A Rollercoaster Week…or Maybe Waterslides!!

End of May 2018, LJ turns 3!!

How do you celebrate your child’s birthday when you are being told it could be his last on earth?


Obviously we would have went to Disney or the moon even, but LJ was almost finished with radiation and we couldn’t go very far so we went to The Great Wolf Lodge! We got his port de-accessed on Friday after treatment, got in the car and drove to the Great Wolf Lodge! We were met there by Torie and her boys, and Papaw and Mimi! We were all excited to spend time together and enjoy this very special weekend. 

Excuse the fresh out of the waterpark faces…also, LJ was really having fun!

The first night we settled in and enjoyed the resort! We made wolf stuffies, ate candy, played games, and as soon as LJ went to sleep we got to work decorating the room!

This was the first time I wasn’t throwing a birthday party for my kid and this was the most important birthday we had celebrated to date, so I wanted it to be as perfect as it could be! Sissy was the greatest helper!

The next morning, Saturday, May 19th, 2018, LJ was THREE years old. I was terrified of this date since February 13th, I knew May 19th would come but I was unsure if our baby boy would be on Earth with us and here we were. 

We went to the waterpark to enjoy our special birthday boy’s cabana! 

We went back to our room for presents, piñata and CAKE!! I was so excited for his cake because this was the first cake I (or Deanna) didn’t bake for the Barnes kids since 2015! It was really fun (aka stress free) to have cake prepared safely in a gluten free kitchen by a professional! And it was so perfect! 

Toy Story themed and everything! We had such a hard time picking out a theme for his birthday. He wanted everything, and we almost did like a pack of plates this character, napkins this character, etc. I walked around the party store fully aware that this could be my son’s last birthday party. I wanted every single theme! We landed on Toy Story and ran with it!

LJ’s birthday weekend included time with Papaw and Mimi and Nana! 

We were also well aware of how all of this was affecting our sweet girl Emmaleigh. She has been such a trooper this spring in Cincy so we had to do something a little special, just for her, during her brother’s birthday weekend! 

We left the Great Wolf Lodge feeling really refreshed and grateful that we were able to celebrate another year of LJ’s life! He went back for his final mini week of radiation on Tuesday. His final round of radiation was on May 24th, 2018. He received 30 sessions! 

And just like that, the known “treatment” for DIPG was over. LJ was finished with treatment. Now we were about to dive into the very uncharted waters of pediatric cancer clinical trials. When we were approaching the end of radiation all I could think about was that this was the beginning to the end. When he was first diagnosed it was etched in my brain that he would receive radiation, the tumor would shrink, and about six months later it would come back and take his life. We were ending radiation so now it was time to wait. Wait for my baby to die. It was terrifying. I felt helpless, I mean yes there were clinical trial options but this was the only known treatment and it wasn’t even that. It was just a bandaid. A bandaid on a brain tumor. 

Watching my baby bang that gong was a moment of both triumph and terror. 

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