A. The week prior to Christmas he had cold like symptoms for around 48 hours or so, so when he developed a minor dry sounding cough on Christmas Eve we thought it was because of this. Until he started to get breathless across the course of Christmas morning there were no other visible symptoms.
Q. Do you feel anything could have been done differently to diagnose Dylan sooner?
A. The only thing that may have sped up Dylan's diagnosis would have been an earlier biopsy. At first the doctors were looking for a genetic condition so they believed blood tests would show this. A biopsy was only taken after his second collapsed lung. Truthfully they almost didn't take the biopsy, had they not done he wouldn't be here today as LCH would not have shown on any blood test they ran.
Q. Do you smoke?
A. NO we do not smoke.
Q. Have you tried alternative medicines or therapies?
A. We do not take medical advice from anybody other than Dylan's consultants and those they seek advice from so please respect our wishes and do not offer unsolicited advice on this matter. This is not through us wishing to be rude, but so little is known about LCH we would hate to accidentally trigger a reaction.
Q. How is Dylan?
A. Dylan is doing amazing at the moment. His last CT scan showed his lungs have gone from being 80% cystic to approximately 20% and he maintains good sats without oxygen. He runs around, plays and attends nursery like any other boy his age. On the outside you cannot tell he is ill or what he has gone through at all.
Q. Is Dylan still receiving treatment?
A. Yes Dylan is still receiving treatment at the moment. He is having two types of chemotherapy every three weeks.
Q. Does Dylan still have Cancer?
A. Technically not, what Dylan has now is the after effects of Cancer. The LCH is now classed as 'Non Active' but there is lots of damage to the lungs caused by the disease when it was active.
Q. Does Dylan still have seizures?
A. Thankfully Dylan has not had another febrile seizure since March 18th. Febrile seizures are actually fairly common in children and they often grow out of them by approximately age three.
Q. What actually happened over Easter 2016? March 18th he had a febrile seizure and stopped breathing. He was ventilated to help him breathe but he gradually deteriorated and suffered more collapsed lungs and infections. Good Friday we were told he was likely not to survive his oxygen levels were drastically declining and his lungs were seriously infected. Easter Saturday the doctors discussed there being nothing more they could do for him and turning off the ventilator. We started the process by switching off the muscle relaxant and discovered he needed more sedation. Upon doing this he improved slightly, just enough to make us question everything and then his blood results showed astonishingly that his organs weren't shutting down despite the very low levels of oxygen so we stopped the process and waited leaving Dylan's fate in his own hands.. Somehow he fought back after that and improved very very gradually over the next week and was awake and breathing by himself by April 4th.
Q. How many times has Dylan had a collapsed lung?
A. We do not fully know, there will be collapses that occurred whilst chest drains were already in place but we do know he had 26 chest drain procedures.
Q. What is Dylan's prognosis?
A. There are very few cases of Pulmonary LCH in children so we have little to base an estimate on. Providing the LCH doesn't come back, Dylan now stands a good chance of living a fairly normal life. His lungs are damaged however and at present there isn't enough evidence to predict how well they will heal or how his body will cope with the scar tissue as he grows so he will be reviewed into adulthood by the lung transplant team.
Q. What are the survival rates for Dylan's condition?
A. Survival rates for general LCH are quite high providing it doesn't attack a major system. Survival rates for Pulmonary LCH can be quite low if not caught quickly and if any respiratory infections are caught. LCH also has a high relapse rate.
Q. Is it a type of Cancer?
A. YES.. despite arguments over its classification over the years it is now recognised most places as a rare Cancer unlike other types of Histio. This is due to the type of cells (a dendritic cell that fights infection) that cause LCH. It can vary from mild (such as skin only) which is most common to serious and life threatening.
Q. Do you accept donations?
A. We do not accept donations personally however we do lots of fundraising for various charities. You can find out more about our two main charities at teamdylan.co.uk
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