Welcome to Janayas Journey Blog. I will be using this blog for multiple purposes... Sharing memories, communicating information, explaining what's going on and for overall ease of keeping everyone in the loop and involved. This will also partly be my sanity... My release, my safe space, my haven... My name is Amanda, and I... Continue Reading →
That's it. No other symptoms to prepare us for what was to come next. Nothing to cushion the blow the doctor was about to inflict upon my entire being. As mentioned, I had her when I was 16... She is all I know. Every decision, every life choice, every breath I have ever taken has... Continue Reading →
We got back to the hospital around 9:30 am where they made quick work of getting us into a room and sending the request for an MRI. It didn't take long for a doctor to come into the room, and it was this moment that started my brain on a journey of thought I couldn't... Continue Reading →
Diffuse Intrinsic Pontine Glioma. Sitting there in the emergency room staring at a large tumor growing out of my daughters brain stem, my thoughts go just as any mothers thought process would automatically go to... treatment options. What can we do? How can we make it go away? How can we save her life? The... Continue Reading →
After being told about the tumor I went to go consult with Janayas Endocrinologist and the nurse, Barb. Barb is someone we have been very close to ever since Janaya was 3 months old, so telling her was no easy feat.. She already kind of knew by the time I got there due to the... Continue Reading →
Driving up the driveway, walking up the steps to the front door... It all felt like an out of body experience. My chest felt tight, my legs were wobbly and my feet felt like they were weighed down by cement blocks. Jay put his key in the lock and opened the door, we walked in...... Continue Reading →
Arriving back at the hospital felt like a weight off. She was okay. Well.. for lack of better words I suppose. There she was laying in bed, playing a color by numbers game on the Ipad her uncle gave her. I was able to breath for what felt like the first time since I left... Continue Reading →
I have been trying to stay chronological with my posts, however I have formed a sort of writers block as of late.. And by that I mean nearly two months now. My thoughts seem to always reroute itself back to one thought.. The truth I can't escape from. So here it goes.. A glimpse into... Continue Reading →
Take the chance and proceed without radiation and steroids with a laundry list of side effects or proceed with radiation knowing there is a great likelihood of buying her more time. This is the hardest, fastest, most self-conflict-inducing decision I have ever had to make. This was my thought process: Some parents have decided to... Continue Reading →
