Hope4Peyton

Today was a blur.

This morning I had to prod Nathaniel out of bed for soccer camp and got the girls up and running for “Free Movie Wednesday”. After seeing Ice Age 2, I sent Rachael off with my friend Kim for the afternoon and she picked Nathaniel up from soccer as well. I had to take Peyton down to the Children’s Cancer Center because we left her diaper bag behind when we left playgroup on Tuesday. Normally it wouldn’t have been a big deal and no worth a trip downtown, but because she was due for her spinal and port chemo today and all her EMLA cream was in the diaper bag, we had to go.

They teased me mercilessly at the clinic because I had a complete blond moment on Monday. I had it in my head all weekend that her chemo appointment on Monday was at 3:30 and just as we were getting ready to leave the house at 3:00 when I got a call from the clinic.

“Is everything ok?”

“Yeah, we’re just walking out the door on our way up there to the clinic.”

“Your appointment was at 1:00.”

“Really?”

“Yes really.”

“Riiiiight.”

So, they all gave me a hard time about my total brain fart, I’m usually pretty good about keeping our schedules in synch, so they really got a kick out of this. The irony of it is that they hacked on me for thinking we could do a spinal tap on Monday at 3:30…but today, when her chemo finally got ready, and we got down to business…it was 3:30! It’s all good, she got her spinal Methotrexate and her Vincristine via her port, plus she starts her 5 days of steroids and her regular nightly dose of 6MP.

Tonight after dinner we were visited by a group from our church, the motorcycle ministry came by. They rolled up nice and noisy and parked all the down the street in front of our house. They brought sweet presents for Peyton and just came to give us encouragement and pray over our family. It was such a wonderful way to end a really tiring day, with this reminder that God provides extra strength when we need it most.

I have to tell you, one of the funniest things that my kids do is sing in the car. They sing loud and with complete disregard for whether or not they know the words to the songs. It just cracks me up to hear some of the stuff they come up. Rachael has taken up rapping now (like all good half-asian girls do) with the line “I like big butts and I’m in the sky!” I don’t know if they actually think about the words that they’re saying, but it makes for good times rolling down the street.

Other things that keep me giggling….a house down the street from us has been revamped and it’s been fun to watch all the improvements they’ve made. Then suddenly, there’s a sign on the front that says “The Korean News”….and I’m excited because that must mean me, right?! Every day that I pass that sign I feel like just running in and saying “Nope, nothing new today, but thanks for keeping track!”

Tomorrow is another normal busy day in the Mayhew house, Nathaniel has soccer camp, Rachael has art class, Peyton and I have a million errands to run, i’ve promised to take the kids for a swim at the Y, and then we are going to the fundraiser for Sydney Sims. It’s from 6-8 at Bell Shoals Church in Brandon, if you have the time and can make it, please come support this brave young lady and her family. Dinner is being provided by Cheddar’s Restaurant and there will be live music by Chad Brock. We just ask that you all keep giving Sydney much needed prayer support.

f.r.o.G…fully relying on God
—Anissa

June 2006, just weeks before Peyton's diagnosis

Our family has two big anniversaries coming up that are bittersweet experiences that could have left us changed for the worse, but has seen us grow stronger as a family and in our faith.

When say that July is our least favorite month of the year, we aren't kidding around. July has been particularly brutal for us, and not just because of heat and bugs.

July 20, 2005 was the first day of Pete's summer vacation and we didn't have much planned, but what happened blew us out of the water. After I woke up, I tried to talk to Pete but he told me I was mumbling and I just blew it off as still being sleepy. I got up, got a cup of coffee and sat down on the couch to enjoy it. My first drink ended up dribbling straight out of the right side of my mouth and all down the front of my bathrobe. My first instinct was to look up and see if Pete saw it because I knew that would be my signature smooth move for the day. When the second sip of coffee did the same thing, and Pete noticed THAT, we both realized that something was definitely wrong. After getting the kids settled so that we could head to the hospital, we were shocked to find out that my blood pressure was 240/190! Shortly after an MRI, the doctors came in and told us that I'd had a bleeding stroke in the night. A stroke…I was 31 years old. I truly thought this was going to be the worst day of my life….little did I realize that had yet to happen…but it rocked our whole world. I know we were both terrified that I was going to die, that I would be left disabled somehow by this stroke, and my personal worst fear was that another stroke would leave me in some horrible conscious vegetive state. There are worse things than dying.

