Mar 3, 2016 (Sara)
Since Maya’s first visit to the clinic, she has done pretty well. Scott and I still feel a little uneasy with Maya’s belly distention and she continues with some petechiae on her belly too (this looks like polka dot bruising). Since she has such low platelets (she was 2 before her platelet infusion), she bruises super easy. I called the RN at the Reno clinic to make sure it was a okay to still see the petechiae even after the transfusion. A very common answer to some of our questions is “keep your eye on it”, and that is what we heard. I would usually not accept this answer but…now that I have a child with cancer, it feels like we would be in the ER twice a day if we didn’t hear “keep your eye on it” for some things. Thank goodness for professional with experience with this. The nursed ensured we were getting her labs checked again soon (tomorrow) and said to tell LabCorp to order them “stat”. I think it is for reasons like this that she is monitored twice a week.
It was really fun seeing a glimpse of Maya being a kid the last couple of days. I can’t really say that she is feeling any better but I think she has become very bored with feeling crappy. Yesterday we spent some time outside and in the play room…at her request. She decided she wanted to change her clothes AND she found her rock’n’roll head band and wanted to rock it for a while (be sure to check out some pictures). This has definitely not been the norm. I laughed out loud when she came in from outside and said “so…mommy….what should we eat?”. Hahaha. I mean really child, you must be hungry since you haven’t had a snack in 45 minutes! They warned us that she’d want salty fatty foods but I wasn’t thinking MY child would. I have been humbled yet again. Dang.
Scott and I have both made it to work for a while today. Easing back in…
After a staff meeting at NEIS…I cried. It feels so weird to say that but I think I needed to talk more than I thought I did. Is Work Therapy a thing?
Speaking of work…I actually gave notice to Carson Tahoe today. I cried as I wrote my letter of resignation. I just can’t be a good part of the team there since I would be frightened that I’d bring something home to my chemo kid. Reality is…it could happen from any where, any time, from any body but I have to eliminate the chances some how. I love the ladies that I worked with there. They are far more than my colleagues. They are part of my support system, they are my friends and mentors and I will miss the days that I get to spend time with them and learn from them.
Motherly assessment: Appetite: omg can this kid seriously eat this much? We’ll see labs tomorrow – I’m sort of nervous since she continues to bruise a little. By nervous, I just mean I anticipate more transfusions. Over all – she continues to rest a lot, eat a lot, and play very little. The bottle of decadron is dwindling…and I can’t wait to see her feel better.