Update on the Clark family... i felt this would be an easier way to update everyone.  Keanan recently had a care conference meeting regarding his condition and unfortunately there is nothing more they can do. His tumors for some reason continue to grow everywhere and 2 have a borderline pet scan that we are watching closely and also one on his trachea and one in his leg.  We are going soon to see a urologist for he also has one on his penis.   We are maxed on pain meds and keanan does not want a trach or feeding tube ever. Some day he eats us out of the house, other days we are lucky to get cheese and crackers in him. We are using medical marijuna for comfort which most days that means he will sleep until 2-300 in the afternoon. Its so sad to see a 20 year old some day have a tough time to go from the living room to the kitchen due to pain. it breaks my heart everyday. You know its killing him as well.  This disease is taking away my son day by day. We now have an electric wheelchair for him, but damnit  good luck in getting help from darke county to get help to build a wooden ramp so keanan can go from the house to the outside.  We are waiting to see if lowes offers any grants. So frustrating.,... Its so hard to watch your child with a chronic disease. it takes away their away their freedom peice by peice, no more roller coaster, no more softball,  no more long bikerides and just being able to go fishing all day his love. I do grieveeveryday!~!! it sucks. for everyone..... his brother and his sister. destiny is handling it well but austin is not.  austins mental health is so bad right now. i done even know who he has become. the stress of all these years of watching. there isno help for keanan or austins mental health. some days i put on a fake smile.. im only surviing. I am an emotional mental mess everyday. Everyone post call me text me if you need anything,, some days that is even to much, getting out of bed some days is to much because you know what you have to face that day.. sorry for the long post but ive been holding in so much! wat yourching family suffer keanan and ausitn is the most heartbreaking thing ever.... i wish i had my parents here.. some support someone to talk to with no judgement underanding! this has been long battle and it will continue i just hope i can continue to have the strength to continue it. please pray for keanan and ausitn.. austin  is really suffering... espeially his mential health. he told me hes tires of being that sad lonely person. pray for keanan just to have some pain reliefe and be able to enjoy life a little. love the clarks