Amber was admitted into hospital in November 2009 after becoming unresponsive at nursery, doctors discovered a tumour in her abdomen and she was transferred to Sky Ward at the Children’s Hospital for Wales. After four days of scans, ultra sounds, x-rays among other numerous tests her mother Aishling’s worst fears were confirmed when she was diagnosed with Neuroblastoma – a rare form of cancer which affects nerve cells.
Luckily Amber’s cancer hadn’t spread, but she needed risky surgery to remove the grapefruit sized tumour which was very near both her main blood vessels and her spinal cord. On 13th January 2010 Amber was admitted to South Ward for the 4 ½ hour operation. The operation went well and amazingly despite being told she may need to spend time in intensive care Amber was home after just 5 days.
After having the operation Amber’s cancer was lowered from Stage 3 to a Stage 1, which meant she didn’t need chemotherapy, however a routine test at Easter showed high catecholamine levels which means that Amber needs to be ‘actively monitored’ by having MRI scans every 3 months and urine tests every 4 weeks.
‘The hospital has been absolutely fantastic, as have the staff. Her consultant is better than we could ever have asked for, and has treated her as an individual since day one and has also been very honest. Her surgeon works miracles, he saves lives, and I was happy knowing that he was looking after her. And the nurses and play specialists! They are so wonderful! I met some very wonderful and special people during Amber’s times in the hospital, and that’s why we want to raise money to make it even better!’ said Aishling.
Aishling went on to organise a very successful sponsored walk of Snowdon to raise money for the Noah’s Ark Children’s Hospital Charity. ‘The money raised will go towards purchasing an open MRI scanner for the Children’s Hospital for Wales, so that children won’t have to go under general anaesthetic to be scanned like Amber does, it will also mean that parents will be able to lie beside them during the scan.’
Hari was born safe and well in 2008, despite the belief of the medical profession that he wouldn’t make it. He soon showed his infectious personality and a real hunger for life. However, he began showing signs of delayed development and the stress and concerns started all over again for his parent’s David and Ceri.
Hari undertook numerous tests and was found to have hyper-mobility in his joints resulting in an inability to crawl and walk.
As part of his treatment, Hari had a course of hydrotherapy in his local hospital. The staff worked hard to build his muscle strength and core stability in a series of sessions in the pool. Hari took his first steps just a few days after his second birthday. Mum Ceri admitted she ‘shed a tear’ when he took those steps and describes the past few years as an ‘emotional rollercoaster.’
Hari’s big brother Dylan supported Hari through every step of this journey standing by his side and showing him how to walk, one foot at a time. Ceri said; ‘Dylan has always been very supportive to Hari, both physically and mentally.’
Dylan watched Hari in his hydrotherapy sessions and encouraged and supported him at every opportunity. Dylan also questioned the shortage of time that was available in the pool and the family discovered that it was a shared resource. The pool could only be used by children’s physiotherapy for a limited amount of sessions per week.
This clearly remained in Dylan’s mind because he came home from school with information about the Noah’s Ark Children’s Hospital Charity’s Splish Splash Splosh campaign. Dad David recalled; ‘He was really excited that the Noah’s Ark Children’s Hospital Charity were raising money for a dedicated hydrotherapy pool for children. He asked if he could do something special for his little brother and other children in South Wales.’
Read about Dylan’s amazing efforts in our news pages.
He was assessed by the expert team at the Noah’s Ark Children’s Hospital for Wales and his condition was deemed so serious he was immediately transferred to the High Dependency Unit.
He remained here under close observation for five days before going back to Ocean ward. After only a day back on Ocean, poorly Loki had to go back to the HDU for more close observation by the specialist nursing team there.
Having any child in hospital is stressful, but this is particularly so when they are so young. Kirsti and Stephen, Loki’s parents, received great support from all the staff at the hospital. With Stephen on a course in Cardiff and Kirsti at home with Loki’s brother and sister, over two hours away, regular updates from the nursing staff on Loki’s progress was vital to keeping Kirsti and Stephen at ease. Kirsti said; ‘The hospital couldn’t have done more, they were fantastic!’
Loki is now fit and well and his parents feel his time in hospital hasn’t held back his development at all – if anything it has made him stronger.