Today I got a phone call from Jayson Malave, Jordan Malave’s father, telling me Jordan has been losing his balance and one of his eyes has started going inward, just like when Jordan was first diagnosed. Jordan had an emergency MRI today. I went to NYU and saw Jordan and Jordan’s mother. It was so hard to be there, it was heartbreaking. Jordan’s last MRI showed stability and now all of a sudden this.

Tomorrow morning Jordan’s mom will get the MRI results but Dr. Jeffery Allen took a quick look at the scan and said that Jordan had hydrocephalus. This means Jordan’s tumor must be growing and blocking the ability of his fluids to properly drain. I am sure they will suggest a shunt surgery immediately. I hate the word shunt because of all the difficulties that Cristian had from them, for instance the shunt detaching without us knowing and causing fluid build up which caused so much damage.

I want to keep positive and hope this is just a bump in the road and once they address the hydrocephalus Jordan will go back to doing well. I have not been able to stop thinking about Jordan all day. I want Jordan to beat DIPG. DIPG’s such a monster and this is one of many testaments to why we need to find a cure.

John “Gungie” Rivera
Forever Cristian’s Daddy