Hope4Peyton

It has been a week of huge progress for Peyton. Nothing CNN notable, but definitely huge in her world.

First, she has been making great strides in the potty department. In fact, the past several nights she’s able to make it through the night in panties instead of a pull-up. She’s been able to go out of the house in panties and let me know when she has to go and that’s fantastic! We’re still having some major issues with the #2 department, but it’s a work in progress with definite signs of improvement.

Secondly, I am working to covertly wean her from the binky. I hate that she has it, her teeth are already showing signs of serious binky-damage, but I have refused to jerk it from her as it has been her greatest comfort. She doesn’t have a security blanket or a favorite toy, it’s just always been the pacifier. So, now that she’s moving towards a less traumatic life, I’m making the attempt to get her less reliant on having one all the time. It’s hard, but she does ok if I keep her very occupied.

Third, today at church, Peyton went to the her age appropriate Sunday School class. Ok, HUGE! She has been going to the adult service with Peter and me since her diagnosis, partly because of the germ factor and partly because she’s not wanted to go with the kids. We’d talked about going to big kid church and she agreed, but I half thought she might back out when we got there. She just walked right in, found a table to sit at and started coloring right away. I did the anxious parent thing “my kid has cancer, please make sure everyone washes their hands, please call me to pick her up if any sick kids show up, please don’t let the other kids touch her head, I’m a little crazy, so just roll with it.” She did great, she was playing and having a wonderful time when I went to pick her up.

It really is this movement to get her back to where she would be if she hadn’t spent the last 14 months in treatment. She’s terribly smart (oh doesn’t every parent say that?) so I’m not to worried about her lacking in that regards, but I do worry about her social skills with kids her own age. She spends so much time with adults that I forget she’s not just a strange little bald midget.

Our friends the Fishmans invited a bunch of families from the Children’s Cancer Center over to their place to enjoy Labor Day with a cookout and pool party. We’re looking forward to that, the kids got really spoiled with the pool at the condo.

Tuesday is Peyton’s big monthly chemo trip to the clinic. She gets her port accessed and her dose of Vincristine, her dose of Methotrexate, starts her 5 days of steroids (oh joy in my heart!) and her never-ending nightly 6MP. Of course, we’ll be checking her counts first to see how they are maintaining and make sure that everything is where it needs to be. It is just strange not to be going every week for those counts, I watch her color a little more closely because I worry a little with so much time between visits that I’ll miss a significant drop in counts.

We hope everyone has a fun and safe holiday tomorrow!

f.r.o.G…fully relying on God
–Anissa

I got a haircut today. That’s big stuff around my house! Next thing you know I’ll be wanting to close the door when I shower and sleep by myself. I was describing the hairstyle I wanted…a little off here, a little up here, something like this, angle like that…and the girl says to me “Oh, you want Posh Beckham.”

Yes, that’s what I said…make me a Spice Girl! I cringed mentally and almost asked for the Florence Henderson instead, but I it, what can I say? So I love my new hairdo, however I look nothing like Victoria Beckham…are you surprised?

The sudden flurry to groom comes on the footsteps of the news that Peyton and I will be making an appearance on the Studio 10 morning show. Representing the Pediatric Cancer Foundation for a segment on the Cure Kids Cancer Challenge, I got wrangled into this one. My friend Holly Wirth called and the conversation went something like this…

“Do I have to?”
“No, but…”
“I’ll do it if you will.”
“I said I’d do it if you would too.”
“Ok, so we agree that we’ll both do it.”
“Yeah, I guess.”
“We just do it and pretend that it never happened.”
“Sounds good.”

How can I turn down an opportunity to talk about something so near and dear to my heart? Hopefully they’ll keep the cameras on Peyton and let her cute little face speak volumes.

Oh, and Peyton’s Flashes of Hope picture should be in the Sunday Parade supplement some time this month. The article is so sweet and her photo is one of 25 picked to be online at the Parade website slideshow.

Yesterday there was a meeting for the Cure Kids Cancer Challenge, and because we’ve had so little time to pull this event together, it’s awesome to see the progress that’s being made. We just started planning in July and to see all the elements coming together feels good. It is so wonderful to be a part of the planning committee, to be sharing this job with so many other dedicated and committed people. I’m just honored to be able to help out. We are still recruiting people for walking teams, we need people to sign up to walk and spread the word. Please take the time to take a few flyers to whatever businesses you frequent, to your place of employment, and consider building your own walking team. It’ll be one of the most rewarding things you ever do, you will be helping to give these phenomenal cancer kids the tools they need to fight their battles.

