Hope4Peyton

It happened again. Peyton turned on the charm and got free food. In fact, she’s gotten so good at it I may just put her on a street corner and let her start panhandling. We ran into La Septima, which is a fantabulous Cuban restaurant down the street from our house, and we’ve become regular customers because a) it’s inexpensive to eat and b)Peyton’s new craving is Cuban toast. So, Tuesday we popped in for her toast and my coffee fix and as I went to put her in the car I realized I still had my money in my hand. We hot-footed it back inside and I explained that I had forgotten to pay for our takeout.

“Peyton doesn’t pay for food here.”

Really!!! Well, that’s just spanky! How cool is that? I tried to pay for my coffee but they wouldn’t let me pay for that either. So I’m figuring between free meals at Cracker Barrel and free meals at La Septima, if we can just get Olive Garden to jump on the old Peyton bandwagon, I might never have to cook again.

I meant to mention that I brought up Peyton’s body hair issues. Or, my issues with Peyton’s excessive body hair. The doc did confirm that it was steroid driven and would most likely come out when she quit the treatment. Wheeew!

Last night I attended the board meeting for the Pediatric Cancer Foundation. It was remarkable to meet this group of people. I got to meet members of the board, one of the founders, a bunch of the deep-pocketed (yaaahoooo!) donors and got to spend quality time with some of my favorite cancer families. It was a night of recognition for the work accomplished over the past year, the forward progress in research and a time to honor the kids and families for whom all these people dedicate so much time and effort. Plus the food was good! I left all the kids home with Pete and attended solo….that was great!

I updated the events page last night, upcoming fundraisers and events that are going to be benefiting different groups throughout Tampa. Check them out, come out and get involved! One of the big things that will happen in the spring is the Fashion Funds the Cure show for the Pediatric Cancer Foundation. It’s held at Sak’s, and the girls facing cancer in our area are treated to a taste of the supermodel life. They get pampered, made up and over, get to wear some pretty spiffy duds and get escorted down the runway by an assortment of celebrities. Many of our friends have had the chance to be involved in the past years and it’s always fun to see the pictures and hear the stories. Peyton was too young to be involved in last year’s event, but they are all gung ho about her coming this year.

I really want you to think about Peyton’s current fashion trend. Picture your favorite outfit….maybe it’s the Easter dress with the rain boots…the sparkly leotard with the purple mask…the ballerina outfit with crocs…I just hope Saks is ready for Peyton to hit their runway.

Last night Dana Bertoch shared with me that Peyton had been talking to her about Hannah. It broke my heart to hear her say that Peyton said “Hannah’s still in the hospital. My mommy cries a lot.” I hate to think that my grief about Hannah has affected her so much, I’m going to definitely try to keep that more to myself and in private. I don’t want the kids to see me so sad, but I do want them to understand what a sad thing the loss of a friend is. Rachael told Peyton the other day that when you die you get to go to God so its ok to be sad, but it’s also cool. Her words. She gets it.

Something I added in the night last night because I couldn’t sleep for anything was a “Shop for a reason!” link. You should check it out. I was just thinking about the fundraisers, the businesses that support the search for a cure and thought that it would be an extra way to support them all. There’s a link to Sydlets, which is a selection of handmade jewelry made by Michelle and Sydney Sims to help cover the tremendous costs of treatment and travel for their family. There’s a link to Glamour Flops, Dana Bertoch’s new business of hand-beaded flip-flops (my friend Lori ordered hers in black and gold for Steeler’s colors….I guess I’ll have to get some blue and white ones for the Colts).

I’ve found this very cool site called CafePress. You can make your own designs and then they put them on everything from t-shirts to fridge magnets. I’ve got a few t-shirt designs for kids and adults up there. Anything that we sell will go into Peyton’s fund and there will be a special selection of shirts that have the www.fastercure.org logo, which is the Pediatric Cancer Foundation website and any sales of those shirts will go directly to them. Some of the shirts will be very serious, but knowing us, most of them will be inappropriately funny. If you want to add a shirt or see one you like and want it in a different format…such as you like the tshirt but want it in a coffee mug…just let me know, its quick and easy to do!

