Hope4Peyton

Holy COW!!

I had this whole post in my head about our crazy busy weekend, but it all just got bumped out because of the amazing news I just got. WOWOWOWOWOWOWOW!!

Can you tell how excited I am? In fact, I’m trying to type so fast that I am making miserable amount of typos and I’m so thankful for spellcheck.

Ok, we had a great weekend. We went to a fashion show put on to benefit the [url=http://www.childrenscancercenter.org]Children’s Cancer Cente[/url]r, some of our sweet friends from the center got to get dressed up and strut their stuff for the runway. It was precious and wonderful.

After that I got to take my kids to meet Brittany Snow. She’s an actress and she’s one of the stars of the movie Hairspray that I’ve talked so much about. She happens to be a Tampa native and a neighbor of our dear friends the Bertochs. Kay has been working hard to find a time when Brittany could come meet some of the kids and hopefully find it in her heart to become involved with the Pediatric Cancer Foundation. Peyton was walking down the sidewalk towards the party and she saw Brittany and took off running. She sprinted the whole way there and then just stopped a few inches from her and looked up at her with adoration beaming from every pore. It was so sweet. The kids got to sing karaoke (Nathaniel was a HOOT!), they got the chance to meet Brittany and get autographs and pictures with her. There were lots of our friends there, it was not just my kids. It was tremendous to see these kids starstruck by a celebrity who came just to meet them. Brittany and her family were so wonderfully kind and patient and Peyton stalked her the entire afternoon.

The love of Peyton’s life…Cody Bertoch

Today we went to a Spring Festival put on the CCC, full of food, fun and games. The kids had a blast and it was another great chance to spend time with our friends.

I had so much more to blather on about all of that, but truly, in light of the news I just got, that’s the best you’re going to get. I’m posting pictures though!

Here’s the news.

Oprah has a new show on Sunday nights called “The Big Give”. She gives 10 people money and then gives them a person they’re supposed to help They have to produce a life changing “give” in the short time they have. It’s an amazing effort to show what people can do with the right inspiration and the means to do it can make happen. I mean, people, this is OPRAH!!

I just found out from Mary Ann, the executive director of the Children’s Cancer Center, and one of my favorite people in the whole world, that Oprah’s team has chosen the Children’s Cancer Center to be one of their 10 nationwide charities that their going to highlight.

OK

Really?

Yes! YES! Really!!!

That is tremendous!!! They are going to get amazing exposure for the center, it is going to raise awareness for childhood cancer as whole and I just pray pray pray that Oprah is going to blown away by what the CCC does and gives them the full force of her support. How could she not be? I would love to see the CCC spread out into a nationwide organization, able to offer the programs and support to oncology families everywhere. It is so needed, it has been crucial in giving us the tools to cope with Peyton’s cancer.

This organization has been a miracle in our lives. I talk to other cancer parents across the country and they all tell me how they have nothing like what we have here. They don’t have the support of a CCC-type organization, therefore they don’t have the close relationships with the other oncology families like we have here. I mean, we are a family. I don’t mean in some quaint and light way, we are tight. When one of us hurts, we all hurt and we run to support each other. I know some who read our site think that it’s just me, but its so not. It’s easy to reach out and help when you love someone so much.

I can’t explain how happy I am that if we had to get cancer, we got it while we lived here. God had a very special plan for us in having us here to go through this journey. The families we have met, the relationships we have built, the learning experience this has been is overwhelming. We have been blessed beyond compare by the gifts of the CCC, the Pediatric Cancer Foundation, the Brad Richards foundation, All Children’s Hospital, our church and our kids’ school.

I’m off to sleep off the crazy weekend, the emotional week it has been and to prepare for the week ahead.

Please keep those prayers going for Mathew Gliddon, the Potterbaum family, for Kaylie Gunn and for all the families sleeping tonight under a cloud of cancer. They need your prayers.

f.r.o.G…fully relying on God
–Anissa

Nose = raw
Eyes = sore
Head = aching
Heart = hurting

Today was Delaney’s funeral.

I really can’t say much about it, just that it was beautiful. We heard so many stories of the impact that Delaney had on the world around her. I shared my own personal love for her and how my life is better for having had the chance to know her. As much as it hurts to have her gone, I know that I’m thankful for the brief time she shared her joy with me.

I often hear “I don’t know how you continue to do it”, but there really isn’t an option. There is no choice to just stick your head in the ground and pretend it isn’t happening. There is no way to meet these kids and NOT fall in love with them. And there is no way not to feel the tremendous pain of their loss when their diseases take them much too early.

Every day is a blessing that we should never take for granted. Treasure the time and love you are gifted with.

