Saturday morning was a lazy one, but I determined to hit the loop inside of St. Jude’s campus before it got too hot for this Yankee girl to even consider it. The sun was already insistently warm before 9 am, but I figured I had enough time to squeak in a reasonable run before it became unbearable to my delicate constitution. The previous 24 hours had been full and draining, leaving me an exhausted heap curled around Colin in the blessedly comfortable bed at St. Jude’s Tri Delta House on Friday night. He had asked me to snuggle with him and I happily obliged, but in the morning I woke up still wearing Friday’s clothes. Continue reading Plans and Perseveration
Category: Chemotherapy
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
Put Me in, Coach
As Colin’s trajectory moves unevenly but steadily upward, we have also been taking him out into the world to finally do what he could not a year ago. Continue reading Put Me in, Coach
No, No, No, How are You Doing?
Perhaps I was naively unconcerned about Colin’s latest scan. Continue reading No, No, No, How are You Doing?
Homecoming
On Wednesday, May 25, Colin boarded a plane in Memphis and finally made his way home. Continue reading Homecoming
Survivor: Target House
There is no immunity challenge, and Jeff Probst doesn’t sit us around a campfire to discuss who is next to go, but living here is beginning to feel like a warped version of the Survivor reality show. Continue reading Survivor: Target House
Winding Down*
Our family’s time at St. Jude is drawing to a close. Continue reading Winding Down*
Operation Radiation
Colin’s final radiation treatments found us at Methodist Central, an adult hospital not far from St. Jude in midtown Memphis. Continue reading Operation Radiation
Reset Button
Colin’s second week of radiation was grueling: vomiting, utter fatigue, dangerous aspiration and an unexpected stay in the hospital. Continue reading Reset Button