In 2008 Ryan Edwards began complaining of tummy aches and back pain. Many visits to the family GP followed as Ryan’s symptoms became increasingly worse. Eventually in July 2008 after being referred to hospital for an ultrasound, Ryan was diagnosed with stage 4 high risk neuroblastoma – an aggressive childhood cancer.
His parents Julie and Gareth tell us that Ryan, who was then only 22 months “had a 9cm by 11cm tumour between his kidneys, encasing his aorta and resting on his spine.”
Like more than half of children diagnosed with neuroblastoma, the cancer had spread throughout Ryan’s body to his bones and bone marrow by the time it was discovered.
Frontline treatment was successful and finished the day before his third birthday. With no evidence of disease his parents enjoyed an active and happy year with their son.
Sadly, at the age of 4, ultrasound and X-rays confirmed Julie and Gareth’s worst nightmare.
“The disease had returned in Ryan’s thighs, pelvis and throughout his spine and bone marrow. Our lives were turned upside down again,” admits Julie.
At this time Ryan received every form of treatment available to him in the UK, including TVD and MIBG therapy at University College London Hospital. Ryan then received ch14.18 antibody therapy in Greifswald, Germany after which he achieved remission for the second time in January 2012.
“Devastatingly, just months after, in March 2012 he relapsed for the 2nd time with a tumour encasing his spine,” recall Julie and Gareth.
After receiving radiotherapy his parents received the news they had hoped and prayed for, Ryan was in his third complete remission. At this time they started discussions with consultants in Tübingen, Germany where a clinical trial for a Haploidentical Stem Cell transplant had shown very promising results for preventing further relapse. Not available at that time in the UK, the family turned to the NCCA UK for help. Overwhelming support from the public meant enough funds were raised for the NCCA UK through Ryan’s Appeal to allow him to receive the HAPLO stem cell transplant.
“Words cannot express the gratitude we feel to every single person that donated” says Julie.
The transplant took place in September 2012 and although the process initially went smoothly for Ryan, his body tried to reject the new cells.
Julie says “The amazing team in Tubingen prevented the rejection but regretfully Ryan developed GvHD (Graft versus Host Disease) of the mouth, skin and stomach. He was in Germany for a total of 9 months before returning home where he slowly regained his health.”
Today, Ryan remains in complete remission. He is now attending school and truly enjoying life.
“As a family we will be forever grateful to the NCCA UK and to everyone who donated to Ryan’s appeal. You cannot imagine the overwhelming feeling of having to raise such an enormous amount of money and the relief when a charity like the NCCA UK is there to help you” say his parents.
High risk neuroblastoma has a high rate of relapse which is why Ryan’s family, friends and supporters continue to fundraise in case Ryan needs any additional treatment or if his cancer returns for a fourth time.
Please make a donation to the NCCA UK to help Ryan, and children like him. Every donation made for the NCCA UK, no matter how small, will make a difference.
If you can help by holding or organising a fundraising event to raise money please contact the fundraising team at the NCCA UK on 020 7284 0800.