We found out in July of 2015 that Max had DIPG and we were told then that he had 12 to 18 months to live. It was like a nightmare you could not wake up from. Max was so brave and so strong through it all. He had his melt downs, not nearly as many as me, but he never let anyone else see them.
When we first found out his biggest disappointment was that he would not be going back to school in August with the rest of his class. I know really a kid who loved school. He had to cyber school and he did not like it at all. So he asked his Doctor what he had to do to get back to school. Dr. Graves told him his treatments and physical therapy. Max worked hard at therapy and the treatments worked hard on him but by the middle of January he got to go back to school. I was never so scared to have him out of my sight but the look on his face when he got on the bus, I can not even find the words to describe it. Granted he could only go for a couple of hours each day. The difference it made in him, a new boy in front of my eyes. The days took a lot out of him and the kids and teachers at his school were and still are fantastic. They sent him cards when he was home and at school so many of them went above and beyond anything I could imagine. They knew he would not be around for their senior trip to Disney so they had fund raisers to not only send him but also his brother, aunt and mom of course. To this day I can not get over how wonderful these people are.
Unfortunately that was the last trip Max got to take. Not long after we got back he started getting worse and the MRI showed the tumor had grown and he was to only have a few weeks left to enjoy everything. So he spent as much time with his little cousins, his dad and the rest of the family, oh yeah I can not forget his dog. On May 24th he took his last breath with mom dad and big brother there to watch over him. Not a day goes by that I don’t think of him or miss him. But I see signs that he is still with us. He is the bravest most strongest person I will ever know.
No one deserves this – no child, no family, no one. The pain is never ending for us. Thank God not for him. It bothered him that his smile was crooked and he couldn’t walk right. Now my Angel can smile and walk like no one’s business. I loved the smile. I love my boy. For anyone going through this, make the most of everything, and don’t ever stop believing someday there will be a cure.