The After Math Pt.1 – Feb.21/18

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 neurosurgeon already letting them know,  but it didn’t make it any easier. My mother, Jayte and I sat there talking to her and explaining it just didn’t seem real.. It didn’t seem like Janayas story I was telling. We talked about what this meant with her prior condition and how it’s never happened before, how veteran doctors have never heard of this happening. I remember her saying

“we get one bad thing.. just one. This doesn’t happen”.

After talking to Barb, we went back to emergency and finished up with the doctors. He finished showing us her scans and then we waited to be admitted. It felt like days before we were moved upstairs to a room in 4D2. Once we were there, after settling in and gathering my thoughts I knew it was time to tell the family… My mom offered tell some face to face before the rest came, so my brother was told first because my mother needed his support when she went to tell my grandmother…

One year before I found out I was pregnant, we buried my 10 month old niece who passed from SIDS. My sister was living with my grandmother at the time, so she was quite close with that little girl. A year and a half later, my daughter was born flat line and revived. Three months later, my daughter had a seizure and is diagnosed with a life changing condition. One year later, my aunt was diagnosed with Mastocytosis and Leukemia, I have a molar pregnancy aborted. One year later, I get hit by a car as a pedestrian. Another year, appendectomy for me… Just to name a few. We have had a very rough go, and now the thought of having to sit with my grandmother and tell her the diagnosis was like a bottomless put in my stomach. A black hole of dread. I couldn’t imagine how my mom felt…

A couple hours after we were admitted upstairs people start trickling in. My siblings, my grandmother, my aunt and uncle, cousin, best friends, her fathers family.. I remember when my brother walked in. I was just walking out of the room I would later tell my family the diagnosis in, and we just looked at each other with sadness in our eyes and hugged. I wasn’t sure who was holding who up as both of our legs almost gave out several times, but I haven’t hugged my brother like that since I ran away when I was 12… Every one was asking questions, so I decided to get everyone together in a room to tell the story once. Continually saying it was like repeated blows to the chest, so once was a lot more doable…

Right before I sat everyone down, only 4 hours after receiving the news, I met Doctor Eisenstat. He is the Department head for Oncology and quite the big deal. He has also personally dealt with DIPG so if anyone was able to help us understand and potentially help us find a way to fight, it was him. I’ll be honest, some of the conversation was blurred by pure exhaustion and remaining shock, however it was a conversation that made me understand everything a lot more clearly. Every thing he said made sense and I could hear the regret in his voice when he spoke. He wanted to get a Geneticist involved (as mentioned in a previous post) to see if there is actually a link to a mutated gene and for the slim chance that we may find some type of treatment option within our DNA. I needed him to re-explain things again when I seen him a couple days later, however it was a conversation that help ground me, even for a moment.

After our meeting with Dr.Eisenstat I gathered my family together in the play room that didn’t have enough chairs and was probably a little too cheery under the circumstances with its blue walls and floor, toys and board games put away neatly in the built in wall cupboards. Janayas dad stayed with Janaya while Jay and I addressed our family and friends. I told them what it was, what it meant, treatment options and her time frame. There was tears and lots of hugs however not much to say… There isn’t really anything TO say in instances like this though. Only love and heart break.

Every one slowly started trickling out, leaving us breathless and exhausted at Janayas bedside and unsure of what to do next. We decided that Jay and I would go home for the night and grab some stuff while her dad stayed with her for the night. We played some games and then at 10pm, we headed home on one of the longest drives home I had ever had.

To be continued…

 

I have completed the ‘About Us’ tab for anyone who is interested in reading it and seeing photos of Janaya 🙂

** Date the post was written was changed to allow posts to show in order **

** Originally written February 21 **

 

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