Aaron’s story

Aaron was diagnosed with aveolar rhabdomyosarcoma just before he was set to start High School. He was ready to start school, looking forward to being with his friends and excited to learn new things but his diagnosis meant he had to swap his classroom for hospital for treatment.

“It was in the summer holidays before he started High School that we finally got told the news that Aaron had cancer. His diagnosis had a massive impact on all our lives but especially Aarons’ as he was an active boy who enjoyed cycling, swimming and was looking forward to starting High School with his friends.

“His first chemotherapy began on what should have been his first day of High School. He underwent a gruelling IVADo nine cycle regime of high dose chemotherapy over six months. He then had six weeks of radiotherapy to his foot, knee, groin and abdomen. These treatments were also followed by a further year of weekly IV chemo and daily oral chemotherapy at home. Aaron missed the entire first year of High School and a lot of his second year too.”

Aaron's treatment affected his mobility

Aaron was having treatment at Edinburgh, which on a bad day could take up to three hours to travel to from home.

“The busy traffic could make the journey a nightmare for a child who was unwell and feeling so sick. The journey could take us anything from 1.5 hours – 3 hours depending on the time of day we travelled.

“The winter roads were a nightmare especially when the Queensferry crossing was shut and we’d have to try and get to Edinburgh for treatment via Kincardine. Mentally and physically I don’t think I would have been able to cope doing that journey every day.”

Aaron’s Young Lives vs Cancer social worker, Heather, helped to get the family a room at the charity’s nearby Home from Home Ciaran’s House so they could stay nearby when Aaron had treatment.

“Heather was great, she helped us with so many things but one of the most beneficial was putting us in touch with Mandy the manager at Ciaran’s House. Aaron was very unwell on treatment and lost so much weight, he couldn’t eat and ended up with a gastrostomy. He was put on overnight slow feeding as this was the only thing he could tolerate without being horribly sick. Travelling back and forth to Edinburgh in the car became unbearable for him.

“Mandy and Sandra from Ciaran’s House were amazing from the first contact we had with them. They seemed to know how to made difficult days a little easier.

“We stayed there the night before every treatment was due to start. Aaron had to be in the hospital for 08:00 am most times for blood tests etc before his chemo so it helped a lot not having to stress to get to Edinburgh that early in the morning. Aaron stayed in hospital up to four days at a time for each cycle, longer at times when he became unwell.”

Not only did staying at the Home mean they could get to treatment quicker and easier, it also meant Aaron’s family were able to be together.

“Once we had a room it meant my husband and younger son Elliot were also allowed to stay there and could visit Aaron in hospital. Granny also stayed every now and then too. It was so hard having our family spilt in two.

“During school holidays and in-service days Lucas and Elliot would stay at Ciaran’s house while Aaron was an inpatient. These times allowed me an opportunity to switch with my husband and spend a night close by with Elliot, have a decent shower and do all the washing etc. It also meant that if Aaron was well enough he could escape the hospital ward knowing he had a safe, clean place to sit with his brother on the Xbox for an afternoon. The boys loved this time they spent together away from the hospital.”

Their room was there whenever they needed it. During Aaron’s radiotherapy treatment, they stayed for a full six weeks.

“He had to attend every day Monday -Friday and was often too tired to travel home for the weekend so we all stayed in Edinburgh.”

The Home helped Aaron’s Mum and Dad face the cost of a cancer diagnosis too, to avoid filling up the petrol tank time and time again and not have to pay out for parking too.

“Your living and travel costs mount when you have a child on treatment for cancer so having this facility run by Young Lives vs Cancer was invaluable. We would never have been able to afford hotel or house rental costs as I had already had to give up work to look after Aaron. Luckily my husband’s employer was amazing and he was allowed to work from home so even before lockdown happened he was able to work from home. This meant Elliot had support and could stay in his own home.”

During treatment, Aaron suffered from side effects that affected his mobility. The Young Lives vs Cancer Home from Home staff did all they could to make his stay as manageable as possible.

“Aaron’s mobility had been affected by his cancer, his primary tumour had started in his right foot. He now walks with two crutches and attends regular physiotherapy. Mandy always made sure we got a downstairs room to help Aaron. The bathroom was really spacious and had a disabled shower so it was easy for him to use.”

Aaron and his family were so thankful to all of the staff at the Home for helping make a tough time as comfortable as possible.

“The house itself is amazing, it’s so well run, Mandy and Sandra are just lovely and go out of their way to make things bearable when you are dealing with so much as a family. Ciaran’s house was an amazing resource and we used it right through Aaron’s treatment.

“The help that CLIC Sargent provides is so essential for families and we would have been lost on this journey without the support and advice from our Young Lives vs Cancer social worker Heather and the help we received from Mandy and Sandra at Ciaran’s House.”

Aaron is now home, back at school and doing well. He and his Mum love to pop in and see the staff whenever they can.

“Aaron is now in remission and only attends Edinburgh monthly for check-ups and three monthly for scans, for these appointments we now make the round trip in a day but once Covid regulations allow we will definitely pop into Ciaran’s House for a cuppa and say hi to the wonderful staff.”

Author: Emma

Posted on Monday 20 September 2021