Hope4Peyton

We had a fantastic 4th of July!

We got up and headed out to the parade where we sat under a tent and the kids scrambled for candy and beads. They came home with so much parade junk (that I'll just end up throwing away in a few months) but love each and every piece. They got a good splashing from the fire trucks, totally soaked to the skin and enjoying every minute of it.

Afterwards we went out for lunch with our friends the Kennedys and Pete's mom….chaos! Then we came home and we all lapsed into a mild coma…naps are so very very good. In fact, beyond the parade fun, the great time with friends, the fireworks….the nap was by far the best part of my day.

We spent all of 2 minutes watching the fireworks from as far away as humanly possible while still being able to see the lights, but then Peyton decided it was still too loud. This from a child that can scream loud enough to cripple dogs all over our neighborhood….but the faint boom of the fireworks 4 miles away is too much for her tender ears. So, we moved to the other side of the apartment building and amazingly, she could handle the volume from there…she is such a faker.

We got home late, the kids coasted to bed after 10:30….again with the naps being the best part of the day.

Tomorrow I have a doctor appointment in the morning, my friend Kim is coming to hang with the kids so that someone can let in the washing machine repair guy Skip….seriously, if he fixes it he will be a permanent fixture on my Christmas list…and then Liz Brewer from the [url=http://www.brandonfoundation.com/]Brandon Foundation Angels Among Us program[/url] is coming to meet with me to see what kinds of things are wrong around the house that they might be able to help us with. I have a list. It's a scary list.

f.r.o.G…fully relying on God
—Anissa

There is one thing I have definitely learned tonight….24 hour laundry mats invite an interesting hodge-podge of clientele after 10PM. I'd like to say only the really strange go there at that time of night….but then again, I was there….and then again, that doesn't necessarily dispute the first statement. Because of miscommunication we weren't able to get the washing machine fixed today, but I now that I've been the laundry mat, we can last at least another week! My very wonderful friend Monica is working on a backup plan if the washer can't be fixed…because she is cool like that.

At least Nathaniel has clean skivvies again…he'll be very excited. I guess our style of parenting is to keep their expectations low so we can exceed them frequently!

Peyton's feeling much better now that we've got a handle on the urinary issue. I'm pumping her full of fluids to keep her urine less acidic and hopefully that will help keep her from having irritated skin and pain. Warm baths and rash cream are working wonders to make her feel better. She told me today "I made pee pees and it didn't hurt!" That, my friends, is something we all strive for.

This morning I packed up the crew and headed to the Children's Cancer Center for our weekly playgroup. It was a pretty full house including a new family. Baby Leo is 4 months and has been diagnosed with Neuroblastoma. It breaks my heart to see this beautiful baby and to know that his body has known cancer! The family was so sweet and poor dad had to listen to our girly chatter for two hours! Every now and then he'd perk up…the words TIVO, Steelers and DirectTV got his attention, but I think he managed to strain out most of the conversation about puberty! I hope we didn't scare him off.

Post yard sale work is still in action….I've finally called all the raffle winners and hand-written about 5 million thank you cards. Still, we have piles of stuff leftover that I'm not quite sure what I'm going to do about, that includes at least 10 packs of hotdog buns. Every now and then I go sit in the girls' bedroom because not only is it the cleanest room in the house, but it's the farthest geographically from the mess.

When I talked to Nikki Hawkins yesterday about her Make-A-Wish wish she had three really rocking choices. A trip to Australia…a Hollywood red carpet event like the Oscars…or being in a romance movie. I'm considering teaching Peyton to say "I've changed my mind…my wish is for mom to go meet Brad Pitt." Would that be wrong? Our wish trip is coming up at the end of the month, we're going to Orlando to stay at a place called Give Kids the World and get the opportunity to hit all the Orlando-based amusement parks! It's going to be so much fun and I'm counting the days.

I've added a few pages to the website…an events calendar to post fundraisers and other cancer-related functions and a prayer request page. There's always a great need for prayer and support for all these wonderful kids, and this is a way to make sure that at least the people who hit this site can get in on the prayer chain. And as you may have noticed I changed the banner yet again…I really need to get out more.

