Dilan Hayes
Dilan was 11 years old and we were living in Germany when he first complained of a pain in his leg that wouldn’t go away. After being referred for a scan the results showed a possible Osteosarcoma in Dilan’s left femur. A very kind German doctor broke the news to us and from then things were not to be the same for quite a number of years.
"The first decision we had to make and very quickly was where to go for Dilan’s further tests and treatment. We knew that there was possibly a long road ahead so we decided to return to Ireland where we had family to support us through the next stages. In Ireland, Dilan attended Cappagh Orthopaedic Hospital and was diagnosed with Osteosarcoma of the left femur in March 2006. X rays showed a large tumour, and Dilan commenced 9 months of chemotherapy at Our Lady’s Children’s Hospital Crumlin.
"Initial treatment centred on treating the cancer, and removing the tumour. Dilan was assessed as being suitable for limb salvage using the Ilizarov technique. Although we knew that this was pushing the boundaries of what had been done previously, as a parent it was certainly worth a try and the amputation was not something we wanted to accept if there was an alternative. Over the course of the next 5 years Dilan had multiple surgeries, (so many we lost count) to facilitate the process. However things did not go to plan, Dilan went through a lot over the next two-three years. Another complication with this technique is the risk of infection. Dilan had a number of very serious infections, requiring hospitalisation and treatment with IV antibiotics.
"Dilan kept going with the external frame for over 3 years and had a brace for a further 2 years. However there was still a considerable gap between the length of the left and right legs, so that even with a built up shoe it was almost impossible for him to walk on the left leg. All this time he walked with crutches.
"Towards the end of 2010 we were presented with another problem the non union of the old and new bone,at the hip joint. The new femur bone had grown but was too soft and was not joining with the hip bone. After a number of attempts and wearing of a cast (Dilan was unable to move for six weeks. He was confined to home, couldn’t go out to school and couldn’t sit etc.) the outcome was still not good. Further attempts caused more damage and there was little choice but to remove the temporary plate that was in place.
"The process hadn’t worked and the only option for saving the leg was to go back to the beginning and start the whole process again. At this point Dilan decided he had been through enough and requested that he be referred back to Cappagh Orthopaedic Hospital for an amputation. The surgeon assessing Dilan concluded that a full disarticulation was necessary. Dilan was scheduled for amputation in July 2011, the left hip and leg were removed.
"Initially after the amputation Dilan felt relief that the surgeries were over and that he could plan his life again – school, exams and music festivals! In fact one of the first things he did was attend the Oxigen Music festival, complete with tent and single Wellington boot etc. Dilan has also been lucky to have very good and considerate friends who include him in all the usual teenage activities.
"After the amputation Dilan tried a standard prosthesis but found it very difficult to use ongoing (particularly in crowded situations as in school and college). We researched other options and found the c-leg. Reviews for this prosthesis suggested that it was a much better option for someone with Dilan’s level of amputation. We looked at clips on You Tube of users wearing the c-leg and the also at the Otto Bock website. Dilan even got a c-leg on trial for a few weeks to try and see if it made a difference. He found the c-leg a much better option, allowing more ease of movement and also he could wear it for longer periods of time. We applied to our local heath authority for funding. However this type of leg was not one that they would normally fund and the application was rejected by them despite appeals etc.
"We got in touch with Amputee Ireland to ask advice, we wrote to local representatives to champion Dilan’s application as we appealed the decision but unfortunately the application was still turned down. In desperation I searched for other sources of funding, I eventually came across Scat and read how they helped other young people in Dilan’s situation. I wondered if Scat might consider an application from Dilan. I contacted Fiona Foley at the Irish office of BCRT (Bone Cancer Research Trust) who very kindly passed on Trish McEntee’s details at Scat.
"I approached Trish with the background to Dilan’s application. I was amazed at how quickly Trish responded and at how the team at SCAT took an interest from day one. We forwarded the relevant medical reports and waited to hear. The day we got the message from Trish to say that funding was approved was one of the best in the last seven years!
"Dilan recently travelled to Dorset Orthopaedic in Burton where he was fitted with a C-leg. The team there were amazing, efficient and caring, the physiotherapists advice was excellent, practical and very focused. Dilan is now getting used to the C-leg and all it offers.
"We cannot thank Scat and all the supporters enough for all that they have done for us by allowing Dilan to have access to this prosthesis. Seeing Dilan stand again and walk without crutches was something we had really thought would not happen – thank you SCT!”