Day 12, BMT -4

I think it is pretty amazing how Naomi responded when I pulled the peppermint essential oil out of my bag this morning. She had her second serious occurrence of nausea this morning. They’d given her meds for it. But when I pulled out the dōTERRA peppermint oil, she said, “oh! Thank you so much! That helps SO much!” She honestly jumped up with the most excitement of the day at the sight of peppermint oil.  Love my oils.

While at St. Rose Siena one of the things that comforted Naomi and me was some Cane’s sweet tea and chicken. We didn’t have it often but when we were really down and sick of hospital food, I’d run across the parking lot and grab us a box of chicken, some coleslaw and sweet tea. During her nausea today while trying to take her morning pills, she said, “I need Cane’s tea. THAT would help me take my pills.” With the nearest Cane’s not being in walking distance, I ran to the cafeteria and hoped the sweet tea there would be good enough. The look at her face when she took her first sip told me that it was perfect. She said that this tea tastes ALMOST as good as Cane’s. Sweet tea for the sweetie. It made her smile and made taking her pills so much easier.

Some of her metabolic levels are creeping up into toxic levels. This is to be expected with chemo. She required blood pressure medicine throughout the night and day. The Campath caused that and it is likely that cytoxan will as well. The good news is that she has responded well to the medicine that lowers it. She was also prescribed THC for her nausea and to help increase her appetite as she started out very slow today with intake.  It definitely worked!  By the end of the day she had eaten: 2 cheese sticks, jello, 2 lemonades, sweet tea, 2 bowls of ice cream, 3/4 turkey sub with lettuce, tomato, black olives and about 6 ounces of clam chowder.

She was just about to start math today – she just about literally kicked and screamed through three problems – when the dance teacher arrived. So Micayah and I sprinted from the room to get lunch and let her dance. When we returned she was still dancing. She is a beautiful dancer and I had to choke back tears watching her. We were also told today that she is the first patient to do a backbend in dance class while admitted as an inpatient!

After dance class she ate lunch and we attempted to start Math again.  This time the Priest arrived for our private reconciliation & communion service.  He came from the St. Stanislaus Oratory.  I am happy we found our church home in Milwaukee when Naomi is released.  He was extremely accommodating to us and is willing to come back any time we request.

We tried a third time to begin Math, but this time our social worker came in and a PT and then Naomi became very fatigued.  So, she avoided that subject today.  In fact,she slept on and off much of the afternoon in the recliner.  She refused to lay in bed!

Around 4pm the nurses came around with some frozen custard that was donated to the kids.  It was so good!  Naomi ate two bowls!

We read a bit more Echo and I’m starting to fear that we won’t finish it before Micayah leaves as it is such a long book that despite our daily reading we still have about 75% of the book to go!  I think we will be doing a lot of reading Saturday and Sunday though.

In the evening while we were preparing to go for dinner in the cafeteria, she said “I wish I could go.”  I said, “well you don’t have any infections and it is very empty here this time of the night so you probably can.”  Her nurse gladly let us go.  It was the first we could get Naomi out of the room today…. even off the recliner actually.  We walked off the BMT unit, across the bridge, down the elevator to the lower level and through a bunch of hallways to the cafeteria.  Micayah held her heavy tubes while I pushed her pole of machines.

With her being as tired as she is and weakening, even the fact that she walked down there was amazing.  She enjoyed clam chowder and the walk.  We went back up to the lobby area of the BMT floor to eat.  It was a nice break from her room.

While we ate, she was so much fun, just like herself.  Micayah gave her his sweatshirt because hers was dirty. While opening her juice, she spilled it on his shirt while she was wearing it and giggled and giggled.

She also kept talking to her machine – telling it “you’re annoying” and “you are so loud, shh!” I reminded her to be kind to her machine because it working hard to help her get better and we should be thankful for all it does.  It was fairly quiet today without unnecessary beeping – so I was willing to be kind to it myself.

Naomi mentioned quite a bit today about heavy the tubes feel.  I was told during rounds today that her fluid levels would be increased tonight because of Cytoxan tomorrow.  So I am thinking she felt that extra fluid in the tubes.  I can’t imagine how uncomfortable that must be.

After dinner, she was ready for bed very quickly.  Her eyes are not opening very far, her face is a little puffy, she is much slower to laugh and not as spry.  I saw glimpses of her throughout the day in moments and I treasure those.  Watching her dance was the highlight of my day.  Sitting with her at dinner in the lobby instead of watching her sleep was a relief at the end of the day.

Her team continues to be amazing.  Their communication with me, prepping for what is to come, and checking in on me is so appreciated.  Her psychologist checked in today and Naomi wasn’t having it.  Naomi’s hot spot is being asked a lot of questions.  So the psychologist and I took a walk and talked about how we’re all coping.  She said that we are all doing a great job and next time she comes she won’t ask Naomi questions but will bring a game or something fun to do instead.  I love how they continually meet her where she is at, allow her to continue to be a child, we can leave the BMT unit and explore the hospital a bit and they invite us to make ourselves feel at home.  I don’t ever feel like “all eyes are on me” when I walk past the nurses station.  I can freely help myself into the nutrition room for snack, coffee, teas, juices for all of us.  In fact, I have  parent key card that allows me free access to the BMT unit 24/7.  I can come and go as I please and never even need to press a button to ask to be let in.

We Facetimed with home a lot this afternoon while Naomi napped on and off.  Lauryn and Cait were mostly available today.  The time difference and busyness of the family still makes connecting hard.  Sinead breaks my heart because she is too young to connect online.  When she saw me today, she said “hi. outside. bike.” and proceeded to go outside.  Later she told me she was eating an apple.  She doesn’t seem too traumatized by my absence but Aaron said she asks about 10 times per day where Mama is.  At one point, Naomi was talking to Lauryn and I know I feel asleep with FaceTime running.  In my dream I heard Aaron talking and then realized it was really him and it woke me.  Thank God for technology to at least feel like we are in the same room together for a few minutes.


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