Peyton’s nickname has always been Pookah…don’t know why, but it just has been. So, the store name is Pootique! Pete gave me a very strange look when I told him, but I did it so I get to name it. There’s only a few things available now, but I’m looking forward to expanding the Pootique variety in the next few weeks.

Many prayers for Hannah, as she continues to hold on, but her time is so short. She was suffering to such a point that they’ve got her very heavily sedated now. We just continue to pray for a peaceful passing for her and for strength and comfort for her family.

f.r.o.G…fully relying on God
–Anissa

Peter received a phone call from his alma mater yesterday. A “please donate so that we can build a new wing of something for the university and we will send you a t-shirt!” call. And Peter gave them the “Our kid has cancer, want to donate to pediatric cancer research?” response? His comment was that nothing gets people off the phone faster than pulling that old cancer card out. Gotta find that special silver lining on every cloud, I guess.

Peyton and I went to “go to the new hospital and play games with our feet!” today… otherwise known as a physical therapy evaluation. I will tell you that the techniques that they use to get a 3 year old through PT are very fun and the therapist is a charm with kids. Peyton and she had a ball together and it was neat to watch her get Peyton to perform each task. The basic report is that Peyton has noticeable weakness on her left leg and foot, due to the medications that she’s taken she has damaged nerves and it causes her to walk on the insides of her feet, she is overcompensating for the left side weakness by using her hands to get up and down and using her right side at odd times, her endurance and strength is low for a child her age and her motor skills are on the low side because of the weakness. All that said, she wasn’t too worried about it. She didn’t even think that Peyton’s problem required a regular PT schedule. She sent me home with a strengthening tool and some exercises to help strengthen her ankle and calf muscles, and we are now proud owners of a prescription to get her fitted for…and I know I’m going to say this wrong…an orthotic…which is a brace that will be molded to her foot and ankle. It will help correct the way she is walking and adjust her limp and the duck walk she has. When I asked about Peyton’s tendency to hop or skip she explained that with her left side weakness, she would compensate for actual balance or strength with speed. That’s why she has this crazy Forrest Gump looking walk. Run Peyton Run!! So, she’ll get her braces in the next couple of months and that should help her walking problem until the side effects of the medications wear off (hopefully).

After our playtime with PT, we headed up to our clinic for a fun day of spinal taps and chemo. We saw our new friend Zach who is a shining example of the fallacy that all cancer kids are lethargic and sickly. This kid is a whirling dynamo of energy and life, he cracked me up because he was just like a little human pinball! It was awesome to see that even with as much chemo as he has pumped into his body, he was still going strong as ever. This is the fighting spirit he’ll need to conquer the world.

After Peyton got her port accessed she was pretty sleepy. We are usually in for the 8 AM spinal appointment, but we had to juggle because of the PT appointment so we were in at the 1 PM appointment. Right in the middle of her naptime, and she’d already played with the foot lady, so it had been a full day! She passed out. Hard. Like snoring, drooling, wheezing hard. She got her pre-meds, she got her happy meds and we decided not to wake her just so we could put goggles on her during her procedure. She didn’t even budge or notice we were giving her the spinal tap until about ¾ of the way through the procedure. It was great! Until she realized we were done, and she hadn’t had a chance to wear her virtual reality goggles to watch her new Dora movie we’d rented just for the occasion.

So picture this…Peyton is naked, has the goggles on and is watching her movie, bawling because she didn’t get to watch her movie during the spinal tap that she didn’t know she was having and is seriously throwing a fit because we refuse to do a second spinal. Yes, I have the only child on the face of the planet that screamed “do it again” when I told her the spinal was over. Have I mentioned that she was still under the effects of a lot of drugs? She remained miffed for quite a while about our uncooperativeness in administering a second spinal tap. Go figure.

I did finally get her out of the clinic in a good mood, with the promise that we’ll do it all again in 3 months….whoo hoo, I guess.

We got home at 4 pm, after a long day of doctors and got an invite to have dinner with Penny Hawkins and her crew. Nikki does music lessons near our house on Mondays, so we enjoyed a fun meal with them tonight….6 kids…a pizza buffet…unlimited soda….good times!

