Hope4Peyton

This is Peyton’s picture that we were blessed to be gifted with at the Fashion Funds the Cure show tonight. Unlike all the other pictures, I am the only one without at least a sliver of my head in the shot…which I am freakishly grateful for! I am horrifically unphotogenic and this shot certainly showcases Peyton’s beauty without trying to figure out “why is she making that face?”

But this picture is very special to me because for the first weeks after Peyton’s diagnosis, I spent a lot of time holding her hand. She would just hold on to me for hours at a time, while sitting in my lap or laying together in bed. Even when she was asleep she would reach for my hand to hold.

So, without even knowing it, Pepito’s amazing photo caught the special relationship we share.

I have a whole update to post about the fashion show itself, and I have to wait for pictures to be emailed from some wonderful friends before I can really tell you all about it. Let’s just suffice it to say that Peyton rocked the runway, she made a memorable moment of the night and a LOT of hearts were touched by all the special girls who could be there.

f.r.o.G….fully relying on God
–Anissa

I’ll tell you very honestly that I have great pictures of all the wonderful friends that came today and shared in this amazing experience of expressing in a very permanent way what our friendships mean, what our children mean, what the CCC means to all of us.

BUUUT, because of the many requests to not post any of their pictures….even though there are some classic pictures that NEED to be shared…I will only show pictures of my own kite.

Thank you so much to Skip at the 1603 Tattoo Shop in Ybor City, he is FANTASTIC!! I would recommend his talents to anyone interested in a tattoo. He is tremendously gifted and he made this day possible with his generous donation of time and effort.

Thank you to PJ and Shannon Oliviero who helped make this day happen.

f.r.o.G.
–Anissa

While waiting for Pete to show up on Friday night, Nathaniel headed to a sleepover at a friend’s house and the girls and I had a Ladies Night Out! We went to the mall, we shopped at all the stores that would normally be bypassed as Nathaniel tends to break out in hives if we walk too close to Victoria’s Secret and Claire’s, and we just giggled and were silly all night long. Unfortunately, our good times were not matched by the Florida weather, so when it was time to head home we were greeted by a torrential downpour with ripping wind and lightning. I had the girls stay under cover with a security guard so that I could run out and get the truck without them getting soaked. I’m not sure why I ran, it’s not as if I was any drier for running than if I’d gotten down and rolled all the way there. So, completely water-logged I get the truck and pull it up as close to the overhang as possible, I have my gigantic umbrella – that would have come in most handy on the way TO the truck, but oh well – and I get both of the girls in the truck with minimal rain damage.

So there I am, doing my parental duty of being the one to get drenched so my kids can stay as dry as possible, but I’m doing my fair share of sputtering and griping about being near drowned in the process.

Peyton says to me, “What’s wrong, Mommy? That wasn’t so bad, I’m hardly wet at all!”

That’s when I stopped the truck and strapped her onto the luggage rack with a bungee cord.

Pete got home around midnight, the girls were thrilled to wake up to Daddy being home. We had a busy day that included heading to Riverview High School to be a part of their Relay for Life. We didn’t have a team, but our neighbor Greg is a Hillsborough Sheriff and they were out there with a team and we went to support them. It was just as emotional as it was last year to walk onto that track holding Peyton’s little hand. She’s got hair this year, she’s taller and feeling better than last year, but she was still the youngest survivor by far and she was the only little one there representing the children who are also stricken with cancer.

It’s frustrating in a way because it’s such a phenomenal event and people get behind it in such a monumental way and yet the pediatric cancers get such a tiny portion of their research funds. We will continue to attend and support Relay because any research is better than none, but we also firmly stand behind groups like Pediatric Cancer Foundation because of their dedication to funding research against childhood cancers. I am confident that with the families getting active, raising awareness and being advocates we can make same impact as the Susan G Khomen or Lance Armstrong Foundation.

There are a huge number of events coming up that might spark your interest, if anyone can make it, I really encourage you to try to come!

1. Tuesday the 11th – The Fashion Funds the Cure show benefiting the Pediatric Cancer Foundation. As you know, Peyton will be there in full glory and there are still tickets available. There will be food, music, auction items and a private chance to shop at Sak’s with 10% going to the PCF.

