Hope4Peyton

Peyton narced me out the minute we walked in the door. After Taylor’s viewing she and I went to get a bite to eat and then stopped by to see a friend who never fails to perk me up. I was feeling a little more put together by the time we got home and as soon as we got in the house she ran up to Pete and says:

“Taylor was sleeping! And she wouldn’t wake up! She was sleeping a long time. She wouldn’t wake up forever! And Mommy was really sad.”

I started to cry all over again when Pete hugged me, just letting the pain I was feeling creep out little by little. I tried not to do it at the viewing because I didn’t want to freak out the baby, but I needed to let those tears out.

The viewing was so emotional. Taylor looked beautiful with her Tampa Bay Lightning jersey and special stuffed animals lying beside her. Everywhere you looked were pictures of the family, Taylor and Jordan at all ages and a there was a video of family pictures that scrolled through their years of memories. Mary Kay, Cary and Jordan were so composed and peaceful, it was good to see them so together and calm. I can’t imagine how hard it must have been for them to be there receiving all the visitors and seeing all the tears, but they were smiling and sharing stories of the girls. Jordan was with her friends most of the time I saw her, she was smiling and talking, taking comfort in the love that surrounded her.

Taking Peyton to the viewing was sort of like taking the bull into the china shop. If you don’t know Mr. Bean…well, you’re missing out on one of life’s great funnies….if you are familiar with him, that was what she was like!…she was a mess. She kept trying to get the balloons they had all over the place, she knocked over a picture of Taylor in one of her attempts….she wanted to crawl on the table to smell the flowers (which was a fake arrangement anyway!)…she kept asking if we could change the channel to Nickelodeon (on the TV that was showing the video of the family pictures) and she ran from pew to pew rearranging the Kleenex boxes. I finally decided that she was going to somehow get us thrown out if we didn’t leave gracefully, so we made our goodbyes.

There were several people there that have been following Peyton’s story via this blog and came up to introduce themselves. It was nice to put faces with names of people who’ve left sweet, encouraging messages for us. Mary Kay had posted that Taylor loved butterflies, there were butterfly and dragonfly balloons everywhere and I had put Peyton in a sweet little white dress that has purple butterflies on it, a white headband with butterflies on it and her shoes always have butterflies on them.

I am just continuing to pray that Taylor has found her ultimate happiness in Heaven and that her family finds peace with their life without her.

Angela Powell and I had a long talk today about the reality of cancer. She was frustrated with the fact that the risk for secondary cancers is so high in pediatric leukemia patients. We talked about how the phrase “80% cure rate” is a lie. Cancer stinks and there is absolutely no way to pretty up. The phrase that I read all the time is that ALL leukemia is “the most common and most curable form of pediatric cancer”. That just means that the cure rates for other cancers reallllllllly stinks! She said “What’s the use of going through all this treatment if they’re just going to get cancer again anyway!” Oh do I understand her frustration and fear.

That 80% cure rate sounded so good following the words “Your child has cancer”. I held on to that with all my heart. 80% is good! 80% is doable! 80% is higher than most of the grades I got in math class throughout my school years and I still managed to graduate! We’ll take 80%!! Then I read and I get more information and I realized that 80% applies to kids who are between the ages of 2-10, who don’t get leukemia in their spinal fluid, who don’t have all the crazy qualifying genetic factors…and 80% is only good for a 10 year survival rate. That’s 80% who live 10 years past their diagnosis.

We’re finding out that because Peyton is a higher risk, she falls short of that 80%. Because of her spinal fluid being positive for leukemia at the time of diagnosis, she’s higher for the chance of relapse and secondary cancer. Because she has to have radiation on her brain and spine, she’s adding to that chance of secondary cancer and tumors.

