Author Archives: admin

My mom mentioned today that the next two to three weeks are the peak season for the flu. If this is the case this year, Jesse’s primary oncologist is home sick with it. I hope he feels better soon. Since he was out sick, we will return next Wednesday to meet with him about the […]

Ah CVL I thought you’d be coming out the normal way. We’d come in to Day Surgery and have it removed. But Jesse had other ideas, I guess her skin decided that was the boring way. I’d have taken it. Friday began as any normal Friday. Ferfer came in the evening and helped me change […]

Ah sedation… either we are up all night or out an hour to half hour before bed time. Bed time here is 8pm. We read stories, brush teeth, and call it a day. Since I don’t have the girls take a nap during the day, this comes very easily. I found out early on that […]

Jesse and I headed off to radiology this morning for the last test: bone scan. We arrived at CHKD at 7 am (I was concerned that my afraid of the tunnel buddy was back at work, I was right).  Jesse took one last swig of her tea. She couldn’t have any clear liquids after 7:30am. […]

Today was a whirlwind tour of CHKD’s radiology department. Jesse was scheduled for an MIBG test (neuroblastoma puts off a special hormone which when mixed with a nuclear isotope lights up when a special camera is used), CT Scan of her chest and abdomen ( I really hope this means we can stop taking Voriconizole… […]

Yesterday we began the after treatment scans. These scans will let us know if all the treatment have stopped her tumor from growing and contained it to the area right below her kidneys. The first one on the list was the bone marrow biopsy. Jesse and I arrived at clinic at 7:35am. I wanted to […]

Jesse and I headed out to clinic this morning around 6:15. Highlight: made her great uncle jog some while trying to talk to me.  He has started a new exercise plan. If he sticks with me I’ll have him jogging in no time. (Couch to 5k!!!). Traffic was great. We arrived at clinic at 7:15. […]

We are counting down to the end of Accutane. Last Friday of Accutane!!! Poor Jesse is red and peeling, and screaming anytime I approach her with Aquaphor or lotion. We went to clinic on Tuesday. It was a quick visit, but next clinic won’t be because Jesse needs IVIG, which is about a six hour […]

Yesterday Jesse and I made the trip to CHKD for blood work, urine analysis, and exam in preparation for starting the last round of Accutane. After this round, we have just scans…. Traffic scared me. Where in the world was everyone? I actually drove through the HRBT at 55mph… that is far from normal for […]

Mike and I laughed so hard tonight at Jesse’s fortune cookie: “Today you should be a passenger. Stay close to a driver for a day.” As I type this, Jesse is doing just that.  There are days that I feel like she has a little internal homing beacon set to “Locate Mom.” This morning, Jesse […]