Hope4Peyton

Two more things, one I forgot to post and one is new!

A) The skin on Peyton's head has started cracking and peeling like she's had a really bad sunburn, it's not bothering her, but it looks sort of freaky. Hopefully that'll be the worst of the skin effects, the acne-type bumps are starting to go away.

B) I snuck Nathaniel out of the house for a few hours for a movie, for some mom and me time…and he came home with a fever and complaining of headache and stomach ache.

so….just for those who weren't keeping track, these are our prayers for the week:

1. peyton's chemo tomorrow
2. rachael's chicken pox and for peyton not to get it
3. nathaniel's new and funky fever
4. the washing machine
5. for deep cleansing breaths for mom

f.r.o.G…fully relying on God
–Anissa

There are just days when you can't help but feel like there's a cosmic Punk'd going on and you're stuck smack dab in the middle of it all!

This weekend has been a series of unfortunate events.

We had to pick one of the kids to post on Ebay so that we could get the AC and brakes fixed on the suburban….we're going to miss Nathaniel so much. Then Rachael's Poxy Roxy outbreak hit….and the news from the doctor that the vaccine that they need Peyton to have is no longer produced by the drug manufacturer, so it's not available to the hospital….they are actually calling around to other hospitals to see if they have any of the vaccine available that they will give so that she can get some, but who knows. I'm not too worried about her getting the vaccine or not getting it because Dr. Ayala told me that she needs to get it within 24-48 hours of being exposed for it to be effective and I'm really thinking that she would have been exposed either before Rachael left for camp or directly after she came home, so we've already passed the point for it to be useful. If Peyton gets chicken pox we'll just have to pray that the vaccination she's had keeps it mild and she doesn't have any complications such as pneumonia or infection that they are so concerned about. But the alarm is there because any cancer parent can tell you…one of the first questions they ask you at clinic EVEY time you walk in is "Has your child been exposed to TB or chicken pox?" TB or chicken pox? These are my options? Couldn't you just ask me if they've been exposed to bad fashions or uneducational tv programs? Arrrggg!

And now….the washing machine has gone on strike. I don't know why. I'm very nice to it. We have a very good relationship…we spend a lot of quality time together. In fact, we may spend more time together than any other appliance in my house. I didn't pitch a fit when the dish washer died, I can wash dishes by hand with little to no complaints. But my clothes? I'm not so much for the clothes-banging-on-the-rocks method. Hopefully it'll be something that we'll be able to just get fixed.

Peyton has put herself to bed….granted it's only 7 PM, but I refused to let her take a nap when she got grouchy this afternoon because she's been rocking and rolling until 10-11 o'clock these days. So, she just crawled into her bed and passed out….the most important part of that phrase being "her bed"….with Rachael being gone, Pete and I rearranged the girl's room so that there are two beds in there and really jazzed it up to Peyton as being her room as well. We're very hopeful that she'll start sleeping in there! We're not betting the family farm on it or anything, but we're doing what we can to make it appealing.

Rachael is over at Grandma's house until we've had a chance to go to clinic tomorrow and meet with the dr on how they feel about the chicken pox issue. She was feeling ok, itchy but better after I talked to her this afternoon. Poor kid comes home from camp and then gets quarantined.

f.r.o.G….fully relying on God
–Anissa

It's official….it's chicken pox. I'm calling her "Poxy Roxy" now…has nice ring to it, right? Her spots are still showing up, the ones she has are getting little pimply pus-y heads and she's starting to itch. She's contagious until she stops breaking out and her bumps start getting scabby…sounds yummy, huh?….so we're required to keep her away from Peyton as much as possible…wish I had noticed the rash before I stuck them in the bathtub together last night.

I talked to the oncologist and the concern is that even though Peyton has had the vaccine, it obviously isn't foolproof and with her compromised immune system it opens her up to more complications if she gets the chicken pox, especially for secondary infection if she breaks out in a rash. She may require a shot or two of a special vaccine for cancer patients who've been exposed. Poor Peyton, Rachael gets chicken pox and Peyton gets the shots…that's really going to bring on the warm fuzzy feelings for her sister.

So far the actual pox attack has been mild, no complaining, mild itching…..now it's just an issue to keep Peyton from getting it. We can't go to the fundraiser for Nikki Hawkins tonight and hopefully Rachael will have achieved maximum crusty-scabiiness by next weekend so that she can go to our fundraiser.

f.r.o.G…fully relying on God
—Anissa

Little stories are creeping out about home life during my stay at Ronald Mcdonald. It's good to know you have a place in the world…and mine is to laugh at what my family does when I'm not around.

I have to share this little tale of Rachael's drinking problem….

Rachael went to Pete and asked for an Arizona iced tea. He told her we didn't have any. She told him that she'd found some in the kitchen and brought him a can of ARIZONA ice tea. (At this point of the story I had to ask Pete "did you learn to read the labels before you fed stuff to the kids after this?"!!!) Being the cooperative dad that he is he opened it for her, but she took a sip she crinkled up her nose and told him she didn't want it.