I talked very briefly with Lisa Deal tonight, Hannah’s mother. It was a very short and devastating conversation. Hannah had taken a real turn for the worse and she felt that it was very possible that she was passing tonight. I haven’t heard a confirmation on that yet, but my heart is so broken and aching for them as they watch her slip further and further away. Part of me prays for as much time as possible but the other part of me wants her to go before she gets to a point where she lingers and suffers. Please just pray that Hannah’s time is easy and that her family is surrounded by love and that knowing that Hannah goes to a perfect Heavenly reward gives them some peace and comfort in this time.

f.r.o.G….fully relying on God
–Anissa

Well, our site’s been down for the past 3 days. I’ve felt a little lost as to what to do because I’ve had things to tell you and pictures to share, but nowhere to put them! I’m also thinking that I may have to have Pete organize an email list, because that way I can let you all know when there’s been an update and I can let you know if there’s a change or problem with the site. I want to thank everyone who emailed to ask if we were ok and to make sure that nothing bad had happened. It’s nice to know that we aren’t those people who could die in their apartment and no one would now until the smell wafts into the hallway….we have people who care!

Just a note about some pretty special people in our lives. The company that hosts our website belongs to our friends Lloyd and Sandi Kirk. Lloyd worked with Peter at Verizon for a while and then their family moved to Mississippi. I’ve missed them so much and we’ve kept our friendship through the distance and the years. When Sandi and Lloyd found out about Peyton, we asked them if they would host our blog and they jumped on the chance to do something for us, they do it for free and they do it with the warmest and most loving hearts. As much of a lifeline as this site has become for those that care about Peyton, we need to send out a HUGE thank you to GCIS for the wonderful gift they’ve given us.

So much has happened in the days since the site went down. It’s been a very busy weekend.

Friday was a big prep day for the Cure Kids Cancer Challenge. Peyton and I spent the day with the other planners and volunteers and PCF staff at Hit the Trails in FishHawk, the site for the walk. We had early registration so that people could come and get their goodies, t-shirts and drop off donations. When we started on Friday morning, we had 300 registered walkers from online registrations and by end of day we had at least another 50 walkers signed up to walk. In planning an event like this for the first time, it’s hard to guesstimate the reception we’re going to get. 400 t-shirts had been ordered and we worried that we would run out.

We were blessed to be very right. We ran out early during the pre-registration on Saturday morning, I’d bet we had at least another 150 walkers sign up the morning of. It was AWESOME!

I don’t even know how to really explain what a fantastic day it was. There were less fantastic parts, like getting up at 4:30 to be ready to start setting up at 5 AM!! We were short tables and we had to get more ice, but those things were so inconsequential in the tremendous response we had.

By the time we had everything set up and ready to go, we had people showing up and milling around and it was obviously going to be a great turnout. But even hoping and praying for success doesn’t prepare you for the blessing it is to see the outpouring of support we received. It was chaotic, we had registration problems, we were running from one issue to the next, and it was so worth it all!

Moments before the walkers and runners took off, 8 families touched by pediatric cancer stood up and we read a poem.

From Left: The Baby Leo Astacio family, The Taylor Arrington family, The Jacob Duckworth family, the Zach Tucker family, me (ummm…don’t ask where the family is…Pete ran a few minutes late), and the Paige Wirth family.

What Cancer Cannot Do

Cancer is so limited…

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.

It was such a poignant moment. We shared in a moment of silence for the many children, the valiantly fighting, our cherished survivors and the precious lost.

Looking over the crowd of participants, my heart just felt like it might burst. We worked so hard, we planned and prayed, so much of our hearts were in this event and to barely be able to see the end of the line of walkers and runners, I just felt like Heaven was full of lots of little happy faces looking down on us with blessings on our efforts and all these people.

Once everyone got off, it was scramble time to get ready for them all to return…hot, sweaty and hopefully ready to spend some money. Our raffle tent was busting at the seams with baskets and auction items…we had a huge row of food offerings…we had fun stuff for the kids to participate…. and the crowd answered the call.

