Hope4Peyton

Someone (Thanks, Penny) dropped the idea for me to post about one day of our trip every day…that way I didn’t have to post a monstrously long, exhaustingly boring, bad-family-vacation-movie-from-last-year’s-trip-to-wally-world type post….instead I can stretch out the torture for a whole week!

Peyton’s doing ok today, she’s slept a lot…we did wear her pretty much OUT during the GKTW trip…plus she got her big dose of chemo on Monday….and we didn’t get to sleep until 4AM this morning with our middle of the night hospital run. Today her temp has yo-yo’d…. but for the most part it’s been decent….although I expect that it’ll start to raise as the evening wears on. She always gets her fevers in the evenings. She’s in a good mood and just watching movies and coloring.

I’ve spent the down time organizing my pictures from the trip and trying to figure out the best way to display the pictures. I think I’ll just post a couple from each day and then I’m putting together a slideshow of “The best of the GKTW”.

Day 1 – Thursday

We arrived at Give Kids The World bursting with excitement. We were shown to our villa for the week and were just awed by accommodations. The housing is set up like a subdivision full of duplexes and we were in one perfectly behind all the main buildings with easy walking access to everything. It was an awesome little house with two bedrooms, two bathrooms, a living room and kitchen….as the kids put it “This is nicer than OUR house!” The kids had a bathroom that was just about the size of their bedroom here, with huge shower and Jacuzzi tub, they were thrilled. There was a huge gift basket on the table with a specially made Give Kids The World version of Candy Land, stuffed animals, toys, candy, and chips. We spent a few minutes getting unpacked and settled in and then promptly ditched it all and headed for the pool. We then hit the ice cream parlor…we were dedicated to our mission to try EVERY flavor before we left for home….we came darn close!

Thursday nights at GKTW is always Christmas. We were blown away to head to dinner and see that in a matter of hours the entire place had been transformed into a huge Christmas party! Every tree was full of ornaments and there were decorations everywhere. There was face painting, a magician, horse-drawn carriage rides…but most importantly, in the Castle of Miracles, Santa was there to see every family and each child was able to pick out a Christmas present. We had a traditional Christmas turkey dinner that night and, of course, ice cream for dessert….you may notice that this is a common theme throughout our stay…ice cream for dessert, ice cream for fun, ice cream because it’s hot, ice cream because we CAN! Doug Powell made a firm commitment “Ten Pounds in 6 Days”…I’m pretty sure we all met that goal.

In the evening it decided to pour and I went to the orientation where we got bunches of goodies, plus our theme park tickets for the week. They gave us 3 days at Disney parks, 2 days at Universal Parks, and 1 at Sea World. One of the benefits of living so close to Orlando is that we weren’t under any pressure to use those tickets this week the way so many families who live in other states were. Those poor families were trying to cram in 6 days of theme parks and still partake of all the fun to be had at GKTW…I’m sure many just collapse as soon as they get home, possibly in the baggage drop-off at the airport.

I’m completely unable to explain how happy we were to be there. If you can imagine Christmas morning, your birthday and the best party you’ve ever been to…roll it all into one big ball of “YAHOO” and that’s about how giddy we all were.

f.r.o.G…fully relying on God
–Anissa

Apparently when Peyton says she doesn’t want to go home, she MEANS she doesn’t want to go home. A nice 5 hours at home was all she could handle and was all she was willing to give me.

All week at Give Kids The World she yo-yo'd with a low grade fever, nothing to get in an uproar about because she had absolutely no other symptoms. So, on day 3 I told her “Peyton, if you need to get sick, do it today…if you can’t do it by today, then you have to wait until we leave to get a real fever, got it?” It would appear that she got it! She did great the whole time we were there, but this afternoon she started to bounce up to the borderline range and tonight as I was skipping (not really, I try not to skip whenever possible) off to my very own bed, I went to check her one last time and her temp had gone to 101.8….which in cancer kid terms means "minimum 3 day inpatient stay at the hospital."