He gave her the "I opened it for you, now you have to drink it" lecture, but she gave him the "I really don't like it, it's yucky" whine at full volume and so he said "Fine! Then I'll drink it."

He took one drink.

This is where the reading of the label would have come in handy…it would have led to the conversation going more like this…

"Dad, can I have this Arizona ice tea?"

"No, Rachael, because this is ice tea CONCENTRATE!"

That's good stuff.

I overnapped this afternoon…..Pete forgot to empty out the yard sale stuff that completely filled the car…we left late to get the kids. When we dropped them off, we got a little red slip of paper that said "Pick your kids up on Friday at 6:00 pm…Do not be late!!!"….just like that…!!!…3 exclamation points! As if to say "If you're late we will staple your child's ears to the floor, cover them in peanut butter and leave them out for ants to attack….or we might drive them to the nearest organ donor center and sell them for parts"…that's not what it said…but it was IMPLIED! So here we are….heading cross town frantically to pick up our kids on time, no one wants to be the last parent there…I have nightmares about my kids sitting by the side of the road with all their stuff because we're late to pick them up….we're late!!!

We race through Tampa to get to camp…we're late…I grouse at Pete because he park at the first open spot he finds, much like he does at the mall, which I always complain about because then I feel like we need to pack a snack and a GPS before we hike to our destination. Yes, I am a parking spot stalker…I will drive through a parking lot for fifteen minutes for a decent spot…..but then I can't remember where I parked because I've been EVERYWHERE in the parking lot.

We make it!

And there's nothing but a bunch of parents standing around talking, picking up trash bags of dirty clothes and sifting through mounds of lost and found items. Were we all late? What happened to !!! ? We must have stood around for a good 20 minutes waiting for the kids to arrive….but let me tell you, when I finally saw their faces it was fantastic. I don't think I truly realized how much I missed them until I had them back in my arms and everything in me said "mine mine mine"….it felt so good to be with them again.

They are so tan…seriously brown…well basted Thanksgiving turkey brown…and they were dirty. Good kid fun dirty! I went to brush Rachael's bangs off her face and most of her hair came up in one large piece….kinda scary. I asked her if she bathed at all while she was there and she told me she did, but I wonder. Nathaniel told me that they not only had a rocking shaving cream fight, but there was a slime fight as well, so I found out the crustiness was a layer of shaving cream and vanilla pudding…yum!

Camp was awesome….they played all day, Rachael fell asleep on the table during crafts in the afternoon they played her so hard. I love that. Her councellors said a few tears were shed for us, but she was easily distracted and was a ball of fun and energy throughout the week. She got a certificate for "best smile" at camp! That doesn't surprise me one bit. She loved canoeing, they swam every day in the lake, they told scary stories at night but Miss Sarah slept in the bunk next to hers so she wasn't scared.

Nathaniel had a blast…he got laid out during a dodge ball game, but that was the worst of his camp injuries. His certificate said "cleanest camper"….as Pete put it, they must have set the bar fairly low for that one! He was riding on a guy high…full of good old fashion testosterone pumping events like motorcycle rides, watergun fights every nights, and mud wrestling. This is why he starts looking forward to next year as soon as we drive away.

We fed them, we bathed 5 days of funk off of them and they both passed out immediately. Peyton is still up, eating macaroni and cheese….or faking eating macaroni and cheese, I haven't actually seen her ingest any…fighting bed time because she's freaked out by a monster thunder storm we just had.

Now the real fun thing is that at bath-time I found that Rachael has a monster rash….it's on her belly, it's on her back, her butt, her underarms and in her pelvic area….red bumps with small blister-ish heads. Oh I'm hoping they're just some bug bite/wilderness fungus because I really don't want to deal with worrying about Peyton and chicken pox again. Both girls have had the vaccination and Peyton is showing no signs of rash. Rachael was exposed to chicken pox on the first day our stay at Ronald McDonald house, but I really didn't think much of it since she'd been vaccinated, so now I guess I'll be seeing what's happening with that.

We have plans to attend a fundraiser for [url=http://www.caringbridge.org/visit/nikkihawkins]Nikki Hawkins[/url] tomorrow night. Sweet Nikki is still inpatient at Arnold Palmer in Orlando so as far as I know, she won't be able to attend her own event, but we had planned to go and support her and be a part of her night. If Rachael is positive for chicken pox we won't be able to go in case there are other of our sweet immune-compromised friends present and while she's not contagious anymore, Peyton or Nathaniel could potentially be. That really stinks!

f.r.o.G…fully relying on God
–Anissa

"Where are we going today?"

"Today we get to go pick up the kids from camp!"

"No, that's not right."

"Yes, it's Friday…at dinner time we go get the kids from camp."

"We're not having dinner?"

"We'll have dinner, but then we'll go pick up the kids."

"Ok"

"Did you miss Bubba and Ray-Ray?" (OH Nathaniel would just keel over dead of humiliation if he knew I posted his family nickname on here…he may have felt a pain somewhere in his stomach at camp right now at this very moment.)

"I can't, I'm making stinkies."

"So much for multi-tasking."