Category Archives: Jesse Updates

Three days and we’ll be back on lock down in the hospital. Three days to figure out food, clothing, and cleaning for us in that PICU space where she won’t have a private bathroom… And we might be lucky if we get a window. I know that the Ronald McDonald house is nearby, but I […]

I hate the start of these new sections of treatment… mainly because I don’t know how Jesse will react to the drugs they are giving her. One of the side effects (all be it a rare one) is sudden death. Yippee Skippy. This morning Jesse and I will head to clinic to get her consented […]

Of the way done! Radiation ended yesterday with a lot of fan fare (Some good, some I’m just over this) Jesse woke up yesterday morning starving. And when we stopped by clinic to draw labs she screamed for 10 minutes over not being allowed to have a fiber bar until after her treatment was completed. […]

Today Mike took Jesse for her radiation treatment.  They rode up in the elevator with another set of parents and a baby.  The father looked at Mike and said, “Your baby has a tooth ache?”  His wife elbowed him hard in the ribs. Mike explained that because of her stem cell transplant she has to […]

First off I am very sorry for the families of the two truck drivers that were unfortunately killed this morning.  It has made for a really crazy, crazy day for a lot of people. And reinforces that one action no matter how big or small sets off tons of chain reactions. We hauled out of […]

Yeah… my mental function and ability to act rationally drops off. Actually it gets up and runs off screaming. Sure I could sneak food in the morning, but I feel like this isn’t fair to Jesse. Jesse had radiation at 10am and labs at 8:15am. We headed down to CHKD at 6:30am. Labs were drawn, […]

When you are hungry it probably tastes the same as crackers, but I digress… At 11:30am, Jesse’s 7th radiation treatment occurred. Of course, she had not eaten anything since 8pm the night before, and the verset and ketamine are now starting to wear off as we are arriving in the door of the PACU.  I […]

Today began Jesse’s radiation treatments. Her time was set for 3pm. No food from midnight on. No clears after 11am. She didn’t do well this time. I figure that seeing her normal doctor is what sent her in orbit. We had her normal clinic visit at 11am. At clinic when Jesse saw her doctor she […]

I am extremely extremely proud of Jesse and how she handled not being able to eat yesterday. She would tell me that she was hungry, I would explain that we had to wait for the doctor to give us the all clear, and she’s say okay.  Funny little kid. She and I headed for CHKD […]

The past couple of days have been very frustrating and infuriating. And the only thing that I have really accomplished is looking like a whiner. I write this all here not to glorify or make myself seem better, but to free myself because I am having a really hard time getting past it. I am […]