So, here we are. I have tons of stuff to do and catch up on, and we are stuck at the hospital. Stinky, but hey, I didn’t want to sleep in that comfy old bed of mine anyway! Keep fever-girl in prayers, hopefully it’ll just be a quick virus and we’ll go home after nothing grows from her blood culture.

I’m still in the middle of putting together a GKTW post and figuring out how best to deal with the pictures….I guess I’ll have plenty of time to do that now as Peyton plays with the controls on her bed for 3 days.

f.r.o.G…fully relying on God
–Anissa

We made it home, and there is so much to tell. I have roughly 600 pictures….promise I won’t post them all! It was an amazing trip, they really do give kids, dads, moms, and siblings THE WORLD!

I can’t wait to sit down and post it all and share it with you.

f.r.o.G!
–Anissa

To explain the “comment” that Penny left, reassuring the kids that I wouldn’t actually leave them at home this week, I should tell you about the fight that took place this morning. There was a scene in the kitchen that went like this:

Cabinet door wrenched open…GRUNT!
Cabinet door slammed shut…”No!”
Cabinet door wrenched open…Louder grunt!
Cabinet door slammed shut…”It isn’t!”
This is all minus the dramatic huffing, puffing, eye-rolling, sneering and condescension that went along with this obviously intellectual argument.

So I simply told them that in no uncertain terms that they –Nathaniel and Rachael- were to stop everything they were currently doing, any plans they have of doing it later, in fact, any thoughts they may have of future squabbling in the years that they reside in a house that we pay for…or, and my exact quote was, “When your friends at school ask you what you did over summer vacation you can tell them ‘My mom, dad and sister with cancer went to Disney and we didn’t get to go because we fight too much!’”

According to the babysitter, they were lovely to each other all day.

I’m really glad that we go to the clinic that we do….I love our nurses….I’m thankful for the medical team we have available for Peyton. And after today, I’ll be glad to not see them for a while! It was a long day….a full DMV long…all 200 hours of Lord of the Rings + Extras long…”Do you know how long I was in labor?” long….it was just the day that never wanted to end.

Peyton and I got to the clinic at 9:30 and because of the seeming endless number of patients, we didn’t start getting Peyton’s blood until well after 11. She was pre-medicated with Benadryl because she’s been known to break out in hives during infusions of red blood, which happens because of a reaction between the her immune system and the proteins in the donated blood. She slept like an angel through the first two hours of infusion and that made for a wonderfully peaceful two hours.

Then she woke up and watched a movie, she ate some snacks…and started coughing. I had been out of the infusion room for a few minutes and when I came back in they were laughing at her because after a cough or two they told her to stop it and then she would fake cough and giggle. They don’t want coughing because that could be a sign of an allergic reaction to the blood infusion. So, we’re all joking about Peyton’s fake coughs when I notice a red patch around her armpit…that led to the red patch on her chest…which led to the red patch ALL OVER HER BODY! She was literally bright fushia over 60% of her body. The kid had hives from her collarbone all the way to her thighs, front and back. Because of the way she was laying and the little dress she had on, it was all discreetly hidden by clothing as it developed and by the time we found it, well we were all alarmed. They had to stop her infusion, but luckily she was almost done anyway and they had to treat her with more Benadryl and then some Hydrocortosone.

Because of all the hive fun it was 4:30 before we got to leave the clinic…the hives were fading, but still very apparent. She has to take Benadryl every 6 hours for the next 48 hours before the threat is over. At bedtime the worst of it was over, only a few patches were visible and most of it had faded away, but I see lots of Benadryl in her future with any infusions.

Tomorrow is our big day! We take off for Fun Time! There really isn’t any way to explain how jazzed we are. I just did a little dance in the living room that I’m frankly not ashamed to tell you about but would be horrified it it popped up on YouTube. It’s awesome to just imagine all the fun we’re going to have.

