B & I went back to the PICU today for her third Rituximab treatment. We were hoping it wouldn't be as long of a day as last Friday & we'd be able to be home by early afternoon. Dr Cox had prepped the pharmacy to have the Rituximab ready for us so we wouldn't have to wait until noon like last week. Well, the meds were ready before we were today because her port wasn't cooperating. Karen (LOVE LOVE our nurses!!) tried twice to access it & called for backup & then our new friend Emily tried & tried. Finally after some repositioning of Bailey they finally got blood return after B started nursing. Pretreating with Vistaril still went well & the Rituximab was well received too. Enter port drama #2...Bailey was playing on the bed & stood up & in the process stepped on her line & pulled it enough to dislodge the needle. The nurses came to check & we thought it looked fine, but after a few more minutes it started to swell up around the port. The stopped the drip & messed with the needle but just couldn't ever get it right again so we ended up taking that one out & re-accessing again. I lost track, but I think we went through four needles today. We've previously accessed it while I hold her or sometimes while I'm nursing because it calms her down, but the last go, she was laying on the bed & they were able to get it immediately. Looks like that's our go to position from here on out - at least she's comfortable enough with all the sweet PICU nurses now & sees enough familiar faces that she doesn't mind too much. Next Friday is our last Rituximab for the year (hopefully ever, but I'm learning not to say "never" for fear that I'll jinx us).
I'm not sure that I've updated anywhere about the staging on her neuroblastoma...if I have, sorry for the repeat! After St Jude's reviewed the pathology on the tumor & lymph nodes, they have staged her as having a stage 2A Neuroblastoma. We thought they'd gotten everything out, but Dr Cox says that there was a lymph node that had some calcification that they left in because it was hanging out in "prime real estate" & would've been dangerous to try to remove. She says it's still the type of cancer that's unlikely to return, but we'll be doing CT scans every 3 months to monitor everything & make sure.
she was practicing measuring her own head...checkin' it out to see how big it is! :)
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