After 10 days in the hospital, I left on enough medication to strangle a small pony. The first weeks home were just awful for me. I walked around in a daze because of the medication, physically I was weakened on my whole right side and I couldn't carry Peyton with my right arm for long and I shuffled when I walked. I just feared that this was the rest of my life. I was going to be this half person, there..but not really there….because of the amount of meds I would just sit in a chair and stare off into space, I couldn't follow a conversation, I felt perpetually stoned. I struggled to be there for the kids, to be a part of the family, to try to be normal, but I just couldn't. I finally was able to get my medication adjusted so I didn't feel like I was walking under water, I started physical therapy when the kids went back to school and the healing began. It took 6 months, another trip to the hospital where I was overmedicated and my blood pressure plummeted and went life-threateningly low and a lot of patience and prayer, but I now if you didn't know I'd had a stroke, you wouldn't.

I still fight with fatigue in a way I didn't before the stroke, I still take a ton of medication to control my blood pressure, I still feel a little fear whenever I get a really bad headache, but I know in my heart that the stroke was just a preparation for our family to get us ready for Peyton getting cancer.

In just a few days it'll be the one year anniversary of Peyton's diagnosis. We joke that Peter's never allowed to take a vacation in July ever again because it was the first day of his summer vacation last year that we ended up at the hospital again, this time with non-stop prayers for our baby. We're a little nervous because our Dream Wish trip to Give Kids the World falls on the last week of July. We joke that as we drive to Orlando a piano will just mysteriously fall out of the sky onto our vehicle. If it does, we may just choose to board up the windows and become hermits during July for the rest of our lives.

In the time since I had my stroke, so much of our life had changed. We grew closer to each other, we learned to reach out and accept help when it was offered, but I know most importantly, we grew closer to the Lord and renewed our faith that He was in control. In doing this, He provided what we would need to get through the challenges we didn't even know would lie ahead of us. We strengthened our friendships, we changed insurances in consideration of my needs, never thinking we would need it for one of our kids, and we learned to love each other through the times when we were acting pretty unlovable. How can we not believe that God's looked out for us each step of the way? I guess for some, the thought would be "God could have just not given you a stroke or Peyton cancer", but He has brought so much good into our lives through these events and given us the opportunity to do and be more than we ever have before. It would never have been my choice to have our growth come through these particular lessons, but He knows what it takes for us to truly become what He has planned and for us, this was it. I'll be honest that I'm praying that He finds other ways for us to grow in the future, but who am I to question His mighty methods?

As these anniversaries approach, it would be so easy to think about all the things we had planned that never happened, the dreams we've had to put on hold, the fears and sacrifice we've been through. Instead, I choose to concentrate on the multitudes of ways that we've come through these past two years with more blessings that we'd ever imagined. We've had the chance to touch hearts and raise awareness about childhood cancers, we've found this amazing purpose that I know will be a mission for the rest of our lives, we've felt the love of our family, friends and community in a way that is just beyond comprehension, we've had our lives impacted by meeting the most courageous and outstanding families, we've learned not to sweat the small stuff (and if it can be fixed, repaired or replaced….it's ALL small stuff, inconvenient maybe, but still small stuff), we never take a day or moment with our family for granted, we know first hand that each day is precious and to be treasured…..these are all gifts that could only be given and truly be appreciated through the pain.

We are so thankful for all the people who continue to offer their encouragement, support and prayer for our family. We are ever in awe of the other families we've met who've had their lives touched by cancer, by the strength of friendship and the bond we have with them. We love and cherish the friends and family who stand by our sides every day to get us through it all. And we thank a mighty God who provides what you need before you even know you need it.

f.r.o.G…fully relying on God
—Anissa

When I don't post for a couple of days, I usually get a couple of emails asking to make sure that we aren't at the hospital and if everything is ok. I'm glad to report that all is very well! It's just been an extraordinarily boring weekend, all things considered.

For Rachael, the highlight has really been lighting up her new Easy Bake oven and making miniature baked goods. She was thrilled with her first successful cake and promptly ate it without offering to share with anyone. She is still planning her birthday party, now she wants to bake her own cake! Her birthday was May 23rd. She's either incredibly late or obsessively early.

