Improvements

Now that the crisis is over and the questions have been answered, there is a quiet lull in our room and it is FABULOUS!

Peyton was thoroughly put out by me making her sit up and move around so I could give her a quick bed bath this morning. She had a serious case of the funk and I don’t know if it made her feel any better, but it sure made me happier.

Dr. Barbosa, our big guy at All Children’s, came in this morning to talk about all the stuff going on. Her mouth continues to improve, but because her throat is still hurting when she eats he feels that the sores have headed farther down her throat. As long as she’s still eating and drinking he’s happy to just treat it, otherwise it would take a throat scope and I don’t think anyone wants to see that happen.

The official name of her mouth issue is Herpes Stomatitis caused by the Herpes Simplex Virus Type 1. I had no idea, but this is pretty common in kids and especially for kids who are immune suppressed. She’s not contagious except by contact. This is NOT the sexually transmitted kind of Herpes, which is the Type 2 virus. She’s likely to have problems with this virus while on treatment, while her body is vulnerable. Hopefully it’ll be something that just goes away and she doesn’t have to deal with as she gets older, but there is also the likelihood that she could have outbreaks with anxiety, illness, fevers, periods, any number of things could set it off.

Now that I know what the signs are, looking back she had a pretty obvious presentation of symptoms if I’d known what to expect, we’ll be able to jump on any outbreaks before they get to this point. I feel completely wretched that I didn’t realize how sick she was before it got out of hand, my poor girl suffered a lot because I thought it was simply chemo mouth sores. It’s always a learning process.

I think her pneumonia is improving already. Her coughing is producing a lot of phlegm, which a good thing, and she’s not holding her chest whenever she has a coughing fit. She no longer needs constant oxygen to keep her pulse-ox stats up, so that’s excellent!

Her back is still sore from the aspiration yesterday, but she’s not complaining too much about it. She’s still on the morphine pump, and it gives her a small continuous dose, but she’s not needing the extra button pushes anymore.

Her counts were still down, but perhaps we’ve seen the worst of it now that the virus and pneumonia are under control. Her ANC actually went UP!..from 120 to 160….nothing to get excited about, but that is the first upward movement all week, so I’ll take it. Her hemoglobin didn’t budge, holding at 8.5, so maybe we’ll see an increase tomorrow. Her platelets dropped from 87 to 59, so a pretty big drop there when she had a transfusion on Wednesday.

Dr. B mentioned going home today or tomorrow, because all of the meds she needs can be given orally at home. Then he looked at her counts and said that we’d have to wait until they at least stopped dropping, then I told him she still hasn’t pooped and she has to accomplish that as well. Really, if my biggest job of the day was to have a bowel movement, I would consider myself pretty darn lucky. As she’s feeling better, she’s also getting a bit grouchy. This itches, that aches, I hate this pillow, I’m cold, I’m hot…. Already I’m missing the quiet! No, truly, I’ll take her with the energy to complain ANY day over the limp dishrag of a girl she’s been over the past few.

She got really excited about her princess package that arrived from Harmon Tampa PR, she tried on all the crowns and the Tinkerbell wings, oohing and ahhing over each fun new treasure. Peter brought Nathaniel and Rachael down for a sweet visit last night. Nathaniel brought a card he’d made me and a big banner signed by all the 4th graders at his school. Rachel brought great big hugs and that was the best. We talked about what Peyton’s been going through and poor Nathaniel voiced his fears of the unknown, wanting to know if people die from pneumonia. These poor kids, I feel so bad for the things they have had to learn and understand. They left feeling much better, seeing Peyton without the tears and pain was a big boost. Having Daddy here is helping a lot.

She’s very sad about her hair coming out. She never cared the first time around, but she was so little then. Plus, all her new friends were bald at the same time. She’s more aware of the hair now, so proud of those ponytails. She’s been eagerly waiting until her hair is long enough to do fun stuff with and now she’s pretty angry that it’s coming out. She was actually smacking her forehead and I thought she might be itchy again. She growled…actually growled at me….and then said, “My stupid, stupid hair is coming out all over the place.” It has thinned a lot, she has a couple of little bald spots, but maybe it will stop falling out and then we can do a Donald Trump comb-over and no one will notice.

Peyton is showing a lot more energy, our friend Zack got a fever and had to come in to the hospital. We were lucky to get them in the room right next door to us and when they both stand in the doorway they can see each other and talk. Neither is allowed to leave their rooms, but they can laugh together and Peyton’s been sharing her goodies, stickers and toys with Zack. The excitement of getting out of bed and seeing Zack wore her out pretty quick, I think after she finishes her lunch she’ll probably poop out.

Her diet has been chocolate milk, pancakes and ice cream. We should all get to eat that, right? But it’s soft and bland, it’s cold and doesn’t irritate her mouth and throat.

Amanda, thank you for the Barbi movies, she’s watched them nonstop all day!

Brooke, thank you and your office staff for the bag of princess goodies that just thrilled her to the tips of her toes! Thank you for throwing in lots of extra stuff for Rachael, it’s awesome to remember her as well.

Amy, the chili was fantastic, you can bring us dinner ANYTIME!

Kasey, thank you so much for coming to visit us and Peyton loves her puzzle, the kids walked out of her last night proudly sporting their Brad Richards hats.

We are just so appreciative of all help and support we’ve received, it’s made this trip so much easier and made us feel very loved. It is a tremendous feeling to know that when it feels that we’re at the worst, so many lift us in prayer and are ready to help.

f.r.o.G…fully relying on God
–Anissa