Day 20 at St Jude

Around 10pm last night, something clicked inside Jesse. She wanted to play and was wide awake. Plus she was hungry. We face timed with family in North Carolina around 1am. A little after that Jesse was ready to lay down. She has been trying to avoid spending time in that bed, and I don’t blame her.

Around 10am we both awoke. I remember the resident talking to us sometime around 8am. Jesse woke up worrying about the 2 shots for today. The nervousness of waiting till 12pm for the IL-2 and GM-CSF shot messed with her appetite. But once the shots were done, she ate an entire container of Lucky Charms. She also ate half a snack bag of pretzels. Hopefully this will keep the nutritionist at bay. Her weight did go down .1kg (.22lbs). The good news there is we are done with IL-2 shots until next round.

Jesse has been saying her pain level today is a 2. This is great because we’d been staying at an 8.

The infectious disease doctor stopped by to tell us that we wouldn’t see them everyday now. She will have the vicamycin for her leg and labia for 14 days and mirapen (sp?) for 10 days to treat the E. coli.

The nurse mentioned Tuesday now for the nephrostomy bag removal. I hope it does happen then. It will be nice to have Jesse free of those bags. They have served their purpose.

I have noticed more over the last few days that her vision has become blurry. A side effect of the antibody is causing her pupils to dilate and stay dilated. I am hoping that Monday the optometrist will pay her a visit and get her some glasses.

It’s 3:30pm now, and we haven’t seen a fellow or attending doctor. I am hoping that their not dropping in means Jesse is on the up swing in their book. We haven’t seen the pain team either… or the research nurse for the “Ethel” study. Jesse is on Day 3 of that study. We have 2 more days of them putting the ethanol or placebo in her lumins every day. Then I or the nurse will do it every other day. I was hoping to see the research nurse. According to the doctor, they have a really cool timer shaped like a little old lady – “Ethel”. I want one to take home to keep on the fridge 🙂

We did talk with our family in North Carolina again today. Jesse is more interested in watching her Ipad today. She did have a breakdown moment of wanting to go home and for things to return to normal. I wish everything was normal again too, but I explained to her that we have to stay here and get this done so it can be normal again. She has also worried about her lack of hair quiet a bit today. I told her she is gorgeous with or without hair. And luckily the family in NC told her the same thing when we talked. Thank you guys!

Blood counts today: Hemoglobin – 8.7 (I will be surprised if we don’t have a transfusion of red blood tomorrow), Platelets- 103, ANC – 0, but White Blood Count – 0.6. This increase is a good sign. Hopefully her ANC is getting ready to make a reappearance.

I have enjoyed the quietness of today. And hopefully that will help Jesse too.