Feb 23, 2016 (Sara)

Maya has Day 8 tomorrow. There are and will be some very specific day’s during this intensive treament. Days that have LP’s (lumbar punctures) and chemo infusions like tomorrow. Tomorrow is round two of “intrathecal” (in the spincal fluid) chemo and vincristine chemo through the buddah button. She will also get her port (mediport/central access/buddah button) dressing and access changed but we are OH SO thankful that this first one is while she is under. The doctor mentioned during rounds this morning that there were “a handful” of new diagnoses over the weekend and that sometimes they will make the current kids “add ons”. This is what Maya was last week when she was actually one of those “new diagnoses”. I made it very clear I would be nagging them to set a time and who do I nag? I hate to think that another child would have to fast for 20 hours like my child did last week…but they would be crazy to think moma bear would just sit back and watch my child have to do that again. She is now scheduled for 10 am. Boom.

Today was a good day. I’m sure we will all be up and down and everything in between but as a whole, today was good. She has been taken off precautions. Now this is very different than the precautions WE will be taking when at home and her ANC is way low. She has been in an isolation room with out being able to leave because she came in with a cough. The poor child didn’t believe me (until today) that there were other children here. I asked (several times…I’m getting good at nagging) if Maya could visit the play room today since she is only on “neutropenic” precautions and not “droplet”. One of my favorite nurses helped make it happen. It wasn’t the perfect scenario. It was a bit late in the day, we had to get escorted by Child Life (and I like the lady a lot its just hard to go on some one else’s time), she needed to pee, she needed to poop, she was a little tripped out by the two kids with no hair, and baby Lincoln wasn’t there. We ultimately only spent a total 10 minutes in the room but she enjoyed looking out the window at the massive construction site and driving in the little pink and purple Flintstones style pushy car (no idea what that thing is called). She wanted to play with the girl’s baby but I’m sure you can all imagine that sharing personal toys is a bit frowned upon. Needless to say Mommy had to run and find her own baby…that she did not want. I’m happy to know the three year old still exists within the dragon.

We didn’t return to the playroom today but she ambulated around the unit and we hope the playroom can happen tomorrow. The Family House that we are staying at has a wonderful playroom for Lincoln and I’m afraid that she thought we might be going to that one. I told her she wouldn’t see him but I think she might have wishfully thought there would be a surprise for her. Broke my heart.

After dinner tonight, we did our wipe down bath and snuggled on the window sill. I’m not sure I mentioned this before but it quickly became one of my favorite times of day.
Tonight especially. I saw the booty dance for the first time in what seems like forever. I’d post the video but I think we’d get in trouble…I mean it was during bath time. It made my day.

Today’s numbers and motherly assessment: Hemoglobin 10.1 (woooo!), Platelets 110 (hoping she holds on to those since they need to be >50 for the procedure tomorrow), WBC 0.6 (omg), ANC @ ?? below 15 (freaky low). Her blood pressure is normalized and she’s on approximately 6 meds. Appetite…incredible, like really incredible. Kicked right in. Weight has crept back down closer to admit weight (she had gained 4 kilos….that is over 8lbs…from water). Overall she is sick but amazing. The Dragon is efficiently burning down the castle to make way for the new. Scaffolding has yet to be set but the plans are brewing. Love is life.