And I'd like to send a HUGE thank you to Penny Hawkins….she took the time to teach Peyton the proper hand gesture to go along with her new favorite phrase "blah blah blah"….now she not only rolls her eyes when she says it, but she opens and closes her little fingers to go along with it. I don't have an advanced 3 year old, I have a mini-teenager now. Love you, Penny! That reminds me that I need to set up an appointment to get Nikki her first tattoo.

We wish everyone a happy and safe 4th of July! We are heading out to the local Brandon parade and then to watch fireworks somewhere we can oooh and ahhh over the show but not have Peyton freaking out over the volume of the bangs. I hope you all get to spend quality time with your families and have a ton of fun!

f.r.o.G….fully relying on God
–Anissa

Here are some more pictures….because I think a petting zoo would have made the Death Star a much warmer, happier place!

Today was a looong day….clinic was uneventful, no chemo was given….but the girls got to make ice cream in ziploc baggies with Kyleen, the child life specialist. After we got done there we headed to St. Pete so that we would have time to hit the hospital and visit [url=http://www.caringbridge.org/visit/nikkihawkins]Nikki Hawkins[/url]. It was a great visit, I was so glad to see her and her mom Penny. After knowing how hard her last few weeks have been, it was good to see her smiling and joking with Rachael and Peyton.

After our visit we went to have Peyton's checkup with her radiologist. Dr. Cotman seemed pleased with how well she's handled the treatment and her side effects have been mild. Some of her counts are lower than we'd like, but that is to be expected with the consolidated and combined effects of the radiation and chemo. Her appetite has dwindled down to nothing, the skin on her scalp has little bumps, some peeling, and little white spots. Peyton has had some fatigue, but that may just be the results of a crazy weekend schedule. Of course, we all have a fair amount of fatigue after the yard sale.

Tonight we had another freaky episode of "fun living with a neutropenic child". Peyton was crying out in pain every time she had to pee, and when I thought about the day I realized that she hadn't peed for most of the day. She would grab herself in a manner usually associated with truckers or construction workers, and would scream every time she tried to go. I called the after hours numbers for our oncologist, but thanks to a fairly ineffective call center, we couldn't get a correct phone number to the doctor. I had to make a decision between taking her to the ER at All Children's Hospital or running her to the after hours pediatric clinic. I ran her to the office just down the road and they catheterized her. First they took a sample for testing and then they just emptied her bladder…which was a good thing because I think if we'd waited 10 more minutes it would have just burst…my poor baby. The test came back that she did not have a bladder infection…her urine is so acidic that it has irritated the surrounding skin and that's what is causing her pain. Hopefully, with a topical treatment of medication, the irritation will heal and she'll be able to pee without crying and that the trauma of the new "wee wee tubie" will be forgotten.

After we got home we finally got the call from the oncall oncologist, but she wasn't able to give us any more suggestions that the after clinics hadn't already given. We're praying for this pain to be relieved quickly!

Nathaniel's dentist appointment went well even though I wasn't able to be with him. Grandma Sharon took him for his filling and cap, it took two hours and then she rewarded his bravery with a lunch and a showing of Ratatouille. Finally I think that we've got his mouth under control….just about the time that I'm noticing that the new permanent tooth coming in Rachael's mouth is at an angle that can only mean a future of braces….a LONG future of braces.

Peyton told me tonight that next week she and I are going to outer space, all the way to the stars in a rocket ship that only fits two people. Awwwwwwww I'm not sure whether to be thrilled by her sweetness or concerned by the fact that she's willing to move beyond our atmosphere to get away from her siblings.

Tomorrow is a big day for us. We have someone coming out with much hope that repairs will be made to the washing machine….especially Nathaniel's hopes, as he is officially out of clean underwear!

I have to tell you that I was just horrified when the doctor at the after hours clinic asked me about Peyton's facial bruises tonight. I hope that he was satisfied by her telling him about getting launched from the bounce house, but nothing quite like that suspicious look that makes me wonder if Child Protective Services will be out for a visit. At least I know I have witnesses!

f.r.o.G….fully relying on God
–Anissa

Definition of SORE….by "the free online dictionary"….feeling physical pain; hurting….by Anissa….48 hours in the the blazing hot June sun, lifting tons of other people's stuff and feeling the effects the next day!