2. Saturday the 15th – Our friend [url=http://www.caringbridge.org/visit/allieblain]Allie Blain and her family [/url]are starting up their own non-profit foundation to aid families dealing with critical illnesses, called Clouds of Hope. They are having a pancake breakfast from 9-11 at the Beef O’Brady’s in Valrico to benefit their new foundation.

3. Also, Saturday the 15th – O’Toole’s Irish Restaurant and Pub is holding a St. Baldrick’s event in Brandon. As I’m sure you remember me mentioning, people are committing to shaving their heads in name of funding research for kids with cancer. Peyton is the honored child at this particular event and we will most definitely be there to support anyone interested in coming and getting shaved! If you don’t want to get shaved, at least come and enjoy the show with us. We have a wonderful friend Brian McPike and a bunch of his Hillsborough Sherrif buddies getting shaved and our neighbor Greg is almost on board as well. If you’d like to be a part of this day and to support the cause, you can pledge to sponsor Brian! It’s going to be a LOT of fun and we can’t wait to be part of this event.

4. Friday the 21st – The Children’s Cancer Center will be receiving donations at the door of the Wine and Cigar event at the Tampa Convention Center.

….or feel free to just write great big juicy checks!

f.r.o.G.
–Anissa

First, updates on our household traumas. I got many phone calls and emails from people, especially the ones in our area, who have had or are currently having the same issue with ticks. Who knew?? I had sort of felt like sharing that my child has a tick issue was like shouting to the world that you’ve got lice….embarrassing and horrifying, but a part of life and really no big deal. I guess once you’ve had cancer in the house a case of ticks is something you can handle.

Well, the word locally is that the tick season is really in full roar and that many are having issues. These aren’t deer ticks, so we’re not in any threat of Lyme’s Disease. We have “brown dog ticks”, not dangerous to humans but can cause problems for pets. Chances are either Buffett had them and brought one in from outdoors (before I booted her to live on the porch) or Nathaniel caught some in his clothing while tree climbing at a friend’s house. Either is likely and really doesn’t change the fact that we have parasites! But the nice thing about THESE parasites, unlike those relatives that won’t leave, you can chemically treat and kill them all!

We have big plans for Monday, our pest guy is coming out to spray both inside the house and the entire lawn, and I will be dropping the dog off to be dipped for ticks at the vet’s office.

So, that issue will soon be resolved.

The wart on Nathaniel is in the process of going away. He is truly enthralled with the whole wart-dying adventure and feels the need to lift the medicated band-aid and show me regularly. It got to the point where he took off the band-aid to be replaced and showed me where the skin had lifted and was just hanging on attached to the nasty, funky little cores…can I just tell you that it was gross….like licking belly button lint gross. But he sticks his thumb in my face and asks me to pull that top layer of skin off….my immediate thought was “I carried you, I birthed you, I feed and clothe you….you ASK TOO MUCH!” But I got out the tweezers and yanked that top layer off. The wart is dying, he’s still wearing the bandages and it’s going away fairly quickly. Did you know that warts are caused by the HPV virus – the same one that causes cervical cancer? I felt the need to shower after coming in contact with the wart and was very thankful that I had a pair of latex gloves to wear while dealing with it.

That issue can’t be resolved fast enough!

Peyton and I went on the Studio 10 show this morning with Nikki Hawkins and Chad Harrod (a PCF board member, the chair of this event and one all around nice guy). This was a promo opportunity for the Fashion Funds the Cure show that will benefit the Pediatric Cancer Foundation on Tuesday – which you can still get tickets for if you’re interested in attending, it’s going to fantastic!! Nikki wore her own clothes for the taping, but carried a luscious 1150$ Prada bag and Peyton actually got to wear and show of the dress she’s wearing in the fashion show. I DID NOT SPEAK! I got several calls asking why I didn’t talk during the interview, but I am capable (and my mother and sister and husband would probably argue the fact) of letting others do the talking. Seriously! I was just there to be there with Peyton and Chad gave a great interview on what the fashion show means to the PCF and Nikki did a fantastic job of telling viewers how fun it is for the girls involved. I just got to sit back and watch my baby girl shine in her dress.

After the taping I met up with two friends for lunch, Brandy Fishman and Kara Potterbaum. We had a fun lunch and time to just sit and gab. There sometimes feels like there’s this line in the sand between the families still in treatment and the ones who have lost their child. Yet, I’m so thankful that line is fading away because I have the most precious friends and I would hate to lose them because of the loss of their child. That would make it a double tragedy as far as I’m concerned.