I unfortunately have very few pictures of the day because it was a constant run-do-go kind of morning. But I saw so many friends who’d showed up to support us, friends from our kids’ school, our nurses and child life specialist from the clinic where Peyton gets treatment, people from our church, friends we’ve made along the way.

Baby Leo and mom Lori Astacio, our #1 fundraising team!!!

Dad Leo Astacio

Cindy and Louise, two of the greatest pediatric nurses to ever walk the earth!!

When the announcement was made about the top fundraising teams, it was just amazing to hear that the top 5 teams alone raised over 25,000$!!! Our goal was to raise 75,000$ and although no official numbers have been given, I fully expect to hear that we surpassed it by around 25,000$. Does that just blow you away, or what?

The kids had a blast in the water fountains in the middle of Park Square, there were many jealous adults who would have loved to just take a run through them as well.

I’m glad it’s over. We had such a busy day after the walk, we had a birthday party we were supposed to go to and then Light the Night was in St. Pete that evening. I went home, I went to sleep. We missed everything else. Luckily, Peyton wasn’t the Honored Hero for this particular event, because I could not have dragged my exhausted butt out of bed for anything! It was worth every meeting, every email and phone call, every time we were told NO, every drop of sweat, every tear shed, it was worth it. I can’t wait til next year.

These were the pins that I made that we wore in honor of Peyton and her bravery. Don’t mock the lack of real craftiness, I figured Peyton’s pictures were so cute no one would notice the complete slacker-artistry. We see her every day, we’re with her good and bad, and sometimes we forget what an amazing little warrior we have in our family.

Here is the newscast of the interview that Peyton and I did with Channel 10’s Isabel Mascarenas. She was lovely and did a great job of putting together the piece. You can click on the video story to see the whole shebang. Peyton will be signing autographs upon request. HA!

I found this interview that we did last year because we were stuck in the hospital over Thanksgiving. What a huge difference in us both! I guess we’ve both got more comfortable in front of the camera. Just a sad note, the little boy, Mark Demaris, passed away shortly after this was filmed.

I have to share this story about a new friend we made this weekend. Tim Lee is training for the IronMan Triathlon World Championship in Hawaii. He’s going to swim 2.4 miles in the ocean, bike for 124 miles and then, just because there’s nothing better to do, he’s going to run for 26 miles. I have issues with how far I have to walk to my car at Wal-mart, this guy is going to do all of this in, his estimate, about 13-14 hours. HOURS, people! But his heart is as big as his ambition because he’s running this event in memory of Taylor Arrington, a beautiful young girl we lost this spring to Ewings Sarcoma. Tim didn’t even know her, never had the chance to meet her, but he’s taken her brave fight for life as an inspiration for all his hard work. He’s going to swim, bike and run in honor of Taylor and the Pediatric Cancer Foundation and I just ask you all to pray for his endeavor. I’ll post more info about what this phenomenal guy is doing as the IronMan Championship draws near.

Monday is Peyton’s big day of the month, as well as her big day of this cycle. In the morning I’m taking her for the physical therapy evaluation in hopes they can help her with the leg/foot issues she has. I don’t know if it’ll be a therapy solution or some sort of insert to put I her shoes to force her to walk properly. But hopefully it’ll help.

In the afternoon we head up to our clinic for her tri-monthly spinal tap. She’ll have fluid pulled to check and she’ll have her Methotrexate administered spinally. She’ll also get her Vincristine in her port and then we’ll start her 5 days of steroids. On top of her nightly 6MP….. can I just say that the phrase Maintenance is a complete fraud!?! But wow, I had dreams of the day we’d finally get to this point, last year it seemed so very far away.

f.r.o.G….fully relying on God
–Anissa

Last night we attended the Children’s Cancer Center annual Board of Directors meeting. We took our kids. Maybe not our brightest move, but once there it seemed wrong to make them sit in the car all that time. But in mingling, albeit loudly mingling, with the people on the Board and those who donate to make the Children’s Cancer Center a reality, it is a great chance for them to personally meet some of the kids and siblings who benefit from their wonderful contributions.

Survivor row, with Rachael thrown in for good luck, Dana Bertoch (Lymphoma survivor), Adelaine and Peyton…and if you look closely, you’ll see the “I tricked mom” pink cowgirl boots!

