April 15th.
The fundraiser in Edmonton was incredible. The whole evening was full positive energy and support for our family and I want to personally thank all of you who came out to show your love!
I was so grateful for brother and his great group of friends for organizing this event for us.
The bands that played were both fantastic. James Reid (a childhood friend) began the night by playing “lean on me” Loggies favorite song and ending with a song that he wrote for our family called 15minutes.
Unbelievable.
The song was so spot on and I couldn’t for the life of me, imagine how he could possibly understand what we are going through and articulate it so perfectly. As I listened to his song, I cried. He is a great musician but he is going to make an incredible doctor if he understands his patients on this level.
Friends of Otis also amazing. Great music and equally as awesome guys. I felt so blessed to meet them all and honored they would come out and do this concert for us.
The whole night was filled with surprises. People I haven’t seen in years and didn’t even know lived in Edmonton came out. It was filled people I never met, but are part of this group. I was in awe thinking how one little girl and her situation has connected so many people. I had no idea.
We flew home Sunday and our hearts (and pockets- thank you) were full. Logan was in the midst of a really bad headache and Grandma and Auntie Betty looked frazzled.
So first thing the next morning we headed to Children’s to have Logan checked out. Dr.Hukin is most concerned about her spine. It is now quite sore even to the touch and the tingling in her legs has progressed to her feet every time she stands up.
An X-ray was ordered and it showed a small change in her C3 vertebrate. They compared the Xray to the previous MRI and there agreed there is some small change but decided not to jump to conclusions because comparing these two types of images are like comparing apples to oranges.
They still don’t want to do an MRI until the end of radiation and because this seems new change seems to be in the bone and not soft tissue they are thinking bone scan.
We also had a ESR test to determine Logan’s inflammation levels. Normal is between 0-20 and Logan’s results came back a 24, or slightly elevated. We have never had that test before so I am not sure exactly if that is ok- or bad.
We asked if increase in ESR levels was from radiation. The told us probably not. It makes no sense to me.
So no answers until after the bone scan I guess.
And I am losing my shit.
I am taking some comfort in the fact that apparently it is highly unlikely this is tumor in her bones. However it is possible, and if it is a tumor then it would definitely not be the same type of tumor she already has because her tumor grows in soft tissue not bone. If it is tumor, it is a new tumor and we are basically fucked.
So highly unlikely is what I am going with.
After all they are the doctors which means they are probably right, right?
However highly unlikely has never been a good term for us. In fact highly unlikely always seem to indicate the opposite for Logan.
It has always been highly unlikely that Logan’s somewhat low grade tumor would progress this quickly
but it has.
It is highly unlikely that it would spread from the brain stem to the rest of her brain
but it has.
it is highly unlikely that it would ever spread to the spine
but it has and now we see another new tumor on the last MRI.
Highly unlikely worries me because it usually means….very likely.
Worry doesn’t help. I know. I get it. I need to be positive. But being positive until we get the results of the bone scan- well that is highly unlikely.
Loggies counts are also dropping. No white blood cells once again ANC.7 and plateletts are 70. Which for cancer people isn’t too bad but last week her ANC was 4.5 and her plateletts were over 300. So the radiation is now taking its effect on her marrow.
Funny enough her hemoglobin is still alright. No blood today, but likely by the end of the week. We will do blood work again on Thursday and see if she needs a top up. The effects of the radiation are about 2 weeks behind (so different then chemo) so we are really only seeing the effect of her treatments from April 1st.
It is such a roller coaster. One minute flying up the tracks in the right direction and the next minute you are totally upside down with fear.
It is crazy and all you can do is buckle up and go for the ride. We trying not to look to much behind us or too much in front of us. We need to save our energy, and we need to continue riding the roller coaster. There is refund and we can’t get off yet.
In the words from James song-
“we will get through this as a family, that we will get through this eventually, and in 15 more minutes my whole life could change, and in 15 more minutes it’s all been rearranged but I can’t hold on if you let go………..”
We won’t let go.
