The day before neurosurgery is a frustrating combination of interminable waiting punctuated by the frantic urgency to act, all conducted without benefit of even the vaguest structure. It stands in sharp contrast to the dense scheduling of one of our typical days at St. Jude, spent shuttling from one meticulously scheduled slot to another (minus E Clinic, the clinic for brain tumor patients, which is beholden to no clock born of human devising), and it is endemic of the inpatient environment we have encountered at any hospital. Already in the system, it is a simple matter to add another test or procedure through hidden incantations conducted in the obscurity of the famed work room. However, this comes with a price; upon admission, the patient becomes the sworn legal property of the hospital and therefore liege to its whims of timing. Continue reading Memphis Sunrise
Category: Lessons on Medicine
Progress(ion) Report
I realized, after finishing the last very long post, that I didn’t actually go into my originally planned description of the Augusta trip. However, I began writing it in the days leading up to the second on-treatment scan. In the gap between working on it furiously on the plane en route to Memphis and being able to return to it, the scan itself took place. With a lot of anxiety around this milestone, Dr. Gajjar was quite careful in showing me two areas on the spine that might be of potential concern and that he had brought up with the radiologists. These were nothing worrisome, one being clearly a blood vessel (even to me), but he wanted to make sure I saw them before I went on my merry way. With some relief, we started disseminating the news of the all-clear and Colin and I returned to the Tri Delta House to relax before dinner with friends. However, the phone rang in our room and I was met with the familiar voice of Katie, a nurse who had taken care of Colin often when he had inpatient and now works in the brain tumor clinic. We needed to return to the hospital, which meant only one thing.
Continue reading Progress(ion) Report
Colin’s Immunotherapy Treatment
Yet again, I have let too much time lapse between updates on Colin. This time, the reasons are driven externally more than internally. In the quest for an appropriate post-surgical treatment, we discovered a novel option in Augusta, GA, that provided Colin with the elusive combination of a good quality of life and the possibility of durable remission. Although there will soon be a trial open for children with relapsed high-grade brain tumors, Colin is the first child to get on this therapy and is being treated under compassionate use with the FDA. Continue reading Colin’s Immunotherapy Treatment
Happy Mother’s Day
Mother’s Day is billed as an opportunity for fathers and children to express their gratitude for the other 364 days a year that mothers devote to their families. Continue reading Happy Mother’s Day
They’re In
Colin went down for surgery at around 7:00 am and I left him in the OR about 45 minutes later. Continue reading They’re In
No Mo’ Chemo!
Well, it’s official: Colin’s I.V. chemo is done. He received a dose of vincristine Thursday afternoon at 3:22 pm. Continue reading No Mo’ Chemo!
Twelve Hours
Colin has set a new record for readmission, though fortunately not because of a sudden deterioration of his condition. Continue reading Twelve Hours
This Tuna’s Not Going to Japan
Many years ago (well in excess of a decade), there was a magazine article about tuna fishing and the process of selecting the premium fish caught here in the North Atlantic that would fly to Japan. Continue reading This Tuna’s Not Going to Japan
Boomerang Boy
After days of struggling with the aftermath of chemo, Colin started to perk up a bit, so he emerged from the hospital after 25 days. Continue reading Boomerang Boy
Trick or Treat
The children of St. Jude are now asleep, comatose in the aftermath of an orgy of candy consumption. Continue reading Trick or Treat