Thank you all for your sweet comments and emails, your prayers are carrying me through this time.

f.r.o.G…fully relying on God
–Anissa

The ponytail itself is very Pebbles Flintstone, but the grin is ALL Peyton! She was so excited to see it up and staying there. She wants me to put it for school tomorrow!

Please say a lot of prayers for tomorrow and Friday. Thursday evening is Delaney’s viewing and Friday afternoon is the funeral. I know there are funerals every day, there is someone who is lost and memorialized every day. But I am hurting and aching for the Potterbaums, I am so overwhelmed with sadness at the thought that there is no more time to be had with Delaney, and I’m sad for my kids and their continued understanding of loss.

Peyton is sad because she spent the most time with Delaney, Rachael is having a hard time because Delaney was her age and I think it’s making her realize her mortality in a very real way. Nathaniel is just a full of emotions, things he’s not talking about with me when I ask, but that I can see and that his teachers have called to my attention. So, just keep the many children who are sad and confused and scared with the reality of death…I guess the parents aren’t a whole lot better, so pray for us all.

I spent most of the day with the Potterbaum family, just remembering Delaney and giving each other comfort. Kara and I went through a ton of pictures to find the ones that she wanted used in a video that I’m putting together for the service. I did ok with that, then I got home and went through the pictures again and I felt a little broken inside. This beautiful baby with such a full future ahead of her, a child who fought so bravely with a smile on her face and a laugh always ready. Then it just stops. Over too soon and gone too early.

Nathaniel let me in on the funniest bit of trivia regarding funerals.

“Mom, did you know what they used to do at funerals?”

“No, what?”

“They PAID people to cry! They called them wailers and they got paid to go to funerals and pretend to be sad.”

“Well, I always cry at funerals and I don’t get paid.”

“If you go to funerals of people you don’t know and cry really good maybe you’ll get a few bucks.”

Apparently Nathaniel feels that I’m should hit a few funerals and audition for the role of wailer. He’s a funny boy.

f.r.o.G.
–Anissa

Today was a hard day, just letting the reality of another child gone sink in and start the process of trying to cope with that loss. And that’s just my feeling of pain and loss, which pales in comparison to Delaney’s family. How can I complain about steroids, aches and pains and all the stuff that seems minor in the face of what they’re going through. At least I still have my girl to worry about and to go through this with, wouldn’t they gladly take on the effects of cancer and chemo to have her back in their arms? What do I really have to complain about?

Tomorrow I’m picking up Hailey and Maddie Bridges on my way into the Children’s Cancer Center for Little Tales. Their mom has had to go back to work and I can take them with me for some fun play time and it should be a good playdate. They’re such sweet girls and I’m hoping that they know me well enough to be ok to leave with me. I think once we get there they’ll be happy they did. Little Tales will still be play time for the kids, but it will also be a time for all the grown ups to get together to make ribbons for Delaney’s service. It’s something we do when a child passes, the staff and families and volunteers get together and we have this time to share our love for the child while preparing this last gift in their memory. The ribbons will be worn by the attendees of the funeral, they will be gold symbolizing childhood cancer and red, Delaney’s favorite color.

I am dangerous with a glue gun, so hopefully I’ll just get a nice safe job putting them in the basket or something. When we did this after Hannah passed, I joked with her mom Lisa that there was literally a little piece of me in each ribbon…more like a piece of my scorched gluey skin stuck to it.

I had to make a rough decision today. With Delaney’s service and the widespread flu issue in Indiana, I had to choose not to make the trip north to my grandfather’s birthday party. I am heartbroken because I was so looking forward to this time with my family, most of whom I haven’t seen in 3 years. But I’m not willing to put Peyton at risk for the flu when it is so bad up there. I’m so sad about not being with my family, but this is our life and these are the choices we have to make.

I got a great call from the kid’s school today. I made the choice to register them for school next year in the event that our move is postponed into the school year. In that case, I don’t want to have to move them to a new school for X amount of months just to move them north.

The school got confused, they called and were like “ummmm, we thought you were moving.”

“I am, but I want to make sure the kids have a spot if we end up needing it.”

“Oh. Is everything alright at home?”

“Yeah, we’re fine, it’s just in case the move takes longer than expected.”

“Mrs. Mayhew, we’re here for you if you need anything and we’re glad to get the children registered for next year.”

It took me a few minutes to realize what was wrong with that phone call. Then it hit me. It was the tone of her voice.

I do believe that my kid’s school thinks that Peter has left me, we’re not really moving up to be with him and that I’m in some weird denial! I can have sooo much fun with that.

