Hope4Peyton

Happy Birthday to my loving sister Angela. She’s been more than a friend and more than a sister. I love you, sis!

Alone again. Peter left today after a full week at home with us. It was busy and he was so needed to be here for us all. We enjoyed the playful time with daddy, the laughs we just don’t quite get when he’s not here to share them and I sure needed him through a week that has more than it’s fair share of emotional lows.

Today we spent that time where we should be having fun but we can’t quite get into the spirit of it because we know the goodbye is coming. Nathaniel did skip out for a trip to the movies with his big buddy Eddie, a sweetheart of a guy who took Nathaniel to see the “Spiderwick Chronicles”. Rachael is always our crier, she sobs so hard when it’s time for daddy to leave. She always bounces back with some love and comfort, but she takes it extra hard when the door closes and she hears the car drive away. Peyton was asleep when Pete left, so she was sad to wake up and daddy was gone. We hugged a lot too, but she is already looking forward to our long spring break trip up to visit “Daddy’s house”. They think apartment living is pretty glamorous, they have never seen what their father’s apartments look like….boy are the in for a surprise!

Saturday we hit some events we had planned and we missed some. I was still feeling a bit YUCK after my Thursday procedure (which since I’m getting a bunch of emails of concerns, I had an endometrial eblation, you can google it if you really want to, but be prepared, it’s not roses or sunshiney!) and we missed getting to go to our friend Allie’s pancake breakfast in the morning. We missed going to another fundraiser for our friend Shadrianna. I really wanted to make it to both, but sometimes you just have to know your limits and I couldn’t drag myself all over the place that day.

What we did get to do was the St. Baldrick’s shaving event at O’Toole’s Pub in Brandon. It was amazing!!! I was expecting it to be fun, but I was completely unprepared for how emotional I got. I’ve spoke at several functions lately, the Breakfast of Hope being the one I really had to steel myself not to bawl like a baby, but this one caught me completely off guard. We had two special friend Brian McPike..father of Rachael’s BFF Alyssa…and Greg Wynn…our fantastic next door neighbor…who were singed up to be shaved. And for the love of Joe I see Pete’s bald head all the time and not a tear is shed! But THIS….this struck me hard. Jo (my brave and outstanding friend who is about to get shaved in honor of her daughter who’s battling leukemia), be ready, it’s just MORE than I thought. AND if you haven’t supported someone getting shaved, please throw a few dollars Joanne’s way, she is a tremendous friend and a phenomenal mother and I am just in awe of her in doing this.

We watched the first three people get shaved, and then I got up to say what I thought was going to be a quick “thanks for coming, it means a lot to the parents of cancer kids” and it all just came flying out of me. I couldn’t stop thinking of the day that I talked to Peyton about taking of the last of her hair that had been coming out in clumps anyway. She hated it, it was everywhere, in our food, all over her and she complained that it made her head hurt. I put a towel in my lap and she stood there and laid her head in my lap, all I could see was her little head and that soft skin of her neck. And I just started to cry as I took those clippers to her hair and I held that first handful of hair and just sobbed over it. I finished the rest of it quickly, I couldn’t stand it. But she looked at herself in the mirror and just grinned and rubbed her head and she was so happy it was gone.

I tried to tell those people at that event what it meant to me that they were doing this voluntarily to raise money so that some other child down the road might not have to have her mama cry when she shaves her head because cancer will be cured. But I couldn’t. I just stood there and cried like a goof. And they freaking applauded! I was mortified. I did finally pull it together enough to tell them thank you, tell them how important what they were doing was, what a monumental impact each and every one them had. I got to use a great statistic I heard at the Fashion Funds the Cure that both stuns and sickens me….we spend more in Florida as a state to save the manatee than we do as a nation to research pediatric cancer cures. Well, I know a lot of people, over 35 got shaved Saturday night and had their hearts touched and their lives changed in an effort to give our kids a chance.

Thursday night we went to the Children’s Cancer Center for family group night. I was supposed to stay home in bed and recoup and probably should have, but thanks to a wonderful invention called Vicodin, I got spend a floaty, hazy night with my family and friends. They were lovely, all bubbly and brightly colored. I really could have stayed in bed and loved every minute of it, I was uncomfortable as can be, but I wanted to go to family group with my WHOLE family there for once and I also really needed to connect with my friends with a week like we were having. They’re all going through the same pain…well, maybe not all the exact SAME pains, but you know what I mean….and fears right now and I needed to be with them. So drugged to the gills I went and got my support on!

