BMT +9 (day 25, Thursday)

At 8am I started receiving texts from Naomi. She was covered in loose hair as it was falling out more than ever. She was really ready to have her head shaved. I finished dressing quickly and ran across the street to the hospital. Her nurse attempted to reach the child life specialist to do it. While we waited we did this black and white puzzle.

The inpatient child life specialist was unavailable. So they sent over the outpatient child life specialist to do it for her. Naomi allowed me to take some before pictures while the specialist set up a sheet on the floor and a chair sat on top of it and prepared scissors and clippers.

She was so mature through the whole experience.

Her curls reflecting auburn in the sunlight….

As her hair was literally falling into our hands, we talked about all the times I’d braided her hair.  I said, “The way it is falling out is crazy.”

She said, “Everything about my hair is crazy.”

I said, “I’ve braided this hair so many times and now it’s falling out in my hands.”

Naomi responded, “You won’t be braiding my hair for a long time. But you will again because I will survive.”

She took her clips out of her hair and passed them to me saying that she won’t be needing them for a long time.  Then she sat in the chair on the sheet. So beautiful. So scared of what life will be without her long hair. I sat at her side and rubbed her legs.  I’d seen her catching her own hair for a few days now.  I was anxious for that to be over for her.  This was a moment we thought would come, actually hoped would come because it meant the chemo was stronger this time and did more to her body.  Bittersweet.

Jill cut off the lengths of hair so I could collect it, rubber band it and bag it to save. That was Naomi’s request.  I really tried to position it in side the bag so that we could see the curls.

Naomi  allowed me to take a photo for her Dad. She said that I couldn’t show anyone else yet.  Then she put a hat on to cover her head.  She said that whenever she leaves the room she will wear a hat and that no one will see her without hair outside the room.

Her nurse took us upstairs to the 10th fooor for Flashes of Hope. Those shots will not be available for a few weeks. We each had our makeup done once we got there.

When we came back downstairs, her nurse had changed all the hairy bedding for her and gave her an owl and ladybug pillowcases. She loves owls and ladybugs. That was perfect.

Naomi was surprised by how cold she felt without hair. Her elephant was used quite a bit today.

I worked on this puzzle today.

Naomi spent a few hours out of her room tonight. She was with a 9 year old girl who due to chemo also has no hair. I’m thankful for this friendship for Naomi. After being together for about an hour, Naomi came in to her room, removed her hat, tossed it on her bed and looked at me.  She said very matter-of-factly, “I’m going to wear my headband for a while because it is cute.  I am cute.”  She was ready to leave the room without a hat. She played video games, walked around the unit and just talked and laughed with friends. It was as normal as I’ve seen her act in months. I’m so thankful she can interact with other children on the floor and is developing friendships here.  She often misses and talks about friends, siblings and coaches from gymnasts, Little Flowers, schola.  I could tell she needed some friendships.

I returned to the RMH for dinner. When I returned, I found Naomi hanging out in the playroom with a 2 year old little boy and his father. They were playing together. The boy loves watching Naomi and I kick the beach ball in the hall. Today, Naomi made him a gift. She told me that she thinks he is the most adorable little boy ever.

I couldn’t be more proud of Naomi. Her strength, maturity and personality are so pure and beyond what I would ever expect from someone of so few years.

Tonight, as we snuggled and watched the baking show, she hugged me repeatedly and thanked me for “everything.”  I am so thankful for her.

7 thoughts on “BMT +9 (day 25, Thursday)

  1. What a bittersweet day. So much strength and courage expressed in these words. Thank you for sharing your journey. Sending you both love and prayers.

  2. OK, first, can we just discuss the glory that is your elephant hat!! HOW GREAT is that?! Second, you brave warrior you, Im so proud of you! You’re so cool! And you look FANTASTIC with your new style!!

  3. Lioness is such a fitting name for this little one! She is beautiful and strong, with an unassuming grace, that not even many adults possess. You are truly an inspiration Naomi! Many prayers and much love coming from Pennsylvania….<3

  4. Naomi you are so strong waaaay beyond your years! I am so proud of you. I have lost my hair twice now, from chemo! So I can definitely relate. I know what you mean about the cold. I never realized how much our hair keeps our head warm.😂 But I’m not one for wigs, can’t stand anything on my head. So I only cover my head when I leave the house, and that’s only for everyone else’s benefit. It took 3mo off of chemo and now I have just enough hair where I go out without covering it. I am praying for you daily that God restores you to the fullness of health and we can soon see your beautiful face at St. Bridget’s!! 🍀🍀🍀Happy St. Patrick’s Day🍀🍀🍀

  5. you are so beautiful – hair does not make an individual their heart does – I guess that means you are pretty awesome,

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