I got the most awesome phone call today. A woman I’ve never met before called me right after I walked in the door and told me that she had started up a foundation in Washington to help families dealing with cancer and especially pediatric cancers. She shared that she’d been following Peyton’s site and has inspired by the blog to get more involved and now she’s making this awesome commitment with her life! She’s going to email me more information about this organization she’s starting, but after such a long and trying day it was such a blessing to hear these words and to know that we’ve had an impact on someone in such a tremendous way. That just thrilled me to the ends of my soul to hear and renewed my faith in the fact that the Lord has given us this burden for a very important reason!

I’m planning to take a computer to download pictures as we go along, but I don’t plan on having time to actually post anything while we’re at Give Kids the World. Who knows, I might be so bursting with fun news that I can’t help myself…I am a bit of an obsessive.

f.r.o.G…fully relying on God
—Anissa

There is a very good chance that one of the kids could spontaneously combust within the next 48 hours. The excitement level in our house is so high that we’re all a little light-headed and dizzy. We are firmly overpacked (because that’s just how I like to do it….and somewhere in the back of my mind is the threat of the Hawkins’ 3 week emergency stay at Arnold Palmer Hospital), the princess gowns, the autograph books, and every other random odd and end that we could possibly think of is congregating around the “to go” pile. We are only allowed one suitcase per person and I think we may seriously max that out.

We found out that we have more friends that are going to be at [url=http://www.givekidstheworld.org]Give Kids the World[/url] at the same time we are. Luc Carlton is 4, he is also in treatment for ALL leukemia and we met the family through the [url=http://www.childrenscancercenter.org]Children’s Cancer Center[/url]. They will be arriving at GKTW on Saturday so we’ll have lots of special friends to enjoy our time with. One of the things that has been brought up is that we may get the chance to go to the Bucs training camp while we’re over there!! Doug Powell has decided to rename it “Give Dads the World” in his overwhelming joy at this prospect. We aren’t really Bucs fans (no booing or hissing please), Pete’s a Steelers fan and I’m a Colts fan…but we’ll enjoy the football fun anway! Any chance to get a scoop on the fantasy football league is a good thing.

This morning we went for our weekly [url=http://www.childrenscancercenter.org]Children’s Cancer Center[/url] Lil Tales play group, which was fun as always. The kids got to play outside in sprinklers and wading pools and the moms room was PACKED! It is awesome in a way….to see the parent coming together in support and encouragement of each other is great…but so freaking sad to see the numbers rising to the point where every chair is filled is just devastating. There were three new moms to the group, one that I knew from our clinic and two that I met today. Just keep praying all these families through the struggles…emotional, physical, financial, social, work-job-relationship-related…we all endure through.

I had three different conversations today where I said the words “Yeah, we only have 2 more years of treatment to go!” And I really do see it that way, with enthusiasm that we’re 1/3 of the way through, that when I felt suffocated and like there was no way I would be able to see her through the first week we’ve actually completed a year…that’s a reason to rejoice! But I saw the reactions that said “2 more years! Are you insane? That’s like 24 months!! That might as well be forever.” I felt a little disheartened. But I know that each milestone we reach is a reason to celebrate and getting through radiation was a big deal, getting to maintenance was a big deal and each day that that we draw closer to the end of treatment is a big deal to us.

Tomorrow Nathaniel and Rachael are getting dropped off with my friend Kim so that she can take them with her kids to see the free movie and hang for the day while Peyton and I spend the majority of our day getting her pumped full of “feel good” juice. It’s always good to see something that gives her an immediate result because when we leave the clinic after getting red blood her color is improved and she always feels energetic and sassy.

And just in case anyone forgot…WE’RE GOING TO VISIT THE MOUSE!!!! Whooo hooo

f.r.o.G…fully relying on God
–Anissa

ps…And for more proof that we're breeding absolute genius over here….

Rachael – "Where does the Great Wall of China start?"

Nathaniel – "China"

Rachael – "Where does the Great Wall of China end?"

Nathaniel – "China!"

Rachael – "Why is it great?"

Nathaniel – "Because it's so big."

Rachael – "Why is it China?"

Nathaniel – "Jeez, Rachael…because if it were anywhere else it WOULDN'T be the Great Wall of CHINA!"