Update #8: So, How’s Jo?

#ItsJoTime

I have gotten a lot of people telling me they love these updates (thank you!), but I’ve also had a lot of people still asking me, “I read your updates, but I’m still wondering, how’s Jo? Like, really, how is she doing?”

This is a tough one to answer, because it changes by the moment. I think my thesis should be: she’s not the same, but she’s improving. This week, we have seen some pretty amazing things, and some, well, other things.

1. Her wake-ups from anesthesia every morning are now going fantastically. Instead of wailing in an hour-long temper tantrum, she now just calmly sits up, holds out her arms for her father to pick her up, sits down in her stroller, and tells us what she wants to eat. No muss. No fuss. This makes waiting while she’s under so much easier on us.

2. We’ve cut down own the steroids over the past week. Her mood is, baseline, much better. Many less tantrums and they are shorter when they do happen. Of course, they are still mostly aimed at me. 😞

3. She’s starting to lose her hair at the back of her neck, at the base of her scalp. This has only been happening the past couple of days, but it is a potential side effect of both the radiation and the chemo. She is, remarkably, pretty OK about it, just chuckling and rolling her eyes when one of us pulls the shedding clumps off her back.

4. We’ve been drawing her blood multiple times a week to check the counts of her blood cells and infection-fighting capabilities. While we have seen some slight drops, her numbers are holding pretty steady and the doctors seem pleased.

5. Since her diagnoses and her voice changes, she has refused to sing, or let me sing, or even let us listen to music. Finally, this week, coming hope from treatment in the Tennessee heat, she asked to hear “Hot, Hot, Hot.” Not only was this nice because we got to hear some music, but it was also her making a joke, which I loved!

6. She has felt good enough to join me in a trip to Kroger, bake a chocolate cake (from scratch), head to a few friends’ houses, and even join us to pick up Randall from school and see her friends and teachers. And whether its our favorite butcher that we haven’t seen for weeks, or other moms in the daycare parking lot, she calmly explains where she’s been: “I’ve been in the hospital, I have a brain tumor” as if she was on vacation or something.

7. She’s tired and not moving around like herself. She only walks sporadically, and mainly relies on one of us to help her around. While this has been improving the last few days, it is still difficult when she asks to be carried everywhere.

8. Home has been such a good thing for us. Things that she used to fight us on in the hospital (teeth brushing, early bedtime, walking) she has been doing without argument because it is just part of the expected routine. This means we’re doing stuff that isn’t just less of a fight, but is also more healthy for her.

9. Since her diagnoses and hospital stay, she has been less, how do I put this, engaged. Many of the books and crafts you all sent her during her hospital stay, she wanted to wait until we got home to play with. Since we’ve been home, she’s cooked with me, Melissa Pischl, and Sarah Swyers Parker, read books with me before bed, and today even asked to play with play-doh (thanks, Katherine Jordan) and open some of those kinder surprise things. (Side note, what are those things and why do the kiddos love them so much?!) Also, one morning this week she insisted on putting on blue eye shadow before we went to treatment. Hehe! One thing that we especially fought in the hospital was changing her clothes – she never wanted to do it! Thanks to a new nightgown from a dear friend (thanks, Tess Halbrooks!), she finally changed into PJs before bed this week.

10. She stopped taking any liquids by mouth while we were in the hospital. For the first week or two after her diagnoses, her swallowing worsened, but it is now improving. Today, thanks to a new cup she was super excited about (thank you, Maggie MacPhee Holt!), she drank 2 full glasses of juice (albeit thickened). This made my heart SO happy, because it means we may be able to ween off the feeding tube in the weeks to come.

11. We have been very thankful for the iTunes/Amazon gift cards (thanks, Cathy Leigh Day and others!) – we’ve got to show Jo some classics (like Peter Pan and Dumbo) as well as newer favorites (she LOVED Frog Princess). She especially loves her new tablet (thanks West TN CTE Directors!) and takes it with her to wait for doctors appointments and treatments.

12. She LOVES filling up that piggy bank of hers. All of the coins you have sent (too many people here to tag!) have kept us busy! We haven’t finished with them yet!

13. Despite all of this, she continues to make NEW friends. She shares cookies with her amazing rad-onc nurses, has befriended (and tells jokes with) all five pediatric anesthesiologists, told the new outpatient speech pathologist she was cool enough to call her “Jo”, and even James stopped in to see us this week to check on her (let’s be honest, to check on me and Ryan Wrenn).

So, overall, there are encouraging signs. The radiation oncologist was so pleased with her mood, temperament, and progress on neurological symptoms that he has suggested we cut down the number of radiation treatments from 33 to 31. We have more evaluations and clinic visits next week, so we hope to have more detailed info. But in this update, I hope you guys can see what I can, that it takes a village. What Ryan and I haven’t been able to do by ourselves (get her in PJs, get her to drink a glass of juice, get her to play a game or read a book), you guys have done with your support, prayers, well wishes, and care packages. We will never be able to thank you enough for holding us up and pushing us forward. I’m normally really bad at asking for help, but the past month has given me lots of practice. I’ll ask you to keep it coming. Keep the prayers going up, keep the funny joke videos coming in, keep your thoughtful ideas for items Jo might love working. She’s got a brain tumor, and she’s not herself, but she’s doing OK. It’s going to take all of us to get her through this. #ItsJoTime

-CHW