This is Laoise's story......

Laoise was only 10 months old in 2008 when she was diagnosed with a rare form of leukaemia called Infant Acute Lymphoblastic Leukaemia and given a 50/50 chance of survival. She spent 8 months in hospital undergoing chemotherapy, collecting an impressive array of infections and spending a number of months in isolation as a result. She was looked after wonderfully well by Michelle and the team at Bristol Children's Hospital and her big brother Michael was looked after by his two grannies and numerous aunts, uncles and neighbours during those 8 months. Laoise learned how to walk when she was out of isolation, toddling along the hospital corridors, with Liam or D dragging her drip stand along with them. The following two years were spent on maintenance chemotherapy with numerous visits to Gloucester hospital for check ups and reviews. In September 2010 she was given the all clear and we were very cautiously optimistic.

A month later, she relapsed and was admitted to Bristol Children's Hospital again to begin a new regime of chemotherapy. Three weeks later she was found to have what turned out to be a life threatening bacterial infection and was admitted to intensive care for 3 weeks. The care she received there was fabulous but as she deteriorated, we were told by her medical team to prepare for the worst and were asked to visit the local children's hospice.

We were very reluctant to go there but after the first visit we found it to be a wonderful place and hoped we would not have to use it. Laoise woke up from her coma and discovered she had lost her hair and had a colostomy as a result of the bacterial infection. Then began the long process of recovery to try and prepare her for a bone marrow transplant. She had specialist play therapists Yvonne and Paula spend 2 weeks with her, showing her what would happen during total body radiotherapy which was needed to destroy her own bone marrow in readiness to receive donor marrow. Then some more chemotherapy and finally the big day in February 2011, just before her fourth birthday. So much hope rested on the transplant. After three and a half months in isolation, Laoise's immune system was strong enough to allow her to leave the hospital and stay in a house nearby for a few weeks. We came home in May 2011 and were given the devastating news in July that Laoise's cancer had returned. From here, it was a case of keeping Laoise as comfortable as possible.

So she started school and her wonderful teachers Kirsty, Katie and Zoe helped her settle in, looked after her and she was one of the gang in her small school. We'd head to the hospital each week for bloods to be done or, if she was well enough to be at school, her CLIC nurse would visit her at school. The results would determine how much chemo she would have that week or whether she would need a blood or platelet transfusion. Amongst the constant infections and occasional hospital stays, the chicken pox scares, the swine flu hitting our house/school, Laoise's leukaemia levels remained ever present but low enough to enable her to remain well enough to experience life as it should be. Then in October 2012, the leukaemia presented itself as a solid tumour in her sinuses so there followed another bout of radiotherapy, this time to her face, accompanied by stronger chemo. Her hair fell out again and this time she was very aware of that but just wore her woolly hat when she felt bad, or maybe that was because it was freezing out there!

We had 3 more wonderful years - the 4 of us making the most of the time we had and creating memories that have turned out to be so precious. We spent every available minute visiting family, going on adventures. We cycled, we climbed, we bounced and we were so fortunate to have some adventures facilitated by wonderful charities. We will be forever grateful to everyone for helping us in these endeavours.

Then in March 2015, the leukaemia levels in her body started increasing to a point where no chemo would be effective. So we headed to Sheffield where Laoise was entered in a trial for an emerging immunotherapy treatment. She had to have a continuous infusion for 2 weeks, so went around with her therapy in a backpack. During that time in Sheffield she was so delighted with herself for learning how to ride a bike - all she had to do was make sure none of the tubes got caught up in her wheels!

Devastatingly, the therapy was unsuccessful so we returned home unsure of how much time we would have with Laoise. We had to tell Michael, then 10, that we needed to prepare for a life without Laoise.

Laoise's condition continued to slowly deteriorate from September 2015 onwards. We took the ferry to Dublin just after Christmas and had to head back 24 hours later when Laoise became poorly. She recovered on time to join a large family gathering to dress up as a Jedi and see Star Wars, in 3D no less. Her reliance on blood and platelets began to increase as did our hospital visits. We were able to squeeze in a visit to Disneyland Paris in February but had to come home early when she became poorly again. In March 2016, she had the most fantastic 9th birthday party, surrounded by her friends, family and neighbours. It resulted in a lovely memory box full of Laoise's favourite things, thanks to all the special people in her life. 

We had a wonderful long weekend in Wales in March with family friends - on the beach and in the fairy woods. A quick trip to the CLIC Sargent holiday house in Scotland at Easter was followed by another round of radiotherapy because the leukaemia had come back again as a solid tumour above her eye. It soon appeared in her central spinal fluid so she had to have strong doses of steroid as well as more chemotherapy. Thankfully this was successful but more infections and increasing levels of leukaemia meant that she was getting more poorly, although we were not aware quite how bad it was as she was still going about her daily activities - albeit quietly and slowly.

She hadn't been at school for a number of weeks but she was able to help me out during my shift in our village shop on the day of the EU referendum. She was a dab hand with the old cash register. That was Thursday 23rd June. The next day, Laoise was in hospital for routine chemo and a blood and platelet transfusion. We left hospital to spend the weekend visiting the hospice on a routine respite stay but that night she had a temperature and on Saturday, we took her to hospital as she was falling in and out of consciousness. Scans didn't reveal anything significant causing the unconsciousness. On Monday she was transferred back to the hospice and died peacefully in our arms the following day, 28th June 2016. We miss her dearly every day - her laughter, her cheekiness, her determination, her kindness, her independence, her love of all animals, even slugs.... her death has left a massive void in our lives.

Laoise went through such a lot: treatments of all sorts including chemotherapy, radiotherapy, blood transfusions, transplant, intensive care, infusions, antibiotics, antifungals, antivirals, injections, skin grafts, colostomy, CT scans, MRI scans, lumbar punctures, fingerpricks, central lines in, central lines out, hair loss, cataract surgery, cardiac surgery, and long periods of isolation. She put up with so much over the 8 years of treatment, it's a wonder her little body lasted so long.

With your support, Children with Cancer UK can fund over 60 research projects across the UK accelerating breakthroughs to help drive up childhood cancer survival rates and find kinder, more effective treatments to reduce long-term side effects. This ground breaking research saves children's lives and would otherwise go unfunded. Their hope, and ours, is to ensure that every child with cancer can ring their end of treatment bell - something Laoise never had the chance to do. Thank you for helping to save the lives of children with cancer and keep families together.

At Children with Cancer UK we actively raise and invest money for vital 

specialist research to save the lives of every child with cancer and keep their family together.  Our vision is a world where every child diagnosed with cancer gets to ring their end of cancer treatment bell.

We really appreciate all your support and thank you for any donations.