Author Archives: admin

You served us well dear CVL, But alas she had to grow So now you hang out in a vein That is too shallow. Cheesy yes. But as I was writing the title it made my think of rhyming.  And I have not had anything to drink today, but if Chris keeps pretending to be […]

Today was beyond frustrating… I padded Jesse’s diaper before we headed down the road. At least I was able to avoid the stress of trying to get a urine sample. However her lines, her lines had a different idea. When we arrived at clinic, we weren’t on the schedule.  They were very gracious and added […]

Sorry I have been delinquent in writing. Jesse has been fairly active this round making writing and getting work done difficult. On Tuesday, Jesse and I came to clinic. We were late because traffic has returned from summer vacation. At clinic Jesse’s white line was the only line that would give us a blood return […]

Jesse and I made the early trip down to Norfolk on September 2nd. I was hoping that this would be a short visit due to potential holiday traffic. I should know better than now to make those kind of wishes 🙁 I was amazed at the amount of police officers I saw. I saw 10 […]

The last few days have been interesting. It was very different when small people weren’t involved in riding out hurricanes. On Friday, Jesse and I were supposed to travel to Norfolk to get her shot so that we could begin the 3rd round of antibody. This shot is given 3 days prior to beginning the […]

Well Jesse’s CVL is just like her. Ornery! For the last two days when I have flushed it and drawn back (mainly out of habit now) it has shot blood out at me. Currently thought the plan is to see our oncologist on Friday, and then decide if she needs to have it replaced. This […]

Yep it’s not, even though Jesse is smiling. Jesse and I headed out at 6:30am to clinic for labs. This lab was a fasting lab because they wanted to check her triglyceride level. Being on the Accutane can elevate this level. When our nurse tried to draw off one of her CVL lines, nothing. She […]

So my last post was less than glowing, but I needed to get it out.  Anyone with a 3 year old can tell you they are testing the boundaries… the “terrible two’s” … walk in the park. The 3’s are far more terrorizing for me anyway. And I am human. We all get frustrated with […]

What a day. What a weekend. Not sure if the antibody and il-2 combination have turned Jesse bipolar or she’s just 3. We came home Friday evening, which was great because we missed the traffic. Jesse stayed awake until 10pm. She napped earlier in the day… And that usually equals a later bed time. Saturday, […]

My husband Mike wrote this during his recent stay with Jesse in PICU. I asked him if I could share his words, and he told me that was his intention, but wasn’t sure how to get it on the blog. He wanted to share his view point. I’m really glad that he has wanted to […]