Wednesday I got to brainstorm some ideas with my friends Holly and Sherry who have both lost children and then today I spent time with Kara. As I’m thinking about it, before Peyton was diagnosed there was no way I would have gone out of my way to spend time with people who lost their children. I would have been horrified and saddened and unable to get past that glaring point. I would have have been so self-consumed by what it made me feel that I wouldn’t have been able to cope. I know what it feels like to be on the other end of that now. To have people who just learn that my child has cancer be completely unable to talk to me or to focus on anything but my bald kid. Yet, these are the friends from who I gather the most strength and focus. Holly shared with me that it gives back to her to be with the parents still going through treatment, to connect with them. I’m so glad because these are some mighty special ladies and I love having them in my life.

Tonight was our family support group night at the CCC and we enjoyed the time there. The kids ran in the door, I got them some food and I never saw them again until it was time to leave. They love it there, they feel at home and completely in their comfort zone. It’s awesome to have that place, it’s a wonderful gift.

In fact, it’s so wonderful a gift that I’m getting a tattoo.

Ok, I’m pretty sure I just heard my mother and Peter’s mother both fall over in their chairs!

Yes, I’m getting a tattoo on Monday. There is a group of moms getting together and we are getting inked together. We are either getting kites (the symbol of the CCC), a ribbon (childhood cancer awareness) or a ribbon with their child’s name on it. Can I just tell you that Peter hates the idea of me ever getting a tattoo?? He’s argued with me for it forever and I’ve always said ok, no tattoo. When I told him that I was getting one he sort of laughed at me. Then I told him I was getting a kite in honor of Peyton.

He got this great blank look on his face and then he said, “Nothing. I got nothing I can say no to about that. You actually found the ONE tattoo I can’t say no to.”

I’m getting a kite, either on the inside of my wrist or on my ankle. And a kite isn’t any sort of recognizable cancer symbol, but it’s so symbolic to me. That kite represents the CCC and what it brought into our life: understanding, encouragement, support, strength, friendship and love. It enabled us to make the friendships that have been our strongest support system throughout Peyton’s treatment, it gave us the opportunity to give that to other families and it has brought so much happiness into our lives at a time when joy seemed very far away. That kite will always be a reminder, not that I could ever forget, what Peyton has been through, our growth and learning as a family and the knowledge that cancer won’t always be a part of our lives, but the calling to support families going through it and to raise awareness always will be.

I have to give a HUGE thanks to a friend, Tammy Nettina. She is such a wonderfully generous person and I am just blown away by her big heart. Her daughter is a size bigger than Peyton, so we get her hand-me-downs. When I was a kid I got hand-me-downs that started with my sister, went to our preacher’s daughter, stopped by another cousin and then made it’s way down to me. This means that by the time I got them, the clothes were generally out of fashion (I don’t know how much fashion was involved in the 80’s in Indiana though) and on their last threads. Needless to say, my younger cousin usually got lots of new stuff because the hand-me-downs never made it past me. The clothes that Peyton got are GORGEOUS!! Tammy sends us some fantastic stuff and it keeps Peyton in fun, frilly new clothes.

But with this package of clothes was a purple IPod for Rachael and an ITunes gift card for Nathaniel. In the rationale that she couldn’t very well give something to Peyton and not to the other two. She’s read about Peyton’s less than gracious gloating in front of Rachael and went out and got Rachael something she desperately wanted. Nathaniel was stoked because there was a ton of music he wanted to download.

More than just the gifts and sweet generosity, what touched me the most is that it’s easy to remember Peyton in the spirit of gift-giving. She’s been through a lot, she’s easy to want to gift. But so often, Rachael and Nathaniel get lost in the shuffle. These two have been though a crazy 3 years. They were old enough to be scared when I got sick, they knew things were not right. Then they had to deal with the whole world revolving around their sick baby sister and their needs always ending up behind chemo trips, steroid rounds and whatever funky mood Peyton was in. And they’ve done it in a manner that makes me so proud to have them as my kids.

I won’t sugar coat it, they have their issues, but they are also funny and compassionate and loving and understanding. They fight often, but forgive easily. They are on the path to becoming amazing adults. Thank you so much to Tammy for recognizing their needs and going out of your way to make them feel extra special, remembered and valued.

