While waiting for test results to guide our treatment decision making, we have been making progress on Eli's list of things he wants to do. Basically it's his bucket list, which, as it so happens, I had the foresight to start work on many months ago, since, it appears, foresight as to where this journey …
Coming out of anesthesia Even though there is no intent to cure, there are still treatment options that may help keep the cancer at bay or slow progression. In order to determine what options may help, Eli's arm tumor is being sent for genetic testing. It will probably have the same genetic makeup as his …
Years ago, when Eli was four years old, I had a sewing client who needed a dress altered for her niece. Her niece had recently died from brain cancer and the white dress they wished to bury her in was too big. I remember feeling so sad for the family who had to bury their …
A conversation with Eli's doctor over the weekend verified that they had come to the same conclusion we had: Eli's cancer is back and metastasized. The MRI was sufficiently definitive. We are now doing the PET/CT, which will tell us to what extent it has metastasized. We know it's in his arm, thigh, and foot, …
The look of someone who really didn't want their picture taken. Today is MRI day. MRI day always reminds me how amazing Eli is. It is common to think of any kid with cancer as a fighter and to be in awe at what s/he has to go through so early in life. These kids …
Leaving the clinic The basic conclusion at this point is we don't know what it is. There are benign possibilities, so we are hoping for one of those. But we have a plan to figure it out. The Plan: First, move up the scans that were supposed to be the beginning of June. PET/CT is …
If you managed to make it to the end of my last post, you may be wondering how things ended up with Noah. Let's start with Eli's milestone. Celebrating a Milestone A common event in many children's hospitals when a child has completed their cancer treatment is a bell ringing celebration. Eli officially finished his …
Continue reading Sometimes I like being right and Celebrating a Milestone
This is end of treatment scan week. Murphy's Law seems hard at work. To start, I've been a little more anxious than last time and my usual equilibrium hasn't been as stable as I like. As with past scans, I've been avoiding making scheduling decisions for a couple weeks until I have the reassurance that …
Eli has had many interesting conversations with the various health care staff since this journey began. Whether he is instructing the nurses in proper port access procedure, texting riddles to his surgeon, teaching card tricks to the health tech, sending treats and notes to the lab, trying to stump the radiation oncologist, or giving feedback …
Eli The Boss 