The day was Thursday March 7th 2019 when I decided to call my sons Pediatrician to get her to refer me to an ophthalmologist (I thought his left eye had been “wandering”) They set me up for 11:10am the next morning the8th. I explained to her what I was seeing, she agreed but after interacting with him for a few she asked him to do a few things. I saw the concerned look on her face as he ran up and down the hall as she requested. She said something just doesn’t seem right. She made a phone call and said they are waiting for you there, I want you to get him an MRI just to be safe. So that’s what I did! After going back and forth with a few different doctors we ended up being admitted overnight and ended up doing a “quick” MRI on Saturday March 9th. We waited and waited for them to tell us to go ahead home and refer us to the eye doctor. After several hours, 6 people walked into our room to tell us they found a large mass on Kingston’s Brain. They wanted to do another Full MRI the next day to get a better picture. But on Sunday morning the Doctors asked to see us in another room where they told us the MRI was not necessary and they were certain what he had was Diffuse Intrinsic Pontine Glioma better know to us now as DIPG. They wanted to start Radiation on the coming Tuesday. Which at the time was the only thing they were offering to do...so after radiation then what? No ma’am that’s all!...WHAT???? Not accepting that...We ended up speaking with several other hospitals and decided to go to St. Jude in Memphis Tennessee where he was accepted into a clinical trial. Which is where we are today! He will go through 30 Radiation treatments then we will proceed with the trial after a short break!
This is where we will share his journey! I have one strong little dude who is going to be the miracle he has always been and find the cure for this demon! We HAVE to get more people aware of this “rare NOT rare” tumor that is hurting our precious babies!! There is not enough funding and not enough awareness! Help us do this by sharing his story!