Worth it? Absolutely!

Friday we got the church early in the morning to prepare for donation day. We weren't really sure what to expect, but the first arriving vehicle was my friend the Wylies, and when Warren got out he said "I've got a water heater and a dishwasher." I laughed because I figured he was joking and just named the two heaviest things he could think of, but when he opened the back of the SUV, there they were…a dishwasher and water heater! When waiting on other people's toss-aways and cost-offs, you're never quite sure what you're in for. However, the people who showed up all day long to drop off donations were fantastic! We had so much stuff, it filled up over 25 tables, lined the ground underneath, covered several tarps and we had a ton of furniture items! It was unbelievable to see what rolled in throughout the day.

It took us forever to get organized, I guess we underestimated the actual manual labor involved and only through the hard work of dedicated friends were we able to be ready for kickoff this morning. We had to take in all the stuff, set up the tables, price and price and price, organize to some extent, and prepare in case the rains came. It was horribly hot, and I got a fierce sunburn….the kids played with friends all day (they actually used the church baptismal fountain as a wading pool…these are the holiest kids you'll ever see!)…we started working at around 8:30AM and I know I didn't walk back into the house until almost 10PM last night.

We went through mounds and mounds of stufff, we set up for the raffles, we unloaded what felt like a million pounds of furniture and toys…it was crazy! When we finally got as much done as we could in the evening, Pete stayed up at the church overnight…sleeping with the stuff to watch out for all our goodies. I got up late, planning to be there at 6:30, but waking up at 7! Luckily I had taken two showers the night before to take off the sweat, dirt and stink of donation day.

By the time I got there at 7:30AM, things were under way….our friends had shown up and were already selling! Wow.

There was a snow cone booth, a food booth with hot dogs, chips, and drinks, we had a table set up for temporary tattoos for the kids (and some adults), we had several tables set up for baked sale items, [url=http://www.ponypartyplus.com/]a petting zoo[/url], a [url=http://www.happykidsinflatables.com]huge bounce house[/url], and even tables of brand new stuff that people had brought for the cause! It was so much fun to have everyone's kids there to help, we had special jr helpers selling candy and baked good, hotdogs and sodas, snow cones, doing tattoos, selling tickets for everything and just keeping the energy levels up.

I couldn't even begin to tell you how many people there were throughout the day….it was insane in the morning, but steady throughout the day.

Within the first hour of the hour of the bounce house setting up Peyton was brought to me in a wailing ball of tears. On her way out of the house she'd gotten bounced right onto the concrete and had a nice case of road rash on her forehead and cheeks where she'd landed face first. It took a little while, but she got back up into fighting mode.

–Bounce houses are not for the faint of heart!

One highlight of the day was when the [url=http://fl501st.com/tampabaysquad/page1.htm]Tampa 501st Stormtroopers[/url] arrived. That was supremely fun and cool! It was so funny to watch them walk in formation and to see the kids' jaws just drop to the ground as they walked by. The costumes and props were so darn authentic the kids were in awe! They mingled with the crowd, took lots of pictures and just added a lot of fun to the day for the people who came. They were phenomenally nice to Peyton, they went around the corner of the building and took off their helmets to show her that they were just real people inside and after that she was thrilled to be with them. They gave out tattoos and gave Peyton special patches that name her as an honorary Jr. Trooper! The 501st is an international group who provide an amazing amount of charity work, and we were just blown away by the kindness of these people….it takes a special person to come out in 98 degree weather dressed from head to toe in those costumes, just out of the goodness of their hearts and willingness to support a good cause. Awesome!

–Peyton says "Those are my buddies, I love those guys!"

–Poor Wendy….that's what happens when you don't sell enough tickets!

–Can we say "bliss!"

–What Stormtroopers look like on vacation

Nathaniel had small R2-D2 figurine he was running around with saying "Is this the droid you're looking for? This is the droid you're looking for!" And when the StormTroopers arrived, one of them walked up to Dante, a classmate from Nathaniel's school, and asked "Have you seen any droids?" Dante took one look at this guy and backed up saying "Nathaniel has them!!" That was hysterical! Nice to know your friends have your back, Nathaniel!