Just in the event anyone ever considers having an endometrial eblation and your ob/gyn says “Hey, you can do it in the hospital with a general anesthetic but you have to stay 24 hours, or you can just come do in the office under a local and go home in an hour!” GO TO THE HOSPITAL!!! HOME SUCKS. Get the big drugs, let them knock you out. By the end of my procedure I was begging for them to bang me over the head with a croquette mallet. And I had 3 babies without epidural, I thought I was pretty tough. My kid gets spinal taps while watching Dora the Explorer, I can do this! Piece of cake. Yeah, big wimpy BABY. I totally understand Peyton wanting her binky, I wanted one pretty bad that day myself.

Anyways, as you can see, we had a busy week. Some good, some not so good, all of it better because Peter was home to be a part of it.

We continue to ask for many many prayers for the Gliddon family, the Lester family, the Gunn family, the Kesler family, the Rodriguez family, the Potterbaum family, the Sims family, the Gaudineer family, the Dickson family and so many more that I could literally run out of bandwidth space.

Thank you for your faithful prayers, thank you for your loving encouragement and I thank you thank you THANK YOU for all the support and compassion you share with our family.

f.r.o.G….fully relying on God
–Anissa

How do I possible put into words what this week has been? Roller coasters. Yo-yos. It has been a huge up and down emotionally that is draining, frustrating and overwhelming at best.

The week started off so well with the fashion show lighting up our week with hope and happiness. It was an amazing event and highlighted so much hard work towards the search for cures and treatments.

But it was made so much more poignant in the face of all the news that has fallen through the rest of the week.

Our sweet friend [url=http://www.caringbridge.org/visit/mathewjgliddon]Mathew[/url] has come to the end of treatment options. The fungal infection that invaded his nose has spread to his brain and his spinal cord is deteriorated. This means that bone marrow transplant is no longer an option, there are no more treatments available for him and now we just pray for his comfort and for strength and faith for his family. His parents want to take him home, make him as comfortable and happy as they can.

[url=http://www.caringbridge.org/fl/emilylester]Emily Lester [/url]is a warrior of incredible proportions. She was diagnosed at 12, relapsed after finishing her initial treatment and went to St. Jude's where she underwent Bone Marrow Transplant from a perfect match marrow donated by her sister. She was sailing through treatment, she’d just been accepted to Duke University and was the recipient of several scholarships when her cancer came back again this winter. She has been at St. Jude's awaiting a second bone marrow transplant, but the years of chemo and treatment have take their unmerciful toll on her young body. Her liver and kidneys are failing and her family is faithfully holding to the hope that Emily will be able to continue to fight.

Steven Rodriguez is a 16 year old boy that I’ve never even had the chance to get to know. I only have the friendship that I’ve been building with his mother Katherine. Steven has a horrible aggressive form of testicular cancer and he’d been doing so well, amazing the doctors with his ability to overcome each setback and making it through a successful stem cell transplant. His mom was preparing to take him back home to Vero Beach, their home before cancer brought them to Tampa for treatment at Moffit. But I got the news last night that Steven has relapsed and he will still be going home, but this time with no treatment options and only quality of life to think about, not quantity.

Kaylie Gunn remains in the ICU on a vent as her very sick body battles apergillis pneumonia. Last report on her was that she was stable, not improving but not getting any worse. I guess sometimes stable is the best we can expect, but we continue to pray for complete healing.

A very special friend [url=http://www.caringbridge.org/visit/sierrakesler]Sierra[/url] is also inpatient at the hospital battling a nasty case of pneumonia. She has had seriously depressed counts and that is alarming, but her body is fighting off a lot of infection and she just had large doses of chemo. The doctors are expecting her counts to come up, but if they have not improved by Monday they will be doing a bone marrow aspirate to see what might be going on. Although there have been no “unclassifieds” in any of her bloodwork, the dreaded R word is always a fear. Please pray for the Keslers as this fear, in the face of so much recent bad news, is nearly crippling.

But in the midst of fear and the pain is also joy and life. I just got off the phone with my wonderful friend Lisa Deal who lost her daughter Hannah this past year and she shared fantastic news. In November her family will be welcoming a new baby!!! They are so excited and this baby will be so loved.

