Niki was our nurse today and she is so tidy! She keeps all of Avry’s tubies labeled and untangled. Avry’s already got a massive, intimidating pole next to her but were only using 4 pumps on the pole presently. Just watch — that will more than double in the next week! So there will be so many more lines hooked up to little Avry.

This morning we crafted — more like I crafted and Avry helped. She was not in a good mood. She’s not happy about being back in the hospital. Niki came in this morning in PPE and Avry freaked out. She thought we were going to have to do the baths again! She relaxed when she realized Niki and the assist were only going to “put medicine in her tubies.”

Dr. Cohn and NP Paula came in and Avry was not happy. I was really hoping we’d have a few more days of happy Avry! She remembers way more than I thought she would from transplant number one. Ugh, I hate that for her!

We didn’t find any nice shells on the beach trip, so I found her a kit she can paint. She wants to hot glue the shells  onto a photo frame and make her own “beach souvenir.” She’s been talking about it for weeks — so I’m going to make sure it happens.

I hung up her photos outside the door that I laminated. One is of her and Trace, and the other two are #gogold because #childrenaremorepreciousthsngold for Childhood Cancer Awareness Month! Everyone loves when you decorate your door.

Avry is getting 3 kinds of chemo today. Two of them will run over 30 minutes. One is continuous — and will run for the next 5 days! We’re using all the preventatives, but are expecting mucositis by the end of the week. She hasn’t vomited yet. I asked if these have delayed effects or if we would experience side effects right away. She is on four different anti-nausea meds. Dr. Cohn said there are no delayed effects with these chemotherapies.

She took a good nap and woke up happier! I’m determined to get her out of bed every single day until she is just plumb down too sick. Since she can’t leave her room, she doesn’t even want to get out of bed. I brought a very colorful rug in some of her favorite colors along this time. I put it down right next to her bed and she climbed right out, walked around the end of the bed, and sat down on the little rug! We played Uno, she worked on her alphabet puzzle, and we did some stickers by numbers. Though it’s difficult for her to say the alphabet anymore — she doesn’t very often mix up her letters, but so many of the sounds she can’t hear now. She got frustrated when she realized she wasn’t saying them correctly and quickly wanted to stop and do something else. Jake and I just looked at each other with eyes that bore holes — a “pinch me” kind of way. She’s been saying the alphabet since two years old!

She asked to go feed the fish, but when we told her we can’t go beyond the double doors, she wailed, “Why doesn’t anyone let me do the fun things?”

Jake held her for a while in the chair while I stripped the bed and cleaned the room. Then Avry and I laid in her bed and talked and giggled. She loves to make people laugh, and sometimes she’ll just tell me, “Mom, let’s be silly so we can make each other laugh!” We had 15 full minutes of belly laughs and it was so much fun. 🤩

It was a better end to the day! All in all, a very good Day One of high chemo.

Trace went to baseball. He was so excited because he got to be back catcher. He got a good hit and made two outs, so he’s beaming from head to toe! I’m so happy for him. Sunday night he kept calling us — Jake said he’s pretty sure he cried himself to sleep that night. 😭 Tonight will be better for him!

And thank you to all of you who prayed yesterday and during the night. They got the line unblocked using special medicine! The first dosage didn’t work at all. They were only able to give her two doses.  We prayed over the lines, tubies, and medicine — and what relief when the nurse pulled back dark red blood into the syringe! Thank you, Jesus! Thank you for praying with us.