BMT +8 (day 24, Wednesday)

Today was a very busy day for Naomi again. She is quite the social butterfly on the HOT unit!  That stands for Hematology, Oncology and Transplant.  It is as sterile as a hospital can get with precautions in place to keep sick visitors and children from roaming the halls and spreading illness.  That allows her to leave her room almost freely.  She enjoys talking with other patients, walking the halls and joking with the nurses, riding the exercise bike, playing ball in the recreational therapy room and attending therapy classes. Her attitude today was amazing.

We completed a full day of lessons. Her energy was good all day. There was no sign of cell growth on her morning labs and her toxicity levels continue to fall which is a good thing.  Her appetite continues to be good.  She attended art/music in which the music therapist helped her turn a song into a piece of art. I didn’t have permission to photograph that yet…..

In fact, I took no photos at all today. I had my phone out of my hand most the day and that was nice. In fact I lost t a few times because it had been so long since I’d touched it.  We snuggled on the sofa doing school. We cuddled in bed and watched the Bake Off.

A lot of our day felt supernatural. I could feel a calming presence around us all day. There wasn’t anxiety there today like there had been yesterday.  Also unlike yesterday in which Naomi was emotional and rather needy, today she was strong and confident.

Naomi started shedding hair on Monday. Her hair loss increased yesterday. Today it was fairly constant. She shed more hair today than all of her first transplant combined. Still, she has that thick Italian head of hair that doesn’t really show that its thinning. A nurse asked her yesterday if it was a wig! That same nurse commented on her Lularoe wardrobe Amanda, Kiera, and Jennifer! 🙂

When first admitted, Naomi said she would shave her hair as soon as it started falling out.  Lately though she has considered keeping her hair and just seeing if any stays. But by 4:30pm today she said she was done picking up hair off of everything and combing her fingers through and getting handfuls. So she is likely going to shave it tomorrow. She would have done it tonight if Child Life was still in the building but the therapist had already gone home.  I’ve let it be her choice completely. When she asks my opinion, I am willing to discuss it but I think only she can decide what is best for her.

She told her nurse that she would enjoy her days more if she didn’t need to keep cleaning up the hair. I respect that. There is also a sense of control when one chooses to do that of their own accord. The nurse said, “Is that going to be ok with you to lose your hair?”  Naomi answered, “Oh yeah, I figured this would need to happen and I am ready to make it happen. Then all my hair can grow back at the same time and I’ll get to see what new color it is and if it will be straight or curly.”  Very mature.

She has been hanging around with another 9 year girl who is also a gymnast going through chemotherapy who is already sporting a bald head.  I wonder how much of Naomi befriending her has allowed for the transformation from yesterday to today?  Emotional to confident.  These children are messengers and they don’t even know it.

Tomorrow, Flashes of Hope will be visiting to do photography.  Naomi definitely wants to participate. I am very excited to see what she decides. Will she shave her hair before photos? Or after?

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