Peter comes home tomorrow night. We have a whole week to spend together!! And we are going to be running and doing the whole time we’re here.

Saturday we have a birthday party for Baby Leo and a Relay for Life to attend that our good friend Greg is a part of at Riverview High School.

Sunday I am going to a baby shower.

Monday is body art day!

Tuesday night is the Fashion Funds the Cure show.

Thursday I’m having a medical, girly bits procedure done to take care of a fibroid I have.

And at some point we have to eat and sleep!

I will share with you that I took a HUGE round of heckling tonight!! My less than stellar math skills, my promising future in nail maintenance and my apparently obsessive blogging all got highlighted tonight. And I only have one response to that.

f.r.o.G.
–Anissa

Nathaniel has developed a number of new and interesting dilemmas. First is an apparent outbreak of ticks! Yes, you read that right, the boy has ticks. We found two on him and then one in his bed. After combing his bed and room and getting the two off of him we haven’t had any more problems…..until today. He came to me with a piece of lego that had a freaking tick on it! I am absolutely floored about what to do about it, why we would have ticks in the house. The dog has been moved outdoors for over two weeks now, I put a tick collar on her just in case it was her, but do I put one on Nathaniel as well? I now check the girls continuously and nothing, just Nathaniel. If anyone has an idea of how we might have an outbreak of ticks, when my kids are never in the woods, no one else appears to be afflicted, please feel free to send your suggestions.

The other lovely development is a wart on his thumb. It’s huge…like his thumb has grown another thumb on top of it. He’s wearing the wart patches and enjoys watching the process of it doing it’s nasty decomposition thing….UGGGG.

We are talking warts and ticks, its like our own strange version of the plagues….I’m expecting hail and locusts any minute now. And if we have warts and ticks now, I’m sure puberty is going to just be a blast for him. I’m sure he’ll be a hot commodity on the chick scene.

Rachael is doing well, she’s still struggling with Delaney’s passing. She’s had trouble sleeping lately, but I don’t think she understands why she’s so upset. She does occasionally ask questions about Delaney and why she died, but it’s hard to explain in a real way that a 6 year old understands…I truly don’t understand it myself, what do I say to her? She understands that she went to Heaven, that God wanted her there and that we’ll see her again, but how do I calm her fears that if a six year old can die, how do I know it won’t happen to her?

Peyton is great! We had Little Tales this morning and a wonderful lunch with Kay Bertoch and our friends Susan and Presley Dickson. After that we headed to the clinic for her CBC finger poke. Her counts came back decent, her Hemoglobin was 11.5 (lowest end of normal), platelets were 176 (low end of normal) and her ANC was 1300 (low of normal range). But they are good all things considered. She got her big doses of chemo for the week and in two weeks we head back for her spinal tap and chemo injections.

She continues to progress through treatment so well, I cannot tell you how thankful I am to say those words. It’s never far from my thoughts to know that the possibilities of relapse are there, that she isn’t in the low risk group, that there is a higher chance that her treatment would fail. But even when I repeatedly check a huge random bruise on her and I feel that sinking in my gut, I have to remind myself that healthy kids get bruises, it doesn’t mean anything. For the non-cancer family, it would be perfectly normal to watch an active 4 year old have bruises on her body, to see them get tired when they’re running on high speed all the time. For me, no matter how well I see her doing, it still strikes fear in my heart when she tells me “my legs hurt tonight” or “I’m really tired, I think I need a nap”…I remind myself over and over that it is the chemo, not the cancer coming back.

It always feels good to get those counts in my hand, especially when my mind has been running wild. To know that there is nothing out of the ordinary…our ordinary…and I can go to sleep peacefully tonight.

I guess that those words don’t seem terribly positive, but when you’ve been slapped in the face with the horribly unexpected, nothing seems out of the realm of possibility anymore. I have seen too many children relapse, too many children lose their battles, its hard not to get discouraged sometimes and let that project into fear for Peyton.

I keep the faith that God is control and that what is supposed to happen in his plan is going to happen. It doesn’t stop me from being anxious and worrying about what the future holds for us. But it does bring my comfort and peace with it.

f.r.o.G…fully relying on God
—Anissa