Last post Eli had been exposed to Covid-19 at the hospital while there for surgery. A couple days later we found out that his sister tested positive for Covid-19, so he was exposed at home. If she had more of a social life, it wouldn't have been a surprise, but she only goes to work, …
That is Eli's typical response when asked how he's doing. What does it mean? It usually means that he's doing fine and is in a good mood. Today, we are starting a different treatment. We are back to trying chemo, a different regimen, but chemo just the same. Same as always. We're easing back into …
I've seen dark before, but not like thisThis is cold, this is empty, this is numbThe life I knew is over, the lights are outHello, darkness, I'm ready to succumbI follow you around, I always haveBut you've gone to a place I cannot findThis grief has a gravity, it pulls me downBut a tiny voice …
It's that time again. Time to see what's going on with the cancer in Eli's body. Since I can feel Eli's thigh tumor, and a couple of the tumors we radiated in September, without scans I could tell that radiation did a good job of shrinking the foot and arm tumors. The thigh tumor, which …
Me waiting while Adam is taken to imaging When I was writing the last post, I was sitting in the emergency department at our local hospital with Adam, trying not to use all my phone battery. It was Friday and the day had started off pretty typically. At 8am my alarm went off reminding me …
Cycle 1 After three weeks of Eli's new medication, he will get to take a break from it for a week. This medication is given in 28 day cycles: 21 days on, 7 days off, and will repeat until it stops working. Within a week of starting Stivarga/Regorafenib, Eli could tell his thigh tumor was …
We usually think of being photogenic as looking good on camera. What do you call someone who looks good on scans? Eli is having his MRI now and negotiated with the nurse when she would put in his IV for the contrast. During said negotiations, she mentioned how good he is at getting his MRIs. …
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 …
Eli The Boss 