Hope4Peyton

Last night was hysterical, with Zack moving in next door. He wanted to make sure that Peyton was well taken care of, so he made sure to call room service and get her food ordered. Our hospital has no set meal schedule, you just call down whenever your child needs something and they send it up, but it’s only for the patient. Zack ordered Peyton some pancakes with extra syrup and milk, and she was pretty impressed with his skills. When she was all done she wanted a milkshake, but she wanted ZACK to order it for her. Because he felt she’d eaten a good dinner he called down to the kitchen and ordered 1 vanilla milkshake…then improvised by ordering some fish nuggets with mustard…two things Peyton wouldn’t touch if her life depended on it…so the kitchen lady questioned who he was ordering for, thinking he was ordering food for the parents, which is a no-no. It was a riot!

Rob, Zack’s dad, brought in some walkie-talkies so the two of them could chit chat back and forth. It’s a really good thing neither of them has a roommate because there’s an extraordinary amount of hollering from room to room going on.

That excitement aside, Peyton woke up in a good mood this morning. Her color looks good, she said her mouth felt better but her chest still hurts. She’ll be going down for a chest x-ray sometime today and hopefully we’ll see that the pneumonia is clearing up.

This virus is still taking an aggressive swipe at her counts. I was really crossing my fingers that today would see a rise in numbers, but everything dropped again. Her ANC was a staggering 10 today…yes, that isn’t missing a 0, it’s actually just 10! Her hemoglobin dropped to 8.2 and her platelets took a dip to 53. I do believe that my fantasy of us leaving this weekend is exactly that, a fantasy. But as long as she’s so dangerously suppressed, this is the best place for her, and she can get the rest and care she needs.

The blood cultures they took because of her high fever Tuesday night are all clear. The cultures they took because of the pneumonia diagnosis have stayed clear so far, nothing growing in there. That’s a huge relief.

They have upped the amount of stool softener and mag citrate to get her bowels moving, nothing’s happened since Wednesday. As Dr. K put it, we are anticipating a “code BROWN” any time now.

I’m not sure how long Peter will be able to stay here, so we are going to work on figuring out what to do with the kids that keep them pretty stable if he can’t be here. I was told that this virus could take weeks to clear out of her system, and I’m praying that it doesn’t suppress her counts the entire time, or it could be a VERY long May.

Please keep Sierra Kesler in faithful prayers. So many are need of God’s strength, Connor, Jimmy, Matt, Presley, Brooke, too many to name here.

f.r.o.G….fully relying on God
–Anissa

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

Clear!

I can’t say it any better than that, there is no cancer in her marrow! There is really nothing in her marrow that SHOULD be there either, but definitely still in remission!!!!

Praise God, I am so relieved. I’m just ecstatic, but more than anything is just relief.

Dr. Kerr explained that she could be fighting this virus/pneumonia combo for weeks. We are going to be stuck here until she feels better AND counts come up. She said that we’ll have a very boring weekend at the very least, but not to make plans for next week either. Good times!

I couldn’t care less, I’m just overwhelmed with those words.

Peyton has slept most of the day away, so tired and just needing this recoup time. Her breathing is rattle-y and her cough is nasty sounding, but it’s not cancer!

Her mouth is still red and her tongue still had some icky sores, but it’s not cancer!

Is the message getting across? We should have minimal issues coping with these problems, she’ll have a bowel movement soon, and although she’ll probably be bald again, it’ll just be a bump in the road to recovery. A scary, steep, ever-shifting bump in the road, but one we’re going to get over!!

SOOOOOOO HAPPY!!!

f.r.o.G….fully relying on God
—Anissa

I forgot to share this tasty little tidbit from Wendy, who had the kids overnight last night.

Wendy has a daughter Alyssa who is a year older than Rachael and these two are BFF's in every way. They were thrilled to have an impromptu sleepover, especially on a school night.

Talking to Wendy this morning, apparently Nathaniel refused to bathe in the "princess bathroom", begging to take a shower in her bathroom instead, which was less a threat to his budding masculinity.

This is the one that had me snort coffee out of my nose…pleasant thought, right?

The conversation went like this…

"Do you dare me?"

"Ummm, sure!"

Rachael goes running into the kitchen, "Miss Wendy, Miss Wendy!!! Alyssa is cutting her hair!!!!"

A 7 inch clump, from the front of her hair…GONE.

Since Rachael has taken scissors to her own hair twice, I can only laugh. Why why why? I'm just thankful that Rachael's fingerprints aren't on the scissors, Alyssa's daddy is a sheriff and could probably have that all investigated.

I suppose that beyond the "DO NOT cut your own hair" talk, we'll have to add "Don't encourage your friends to do it either!"

Sorry, Wendy.

No word on the marrow yet, still waiting.

This morning brought lower counts again. Her platelets were up to 83 due to that infusion yesterday. Good thing because she’s bruised like a red-headed stepchild. The red blood they gave her on Monday didn’t hold for long because she dropped back down to 8.5 from 9 yesterday. Her ANC went down to 120. No real improvement in that department.