And for those of you who were so curious….Peyton waved that IPod box in front of Rachael’s face before I could wrestle it out of her hand. She taunted her profusely. I threatened to beat her if she didn’t knock it off. Rachael gave an indifferent sniff and just looked away. I was so proud of her for not taking the bait.

After it had all settled down though she came over and just nonchalantly threw it out there that I have an IPod, Nathaniel got Pete’s old IPod for Christmas and now Peyton has an IPod……hmmm, isn’t that interesting, mommy?? I dropped the subtle hint that someone has a birthday coming up….May….but that’s still coming up….and she lit up.

I can just see it now. If an IPod doesn’t appear for a birthday present she’ll probably just have a spontaneous implosion.

f.r.o.G.
–Anissa

This morning Peyton and I got picked up by a lovely lady named Tammy, driving a gorgeous white Mercedes, and bearing two dozen beautiful pink and yellow roses. She was our ride to the Day of Pampering put on by Saks and Mercedes Benz to celebrate the models of the upcoming Fashion Funds the Cure event put on to benefit the Pediatric Cancer Foundation.

The fashion show is March 11, but today was a day all about the glories of being a girl. We got to Saks at 11 AM and we were met by 5 of our friends: Presley Dickson, Laura Watkins, Brooke Martin, Sesly Evers and Adelaine Powell and their mothers. The girls all got manicures, the girls who had enough hair got their hair fluffed and styled, there was a makeup session for both mom and daughter and then the girls got to hit the racks and choose whatever they wanted from the entire girl’s department. Their choices are what they will be wearing for the fashion show.

I can’t explain how much fun we had. Peyton was just glowing all morning, she ran from station to station, enjoying every minute of pampering. She had the manicurist (sorry, I chose not to step in and do her nails myself) paint her nails three different colors! When the hair stylist asked if she wanted her hair trimmed she gave her a look that said louder than words “You are not TOUCHING my hair with those scissors, lady!” So, we just fluffed it and went on our way. Peyton primped and glammed it up in the makeup room, telling the girl “I think I need MORE lip gloss, and a little more color on my eyes.” They gladly accommodated.

We went into the dressing room with 5 dresses. The first was too small and was quickly ditched. The second one was the ONE and the others were discarded without a second glance. I guess when you know, you just know. When anyone would ask which dress Peyton had picked out, I would take them to the rack where they were holding the girls’ choices and told them to figure it out. It really wasn’t hard. All of the girls picked out beautiful dresses, they are all going to looks fantastic, but of all the dresses, only one had flowers all over the sleeves and neckline, only one had three skirt layers with the top being tulle with white flowers on the bottom….only one looked like a fairy princess prom dress….and that one belonged to Peyton. I guess for a kid who wears pink cowboy boots and a velvet Christmas dress to fish or a pink leopard leotard with rain boots to school, her choice was perfectly HER.

She’ll be wearing this sweet confection of a dress for the fashion show in March, and I don’t know who her escort down the runway will be just yet, but I’m sure she’ll manage to charm the pants off him. All proceeds of this amazing event will go to the Pediatric Cancer Foundation to further their efforts in researching the treatments and cures for pediatric cancers.

At the end of the day, we were surprised to walk into a room full of goodie bags, not just for the girls but for the mom’s as well. I don’t know about the other moms, but I know for me, just watching Peyton light up while getting her nails done…watching her twirl around in her princess dress…those were all the gift I would ever need.

Still, the bag was nice!

Peyton’s bag was full of what I like to think of as Rachael-taunting-fodder. She got crafts, jewelry, all sorts of lotions and perfumes and makeup, she got notepads and toys and then to top it off she got an IPod shuffle and the most beautiful DIAMOND necklace. Oh yeah, my baby girl got some bling. Pete told me that it was most definitely going to end up at the bottom of the toy box. I told him it wouldn’t because it was most definitely going on mommy! Actually, I’m going to put it away and she’ll get to wear it the night of the fashion show, but I want to make sure she has this beautiful token of this tremendous event for many years.

We ended the day with a group picture…6 girls with a combined age of 20 years old and between them they had almost 10 years of battling cancer. There were three with heads full of curls, there were two with short pixie cuts, and a solitary sweet bald head.

This was the toughest bunch of fashion models the world has ever seen. They could kick the crap out of the SI Swimsuit issue models.

There are a lot of upcoming pictures, I hope they don’t take so long to come up that you give up!

Preparing to head in and get pampered!

I wish MY nail salon was that nice. Maybe Saks will hire me,

THE dress!

Getting all made up

The “lip gloss lady”

Peyton and sweet Presley

Exact words “I got an IPod! Rachael will be so mad.” Huge accompanying smile.