I continue to stay positive and hopeful that Peyton will be one that overcomes cancer. That she will be a survivor and an example of the many children who do make it through this awful disease. But my heart is just broken for the many friends who don’t have choice, who have to face what life is going to be without the child they love so very much.

There is fear that if these children can relapse and undergo such a horrific trial to battle a disease that is going to win anyway, what will keep it from happening to Peyton?

There is guilt, what can I say to these friends when I have the comfort of going home to my child and they don’t. Anything I say feels stupid and pointless and really give no comfort. But I continue to give them my prayers, my love and encourage them in any way I can, because it’s all I got.

There is a feeling of defeat, that no matter how hard we continue to work in raising awareness and money for research, the kids that are dying in the meantime are a painful reminder of how slow the process is.

I can’t do any more than turn to God, to pray with all my heart for the strength to get up each day and face it with the knowledge that I’m part of the greater plan. I believe that even when the outcome isn’t what our heart desired, it’s God’s purpose and I have to strengthen my faith that THAT is what truly defines our lives.

Please take the time today and every day to be thankful for the blessings in your lives. They may be a family who loves you, a stranger that makes you smile, a quick cuddle with your pet, a happy moment that brightens your day. These are all gifts, they are to be treasured and too often we forget to thank God for them. Hug your child extra long tonight, give your spouse that extra kiss and live each moment so that you know for certain you always have quality of life, not just quantity.

f.r.o.G….fully relying on God
–Anissa

ps…One sweet thing to end this somewhat sad and depressing post, Tim Wilkins, Peyton's escort for the fashion show talked about the show and showed some of the pictures of her today on the Studio 10 show. You have to click on[url=http://www.studio10.tv/day/friday/segment.aspx/68245/The_Morning_Blather] "morning blather" for Friday the 14th[/url]. Nothing like knowing that your daughter's binky addiction is local news!

This isn’t a fashion show post, it isn’t a very happy post either.

Sweet Mathew Gliddon is not going to be going to CHOP for bone marrow transplant. They have stopped treatment. There are so many things happening in his body that his treatment is at an end.

Please keep your prayers faithful for the Gliddons as they face this painful time.

f.r.o.G…fully relying on God
–Anissa

i know, I already posted it, but I just LOVE it!

We got to Sak’s at 5 pm, they’d closed down the entire store just to host the show. Peyton and I headed straight for the makeup counter while Pete parked and we chatted up our friends, we saw the gorgeous job the makeup ladies were doing on all the girls and then Peyton hopped up to get her makeup done. Of course, I got out my camera to start my happy snapping…only to realize that I’d left the camera battery in the charger after the tattoo bonanza and never put it back in the camera. NO CAMERA!!

I take pictures of the kids playing UNO, I take pictures of them on the toilet, in the bathtub, for no real good occasion whatsoever. Yet, on this hugely important day, I have no camera. I felt naked.

So, Kay Bertoch runs to the rescue!! She has a camera!! She turns it on and finds out…she has no memory card!!

The next person I ask realizes that she too has no memory card in the camera.

Yes, we cancer moms can rock incompetence like no other.

Cody Bertoch and I take off through the mall, first to the camera shop where the girl tells me in a “duh, whatever” tone of voice, “Sorry, we don’t carry any Kodak stuff”. You are a camera shop, yet you carry no Kodak (the #1 selling camera brand in the US) anything….are you kidding me? I then truck my way over the Radio Shack, where they do carry lithium batteries. YEAH!! Hallelluah!

The 12 year old kid they found to man the counter takes a battery pack out of the package and puts it in my camera and hits the on button. Nothing happens. He hits the on button agan….again, nada. He hits it for the third time and still no response and then he proceeds to turn the camera over and stare into the lens and shake his head. The battery doesn’t work so let’s check whether or not the lens is clean! I ask him, not-so-gently at this point because my daughter is in the process of getting pretty-fied and fashion-ready and I’m stuck in Radio Shack, if it’s possible that the batteries come uncharged. I could almost hear the click as the lightbulb went off for Junior and he enthusiastically grabbed onto my superior reasoning skills.

“Yeah, they probably have to be charged first!”

“What’s the point of giving you batteries that don’t work when you buy them!!!??” I get a little testy.

Seriously, he just looks at me for a full 4 seconds and then says, “Was that a hypothetical question or do you really want to know?”

