Ryans fight against Langerhans Cell Histiocytosis (LCH).

2 years ago
Team Xplore's picture
 
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This is the brave story of my son Ryans fight against a rare blood disease called Langerhans Cell Histiocytosis. Ryan was born with Langerhans Cell Histocytosis, however it was not diagnosed until he was 4 months old (and had progressed to Multi System Langerhans Cell Histiocytosis in this time). The disease had really got hold of him at this stage and was killing him. This video tells the story of Ryans battle with this disease and his journey so far. I really hope this video will raise awareness of this rare blood disease - Langerhans Cell Histiocytosis. Update 17th April 2013: Ryans review/scans/tests went very well in Our Ladys Childrens Hospital, Crumlin, Dublin. After 2 years & 2 months of chemo, Ryan has finally finished! He will be closely monitored by his Consultant Oncologist for a long while yet with frequent checks ups/xrays/scans etc. He will continue the TB medication for another few months until his immune system has built back up to a safe level for this medication to be stopped. Please God the LCH will stay well away now that Ryan has finished chemotherapy. He is doing really well, he is full of life and living life like a normal 2 & half year old little boy! Update November 2013: Ryan is now completely medication free. For 2 and half years, Ryan has been taking daily TB medication and 'Septrin' at weekends (to protect him against serious pnuemonia), Ryans immune system is now back to normal (confirmed by a special blood test called a CD4 blood test). His medical care has now been transferred to our family GP (not the local hospital which is 30 mins away). He will still have regular check ups/xray/abdominal ultrasound by his Consultant Oncologist in Our Ladys Childrens Hospital, Crumlin, Co. Dublin every couple of months. He turned 3 years old in November 2013 and has started playschool two afternoons a week and he absolutely loves going. Please God the LCH will stay away and let Ryan finaly live a 'normal' life.