When we were told there was an 80% cure rate for her type of cancer, I was joyous because I thought “Hey, we’ll cure it and then life can go back to normal”. I’m finding out that this is our normal. Life will never go back to what it was. She will never be the child she would have been without cancer. Her body will never be what it could have been. She may suffer growth issues, her pain could be temporary side effects of her medication, but it could also be permanent damage, she will always be at risk for cancers and have to be followed carefully throughout the rest of her life. Her mind won’t be what it could have been. She’ll probably loose a few IQ points, she may struggle at school with memory and cognitive issues, and she may have to work harder to do what other kids her age are doing naturally for the rest of her life.

But she will have a “rest of her life”.

The thing I keep telling myself and Peter, and Angela today, is that if we can’t get this cancer under control, there won’t be any worries of secondary cancers, relapse, learning issues, health issues, because there might not be a future.

We fight the cancer with every tool we have, we cope with the lasting effects the best we can and we have faith that God’s plan is in action in whatever He gives us to deal with. Just days, literally days, before our diagnosis, I told my best friend “I don’t know how those families do it. Those families with sick kids. I know I couldn’t do it.” I guess I was wrong because we are doing it. With family and friends encouraging and supporting us, with prayers buffering us daily, we’re going it.

SOOO, just for the records, folks, and in writing….”I just don’t know how those people do it…the ones who win the lottery and millions of dollars…I just don’t think I could handle it!”

Anyway.

For happier times, Peyton and I visited Rachael today at her “Teddy Bear Parade”. All the kindergarteners had dressed up bears with matching boxes that they pulled them around the playground. Now, let me just say this…if Kindergarteners planned the Macy’s Day Parade…..New York might never recover!! What started out as a nice organized parade ended up in mass chaos with boxes overturned, kids crying because their boxes weren’t moving right and ended in one huge clump of kids dragging boxes of overturned, badly mistreated bears. But it was absolutely precious to watch and the kids had a rocking good time showing off their boxes.

f.r.o.G…fully relying on God
—Anissa

ps….You must check out the photo tour of the 2007 Zachary Tucker Golf Scramble that went to benefit the Giving Hope Through Faith Foundation. There are great pictures of the event, but super specials ones of Peyton and some with me and her together throughout the slide show. Thank you so much to the GHTF group and special thanks to the Tucker family, the Wirth family, the Duckworth family, and the Brus family and Jim Young!

Also, this picture was emailed from the Temple Terrace Relay for Life event.

Holy hit counter, Batman!! Last night I told Pete something seemed off with our website. It was calculating about 50 hits a day. That’s stayed constant for about the last 6 months or so. And we were happy with that! But over time, I’ve been getting lots of people who say that they hit it every day, and when I thought about it, and with the number of people who read it that I know don’t tell me about it, it should be more than 50. So, I had Pete do a little of his cool computer programming voodoo that he do so well, and he fixed the counter to actually count the hits (astounding that logic, huh?). Wowzers! Its 11 o’clock and we’re almost at 500 hits today. That’s amazing! Since we fixed the problem with the "Contact Me" links on our page we have gotten so many wonderfully encouraging messages and I just hate to think how many we've missed over the 7 months or so that we didn't know it was broken. So thank you to all of you who are checking up on us, you have blown us away with all your continued support.

This morning I went to Old Faithful, the ever-loved Cracker Barrel with some friends to sit down and pow-wow about fundraising for tuition. It’s strange for me to think about. But while some families struggle with climbing medical bills that billow out of control, others are just struggling with the every day bills. I had gone back to work so that we could pay those bills and keep our kids in the Christian school that we love so much and being forced to stop working has really made that a challenge. Central was awesome to give us a scholarship this year that kept our kids at the school, but the upcoming year is a much prayed about hurdle. I’m praying that God will provide an answer and a group of friends have gotten on board to make sure God’s answer comes sooner rather than later. We are in the planning stages of a community yard sale and looking to get it organized for late June. If anyone would like to be a part of that, just email me and we’ll be more than happy for ideas and hands.