I left before I could reach across the counter and smack him so hard that all 4 years of high school A/V was knocked out of his consciousness.

After that, I found out that one of the girls had an extra camera and I got to latch onto that one. THEN I got to get my hands on Penny Hawkins’ handy dandy, super dooper, high end professional camera with big bright flash and cool-dude-ninja handles. That was fun. More about that later.

Anyways, Peyton got her makeup done, she got her nails painted, she was ready to go! Where did she go, you might ask? Up and down the escalators with Cody Bertoch. I guess when their grandkids ask what their first dates were, they can tell them they spent a lot of time going up and down in elevators and escalators. Exciting stuff.

We got a chance then to go over to the jewelry counter and pick out some pretty sparkly stuff for her to wear with her dress and then she got to pick out this gorgeous crystal encrusted handbag that cost more than I’m planning to spend on her first year of college. She was fabulous!

Backstage the girls were having a blast admiring each other’s outfits and accessories, they were playing and being loud and it was wonderful. The little girls were just precious, the older girls were so glamorous and stunning, it was incredible to see the survivor girls in their special alumni tshirts. Whenever I’m around these girls that have completed treatment, the ones who are moving into the next phases of their lives, it’s encouraging and it helps me hold onto the hope and faith that Peyton will one day be that girl.

As the show started we watched a gorgeous video of past models and this year’s girls during the Day of Pampering. There was a dedication of the night to two girls who were models last year but who passed in the 12 months since, Taylor Arrington and Camille Rawson. Two girls who were supposed to model weren’t able to make it, Sierra Kesler is currently in the ICU in need of much prayer for a raging case of pneumonia and Emily Lester needs our prayers during her time at St. Judes battling a second relapse. They were missed. It was a reminder that in the night of fashion and fun, the reality is that not all the kids battling this disease survive, it is a FIGHT every day. Whether an emotional fight, a physical battle, or just a struggle to not let the reality of what our kids are dealing with overwhelm us/them, it is an every day war.

Peyton’s walk down the runway was with Tim Wilkins, the host of Studio 10, the guy from the interview we did last week. He and Peyton were laughing and playing before and after the show, Tim is a hysterical guy…actually a stand up comedian…so you know that these two got along famously. When they stepped out into the spotlight, my heart just started pounding, I was so proud of my girl and just fell in love with her all over again. They got to the end of the runway and she looked out at the crowd and gave little waves to her daddy and to Cody, and then she blew me the most precious kiss. Tim dropped to his knees at her side and pulled something from his pocket, and I’m thinking “is he proposing?” and he opens the little packet and there it is…perfect and wonderful…her BINKY! Her reaction was priceless, she got the biggest grin and started laughing and it was this show stealing moment.

And I didn’t get a single picture of it. I had taken so many pictures with Penny’s camera that as I started to click away at Peyton, the memory card started blinking “CARD FULL”!!! NOOOOOOOOOOOOOOOOOO

Yeah, I missed the chance to capture those sweet seconds on film forever, but instead I got to put the camera down and laugh at her and receive sweet air kisses. It’s all good, God’s way of saying “Get out from behind the camera and enjoy your daughter!!!” So, the only pictures I have of Peyton on the runway, are going to be the ones that other friends took, so I will post them as I get them all in. Can you believe that? PCF has it all on video, so I will definitely post that as soon as I get it.

It was a tremendous night, one I know that I will never forget and will always keep treasured in my memories. Thank you so much to the [url=http://www.fastercure.org]Pedatric Cancer Foundation[/url] for making the night possible, to Sak’s for giving my girl such a night to showcase her unique personality, for God to bless us with the life that Peyton has and for every precious moment we get as a family.

f.r.o.G…fully relying on God
–Anissa

ps. As many have asked about the tattoo, here are some top answers!

1. Yes, it hurt, but not bad. Probably a 3 on a scale of 1-10 with 1 being a mosquito bite and 10 being labor sans drugs (which I did 3 times!!)
2. Afterwards it isn’t too bad, sore a little and I’m a leg crosser so I keep banging it!
3. If you ever get one, remember to shower with lukewarm water the next day, because I put the water on nice and steamy hot and when it hit that spot…well….if you’ve ever watched Seinfeld and are familiar with the “Elaine dance”…it looked a lot like that but with water and naked. Good times, good times.