One of the fun things I get to organize as part of my committee responsibilities is the awards. We decided to nix the traditional trophies and medals and go with something very personal and uniquely special. The Pottery Patch in Brandon is going to donate the supplies and the space for us to have a bunch of our local cancer kids to go in and hand-paint tiles to give as sponsor and winner prizes. Ok, is that so much cooler and sweeter than a trophy? If we’re going to get people to come out and walk for the sake of our kids, we are going to keep it focused on them in every way we can and let the kids thank them in a very personal way.

There are so many prayer needs.

Scott Patterson is a boy in Brandon who has T-cell ALL Leukemia, this makes his cancer much harder to treat and he is at a much higher risk. He has recently suffered from shingles and I just found out that he has suffered a stroke due to a blood clot. He is currently at St. Joe’s hospital and we pray for healing of his body and strength for his family.

Hannah Deal still needs our prayers. Her parents are finding incredible strength as they face her ever-shortening time and we continue to lift them up in prayer. My hopes are that her days will be happy ones, that they will be able to make wonderful memories together.

Sam Lee is friend of ours who has ALL leukemia, and she is struggling through a barrage of side effects from her chemo. She has a great deal of body pain, she is so sick from the meds and her spirits are just low. Please pray her through this, the constant wear and tear on her body is making it hard for her to cope with school and to keep her happy.

Delaney Potterbaum is another sweet friend who is battling a tumor. I posted recently about how it suddenly became aggressive and her family and the oncologists have been searching for a path to take regarding treatment. They have chosen a protocol, but they are discouraged by the differing opinions of the hospital staff. Some are being optimistic, some are treating it as if this is the beginning of the end for Delaney. Kara is ever positive that the Lord’s will is in place for Delaney.

In the face of all the prayer requests, we give a huge THANKS to the Lord for answered prayers. Baby Leo and Justin Guadineer both received fantastic news and had bone marrow results that came back cancer free! Both little boys have Neuroblastoma and this is tremendous news for them, a huge step in their treatment. We pray that God continues to bless these two boys with positive news and successful treatments.

I could go on and on and on about kids that need prayer, Sydney Sims, Jessica Rose, Maddy, the list just never ends. As overwhelming as it is, I know that today being the first day of National Childhood Cancer Awareness Month is a step in raising the awareness we need so badly. We are going to make the difference between life and death, between a real chance and a bare hope for all these kids with our dedication and perseverance.

Oh, I forgot…this being Peyton’s site and all…Peyton is on the books to start physical therapy in October. One of the side effects that she has suffered with has to do with her legs. She’s had limping issues, she’s had falling issues and now she walks like a duck. It’s hard to explain and I’ll have to get a picture of it to show, but if you look at the way she stands it’s so obvious something’s wrong. From her knees down her legs go out in a V, and she rolls her feet to the inside so that she walks in the sides of her feet. It’s very bad for her knees longterm and I’m concerned that if she continues to walk like this she’ll be stuck doing it forever. She is going to be working with PT to correct this and she’ll probably need an insert to go into her shoes (this isn’t going to go well as she’ll need to wear sensible shoes) to help correct her stance.

I hope everyone has a great and safe holiday weekend. We are going to a pool party with some of our other cancer family friends, it should be a good time!

f.r.o.G…fully relying on God
–Anissa

One of the benefits of being awake at 4:30 AM is that you are exposed to such wonderful discoveries…like the fact that being awake at 4:30 AM pretty much blows! My mother in law needed a ride to the airport for a ridiculously early flight and I volunteered to do it….because I am not right in the head. Poor lady, I was so out of it I tried my hardest to drive her to Clearwater, but she kept me going in the right direction.

Because I’m one of those people who worries that they won’t wake up if they HAVE to be somewhere at some obscene time, I couldn’t fall asleep. So I rocked today on 2 hours of sleep.

Nathaniel’s legs seem to be outgrowing the rest of him, I know they’re outgrowing his school uniform pants. My plan this morning was to drop the kids off to head to class together and then for Peyton and I to boogie on over to where they keep the MASS amount of used uniform stuff. On our way there Nathaniel ran over to remind me that it was Thursday, chapel day, he was supposed to be wearing pants and in my ultimate mom slacker mode I had dared to let him leave the house in shorts!! So my quick decision was for him to run with me to the used clothing selection, we’d snatch him up a pair of pants, do a quick switch-a-roo (pray that whoever dropped off the clothing was kind enough to wash them first) and then he was good to go for the day. Plan executed….life good.

