Orchard Park, NY - An Orchard Park family of four received the toughest news of their lives last month when their young son was diagnosed with a brain stem tumor.
"We were at the Science Center having a day out playing, and he started walking sideways a little bit," says John's mother, Dawn Millen. "I was kind of hoping it was an ear infection, a cold, something simple."
But when Dawn noticed something wrong with her son's eye and the way he was walking, she got news she never expected to hear.
"We found out that my almost three year old son has an inoperable brain stem tumor," she said.
"It sort of shatters your whole world," says John's dad, Chad.
Diffuse Intrinsic Pontine Glioma, or DIPG, is terminal. Even with aggressive treatment, children diagnosed with DIPG usually only live for 12 to 18 months.
John started aggressive radiation therapy in October and will finish treatment next week.
"Before diagnosis, John is and was the happiest most runningest little boy that you could possibly imagine. You couldn't slow him down for anything. Now, he's lost the ability to walk, his speech is delayed significantly, so now, we sit around and cuddle on the couch," says Dawn.
Every day, Dawn takes her son to Roswell for four or five hours for radiation treatment. For this type of tumor, chemotherapy usually does not work.
"I think it kind of surprised us all that it was going to happen so quick. It's almost if I walked into a room, I wouldn't recognize my own boy after a month," says Dawn.
Steroids have caused John to gain weight quickly. He went from being a smaller than average three year old, to wearing clothes made for children almost twice his age.
"I think he knows that we're all scared. I think he knows that something's different. I think he knows that his body is changing, but I don't think he knows that he's dying because we try not to treat him like he is. He is living every moment and every joy that we've got. So, as long as we live with that hope, it kind of keeps him shielded from some of the fear and the disappointment that we go through day to day and expectations that we have day to day. We try to shield him so he doesn't feel it," says John's mother.
While Dawn left her job to take care of John, her husband, Chad, still works fulltime.
"A lot of the things I used to do with him I really enjoyed. I can't really do much anymore like playing in the yard and going to swimming lessons and stuff like that. These days we mostly, he really likes his Cars movies and he really likes his Cars toys and he lets me read some books to him particularly ones that have Cars in it," says Chad.
Despite everything that has happened since John's diagnosis, his parents refuse to lose hope.
"I just want everyone to meet John while we've got him and enjoy everything that we can," says Dawn. "You live every moment to its fullest. You take time for your kids, when you think things are a burden, it's just a joy being able to do it. It turns into poopy diapers being a miracle rather than the daytime chore. Outlook is that it's all about family. It's not about what we have, what we gain, what we try to do in this world, it's about spending time with the people that we love."
The family is planning a Make-A-Wish Disney cruise this winter if John is feeling well enough to go.
There is a fundraiser for John and his family in January.
You can learn more about John and his family by clicking here.