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 …
Eli is pretty amazing. His three weeks of daily radiation began on Monday. He's really had a great attitude about it. He had a few hard days in August, but once he arranged for regular VR play time while at Primary Children's for clinic visits, he's been much happier. Before one of his trips up …
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. …
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, …
Eli The Boss 