Day 1: I am not the person I used to be…

Day 1: “I don’t have a name. I don’t know what to do. ”

From the outside in. That’s how I said Ewan would be working on us in this bigger puzzle called life at his memorial. I didn’t realize it was the FOIL method. I am sick to my stomach of acronyms and mnemonic devices. ALL, CART, RICE…. Spell it out, for gods sake. Give it words and a name, texture and real meaning. Today, I am angry that no one told me about advanced stages of leukemia. Maybe there aren’t any, but having cancer in the liver and kidneys should have been a clue that his disease had advanced. Advanced to what? To the next level in the game where everything get faster and harder to beat. It was back in January that spots were detected, (I’ll have to verify), but I was under the impression that disease was still extramedullar and treatable. This is the kind of information that should be spelled out — no acronyms, R/R ALL (relapsed/refractory acute lymphoblastic leukemia).

In cases where leukemia spreads to the liver and kidneys, someone should say, “we see 95% of those kids live less than 3-4 months more”, or whatever the data does say. I wish I would have known so I could have bitten into legs like a mad, rabid pitbull to get aggressive treatment made available to Ewan sooner. It wasn’t fair to keep him on the AALL1331 (not an acronyms and mnemonic devices, but rather the name of a study trial). He should have been offered the monoclonal immunotherapy drug blinatunamab. We know it works for adults. Or Inotuzamab. Or any mab….a la cart or combined. He should have been enrolled on PLAT-05 sooner (the name of an an acronym and trial – Pediatric Leukemia Adoptive Therapy). I am mad we didn’t know more and that he didn’t have more options sooner.

In that regard, I am still the same person — the one who wants more information. I am still curious but now to the point of pathos and agitation. In this case, the one case that mattered most, the cost of the lack of information was too high. Ewan’s life was too high of a price to pay for not having answers. I am deflated and destitute, void of any answers that matter.

“What’s for dinner?”

“I don’t know.”

This is why I am not the person that I used to be. I have no answers, no imagination and no beliefs. I used to be someone who believed anything in life was possible. If you imagined it and put in 10,000 hours it could be created or mastered. I feel like I put in 10,000 hours at Ewan’s bedside but no effort or energy or mastery could change the outcome. I am now a helpless, non-believer in the power of possibilities. Sure, I will tell you that we have to keep trying, we are all connect in some great, big puzzle that Ewan is now working on from the inside, but I don’t believe it.

What happens after we die is truly a black box of unknowns. I wander from person to person, from town to town, seeking out information of what happens next. I am waiting and hoping to unearth that buried treasure of answers. Maybe its hidden in the words of an existentialist. Is life absurd? Is it in the remains of a mummified remains of a child scarified to mountain gods and buried underground then encapsulated and preserved by ice? Juanita the Ice Maiden. Or will I find it in a painting from an artist who also died too young, around the turn of the last century? Nikolai Astrup. Should I turn to a religion that offers hope, peace and comfort? If you were righteous, your spirit will be “received into a state of happiness, which is called paradise, a state of rest, a state of peace, where they shall rest from all their troubles and from all care, and sorrow” (though, this does not bring me much comfort since I am not righteous, which means I would not be received and reunite with Ewan in paradise. No one would dispute that an eight-year-old is righteous).

The only thing I know for certain is that nothing stays the same. I know loss is real. Death is real. Happiness is temporary. Nothing stays the same. And I don’t know what is for dinner. Whatever it is, there sure as godddamned hell will be no aluminum FOIL associated in the making of it and it might taste bitter because, today, my name is Angry.



Beautifully written. I feel the anguish of having no recourse, no ‘rewind’ button, no answers. Thank you for sharing.


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