Day 13 – March 31, 2022

7:40 pm: Harvey & Hattie were chatting via FaceTime tonight. I was recording them to capture the cute moment they were sharing (although Harvey was slightly moody). I had to abruptly end the recording because I was breaking down behind the camera.

Hattie: “I love you, baby. I’m just… It’s ok, buddy. I’m sorry you don’t feel good.”

Harvey, after some prompting: “I love you, Hattie.”

Hattie: “I’m sorry you have cancer, too. I’m just so sad I can’t play with you.”

As we wrap up a pretty decent day, my heart is broken. Aside from the sibling FaceTime chat, we are starting to notice Harvey’s hair collecting on his pillow. Lindsey and I plan on discussing the impacts of the treatments and hair loss with Harvey tonight. We don’t want him to be surprised for the next leg of his journey.

We’ve made it through another day. Our sweet boy is comfy in bed watching “Monsters Inc.” Soon, our nurses will enter the room to re-attach his port-a-cath, he’ll be angry with us all, and then we’ll wind down for the night. But in this very moment, he’s content. ❤️

5:15 pm: We’ve had a great day with Harvey. We went for plenty of walks, played toys in the playroom, played board games, and have had fun conversations with him between his naps. He’s now eating supper. I tried to get him to tell you what he’s eating, but as you’ll see in the video, I just need to be quiet. 🙂 (Funny enough, this reminded me of the signs in the hospital elevators reminding me to “limit talking.” Yeah, they don’t know me very well…)

It remains a low-key day and we’re enjoying it. After supper, Harvey will have his port-a-cath removed (he won’t like this), a shower (hopefully not the worst ever like last night!), a new port-a-cath placed (he also won’t like this), and a movie night complete with snacks (our new favorite evening routine).

1:30 pm: Harvey went from “the worst shower ever” last night to “the best pizza ever” for lunch today. The secret must be in the hospital cafeteria sauce? It’s been a good day so far for a couple reasons:

1. This is Harvey’s last day of steroids for a while!! These last 13 days of steroids have caused him irritability, high blood pressure, tachycardia, restlessness/inability to sleep, endless food cravings and hunger, and likely others I’m forgetting. Good riddance!
2. Harvey has been more alert, focused, and active last night & today than he has since his chemotherapy started. I’m soaking up all the attention he’s giving us today. His next dose of chemotherapy tomorrow will likely take all his energy and liveliness away again for a while.
3. He’s been keeping food down, using the bathroom regularly, and we can tell he’s feeling at least slightly better. It’s been so hard to see him uncomfortable from the meds and treatments. Besides a bit of an extended tummy, he’s looking more comfortable in his skin.

No big updates from his health care team today. Just a day to relax and prepare for the next round of treatment in this journey that we never wanted.

1:10 am: Harvey had an early morning potty break and is now having a few snacks: Crackers and string cheese. He asked Lindsey and I questions on his mind such as “Why do adults fall in love and not kids?” and “Are my lungs OK?” He’s such a sweet boy and a thinker. We’ve been answering his medical/health questions honestly as they come up. He knows that he has “bad germs in his blood called cancer” and that the doctors are here to help get rid of them. The reason he feels icky is that when the medicine kills the bad germs, it hurts the good cells, too. I know he will take this information to heart and come up with more questions for us. Even though he’s overwhelmed with everything happening to him, he really does listen and take to heart what we say.

As he drifts back to sleep, I wanted to take a minute to document this moment. This early morning conversation is something that I never want to forget. More to come after we chase more rest.