At 8:30am her blood pressure spiked at 149/100 and she needed the emergency medicine available when needed. It stabilized quickly and dropped to 131/79. Then I left for brunch and while I was gone she needed more BP meds because it was at 148/98.
Micayah saw that Naomi was resisting my lead to get her stuff done this morning. If it was my idea, she was not really having it. I was thankful when Micayah stepped up and helped me by being assertive with her when it was time for her to do her mouthwash (she does it 4 times per day).
It was difficult getting her out of bed today. She wouldn’t say she was “tired” but she did mention feeling “heavy.” She sat up most the day but had little energy to leave her bed. She is on diuretics to help excrete fluids since her kidneys are angry from chemo so she did need to walk to the bathroom every hour at least for testing. We did a lot of reading today while she colored.
Micayah and I were able to get her to leave the room and walk around a little bit. But we really didn’t go far. We ended up hanging out in the family room of the BMT unit and playing Phase 10. While there, a family brought around pop up tents and Naomi chose a ladybug. It is pretty awesome.
At 2pm we returned to the room to begin her last dose of Cytoxan. She did experience some nausea but it was well controlled with zofran. During her chemo, she obviously needed a pick-me-up so her care team partner took her to the “storage closet” and when we walked in we saw an apparently plain closet transformed into a child’s dream store. Naomi chose a play doh kit with about 100 pieces. Micayah chose a soccer ball. We returned to her room for them to play while I continued to read.
After chemo, she was able to be unhooked from her machines while the tubes were changed. I gave her a full spa treatment: bath with water massage and Field Better Soon oatmeal and lavender soap from Perfectly Posh; a dry shampoo cap and head massage; warm dry clothes and some massage with You Apricaught Me body butter.
While she was disconnected we also snuck out into the hallway and played kickball for about 15 minutes. That 30 minutes was the best of the day but she still was obviously not herself. Very slow and seemingly cautious; understandably more frail than I am used to seeing Naomi.
After her spa treatment, I ordered her dinner, organized and sanitized some things in her room, gathered laundry, and got her a new blanket set. The chemo has not affected her whit and sense of humor. Some funny things that she did or said today… Naomi told her nurse, “That medicine tastes like the plague. It is worse than the mouthwash and that’s saying something!”
Her nurse said, “are you 9 going on 19, or what?”
When it was time to weigh her (that happens daily to help track her fluid levels). I said, “is that ok to do it now?”
She said she may as well just do it because “you won’t give me a break”. I said, “Only one person is more stubborn than you and it’s me.”
Her nurses love to talk about real life and what that looked like and things she can look forward to again. We showed them videos of Naomi doing gymnastics at her last meet. At one point, Naomi said dreamily “I really miss gymnastics. I miss the feeling that I can fly. But I miss Niamh, too. I miss all my sisters. I can’t wait to see them.”
Micayah will leave in a few days and it will just be me here with Naomi for a few weeks. I hope I am enough for her. She adores her siblings.
Micayah stayed with friends at the RMH after dinner while I returned to tuck Naomi into bed. While saying prayers, she said, “Tonight I will be praying more by myself. For Micayah. I hope he is ok.”
2 thoughts on “Day 14, BMT -2”
I was so happy to see how strong Naomi looks, Praise be Jesus! And it was wonderful to see, you, Kristy😊 And it was great to see, sweet, Micayah. Thank you for the updates and photos. I look forward every morning to read your blog. God Reward you, Kristy for allowing us to share with you in this most difficult time in your life. You are an incredibly strong woman and as much as Naomi needs every member of her family, believe me, she needs her mama the most right now. We’ll continue to storm Heaven, love you all😘
The plague! she is hilarious! lol