Welcome to Aiden's web Page. Aiden was diagnosed with Langerhans Cell Histiocytosis on August 2, 2004 at which time he started treatment and the long road to remission. Aiden has been affected by LCH in multiple organs including his skin, bone and liver. In Sept 2005 additional scans showed that Aiden's LCH has moved to his lungs and leg bone (even with receiving chemo) On January 30th 2007 2 1/2 years of battling Aiden was taken off the chemo therapy for LCH. In April 2007 Aiden was put back on the chemotherapy to help battle symptoms of his liver disease PSC (secondary disease of the LCH) Jan 2008 with a new x ray a new leason was found so we are now back on treatment.

Journal

Thursday, July 17, 2008 12:23 AM CDT

So July 7th we met with Dr. Rand the liver doctor to talk about Aiden and do our 6week followup. since April aiden's spleen has been enlarged. this is new because in Feb it was not enlarged based on the physical exams the doctors perform. so Dr. Rand is in agreement with Dr. Hogarty that we should do the PET Scan to see what is happening with aiden this scan does the whole body and provides better pictures for the docs to see and decide if a change in medication is necessary. So, Dr. Rand mentioned that a Liver transplant may be in the near future = near for me is within my life time so it is a rather broad statement and we will find out more after the petscan. Also, Dr. Rand had difficulty seeing the enlarged lymph but qualifies this with that she not an expert in looking at the CT Scans as radiology is. So we go for pre-op tomorrow at chop and visit with the dentist so that they can hopefully complete a filling for aiden while he is under General A for the PET SCan a stinky thing is that the scan is not until 1:00 pm so all day next thursday he most not eat or drink so this will be very challenging for us but we need to get this done as he is still very thin and that is concerning in it self. aiden is going to be going on his third year in the same size clothing!

Other than that Fiona and Liam are going to be celebrating bdays together fiona will be 4 and liam 1!! I can not believe how time is just passing buy - Liam also decided to cut his teeth two weeks ago and today he is on his third tooth so we are very proud of him!!

keep enjoying your summer and we hope to have good news after the petscan that the LCH is not active anywhere else

Links:

E-mail Author: dcoyne30@comcast.net

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