Day -3 is not quite finished yet, since Naomi will be getting one round of two different types of chemotherapy tonight. It will be the third round of each, leaving just one more round of each for Monday evening. The rATG treatment today went very well. Naomi’s blood pressure dipped a few times, so the nurses infused it a bit more slowly which was perfect and she handled it fantastically. The nurses were all amazed at how well she is handling everything.
When I arrived today, I was told that she had already taken her morning medicine and that she did it by herself. In the afternoon, she was happy to show me that she does indeed do it herself and insisted she take her medicine alone again. I was impressed!
Knowing her as well as I do, I can see that she is starting to feel the effects of the chemo, but is trying not to let us know that. She is a very determined and independent child which will serve her well through this process. Throughout the day, she did quite well with her energy, even getting out of bed and sitting in the rocking chair for an extensive amount of time and playing games or watching movies most of the day. However, she was a bit edgy and definitely not wanting to be very personable. She spent a lot of the day just zoning out on a game or movie. Her WBC count fell enough that she was not permitted to leave the room.
Tonight, she was extremely fatigued early and although she was fighting it, I was able to convince her to rest while a medicine bag infused. While she rested, Micayah and I took a walk to the family room to play some foosball. Upon returning, we found her asleep. Seeing her asleep, we left the room for a little while longer and returned again later to find her still asleep. So, we quickly and quietly packed up and came back to the hotel early. It will be good for us to bed asleep earlier tonight, too. The nurses have all my contact info to get me if they need me. Naomi has a cellphone to call or text if she wants or needs to, also.
Naomi has continued eat fairly well, asking for seconds of breakfast; then, thirds of the sausage. Drinking hot tea and a good amount of water; even sipping her broth and eating half of her burger, and of course, all of her fries. The nurses are truly marveling over how well she has been handling everything. We pray that this continues to be the case.
Micayah is feeling anxious as the day of his procedure nears. It was a nice break for he and I to go to the family room and play aggressively on the game. We also took some walks and runs while at the hospital. He kept challenging me to a race, but I was running for endurance not speed! The days here seem so long, but the day is approaching quickly. Time is such a strange thing. I feel as though I am in another dimension of time here. It is bizarre to only be able to see the other children by computer screen. Aaron sure has his hands full with that crew. Please say an extra few prayers for him. I know what he is dealing with because I have been there. It is no fun to be the at-home parent while the other is away. Also, special prayers for Micayah. He is tired and anxious. He said tonight that he never really thought transplant day would be so close. It is a surreal experience here. I think I am still in shock we are here. We are thankful for the support and encouragement we have from all of you. Moving ahead…… to Day -2!
Micayah and Naomi you both look Great in those Pictures 🙂
Thank you, Uncle Ross! Love, Micayah & Naomi