Then I start running into people. “What happened to Rachael?” “Did you know Rachael had a meltdown?” “Rachael was crying hysterically!” “Rachael was crying in class.”

Great. What was this new mess?

I finally got the story from my friends Meg and Jennifer who both have girls in the first grade. Apparently when Nathaniel ditched her to panic about the pants situation, she had a meltdown when the gate opened and it was time to go to her classroom. Now, every day since school started I’ve walked them to class…and most days that I COULD do it for the past two years…so it’s not like the routine is something new and foreign to her. The gate opens, the kids take off like the running of the bulls and she should go to her class. Instead, apparently she stood there and just started crying. Poor baby. She was so distraught because Nathaniel abandoned her there, she just melted down. Jennifer walked her to the class and handed her off to the teacher and she did fine for the rest of the day because no one called me to tell me she’d gone into a catatonic state from shock, but I did feel really bad that she’d gotten so upset at being left alone.

Did I tell you about my nomination for Mother of the Year? No? There’s a reason for that.

Peyton and I had a splendid time with some friends from Cracker Barrel. You know you spend way too much time at a restaurant when you start hanging out with the staff and their families socially. But Jeff and his wife Lorrin also attend out church with their two sweet boys Alex and Nick. So we finally made a playdate at Chick Fil A, where Peyton refused to actually play with the boys, but I had a good time talking to Lorrin and Jeff. They got a funny glimpse into our lives with a woman who was sitting beside us would NOT leave us alone. She just could not stop interrupting the conversation to ask questions about Peyton, to tell us about every person in her family who’s had cancer, to ask about All Children’s, to make sure I went to church, it went on and on and on.

Yes, it drives me crazy. Yes, it happens more than you’d think. People border on being rude, and sometimes they run swim right over that border as well….but I always try to remember that they do it out of the best of intensions and always trying to be their form of helpfulness It’s hard sometimes, when all you want to do is get through a complete sentence!

We got a late afternoon call from the Children’s Dream Fund, the group that sent us on our dream wish trip. Would we like to go to a Buc’s game? Are you kidding? Would we like to bathe in ice cream and be topped in whipped cream? Well, maybe not, but we were all about the game. It was a stretch because the game started at 8….that being the time we’re normally shuffling the kids off to bed. But we decided that since they only have a half day of school tomorrow, it doesn’t really matter if they’re freeze dried zombies.

Am I ever glad we went! Never would we be able to give them the opportunity of front row seats right under the Pirate Ship at Raymond James Stadium. Yeah, it was a pre-season game, but it completely rocked! We had so much fun and we had the Powells there for part of the game, the 6-pack reunited again. It was my first NFL game, so it was fun to see in person instead of on tv…I missed the instant replay, but it was so cool to be RIGHT freaking there! Because we were sitting in the front row the action was just too awesome. Two touchdown were right in our faces! The cheerleaders were really close which thrilled Peyton and Pete. The pirate ship being so close was hard because every time it went off Peyton jumped about 4 feet in the air, but she learned that whenever the crowd went wild to just cover her ears.

It was a ton of fun, we got to sit in the are reserved for “Amigos de Garcia” and also got t-shirts announcing our membership in this club. Much fun! We’re sitting just feet from the action, front row to all the fun and Rachael points to the nosebleed seat and says “I’d like to be sitting up high.” I told her that if we’d had to pay for own seats we would have been!

A HUGE thanks to the Children’s Dream Fund for providing us yet more Buc’s fun.

f.r.o.G….fully relying on God
–Anissa

Please take a moment to check out the Event Calendar link. There is so much going on and if you help can with a donation, by spreading the word, or just saying a prayer to support all these effort, please do!

f.r.o.G..fully relying on God
–Anissa

Getting the kids ready for school and out the door isn't the hardest thing in the world. I could be trying to nail jello to a tree, for instance.

In the bathroom by themselves, when they think no one is paying attention, I hear Rachael and Peyton talking….having a conversation…like two pseudo humans!

Rachael leans over and so sweetly says, "Peyton, I love you."

Peyton looks over and smiles at her and says, "Me too."

I almost burst! These two are generally at each others' throat, they squabble over everything, and they are professing their sisterly love….and I'm not forcing them to do it!!

And then Peyton leans over and says, "I love myself."

f.r.o.G…fully relying on God
–Anissa