one day soon you will all start to enjoy the life you so deserve. Wishing you all a healthy and happy future together. With lots of love, Maria XXXX

Anonymous
01.10.2013

Thanks Maria for your kind words! Xxx

Anonymous
01.10.2013

Thank you for your words! X

Anonymous
01.10.2013

Thank you JS & AS!!! Still love ya loads! Look after your precious boys!

Anonymous
01.10.2013

Thank you for your kind words xx

Anonymous
01.10.2013

Thank you for your kind words xx

Anonymous
01.10.2013

Thanks for your kind words xx

Anonymous
01.10.2013

Thank you for your kind words xx

Anonymous
01.10.2013

Thanks for your kind words xx

Anonymous
01.10.2013

Thank you for your kind words xx

Anonymous
03.10.2013

I am so sorry for your loss, sending all my love and good wishes for you and Belle, and of course the rest of your family... Take care and I hope Belle has a speedy recovery... Xxx

Anonymous
09.10.2013

Thank you for sharing this heart breaking story, will pray for both your daughters, and hope you can remain strong, with courage and strength for the road ahead. Wishing little Belle a complete recovery from this dreadful illness. My thoughts are with you and your hiusband.

Anonymous
10.10.2013

Your story has reduced me to tears. My son was diagnosed with ALL 10 weeks ago at LGI. Callum is 14. You are truely an inspiration. I hope it is a small comfort knowing we are praying for you. God Bless x

Anonymous
10.10.2013

God Bless. My son was diagnosed at LGI 10 weeks ago with ALL. Prayers for you all x

Anonymous
01.11.2013

Cannot put into words how brave I think you, Darren and Hiro are. My heart is with you and all my thoughts and prayers for Belle

Anonymous
07.11.2013

As the scientist who did the diagnostic tests on your girls that day, I have often thought about your family. I was so sorry to hear that Neve passed away. We are all praying that Belle makes a full recovery and that there are many happier times ahead for you all.

Anonymous
06.01.2014

What to say :( sorry for your loss seems so insignificant.
From the bottom of my heart I wish you and your family a happy a healthy future.You and Belle look beautiful together, you're suffering doesn't show itself in the photograph, what it does show is a proud mum with her gorgeous daughter. I will think of you all often, and send up a prayer.xxx

Anonymous
06.01.2014

Thank you Helen for your kind words. X

Anonymous
06.01.2014

Hi im Darrens cousin although we havent seen each other for absolutely years, i have just read your story , it made me cry. Im so sorry for you all what a terrible thing to be going through. Its so sad that you lost your beautiful baby girl, you seem so strong i dont know how you do it . im sending lots of love and good wishes ,if you need me for anything please just ask, i know we havent seen each other for a long time but that doesnt matter xxxxxxx

QSKmL

Anonymous
06.01.2014

Thank you Fiona. Belle came home for Christmas and will be starting maintenance chemotherapy this week if her counts have recovered. I only wish science could explain the reasons why! Best wishes x

Anonymous
08.01.2014

Thank you for your message Julia and comments. I will ensure Darren gets your message. Regards.

Anonymous
08.01.2014

Thank you for your comments regarding Belle. We came home for Christmas and are soon to be starting maintenance chemotherapy. I hope Callum is managing to get through his treatment too for ALL. Best wishes x