It has been a crummy few days since my last post which was a good day. Pretty much how it goes.
Loggie- bear has been feeling really nauseous and VERY tired. She did not have radiation today as they were doing that system upgrade at the cancer agency today but she is scheduled to have 2 treatments tomorrow. I am not quite sure how she is going to handle it.
In between treatments we are going to BCCH to meet with Dr. Fryer. He was a pediatric radiation oncologist for a number of years and have given radiation to the brain many times. He knows what to look for so he is going to assess Logan and give us a second opinion about the symptoms she is having.
A radiation oncologist with the name Fryer, MY GOD. Imagine all the people that must have been freaked out over the years when they heard his name on the first day of treatment.
“Mrs. Lay, Dr. Fryer is ready to radiate your daughter’s brain now…” ummmm NO THANKS-
He can assess her, but really, he should change his name.
The doctors are toying with doing another MRI to see if the tumor is progressing but they think another radiation oncologist should look at her first. Believe it or not but they are worried about getting false information on the MRI. If they believe the tumor is growing they may think radiation is not working or worth it, when in fact it may only be swelling, or inflamed tissue as an initial response to radiation.They only want to do the MRI if they are certain they might be missing something.
I don’t know. It seems kind of messed up to me. I think what they are saying is that they don’t really know what the hell to do and are afraid that they don’t really know what they hell they are looking at. Not very comforting.
I don’t care what they decide- either way. I just want a plan for her to feel better.
I have this terrible pit in my stomach and I don’t have much confidence in anything right now. It is terrible to let fear creep in and feel hopeless it is very sad and upsetting when she is sick like this.
I try very hard not to cry in front of her. It doesn’t seem fair for me to be the one crying, but sometimes I feel like I am being tortured as well.
To top it off Jared has a man cold- (you’d think he is the one with brain cancer) and now poor Brody seems to have it coming on.
It has been a LONG weekend taking care of everyone and the week of double dose radiation is just beginning.
I am trying to be positive, I mean it is St Patrick’s day today, and I am wearing green, so maybe we will have a stroke of luck and things will turn around.
Speaking of luck and something positive- our friend Kyle is officially done his all of his treatment and his first follow up MRI showed he was in was in complete remission!!!
His nickname is special K for a reason, he is pretty amazing! He too had a very rare form of brain cancer, and he was diagnosed almost the same time as Logan -2.5 years ago. We are going to miss seeing him in the clinic and hanging out with his awesome family but we are glad to see him go. He’s an inspiration to us and helps us believe our time will soon come as well.
We are so proud of your Kyle…..YOU ARE OUR STAR!