The cutest twosome ever!

The girls yukking it up during the loooong speeches

Peyton and Cody Bertoch…can you just smell the future wedding in the air??

For those of you who don’t deal with pediatric cancer, I’m so thankful that you will never have to cope with what we do. I wouldn’t wish it on my worst enemy. My grandmother passed away from cancer the spring I was pregnant with Rachael, my mother is a breast cancer survivor and I was honored to be with her through her surgery and as much of her treatment as I could. 15 months ago, if you’d asked, I would have told you that I had a pretty good grip on how cancer affects a family. I mean, this was my grandmother and my mom!

Nothing in my life had ever prepared me for finding out that my child, my youngest, my baby girl had cancer. This crushed me. People comment that I find so much humor and have such a great attitude about things, but those who read this blog in the first day know that it hasn’t always been that way. My first weeks and months were so overwhelmed with numbing fear and anxiety and worry. Every day I had to work to get myself out of bed just to face another day of life with cancer.

It took me a while to want to even think about going to the children’s Cancer Center, and it was after weeks and weeks of “Hey, we’re doing this neat program”, “We’d like to invite you to participate in this or that” from Sharin and Sara for me to finally decide to go. I remember the first day I went to a Little Tales meeting. I left knowing in my heart that I would never go back there again. I just couldn’t be with all those sick kids and their parents, I didn’t want to get to know them, I didn’t want to have to let them in.

Yet we went back. Week after week, and I did get to know the families, I fell in love with their kids, I grew to understand what a blessing it is to have a support group of people who truly GET what our live are all about. And I found that it wasn’t just about my fears and pain, but in getting to know all these people, it was such a blessing to be able to hug them and be there for them when their pain and fears threaten to drown them.

Wow, that sounds a little depressing, but that’s not all it is. I found my laughter again being with these people. I found my smile and my ability to see the humor of life again. There is a huge window that separates the room that the moms sit in for Little Tales and the playroom where the kids are going wild. The comment was made that it’s interesting to walk by and peek in the window because from one minute to the next it’ll be so very serious and solemn and then it’ll be the whole group of us laughing until we’re in tears. That’s just how it is. We connect, we get it, we laugh and we cry together and I am so thankful for the Children’s Cancer Center, the staff, the volunteers who’ve worked so hard to make our lives more bearable and in the process helped us to find our lives again.

Alrighty then!

For those who are following the “Peyton Hair Growth” watch…. it’s still coming in…..still all over. As my friend Basi commented, be very specific when you pray, our God has a very good sense of humor. I’m awaiting the day that we can braid her hair….down her neck….along her back….following her leg and ending with a cute little hair bow at her ankle. She may be the only girl at the prom with a turtleneck prom dress, but we’ll make it work.

Please keep those prayers for Hannah Deal coming. She’s had the vent taken out, she’s been moved from the PICU to a Hospice House. I’m unsure if this is a final move or if they are transitioning her to go home after this, but the choice was made to take her to Hospice and the family has a nice place to stay with her that they have made as homey and comfortable for Hannah as they can. Please keep her family uplifted as they continue to treasure this time and prepare their hearts. For my children, they have asked if Hannah’s all better now that she’s out of the hospital. It’s been terribly hard to make them understand that there is no getting better for Hannah, that even though she got to leave, she will leave us much too soon. Poor Rachael has had a hard time wrapping her brain around it…. I mean, I have a hard time figuring it out…. so please pray for the many children who love Hannah and for those parents who have to help them cope with the loss of their friend.

Another sweet friend is making her presence known at the PICU at All Children’s Hospital. Delaney Potterbaum is another little girl that we know from the CCC, she has a brain tumor called an Optic Glioma and it was explained as low grade and that it wouldn’t be aggressive. Unfortunately, they were very wrong and about 6 weeks ago it was found that Delaney’s tumor had taken a major leap in growth. She has been declining for weeks, but her family has held strong hope that her new treatment plan would make the tumor stop growing. Delaney is having an MRI that will tell them if the tumor has grown and is causing her symptoms. If the MRI shows growth there are no further options for Delaney. She has had all the radiation that she is allowed to have in her lifetime and there is no chemo treatment. Just keep Delaney and her family in prayers as well.

