Aila

Leukemia, Off Treatment

On the day you were diagnosed, I remember thinking that we were, in that very moment, joining a new world, a new sphere.  I remember thinking about the late-night commercials with the bald cancer kid, thinking about how that is now you, my sweet baby girl.  We are now that family.  Our initiation into this new world was swift and even perfunctory, in some ways.  Your daughter has cancer.  Here's a consent form.  Feel free to read it before you sign it, but don't take very long because we really need to begin chemo immediately.  Like within hours.  No one said it out loud at the time, but it was implicit that the leukemia was killing you, and that without expeditious intervention, you would die within days or weeks, maybe months.  Not years.  Informed consent, but no choice. 

A confusing identity

I taught my first graduate Psychopathology class for the Fall Quarter on Wednesday.  In an effort to get to know a bit about the students, I had them spend some time writing and sharing about how they would conceptualize their top five current life roles and top five values.  I figured that sharing my own values at the end would be a good segueway into my communicating that I value transparency, for example, and really hate when students write the night before the final exam to tell me that their great grandma Charlotte just passed away and that they are stricken with grief.  And, of course, unable to take the exam.

A letter to Zander's first grade IEP Team

Hi Gail,

Two long years...and neutropenia (again)

The two year anniversary of Aila's diagnosis came and went on August 8th.  It was an unremarkable day with remarkable overtones.  So much has changed since August 7, 2015.  And sometimes it seems that we've been doing the same thing over and over again, in an endless loop, for seven hundred and thirty days.  Chemotherapy and CBC, dexamethasone, virus after virus after virus, ativan, risperidone, benadryl, benadryl, benadryl, sulfa, atovoquone, 6-mercaptopurine, methotrexate.  Medicine, medicine, medicine.  Chemotherapy and CBC again...this time neutropenia.  No, no, no!  Chemo hold!  And back on physical lockdown, Aila.  You can go outside but not to the grocery store or library.  Ah, don't touch that!  It's so dirty!  Sanitizer, cleaning products, more sanitizer.  Wash your hands!  Why are you crying. And crying. And screaming. And crying. For hours and hours and hours.  "I want Mama pick me up!" said amidst fear and terror and sickness.  Again and again and again.

(833) 232-1266

For some time, she had had these inexplicable blisters on the soles of her feet.  We kept examining her shoes for wear and tear.  When I took her to physical therapy, she had whined that her feet hurt as she threw herself on the floor and refused to climb the stairs.  I had been mildly embarrassed and more or less unsympathetic at the time, given that she has been enamored of her specialness lately, assuming this was her latest way of reminding everyone of it.