Update #4

#ItsJoTime

The Good News:

1. Not sure if I’ve told you guys this yet, but Josephine’s lumbar puncture was completely clear. This means no signs of cancer cells floating around in her spinal fluid and we haven’t seen other signs that the tumor has spread (or is spreading).

2. Today, Josephine was calm rolling down to her radiation treatment and we even got some smiles and laughter when we talked about potentially attacking the nurses with some colored paint stamps she received as a present.

3. The wake-up from anesthesia was smoother today, and she promptly requested to go downstairs and get pizza and a banana, which she then ate. Awesome!

4. The ptosis of her right eyelid is looking better.

5. She’s still gaining weight. The weight gain combined with the puffiness from the steroids has brought her Haugner cheeks and potbelly back, which we adore.

6. We got an EKG and her heart looks super strong and is just plugging right along perfectly.

7. Her breathing and O2 levels are stable.

8. Our care team is so freaking awesome. Every single nurse, doctor, and therapist is so obsessed with our little girl, is incredibly protective of her, and is super supportive of Ryan and I as parents. This network of people who are so intently focused on Jo being as healthy as possible allows us to feel ok about stepping away to eat lunch, talk to a visitor, or drink a cup (or three) of coffee in peace.

9. The meals you have all been delivering are amazing. I think we are also gaining weight. Wait, that should have been in the “bad news” list.

10. I am definitely better than Ryan at hallway basketball.

The Bad News:

1. The radiation treatments, combined with the placement of the tumor, and irritation from different breathing supports during anesthesia mean her vocal chords are basically shot. She is really struggling to speak and people are struggling to understand her. For anyone that knows her, this is super bad news, as “talking” in general, is like, her number one core competency. Not sure where she gets that. 😉

2. She hasn’t hugged, kissed, or even been nice to me since Sunday morning. In fact, she spends most of the day yelling at me to get out of the room. Even now as I type this, if I lift my eyes from my computer to look at her, she screams “No, look at your computer!” Her tantrums are so irrational that they would be hilarious if they weren’t completely and utterly heartbreaking.

3. Today marks day 14 in the hospital, which means we need to take everything off the shelves and walls so they can do a deep clean. This is mildly annoying, although I do like clean things. Silver lining of this one is that we get to go through each and every present you all have sent, which is uplifting. Thank you again.

4. Ryan and I weren’t allowed to have any of the previously aforementioned pizza, which smelled so delicious, it was basically torture.

5. She still has a brain tumor.

6. There still isn’t a guaranteed cure for brain tumors.

7. Josephine was not impressed with my hallway basketball skills.

Overall, I think the pro-con list is in our favor today. #ItsJoTime

-CHW