RJ loves trucks. Bruder trucks. Big and realistic. He used to sing a song about the garbage truck!! At three years old RJ was diagnosed with DIPG, an inoperable brain tumor. He was walking across the room and fell and could not get up. He was diagnosed with DIPG on November 24, 2013.
Imagine being in a room with all our family and the doctors as they pull up an image on the screen. Brain tumor. Inoperable. Make memories. These are the words they use. These are the words we heard the day our lives forever changed. Our beautiful sweet boy was going to die.
DIPG is a monster. The standard of care has not changed in over 50 years. The child’s head is strapped into a mask so they cannot move. Thirty radiation treatments. Fortunately , RJ responded well and the tumor shrunk 43%. We were overjoyed. About six weeks after the last treatment he started to regain mobility. We had a good three months and tried to fill it with as much fun as possible.
Progression. This is a well understood and dreaded word within our DIPG community.
RJ’s tumor was progressing rapidly in July of 2014. We were terrified. He started losing his ability to walk and use his arms. The monster takes away breathing and talking and swallowing. A living nightmare.
Sadly, our boy lost his fight on December 1, 2014. He is missed terribly by his dad and mom, his younger brother James and his big sister Eleanor. I will never be the same. My heart is broken. Our superman. I still cannot believe he’s no longer with us.
We need more research.
No child and no family should have to go through this nightmare.
Thank you for caring. His loving ️auntie , Thea
I miss you buddy.
Submitted by Aunt Thea Cornelia