* This post is written by a guest blogger and reflects their personal views, experiences, and opinions. It does not contain official medical advice. *
Childhood Cancer Awareness Month is an internationally recognised event every September. More than 300,000 children are diagnosed with some form of cancer every year, and one child is diagnosed with cancer every 3 three minutes. The fight against this devastating disease rages on, so we wanted to share Dylan’s story to give you an insight into the struggles both he and his family have faced in recent years.
The first time we knew anything was wrong with Dylan was Christmas Day 2015. He started the day having trouble breathing and being very lethargic. After he opened his presents, we put him down for a nap and then got him up for dinner. He hardly ate anything which wasn’t like him, even peas and yorkshire pudding which he loves. As we were driving over to Kerry's Mum & Dad's after dinner, we took a detour to the walk-in centre, and Kerry took Bryce our eldest to her parents. Dylan was seen by the doctor immediately and after some brief checks, they picked up the phone and sent him to A&E via ambulance.
It was discovered after some tests that his lung had collapsed but without trauma or infection. He was transferred from Derby to Nottingham, where he has since had all his treatment, and they inserted a chest drain. Once he stabilised after a few days he was sent for a CT scan, which showed his lungs completely covered in cysts. After 2 weeks in hospital, Dylan was discharged, we were home for 4 days before another lung collapse. This time when they put in the chest drain, he had a biopsy done. This time he was in the hospital for nearly 3 weeks, numerous checks and tests were done and a referral was made to Great Ormond Street Hospital because at that time, they believed the only hope was a double lung transplant. When I say hope, it means hope for more time, as that is all it would have given us.
After discharge, we had just over a week at home and liaising with GOSH over his appointment. Then on February 10th, things took a dramatic turn for the worst. Dylan stopped breathing at a local playgroup and needed mouth-to-mouth. After the ambulance arrived, we were taken to Derby for two chest drains then onto QMC where the diagnosis had come through as Pulmonary Langerhans Cell Histiocytosis. Dylan spent four days on life support in a very precarious state, but for the first time we had genuine HOPE! Flitting between PCCU and the oncology ward was the norm, as cysts started to pop and both teams were phenomenal at speaking with specialists around the world for additional guidance. Then on March 18th he got an infection, had a seizure, and stopped breathing again. He went back onto life support.
Terrifyingly, Dylan almost passed away and we even started the process of active withdrawal before he started to slowly improve. He came off life support finally April 4th 2016 and continued three-weekly chemo until July 2017 when he finished treatment.
Fast forward a little over 2 years and we went to Great Ormond Street Hospital for a lung transplant discharge appointment, which went great from a transplant point of view. But unfortunately, a lesion was detected in his spine. Over the next few months, numerous tests were completed and in November 2019 Dylan started treatment for relapse as the LCH had fully taken over his spine. He had numerous holes in his vertebrae and 1 had nearly fully collapsed.
Dylan went back onto the same treatment plan as the first time. This time, however, it was to last 2 years. We were given a shimmer of hope as his consultants had spent a large amount of time studying all his scans and again reaching out all over the world to formulate the best plan for Dylan. And in December 2020 Dylan was given the most amazing early Christmas present, he was finishing treatment a year early.
However, Dylan’s illness has taken a serious emotional toll on our family leaving us suffering anxiety and PTSD from his stint in intensive care. We’ve all experienced feelings of isolation from people and it’s taken a toll on our work life. Dylan’s older brother Bryce had to grow up too fast which brought its own issues and has made it difficult for his diagnosis. He was 5 when he was told he had to say goodbye to his brother, to then be told ‘actually he isn’t dying after all’. That’s a lot for a young child to take in.
Sadly, Dylan’s own confidence is impacted by his illness. He panics if he hurts himself or goes near a hospital or ambulance. We also cannot leave him unattended at any point and he must be with someone who is trained in basic life support as his condition still leaves him vulnerable. This can impact his ability to mingle with friends and adds to his apprehension to try new things.
Although the past 18 months have been an additional challenge for everyone, Dylan has taken it in his stride. He tries his best at everything and even though it isn't easy for him, he is his football team's goalkeeper with a few ‘Man of The Match Medals’ to his name. He is excelling in school and is working very hard to overcome the physical challenges his cancer has left him with. A lot of people see Dylan and he looks amazing, but what they don't see is the constant battles that he faces, still having cysts in his lungs and damage to his spine, neuropathy causing pain in his legs and often needing his wheelchair on busier days. But most importantly he has never lost that beaming smile that lights up the room.