It’s hard work to be the princess

The amazing girls! From the left: Peyton, Presley, Adelaine, Laura, Sesley and Brooke in the back!

The aftermath

As we were getting ready to leave, the second group of models was coming in, the teens and preteens. I’d bet that new Mercedes that drove us home that they spent a LOT longer trying on clothing than our girls did.

I left Saks worn out and just excited about all the fun we’d had. I was thinking about the Fashion Show and what it was about and how neat it was to be a part of it. But also thinking how sad it is that we ARE in it. I mean, for all the fun that the pampering day was, we were there because Peyton has cancer. I’d give it all up, every last free ticket, fun event, gift and blessing…if she’d never had to get sick in the first place. It’s never worth it.

I’m sitting there contemplating those thoughts and I saw that I had voicemail. I’d put my phone away, left is unanswered the whole time we were being pampered. This was Peyton’s day, everyone else could wait. I called Mary Ann, the director of the Children’s Cancer Center, to see what she had going on.

A part of me wishes that I’d never made that call.

There is no easy way to hear that a child has died. Whether it one that has been sick for so long and you know that it’s inevitable or it a complete shocker because the child was doing so well…there is no one better way to find out that a friend has lost their baby. It all SUCKS!

I found out that my friend Kara lost her daughter today. Delaney Potterbaum was a miracle child…if asked to point to a child that consistently beat the odds, proved that doctor’s can be so wrong, it would be Delaney. She had an Optic Glioma and she’d fought so bravely. Her tumor was actually dead, no longer growing and she was in the process of just being Delaney. After the doctors told her family to say goodbye to her after an ICU stint, she walked out of that hospital and continued to live her life. After they said that her eyesight was a thing of the past, it seemed to improve at every turn. Two months ago she drew me a picture that was nothing but scribbles and lines because she couldn’t see it, last Thursday night she ran to friends, handed them pictures she’d drawn all without someone guiding her.

Today she is gone. Delaney of the bigger than life personality, who owned a room when she walked it. Delaney who had the most wonderful sense of self, made the funniest jokes and could steal you heart so fast you didn’t realize it was gone. Delaney who loved to draw, loved to make crafts…even if it was the same craft over and over again…Delaney who was so loved by so many.

Oh I will miss you, sweet girl. I will miss your hugs and your smiles and your Ziploc bags full of strange snack mixes. I will miss hearing your funny phrases, your laughter inspiring commentary on the world.

Please keep the Potterbaum family in your prayers as they cope with the loss of their daughter. In talking to Kara today, she was able to tell me how much she looks forward to seeing Delaney in Heaven, free of cancer, perfect and whole and without the limitations her body had suffered for so long. My heart is broken, beyond broken for their loss, but I too am looking forward to the day I get to Heaven and see the sweet face of Delaney coming towards me, with a picture she’d drawn in one hand and a bag of snacks in the other.

Please take a second and go to Delaney’s site and give them some prayers and support.

Delaney Potterbaum 2/4/02-2/24/08

The day started with fun and laughter and ended in tears for me. But in truth, the whole day was about cancer. The bright, enduring hope and the devastating reality of loss. I know that when Peyton walks down that runway in that frothy pink dress, it will be about her celebrating her life, but it will also be about remembering the friends who’ve lost their battles. The ones who inspire us with their memories to keep working towards the goal of a cure, to keep raising that flag of awareness, to never give up hope that the next child with cancer won’t have to be missed and grieved for.

One last sweet thing I have to share today. My girl Peyton has one big heart. She has compassion that a 4 year old should never have. I was crying so hard in the car on the way back from Saks after hearing the news about Delaney, knowing that I shouldn’t do it in front of her, but completely unable to contain my sorrow. I woke her up from the snooze she was trying to take with the force my blubbering. She asked me what was wrong, I had to explain that another of her playmates had gone to Heaven, that God needed them there and we wouldn’t see her anymore. She looked so sad, she understood in her own way that this was a bad moment and that Delaney was going to be somehow gone from her life. She has to realize that because now and again she’ll ask my why our sweet friend Hannah doesn’t come back to the Center anymore, and I’ll have to explain that Hannah went to Heaven. So she knows that those friends that go to Heaven don’t come back to play with her anymore and that makes us all so sad.

Seeing my tears, she reached into the goodie bag that she’d gotten at Saks and pulled out the fairy princess candle holder that she fell in love with and handed it to me and said, “Mommy, I want you to have this, I want you to feel better now.”

That candle holder didn’t do much for me, but her love sure did a lot.

f.r.o.G…..fully relying on God, even when I’m sad, when I’m angry, when I’m frustrated and feel like it will never make sense….I’m still relying on God

—Anissa