It is so hard to watch these two warriors succumb to their disease. I don’t know it is for the other parents, but I’ve lain awake at night, just wondering if I could make the choices they are being forced to make. What is like to have to make advanced funeral arrangements, what kind of flowers would Peyton want, what would I dress her in? I try to put myself in their place, but I can’t. Just like someone who doesn’t have a child with cancer can never understand what it’s like. A parent who’s not had to know their child is about to die can never truly understand that pain.. And I don’t want to, I desperately don’t want to. Its terribly morbid and I swear I haven’t been writing any poetry about it, but it has been heavy on my heart.

When you go to the Lord in prayer, please just keep each of these children and their families in your heart.

f.r.o.G…fully relying on God
—Anissa

ps. Dana Bertoch, our FAVORITE 19 year old in the whole world is an inspiring cancer suvivor. She has started a business called Glamour Flops, you HAVE to check these out. She’s donating a portion of all sales of her hand-beaded Glamour Flops to the Pediatric Cancer Foundation in honor of National Childhood Cancer Month.

Keep those prayers coming, because God has blessed Hannah in a phenomenal way!

My friend Joanne and I got the chance to go down to All Children’s to see Hannah and her family. We went bearing “treasures” for Hannah (she always has her little treasure box full of pretty, sparkly trinkets) and food money for the adults. My heart was so heavy at the thought that it would be the last time I saw Hannah. I cried my tears on the way so that I would be dry when I talked to Lisa and prepared myself for the sight of Hannah with all her tubes and lines, if we were allowed to go see her in the PICU at all.

We ran straight into Lisa in the hallway and she took us back immediately so see Hannah. She looked wonderful! I mean, I don’t know what I was expecting her to look like, but her color was so good, she was sleepy and sedated but could acknowledge us when we talked to her and she would respond with a head movement or a leg kick. I dug into my pocket for the sparkly treasures that Kay Bertoch sent to make her happy and her eyes actually lit up and when one was placed in her hand, her little fingers just closed over it and she held that treasure so tightly the entire time we were there.

She did have a lot of tubes going in and out of her, the numerous beeping machines and monitors, but nothing mattered except seeing her look up and and recognize me. Her hands were restrained so that she wouldn’t pull out any tubes, but she’d kick her little leg out to get attention or to show her excitement and she seemed really happy that we were there.

Most importantly, God has worked a complete 180 in Hannah’s case!!! I would love to tell you that she’ll walk out of there a perfectly healthy child, but that isn’t the way her story goes. However, we accept the blessing that more time is and treasure every moment of every day with her. The doctors decided that since she was doing so well healing from the pneumonia that they would take the vent out today (I haven’t heard how that went yet) and they were 90% sure that she would do fine with that. They also suggested that if she continues to do well with the antibiotics, she could go home in 4-5 days!

She’ll be monitored so very closely so that she doesn’t choke on her tongue or aspirate, but she will be leaving that hospital when yesterday it seemed that her time was about to end. I don’t know what the Lord will bring, but today we are joyful for this turn around and we continue to pray that Hannah will be painless, happy and that her family enjoys this precious time.

Yesterday, when I got the news that Hannah was doing so poorly, Peyton and I were at Target. That’s a bad place to be when you get sad news! We had to trek across the store to find a box of Kleenex, and Peyton, bless her heart, just sat in the cart and handed me tissue after tissue. She finally worked up some tears and cried along with me. When I asked her why SHE was crying, she said “Because you’re making me cry, mama!”

That’s so sweet.

But she’s a pretty tricky little monkey.

I was pretty out of it mentally while we were in the store (no comments on that one, I can already see them coming!). So out of it, that when I got home, there was a pair of pink cowboy boots, a brown purse and a book in the bags. Do I remember buying them? No. Did I approve the purchase? Apparently! I even had to go back and check the receipt to make sure we paid for them because I don’t even remember putting them on the checkout. I drove home….feel safe on the road now?

f.r.o.G….fully relying on God
–Anissa