Nathaniel got to spend Friday and Saturday with his friend Ryan, either at his house or ours, back and forth all the time. That's one wonderful thing about having your best friend living next door. To get him some outdoor time he's heading off to soccer camp each morning this next week at Central Baptist. Poor Rachael was supposed to do a soccer camp as well, but hers fell during the Pox Plague Extravaganza.

My sister brought up these great memories of the summer freedom that we had as kids, we lived out in the farmland of Indiana and we were tossed out of the house in the morning and as long as we were back by dark, there were no worries. I played in a garage full of chemicals, power tools and farm equipment….ran wild for miles on my bike out of visual contact range with no cell phone…and whenever someone came out of their house to say hi and offered me a snack?? …Oh you know I was eating that! I am still alive. Amazing isn't it? I feel a little sorry for my poor kids who will never experience that kind of freedom in their childhood.

Peyton has been rather snotty this weekend…I'd like to say that's a physical condition, but it's an attitude thing. She's having a hard time adjusting to the fact that we expect her to come back down and live with the little people. She's been very tired and I'm attributing some of her cranky to that, but part of it is just pure pampered spoiled rotten diva-liciousness. Healthwise, I think she's feeling pretty good, as long as she gets sleep she's doing well. She's not had any complaints about pain and her limp has completely disappeared! Her scalp is still reacting from the radiation, some peeling…some acne type bumps…redness…and she has this very random sore that just popped up, but all expected and par for the course. She's still not eating much, she's lost most of the chunk that she put on with her last round of steroids, but she starts up for her first 5 day maintenance pulse of steroids tomorrow, so we'll get to see how she does during these times.

I don't know if we'll be able to expect any consistency in her reactions from month to month. I know that when we started our last round I watched very closely to see how she reacted for the first 5 day, it was pretty easy going until about day 10, so I'm keeping my fingers crossed that she'll handle it ok. Tomorrow also kicks off with the spinal tap and port chemo that she didn't get last week. Her counts were decent on Friday, so baring any strange dip we're good to go tomorrow.

I have to say, I'm having a really hard time picturing what she's going to look like with a full head of hair. Rachael had so much hair when she was the age that Peyton was diagnosed, while Peyton's was still thin and in a mullet…so she never had a full head….and now her face has grown and changed so much….she'll look like a whole different little person.

Rachael @ Peyton's current age of 3 1/2

Pete and I had the opportunity to leave the kids with a friend and go play poker with some other friends. We have a group of buddies that get together every two weeks, we laugh, we talk smack, it's so much fun! I never win, but Pete often does well. It was good for us to get out and spend some time away from the house and the kids.

Today the kids and I got to Rafaelo's Pizza to eat lunch after church. They had a fundraiser event to benefit the [url=http://www.givinghopethroughfaith.org]Giving Hope Through Faith Foundation[/url] for the Tucker family and it was great to see that they were completely ambushed by the number of people who showed up! It was awesome to see so much support for this wonderful cause. Plus it's always great to see the Tuckers and the Duckworths and I got the chance to meet Rafaelo's son who is battling Hodgkin's Lymphoma. The food was fantabulous!!!

f.r.o.G….fully relying on God
—Anissa

Nathaniel's room sort of says it all….if Pete could have talked me into decorating our room like this, it would be identical. The border across the top of the room is made of comic book covers, either copies or originals, taped up to make a one of a kind, never to be duplicated decor….he has the Millennium Falcon hanging from the ceiling….he has 4 foot tall Master Chief (X-box video game character) pinned to the wall….it is a guy's room. This room says it all….we are a family of geeks.

We like our video games, we like our sci-fi and we like our comic books….we are nerds. Maybe me and the girls not as much as Pete and Nathaniel, but there is a very definite pass down of the nerd gene. So, when we contacted the [url=http://fl501st.com/tampabaysquad/page1.htm]501st Troop of Stormtroopers[/url] to come out and be a part of Peyton-Palooza and they agreed to come, we were really excited! I mean, we love Star Wars….after the yard sale and our live encounter with the troopers, we had to come home and watch all the movies…we are THOSE people.

