Dylan was diagnosed with Langerhans Cell Histiocytosis (LCH) a rare lung cancer in February 2016, when he was two years old. His Dad, Mike, shares their story:
A Collapsed Lung
On Christmas Day 2015, we took a poorly Dylan to the walk-in clinic. He was seen straight away and after an initial assessment the doctor quickly picked up the phone and called for an ambulance. Rushed to A&E he was given a nebuliser and they tried everything to improve his breath sounds, eventually he was sent for an x-ray where it was discovered he had suffered a lung collapse. No one at the hospital had put a chest drain in anyone that young so we were transferred to a different hospital where he stayed for two weeks while the lung collapse healed. A CT scan was conducted and showed cysts covering 90-95% of his lungs, a statement was made to one of the respiratory consultants ‘what did this boy die of?’ He came home for four days and suffered his 2nd lung collapse, this time they did a procedure called pleurodesis to stop his lungs from fully collapsing and whilst doing it they biopsied his lungs. This time he stayed until 31st January and enjoyed just over a week at home. Appointments were scheduled for a double lung transplant.
The Treatment Plan
10 February and Dylan was starting to struggle again as he suffered a respiratory arrest. Suffering a bi-lateral lung collapse Dylan was fighting for his life and sent to their intensive care team. On arrival, my wife Kerry was greeted by Dylan’s respiratory consultant and oncology consultant who would stay with us for the next seven years. He may have been in a bad way but we knew what was wrong and there was a treatment plan. Dylan was on a ventilator and in a precarious state until Valentines Day. He flitted between the paediatric intensive care unit (PICU) and the oncology ward with numerous lung collapses, but you could see he was improving. However, after catching an infection Dylan suffered a seizure on 18 March (the anniversary of the day Kerry and I first met) and had to be ventilated again.
Preparing to say goodbye
He gradually got worse and after suffering a tension pneumothorax he was on the brink. With his heart rate consistently around 200 bpm and oxygen saturations down in the 60s things were very bleak. On Good Friday 2016, Dylan was christened, and our families came to unfortunately say their goodbyes. On Easter Saturday, the decision was made to start the process of active withdrawal, however, as the process progressed Dylan started showing some signs of fight left. Gradually, with some tweaks to his sedation, a change in stomach medication and with the help of a PulmoVista machine (never previously used on a child) they were able to wean Dylan off ventilation. Nine days later on 4 April (our wedding anniversary) we were given the best present, without following the weaning protocol, as it was decided he needed to be off the ventilator and handle the withdrawals after, Dylan was breathing on his own. All the conversations over the next couple of months were about helping him talk, walk and feed himself on his own and how to do it carefully and maintain
Dylan could come home
To date, Dylan has yet to have suffered another lung collapse but did have to celebrate his 3rd birthday in his isolation pod. 20 May 2016, Dylan was finally allowed home, still on oxygen but home, after three months in either intensive care or isolation. Over the remaining course of his first treatment it was very uneventful compared to the initial few months. Apart from being poorly over Christmas yet again and another stay in hospital for the festive period. In August 2017, Dylan rang the end of treatment bell for the first time.
Still under care and on the lung transplant list all things appeared to be going smoothly as he had made it two years post treatment with no relapse. The final hurdle was a last check to remove him from the transplant register. The scan of his lungs was amazing, and Dylan could come off the register. His discharge letter, however, contained bad news. In the radiographer’s notes was mention of a lesion in his spine where there had not been one previously. Numerous tests later and biopsy on his spine, it was unfortunately back and in November 2019 he started a two-year protocol with the same chemotherapy drugs as the first time.
Being in isolation
Coronavirus (COVID-19) would hit a couple of months later and we had to disappear back into isolation once again as the fear of another virus taking hold of Dylan was too great. Mentally for Dylan this time was harder, another birthday alone, he had to give up football and could hardly do any activity as the risk to his spine was too high. We did, however, get a bit of a surprise in November 2020. They had studied his scans again and found the relapse had only taken hold of his spine and not in his lungs as well. Just as we were waiting for chemotherapy on the start of week 52, they apologised for the delay, but his oncologist wanted to speak with us. That week’s chemotherapy would be his last. End of Treatment Bells provided a bell for us at home, and we celebrated ringing the bell for the 2nd time on 28 November 2020.
Ringing the bell for the third time
Dylan had 14 months off treatment this time as his one-year post treatment review showed a new lesion on his spine. On the day we got the results he was sent for a full skeletal scan which showed changes in his skull. More tests were required to evaluate the extent of the relapse, fortunately the damage was limited to his skull and spine. On 1 April 2022, he underwent surgery to remove a 50p coin size lesion from his skull, had a metal plate fitted and started treatment on 4 April 2022. This time the treatment protocol was less harsh as it had been caught early and apart from the odd virus he only went to the hospital for chemotherapy and avoided many overnight stays. At his six-month review, it was intimated to Dylan there may be a possibility of him stopping treatment early. After his next review he came out and rang the end of treatment bell for the 3rd and hopefully final time.
Mike, Dylan’s Dad, March 2023