Her mouth is much better, her tongue and throat sores still hurt but the lips are healing. I assume that means the virus is getting under control. Still no more fevers and no growth in her cultures. YEAH!

Her chest x-ray came back with definite signs of pneumonia, her cough is hacky and painful. Poor kid, she’s just a constant ball of discomfort. They’ve got her on some Zithromax antibiotics to work on that. I’m worried that with two antibiotics and such a broken down body she’ll start a yeast infection, but we’ll deal with that later if it becomes an issue.

Last night at around 11 PM it occurred to me that she hadn’t peed since 2 in the afternoon. Sam, my new favorite nurse, came in and we did the good cop-bad cop routine on Peyton. Sounds mean, but the only alternative to getting her to let herself pee was for her to catheterized, which is really not a fun option. So, there’s me being the “You HAVE to pee, even if it hurts your booty, because if you don’t they’re going to stick something up your wee-wee and that will REALLY hurt.” Nurse Sam is all “It’s ok to pee, Peyton, you can just go right here in your pull-up or we can get a potty right by the bed, or you can even just stand up and pee right in this bowl! Does that sound good? Can you go now?” I know she didn’t want to pee because when it hits the sore part of her bottom it burns, but her belly was hard as a rock and about to burst. After 45 minutes of encouraging, cajoling, bribing and threatening, she did finally pee and now everything is flowing fine.

She ate a little bit this morning and was so happy to see Daddy walk in the door. Peter drove down late last night to work from home, so at least the kids can have some constant in their lives while Peyton and I are stuck here. Please pray for his job to be understanding of this situation. When Pete took the job Peyton was sailing along and although the threat of these health issues are always there, we were stupidly confident that all would be fine. I’m just concerned that his job won’t be willing to have him drop everything to run home when we’re in a situation like this. Our plan had been for Grandma to be here if something like this happened, but she is so sick right now as well, so she needs her own rest and recoup time. We are so grateful for the many offers of help and to take the kids, but we just want them to have some normal in their lives when we know they’re nervous and scared of the sudden onset of Peyton’s illnesses. With all they’ve had to see and know about this disease, they can’t help but be anxious as well. Peter’s here now to help them understand what’s going on and to be there for them while I’m here with Peyton.

I got the most awesome email last night from Brooke. She told me they didn’t want any big deal made, but how can I not? Brooke works for the PR firm that does pro bono work for the Pediatric Cancer Foundation and she’s been following the site and Peyton’s story. If I never knew anything more than she works for the PCF for free and is driven to help raise awareness of cancer, she would always have a special place in my heart. But she’s really going above and beyond to make Peyton very happy while she’s so very sick. Disney’s Princesses on Ice are going to be at the Forum this weekend and they had donated tickets for some of the cancer families. I was looking forward to a fun night with my girls with princess-mania. But obviously that’s not going to happen tonight. I was so disappointed to not be able to take them because I know it would be something they just loved. Brooke’s message last night was so sweet. She told me that after reading about how sick Peyton was she knew that we weren’t going to be able to attend the POI show and so her office wanted to put together a package of princess goodies for the girls that they’re going to have sent over to us. Seriously? Is that not just the best? Rachael and Peyton are going to be thrilled! Daddy AND princess paraphernalia? It just doesn’t get any better than that.

I have decided to start my own mafia. In response to the picture comment, it’s been funny and touching to hear all the responses. Honestly, I had so much other stuff going on that I hadn’t had time to get really bent out of shape too bad about it, but it’s really something special to know that if I ever get that person to fess up to their identity, there will be people across the country who are willing to take them out at the knees, Tanya Harding style! Really, I think if we started our own gang we’d be a scary bunch, forget all the L.A. big shot gangs, they got nothing on us. Could there be anything more frightening than a caravan of mini-vans/SUVs full of angry women who are defending a cancer child? Grown men quake at the thought.

Thank you all so much for understanding why Peyton’s site means so much to me. It has been my therapy, my tool to raise awareness and understanding and it has brought such amazing friends into our lives. It really touched my heart to know so many have taken something away from this site, that it had an impact on their lives. There’s a purpose in everything, God has a reason behind all of it, and maybe this is part of ours. Thank you all!

I am still riding pretty high on the good news from yesterday and you can only imagine how thrilled I’m going to be to get that “all-clear” from the reports today. My own joy is tempered by the knowledge that another sweet little friend has relapsed this week, his name is Conner Hernandez and he was out of treatment 3 years. He has a rare and degenerative chromosome disorder and he has been through so much and we are praying hard that his body will be able to handle more treatment and they are able to get him in remission again. I really hate to think how many of my friends have sat next to their children, waiting for results and praying for positive answers only to be devastated. There is a guilt in that, even though I know they’ll be happy to know that Peyton’s test are good, how can they not think “why not my child?” Please keep all these family in precious prayers, that God will keep giving them the hope and strength and perseverance to make it through each day. Keep our faith strong and our trust in Him complete.

f.r.o.G…fully relying on God
–Anissa