Author Archives: admin

I think the nurses we had Monday were the least competent we’ve ever had. The day nurse gave the vibe of eh whatever. I told her about Jesse’s v-phen. Normally they take it and register it with pharmacy. She just told me it’s a liquid, they just give it back. But it turned out that […]

Jesse and I headed for CHKD at 6:30am. She fell asleep before we got out of Williamsburg. Traffic was really good and we arrived at CHKD by 7:30am. In clinic Jesse got the chance to play with another little girl fighting leukemia. They had a blast together trying to figure out what they could get […]

I was driving, and I’m not talented enough to video tape at the same time. It’s been a tradition with the nurse that we had the very first night on 8B to race wagons.  And last night Jesse was more into it than ever. She kept telling me to go and would throw herself forward […]

We’re back!!! (and I just discovered if I hold the exclamation key, I get the option for this ! or ¡) So far so good. Jesse is handling the il-2 very well. Last night she wasn’t interested in eating, but it could be worse. We did suffer a “I wanna go home” melt down. I […]

What a crazy one it was… I actually spent the day laughing at myself. Monday began with Maggie, our dog, barking at the front door. She was letting us know that my brother was here to pick her and Chris up to spend 3 days with them. Where we out of bed? Nope… been hitting […]

Wow this week flew by! Yes a strange comment considering we were living in ICU for 4 days.  Jesse’s 4th day of antibody passed quietly. She did spike a fever, but overall she played some and slept some.  Her doctor stopped by in blue before she awoke. When Jesse woke up, I told her he’d […]

Last night near the end of round 2, Jesse began running a fever.  Fever is freaky on its own… But fever in Jesse with the CVL makes me more nervous. And even with a fever of 101.5 that little kid played until 11pm. She blew bubbles, painted, and pretended with her Teddy bear. The night […]

Jesse 6/28/2011 I didn’t sleep Sunday night into Monday night because I was petrified of what could happen. It’s hard not to be when a common side effect of the antibody is severe allergic reaction topped with not knowing how this will make her feel. Monday we arrived at clinic by 7:30am. I stopped at […]

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 […]