Dentists….rating right up there with IRS auditors and Spanish inquisitors….but the one that we found today was great! What we found out is that Nathaniel should feel pretty lucky his teeth aren’t just dropping out of his face like jelly beans! The chipped tooth was no big deal as far as the dentist was concerned, they’ll file it down and it’s a done deal. However, the two GI-FLIPPING-NORMOUS cavities that he has are sort of a problem. The poor kid has to go back as soon as possible (meaning, “no, don’t bother to make an appointment, we’ll call you as soon as some other unfortunate kid cancels and we’ll call you to rush the soon-to-be-toothless-wonder in warp speed”) for excavation of the cavities, fillings and caps. Then we have to have the remainder of his teeth sealed to protect them. Wouldn’t it be great if you could just put a protective seal over your kid’s entire body?

Tonight we drove to Clearwater to enjoy yet another wonderful night sponsored by the Children’s Cancer Society. It was the Mike Alstott celebrity softball game benefiting the CCC and the center got huge amounts of money to fund programs for the year. It was neat to get to be up close to all the players in the Hooters Dugout VIP section….yes, we had Hooters waitresses serving food all night long…in fact, at one point, Pete was following two Hooters waitresses, one carrying a tray of brownies and one carrying a tray of chocolate chip cookies….it might be the closest to his puberty dreams coming to life he’s ever gotten. We got to spend time with the marvelous CCC staff, the other families that are always so much fun and the kids were just running around like little maniacs all night long. Nathaniel was in slow motion all night with a toothache, even though I’d given him something for pain. Peyton was suffering from leg pains all through the ride to the ballpark, but made the most of the time there. Rachael was a blur most of the night, running from one thing to another. They showed clips of the video that they taped at the support group last Thursday night…a JUMBOTRON size reminder that I really need to make sure to brush my hair and slap on some lip gloss once in a while. But regardless, the way they put together all the parents’ stories and comments were touching. I was even happy with the part of my taped part that they used, I was so glad that I said something coherent and meaningful….it usually comes out better in writing than in person.

We got home late, shuffled the kids to bed and I sat down to make a “Fairy Princess Teddy Bear Float” out of an empty box…..did I ever mention that I’m not real crafty. After butchering three boxes, sacrificing a Christmas stocking, hacking up a Halloween costume, some mesh and enough glitter to drown a troupe of Vegas showgirls, I came up with something that should knock her little socks off. It’s pink, it’s shiny and it has wings….I am the McGyver of Kindergarten class projects. What I lack in skill, I make up for in PARTS!

Friday night is the viewing for Taylor Arrington, I’ll be going to that and I would ask for prayers for all the people who will be there. It is going to be a hard night as we all say goodbye to a child of God that He has taken home. This will have to be extremely hard for the family as they see the emotions of all those affected by Taylor’s strength and courage and I just pray for comfort and peace throughout the healing process for them.

I have to finish tonight’s post with the sweetest thing I’ve ever heard Peyton say….she told her daddy “I love you more than ice cream.”

It doesn’t get more poetic than that.

f.r.o.G…fully relying on God
—Anissa

Peyton and I arrived at the clinic this morning with our magic suitcase of fun, bag full of snacks and plans for a day of vegging out and getting some blood. Instead, since Monday, her ANC went up to 1000, her hemoglobin went up to 9.6 and her platelets were over 250,000!!! Those are phenomenal numbers and not what I was expecting at all!

Peyton’s pallor was still pale, her eyes looking bruised, so I told them that I was a little surprised that she wasn’t closer to borderline for needing blood. They were too after looking at her, so we checked the old fashion way. We pulled down her eyelids to check the color….looked good….then we told her to stick out her tongue….now, how hard is it to get the average 3 year old to stick out their tongue….do you know what she says to me? “I cant. I’m too shy.” Get out of here! Seriously! I’m too shy. This kid runs around the house naked screaming “Eat the power!” and she can’t stick her tongue out so the nurse can check the color. We finally got her to stick the very teeny tiny tip of it out and just accepted that it was fine.