But the awesome thing is this…as I've gotten the chance to talk to some of the people behind the costume masks, and read the stories of what these people dedicate their time to, they really are heroic! The founder of this group is a man named [url=http://www.albinjohnson.com/]Albin Johnson[/url], who lost his daughter [url=http://www.katie.albinjohnson.com/]Katie[/url] at 7 years old to a brain cancer. At Peyton's yard sale, the Stormtoopers presented her with the sweetest little pink patch of a pink droid, and I didn't fully understand what that was about until I read about Katie. Katie made a wish for an R2-D2 and a group provided her with a pink one that they named[url=http://www.r2kt.com/] R2-KT[/url] (which sounds like Katie, if you didn't pick that up). This mechanical legacy that Katie left now goes around entertaining kids at hospitals, raising awareness for pediatric cancers and raises money for charities like Toys-for-Tots and Make-A-Wish.

[url=http://www.r2kt.com/]

I am just amazed by the way people are able to create the greatest good from their deepest grief. How easy and justifiable would it be to just curl up into a ball and let the sorrow overwhelm you? I know that just knowing that Peyton had cancer threatened to crush me, and I can't even imagine the depth of pain these families face, but it is so inspiring to see the ones who channel all that pain and loss into a way to help others. The Tucker family started the [url=http://www.givinghopethroughfaith.org]Giving Hope Through Faith Foundation[/url], The [url=http://www.caringbridge.org/fl/jacob]Duckworth family[/url] have championed the [url=http://www.fastercure.org]Pediatric Cancer Foundation, the Pediatric Cancer Foundation[/url] itself is only in existence because of two cancer parents who made it their mission to find a cure, the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url] is full of staff and volunteers who have been touched by cancer, and that's only a few local examples, the list goes on and on….the ways that families are making the difference between cancer and hope.

I finally feel back among the living, it was a flash 24 hours of sheer yuck, but now it's over and that's a good thing because when Mom goes down the whole foundation of the household threatens to crumble. Peyton's clinic trip was good, her counts were all up so she'll get her chemo on Monday and officially start Maintenance with spinal Methotrexate, Vincristine in her port, 5 days of steroids, daily Mercaptopurine (6MP) and her other assorted antibiotics and side effect fighting meds. It's still a lot of medication, but this is her life for the next 2 years.

We saw our little cutie friend [url=http://www.caringbridge.org/visit/allieblain]Allie Blain[/url] at the clinic this morning and she just needs us to wrap her up in prayer. Allie has ITP, a platelet disorder, and she currently isn't in any treatment plan because the last plan she was doing didn't work. They are waiting to see what her body is going to do, and they are praying that a solution will come for Allie. Just to give you an idea of the limitations that Allie suffers under, she can't jump rope, she can't bounce on a bed, she can't climb on furniture, a simple fall has the capability to send her to the hospital….she is so trapped within the dangers of what could happen if she were to get injured. The bruising bounce that Peyton took at the yard sale would have been unbelievably dangerous for Allie, whose body can't stop bleeding on its own….each bruise and bump for Allie is a threat. Please keep Allie and her family in your prayers, especially as they are waiting….just waiting for an answer of what to do, what is the best path of treatment for Allie.

I never thought I would be so happy to be doing load after load of dirty towels!! But let me tell you, I'm abnormally jazzed about it….it'll wear off sooner or later, but for right now, I'm on a Tide-inspired euphoria right now!

f.r.o.G…fully relying on God
–Anissa

The arrival of a summer bug knocked me flat on my butt yesterday. My friend Kim left her daughter Lily here so she could "babysit" for me and keep the girls occupied while I laid on the couch and suffered.

I went to bed about 6 PM when Pete got home and left him to fend for everyone. It's good to be able to do that. This morning I feel slightly more human, not great, but functional.

The highlight of our day was when the guy came to fix the washing machine!! Yes, he came! He was here for all of 10 minutes….and he fixed it. It was something wrong with the lid switch and now is completely repaired! Thanks to all who've made calls and offered their help and went above and beyond for our family. Monica Tappan, Holly Wirth, Mr. Appliance, Famous Tates Appliances…thank you!

Because of the onset of plague I had to reschedule my meeting with the Brandon Foundation, but we're going to hook up next week instead.

Peyton has a clinic visit this morning for counts and that's it for today…nothing but home and relaxed chilling.

f.r.o.G…fully relying on God
–Anissa