I’ve seen dark before, but not like this
This is cold, this is empty, this is numb
The life I knew is over, the lights are out
Hello, darkness, I’m ready to succumb
I follow you around, I always have
But you’ve gone to a place I cannot find
This grief has a gravity, it pulls me down
But a tiny voice whispers in my mind
You are lost, hope is gone
But you must go on
And do the next right thing
Can there be a day beyond this night?
I don’t know anymore what is true
I can’t find my direction, I’m all alone
The only star that guided me was you
How to rise from the floor?
But it’s not you I’m rising for
Just do the next right thing
Take a step, step again
It is all that I can to do
The next right thing
I won’t look too far ahead
It’s too much for me to take
But break it down to this next breath, this next step
This next choice is one that I can make
So I’ll walk through this night
Stumbling blindly toward the light
And do the next right thing
And, with it done, what comes then?
When it’s clear that everything will never be the same again
Then I’ll make the choice to hear that voice
And do the next right thing
Songwriters: Kristen Anderson-Lopez / Robert Lopez
https://youtu.be/K2WQkZwpRIsThe Next Right Thing lyrics Β© Walt Disney Music Company

As I feared, even though Eli’s cancer had a partial response to the Regorafenib, because there is a new spot, they consider that to be disease progression. It is no longer considered beneficial to continue with the current med and it’s time to decide what’s next.
Option 1: Chemo
The chemo regimen Eli’s doctor considers to be the most likely to be effective at this point is Vinorelbine/ Cyclophosphamide/Temsirolimus combination. This is a weekly outpatient regimen, involves hair loss again, but, if it is working after the first two cycles, will involve the possibility of radiation of the active spots.
Option 2: Clinical Trials
Our doctor helped narrow down to a handful of options that he would recommend and talked us through the ones that he felt would be most attractive for our situation. The top two choices seem to be a combination of immunotherapy medication or CAR -T cell therapy.
Option 3: Not treating the disease
This option is to focus solely on managing side effects. We could do this for awhile and start a treatment later or not, depending on what we feel like.
We will be discussing these options with Eli to decide what the next right thing will be, since any decision will be the right one.

Rhabdo sucks. Triton has been fighting for over 4 years now. Based on our experience I would suggest going the trial route. Triton didn’t kick his Rhabdo with the Vinorelbine/ Cyclophosphamide/Temsirolimus combo. The Cyclophosphamide damaged his bladder walls and caused Hematuria. (If you go that route, make sure they always remember to give him Mesna!) Now we need to heal the Hematuria before he can get on a Trial. Lots of prayers for Eli and all of you. The choice you make will be the absolute right choice and the best choice. π
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YUCK!!!!!!!
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I love that song. Makes me cry every time I hear it. Prayers for you all as you “make the choice”…ππΌππππΌ
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