When all was said and done, the raffles were pulled, everything from gift certificates to restaurants and Home Depot to granite countertops, we'd had our last sell-out-everything-is-a-dollar sale, the cleanup was performed in a record breaking amount of time…..we raised [strong]5500$ for Peyton's Fund[/strong]!! That was tremendous and we are so thankful for each person who helped, donated, gave of their time and effort, who sweated and sold and made this day possible. Here are a few who need special mention:

THANK YOU to

Lisa Bedrosian and family
Kathy Vida and family
[url=http://www.givinghopethroughfaith.org]Sherry Tucker [/url]and Lexi and friends
Monica Tappan and family
Kim Kennedy and family
Sarah Feakes and family
Linda Linderman
Wendy McPike and family
Melanie Shenning and the Blooms
[url=http://www.caringbridge.org/fl/jacob]Heather Duckworth[/url]
[url=http://www.paigewirth.org/]Holly Wirth[/url]
Christina Thomas
Tami Schaller
Maryellen Flint and family
Brandy Fishman
Candace Hollingsworth
[url=http://www.ponypartyplus.com/]Jennifer Borg and family[/url]
[url=http://www.lifeisagiftphotography.com/LG.htm]Lisa and Harry Greenaker[/url]
Chris Toth
Sharon Mayhew and Maureen
[url=http://www.baylife.org]Baylife Church[/url]
and so many more that need acknowledging, plus each and every person who took the time to come out and drop off the stuff that made the yard sale such a success!

Today has just been a day to rest and catch up. Laundry is seriously piling up without a washing machine, but Holly Wirth hooked us up with a friend who is going to see what they can do to help us out…that's so huge! The Brandon Foundation is also coming out later in the week to meet with me and see what other home repairs they may be able to help us out with….we have so many issues with our house, it's scary, but if they can help with a couple it would be an enormous blessing!

Our week starts off with a bang tomorrow. Nathaniel is going to the dentist, thank you Grandma for taking him, to see about the other tooth giving him trouble. I have to take the girls to the clinic so that Peyton can get chemo in her port and her spine if her counts meet criteria. We'll also start 5 days of steroids and being our home chemo schedule. In the afternoon we have to head to St. Pete to meet with Peyton's oncology radiologist for a check-up, but she's doing well and I'm betting they'll be pleased.

I want to give huge thanks to God for allowing Peyton-Palooza to go off without a hitch and for providing the friends and support needed. Without Him in every detail and step of the way, I know it would never have come together. We were continually blessed by the depth of love and encouragement given by those around us. I truly hope the day was glorifying to the Lord, because we felt his blessings throughout it all. I have to share that one answered prayer just blew me away. I was concerned about the weather, and it threatened to rain all day on Friday, but we all prayed and knew that if it rained and had to be cancelled, there was a reason and a purpose. But it wasn't until I pulled into the driveway of our house…turned off the truck….the first raindrops fell on the windshield. It just felt as if God was saying "I held it back just for you."

I have tons of pictures to post and share, I'll get them up as soon as I can.

f.r.o.G…fully relying on God
—Anissa

More pictures of Peyton-Palooza are in the gallery too.

Come one, come all.

I got the lovely opportunity to spend the night under the stars in an office chair and thought I'd sneak out to clean up a bit.

When I left, the big air bouncer thing was being set up and the petting zoo was getting going. No sign of the 501st just yet, but we know the troopers on their way! Go Vader!

There's literally a TON of garage sale items (clothes, books, toys, tools, furniture included…and plants too!). The garage salers are out in full force so get here soon!

There's also many raffle items, sno cones, hot dogs, face painting, and some other things that I can't recall at the moment because I've been up all night.

Directions to Bay Life

Hope to see ya there!

Peter

P.S.
A great big huge WHOPPING thanks to all of the volunteers helping out and to everyone that donated items. Each and every one of you (and there are too many to name and I know I'd leave one out on accident) are amazing people.