Nurse says “When do you come back?”

I say “May 14th!” That’s our next scheduled day for chemo, her counts look great today…what’s the big deal?

She laughs at me. Laughed.

So, we’re going back on Wednesday for a finger poke, but I’m hoping that the counts stay good and things keep looking up. I’d like for her to have a high healthy set of counts to start off the next phase.

On Wednesday we’re also getting to participate in a special photography session at the clinic with a professional photographer who’s going to come in and take some pictures of Peyton…maybe me, but I’m only planning for Peyton at this point. We’ll see if I manage to drop 20 pounds in the next 6 days…are you all holding your breaths too? I swear that since this kid has gotten sick I’ve put on at least 15 pounds….it really stinks, I’m not happy about it and there’s not a whole lot I can do about it at this point. So pray that God decides to get really crazy with the special blessings and drop a weight loss bomb on me! Hey, we can slide that little extra request in on the side, right?

Annnnyway, since we didn’t end up needing to stay at the clinic for a transfusion, we were able to book it downtown for a meeting of the minds. I got to lunch with Sherry Tucker Giving Hope Through Faith Foundation, Heather Duckworth (board member of the Pediatric Cancer Foundation), Holly Wirth Paige Wirth Memorial Trust), Debbie Vessel Carlee’s Mom, Lisa Orlando (Director of something at Pediatric Cancer Foundation), Erica (cancer mom) and Erica’s mom. It was a meeting to toss ideas for ways we can raise awareness of cancer awareness. Did you know that September is National Pediatric Cancer Month? Until this past year, I didn’t. That’s a problem and one of the goals of this meeting was to work on ways to make sure that more people have the needs of the pediatric community brought to their consciousness. We are going to make this a priority. We are going to make sure people understand that these children have needs that are important and critical and that it is all our responsibilities to make sure they have the chance to live long productive lives.

It’s exciting to be getting involved, to find this special purpose. I am so happy to be included in this group of amazing women who have turned the loss of their children into works of astonishing good. How easy would it be to wallow in the grief and let that consume you? They are taking that pain and turning it into energy to make a difference. I love that!! This is God’s purpose in choosing these women, He knows that they can make strides in His names and shine the glory of His power in amazing ways. And I’m getting asked to sit at the big kid’s table!! I hope to be able to help out in some way, to find a way to use my skills to work towards a CURE!

Tonight Pete and the kids and I got to spend the evening with Grandma Sharon and her friend Diane. Diane was visiting from Michigan, and this lady has a special place in the lives of Pete and his mom. It was a wonderful time to spend with her and to just talk and share all that’s been going on with her and with us since the last time we saw her.

Sharon is already rearranging her summer schedule so that she can help me with the kids, trying to find ways that she can relieve some of my stress with clinic and kids and trying to get everyone where they need to be when they need to be there. She is such an awesome mother in law and I could not ask for a more loving grandmother for my children….no offense, Mom, you know we LOVE you too!….but she is truly a support that never fails to be there for us no matter what and we are grateful for the blessing that she is.

Nathaniel has a mad toothache. I have to find an emergency dentist for him in the AM…we lost our dental insurance due to a major snafu….but he was such miserable pain he was in tears tonight. I gave him a Tylenol PM and promise that we’d get it taken care of. Poor kid, he’s not a complainer and I could just see how miserable he was. He curled up with me and just wanted some mom love and I was just thrilled to the tips of my much-needed-to-be-painted toes!! He’s getting to that age. That don’t embarrass me age…don’t kiss me in front of my friends age….can you walk behind me stage….and he curled up on my lap and just snuggled. Awwwww…he’s still my baby. Yeah, it may take crippling pain to get him to do it but I’ll take it however I can get it, I’m not proud!!

