This is Richard. He has battled DIPG for 22 months and has long been a beacon of hope (along with Mikey) among DIPG families. We are heartbroken to learn that the beast has reared its ugly head and the tumor is progressing. Please read his mom, Stephanies, post and know why we continue to fight in the name of these children. No mother, no child, no family, should ever have to face this.... I havent shared with you all the worries I had bc I needed to know my worst fears were true first. Looking back I see where the progression began. He stopped being able to hold his bowels a month or more ago. Remember him pooping in his sleep. He still does. That cold I thought he had. That is just extra secretions from where the tumor is pressing. He aspirated last week at the beach. My sweet guy left in an ambulance and spent the night at MUSC. Thankfully he only had enough To irritate his lungs and we went home after a night of observation. From then Ive begun to really see how weak hes become. The sad thing about this nasty monster is when it begins to strike again it comes like a thief in the night and strikes hard. He had an MRI on Thursday bc we knew his routine one scheduled in sept was too far away and needed to know. The new spot is much lower in the brain stem and already filling up most of the space it inhabits. My sweet guy. What is his worry this morning?? Its how his sister and brother will cope in his absence. Hes worried about them. He is my hero. The strongest person I know. I am not ready to say goodbye to him. I never will be. We had 22 wonderful months we werent supposed to have and Im so thankful for that miracle. He has been given many and soon will have a complete miracle and be fully healed. While Im happy he will no longer be trapped in a body that doesnt work I am heartbroken. I put my trust in the lord and know he will get is through this. I will never be the same person I was 23 months ago. She left when we learned of his diagnosis. Im now more aware of how many mommies have to go through this immense loss. I cant ever turn my back on awareness. I want to see Gold every in September for my sweet beautiful boy!!!!!
Posted on: Sat, 16 Aug 2014 18:37:52 +0000
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