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Scan results

Updated: Apr 3, 2024

Results are in, but they may well as be in German. 


We are making our way through the language and pictures with help from friends, but its a lot to understand or even hear.


Here is what I do understand.


The tumor has shrunken, around 40-50%. This is good. There is also more calcification of the tumor. This is good. 


The aorta looks straighter. The tumor was pushing the aorta away from the spine, but with the shrinkage, it is back. This is good.


The tumor is still wrapped around loads of veins including the aorta. This is not good. It is still large. Instead of an XL, it’s an L. This is reality.


I also know this.


My son jumps like a frog. With his cords and all, he jumps his way around the house.


My son is not tired. He protests sleep. He wants to play.


He poops easily. This is VERY new to us. We spent a year dealing with his constipation.


He can yell like a lion. SCREAM. He does not present as a “sick child.”


This I’ve seen with my own eyes.


So that’s the update. 


All I want to know if it shrunk enough for him to only have one surgery. This we probably won’t learn until tomorrow.


So we continue to wait.


Wait and then wait some more.


We wait.

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