Tomorrow I am meeting with friends to see about organizing something in an attempt to raise funds for my family. This is so hard because I have no problems asking for money for other people, I can shamelessly ask for anything in the name of a good cause, but when it comes to myself….that’s hard. But in having to give up working, my family gave up the income that paid for the tuition for the kid’s school. I know that most people would think “dude, it’s private school, get over it and just move them to a public school.” But these kids have been through mom being sick and hospitalized and in physical therapy and working to get back into fighting form for them….then they’ve had to deal with all the changes of life with a cancer sibling. So much change has been forced on them in the past two years and the only stable thing in their lives has been their school, their friends, the environment of love and God-filled people who support and encourage them each day. This is one more thing that Peyton’s cancer is threatening to take away from them and I’m going to swallow my pride and do whatever I have to do to find a way to keep them in this wonderful place that they NEED. Please pray that this effort is met with success and that God finds a way to answer this prayer in my heart.

I continue to ask that you all keep the Taylor Arrington family in prayers as they prepare for the viewing and burial ceremony for Taylor. I admire the fact that they’ve insisted on NO black, brown, navy or somber clothing whatsoever….they want casual clothing for a celebration of her life. We need to celebrate that she is safe and loved in the arms of the Lord!

Ok….I’m going to drop this out there. Many comments have been made that I should turn this journal into a book. If anyone has any kind of connection to someone who would know how to get that ball rolling I’m more than willing to do it. I love to write this journal, it’s emotional and honest to who we are and therapeutic. If I can find someone who’d like to help me turn this into a book then I’m all for it, and if that happens then I’d like to make sure a portion of all sales would go to the Pediatric Cancer Foundation and the Children’s Cancer Center.

f.r.o.G…fully relying on God
—-Anissa

For me, and yeah I'm biased, this pic of Peyton's back ranks up there with a lot of the great, awe-inspiring pictures throughout history. I literally get teary-eyed everytime I see that shot, and it's just from last week!

Think of the Iwo Jima Monument. It embodies the fighting spirit of American Marines at Mount Suribachi who simply would not be denied. It's a very powerful image. To me, this photo of Peyton is just as powerful and awe-inspiring. It embodies the fact that no one is untouchable by cancer, not even a 3 year old little girl who'd rather be planting flowers, showing off her new shoes or swinging instead of dealing with the chemo treatments. However, if you look a little closer, you see that she is not alone in her plight. She is indeed very nearly surrounded. Loved ones and strangers alike will step forward and surround you and help get you through this journey that is called a treatment plan.

As a parent of a cancer kid, I'm helpless. Completely and utterly helpless when it comes to trying to help my daughter in this fight. I can keep her spirit up. I can try to show her strength when she needs it. I can try to comfort her in some way if she's in pain. I can kiss the little boo-boos that happen. I can tell her a joke, or show her a magic trick, but I simply can't make her better, no matter how hard I try…and I gotta tell ya, as a father, as a parent, nothing cuts you more to the bone than something hurting your kids.

Some days you never know where the strength will come from. I met an absolutely wonderful guy last week at the Brandon Relay. He was the father of Danielle Stambaugh (I may be spelling that last part incorrectly). Danielle lost her battle with T-cell lymphoma in 1997. We shared our "cancer war stories" and laughed a little, teared up a little, and prayed a little. I'm pretty sure Anissa's mentioned this before, but when you come across another cancer family, there's this weird sense of familiarity and comfort. You suddenly have in front of you someone who knows a lot of what you're going through, and the realization sinks in that you really are not alone in this, nor are you the only one going through a rough stretch of life.

I took a partial day off of work Monday and went in to the clinic with the girls. Anissa's got it right when she says the entire team over at the clinic is awesome. They do the absolute best they can with the situation they're given, and they really need to be commended for that every single day. They are true professionals. They're all smiles and jokes but when it's time to do something nasty, they get their game faces on and take care of business. I did finally get a chance to see the virtual reality goggles in action on Peyton. Lemme tell you, she just absolutely zoned out with those things on and Dr. Kerr taking a bone marrow. Some day, she's probably going to be able to truly appreciate Pink Floyd.

