After a recent conversation with our team at Primary Children's, they recommended getting a second opinion, so arrangements were made to meet with the doctors at Children's Hospital of Los Angeles. That is what we are doing today, the last day of our visit with my sister Mayreen. Other than confirming Eli's prognosis and having …
While camping at the beach at South Carlsbad, as per one of Eli's requests, see wish #4, Eli decided he wanted a leaf from a palm tree, see wish #31. However, the rules at the campground didn't allow for tampering with the vegetation, so we didn't let him keep the palm leaf he had pulled …
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. …
Trying to decide on a relapse treatment plan was much more difficult than I had anticipated. When I read the MRI results back in May, I was devastated, but determined to push through whatever miserable chemo combo was on the menu for relapse. Instead, we were told there wasn't a plan because nothing would cure …
In order to reduce the work of celebrating the kids' birthdays each year, we only do birthday parties with friends on even number ages (thanks for the idea, Mom and Dad). It also happens that 7 of our 9 kids were born in an even number year, so we have lots of birthday parties to …
I spent most of today dealing with medical bills that have accumulated in the last month and a half. I had been too busy doing fun things with Eli and the kids and researching treatment options to bother with such mundane concerns. The biggest frustration was trying to get some billing mixups fixed, so I …
Eli's bucket list Progress has been made on the list of things Eli wants to do as well as on his workshop, courtesy of Make-A-Wish. While they are providing the structure and many of the accoutrements Eli wants on the inside, they do have a budget, so not everything he wants will be included. Ground …
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 …
Eli The Boss 