I think the roughest part about going to the clinic has got to be the waiting room. I'm not sure if it was a scheduling SNAFU or what, but it was standing room only in the waiting room for a bit there. The fact that there are that many sick kids…just in our clinic…is just a terrible reality of life.

A special thanks to all our readers out there. Those 50 or so people that hit our site regularly really keep us going on some days.

Peter

P.S. Hey Children's Cancer Center…how about starting up a ballroom dancing class for us cancer parents who're trying to hold a marriage together?!?! You'll know me when you see me. I'll be the one who can't keep a beat.

A breakthrough of monumental proportions was made today when Rachael cocked her head at me and said…

“You do a lot of things, mommy.”

I think it might be the first time she’s realized that certain things in her life aren’t accomplished by the laundry-fairy, the dinner-fairy (although it does sometimes involve the Pizza Hut-fairy) or the backpack-fairy. Mind you, this announcement was made during my most important task of the day…making dessert.

I believe that most cancer moms would tell you that something has to give. People tell me “I don’t understand how you can do it all.” Well, these people aren’t ever allowed to cross the threshold of my house in fear that someone will come in and see conditions in which I make my children live! I mean, I’m not even sure that my kids realize they have closets because their clothing spend the majority of its time either in a clean hamper or a dirty hamper. In fact, there’s a good chance my kids will make it to adulthood convinced that dressers are square, plastic and open on the top. I’m afraid to give my kids real plates to eat on because we’ve been eating on paper plates so long I know they’d pitch them in the trash when they were done! My floors are a catastrophe, there’s STUFF everywhere and if President Bush were to ever just decide to stop by the condition of my house would serve as a shining example of why there should be subsidized housekeepers for cancer families!

Something has to give. Sometimes its relationships, sometimes it our housework, sometimes its time to bathe and groom ourselves….I think I’m going to design a line of clothing with shirts that announce “My kid has cancer, I’ll get a haircut, a mani-pedi and put on some makeup when they’re all better. Until then, stop staring at me!” They’ll come in a variety of colors and sizes in sweat suits, of course, with a haute couture line in any fabric but cotton.

We give so much of ourselves to being full-time cancer moms that we barely have time to breathe. When we do take a moment for ourselves, we feel a little guilty because we know our kids never get a break from it….why should we? You know why? Because if we don’t hold it together, there’s no one to pick them up when they can’t take it anymore! There’s no one to make sure the laundry-fairy and dinner-fairy show up on time. No one does it perfect…there is no perfect….there is only our best…and sometimes its just not enough to do it all, but it gets what HAS to be done DONE. And we have to breathe through letting what has to give GIVE.

I read this great little poem/story. I want to share it with all of you, especially all the cancer moms I’ve come across, both in person and online. You are my sisters, my heroes, my friends, my support and encouragement. I find amazing strength in each one of you and although it wasn’t my choice, I am honored to be one of you!

Remember to breathe.

WHY US

Most women become a mother by accident, some by choice, a few by habit.
Did you ever wonder how mother's of children with cancer are chosen?
Somehow, I visualize God hovering over the earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger…
"Armstrong, Beth, son, patron saint Matthew"
"Forest,Marjorie, daugher, patron saint Cecilia"
"Rutledge, Carrie,twins, patron saint Gerard. He's used to profanity"
Finally, he passes a name to an angel and says, "Give her a child with cancer."
The angel is curious. "Why this one God? Shes's so happy."
"Exactly," similed God. "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wears off, she will handle it."
"I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going give to her has its own world. She has to make it live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you," said the angel.
"No matter. I can fix that. This one is perfect, she has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive."
Yes, here is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a step ordinary."
"I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them."
"And what about her patron saint?" asks the angel, his pen poised in mid-air.
God smiles and says "A mirror will suffice"

f.r.o.G…fully relying on God
—Anissa