Hope4Peyton

As a physical manifestation of how improved Peyton felt today after receiving her blood yesterday, she wore a red cape and swooped through the clinic as “Super Peyton!”

It was a neat compromise that we found, superheroes apparently don’t use binkies (pacifiers). For the entire morning while she was in costume, she didn’t need one, but as soon as the cape came off and she laid down for a nap, she was back to “BinkyPeyton”.

I’m hoping that if we get her some fancy shmancy Wonderwoman underoos we might be able to get her potty trained! Who knows?

Peyton’s clinic throne while getting her infusion of blood

Her week at the clinic is done, her counts are dropping steadily as her chemo builds up in her system and we’ll probably have a fairly sedate weekend as her germ fighting abilities start to fail. It is always fun to see how much she perks up after getting her “Mr Red” – packed red cell – infusions, all sassy and sparky. I asked if I could have her leftovers, but they said no….those killjoys at the clinic!

Tuesday night we were surprised with an offer of hockey tickets for the Lightning game against the Kings. Adelaine’s family was able to be there and we enjoyed a night in the Richie’s Rascals suite, provided by the Children’s Cancer Society and Brad Richards Foundation. They fed us (all diet cookies, I swear!), gifted us (cutest Richie’s Rascals t-shirts for all the kids) and gave us a great night to spend with friends doing something totally fun. My mother in law Sharon was able to attend her first hockey game and agreed that once you’ve gone to a game in the suites, it’ll be hard to go back to watching a game in the regular seats. We’re so spoiled now. Peyton and Adelaine were both in fine form, just running around at full speed the whole time. It was a wonder to see them both feeling good at the same time because generally, one or the other has not felt their best whenever we’re together. Of course, I say that now and we’ll end up roommates at the hospital over the weekend!

Peyton and Adelaine

Peyton enjoying the ride home

Rachael had her first art class last night and she just loved it. Maybe with a creative outlet for her art, she’ll stop writing on doors, walls, toys, clothes, her sister….anything is possible.

“Rachael, did you write on this (insert item here)?”
“Nope.”
“Are you sure?”
“Yeah.”
“Wow, then who else might have scribbled Rachael all over it?”
“Maybe Peyton?”
“If you’re going to do graffiti, you’re going to have to learn not to sign your name, Rachael.”

Nathaniel has begun a season of baseball at his school and totally loves that. This week he scored the game winning run, so he was hyped up about it. He’s been trying out lots of new sports since he took his hiatus from tae kwon, and he’s liked each new outing. I’m hoping something really grabs his attention and becomes his “thing”, but he’s sampling a bit of everything to find out. Tonight he has an art class as well, I’ll have to scan and post some of his work, he’s pretty darn good.

We don’t head back to the clinic until Monday, when she gets a dose of Vincristine in her port and a double shot of Peg-Asperiginaise in her legs. It’s a painful and unpleasant day, but it’s not long and it’s not often.

Team Peyton is getting more support every day. We’re up to 5 team members and we’ve pulled in some generous donations already. We’re not even close yet, but I know our team goal is within our reach.

Peter’s found Craigslist…which is like a constant yard sale that you can enjoy from the comfort of your home computer. It’s dangerous and addictive and I’m thinking of starting a support group. They actually list free stuff that people just want you to come and take away! Do you know how tempting it is to buy someone’s 36” tv that has a cracked screen and broken color tube so that it often has no color, but when it does it looks great!??? Two words for you: It’s FREE! I’m a little dizzy just thinking about the possibilities.

Tomorrow I head off with Rachael’s class for a field trip to the Aquarium. It should be fun, and I am so looking forward to a day with my girl.

This week has much improved from my meltdown earlier, and maybe I just needed to get some of the steam out of my system…..maybe I just needed to scare the living daylights out of my kids….who knows? But it worked and things have been working way smoother since. I love the fact that our friends and family fess up to the fact that we all lose it and threaten our kids with produce items every now and again. Just doing it the best we can.

A special verse came my way this week, I’m going to share it with you.
Colossians 1:10-12
And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light.

f.r.o.G…fully relying on God
—-Anissa

ps…for all of those who watched “Married With Children” in the early 90’s….Peyton has channeled Al Bundy!

I’m starting this post by letting everyone know how thrilled our household is that the Indianapolis Colts are Superbowl champs!! It was a great game and we had a great day enjoying it. The Vancleave family invited us over to enjoy a day of poker and football, and we had much fun with both. We walked in the house and Nathaniel took off with a group of boys, and this is no exaggeration, I did not see him once until it was time to leave. They played games and did all those fun things boys do.

My girls know how to party hard!

Rachael and Peyton roamed through the groups of grow-ups being cute and loveable. Both enjoyed the animals that are kept by Jimmy and Linda, the ducks and chickens, bunnies and goats just delighted the girls. It was the first time many of these friends had seen Peyton since she was diagnosed and they were all heartwarming in their support and encouragement. Many could not believe how happy and lively she was and it was an opportunity for them to see how well she’s been doing.

Not sure what brought on this bit of hamming, but it’s pretty funny.

Today we began a new week of treatment, this morning was a spinal tap and medication administered via port. Each spinal tap is different, I keep thinking she’ll react the same as she did last time, but she pulls new tricks each time. This morning she fought so violently throughout the procedures that we agreed that she may need more medication next time to sedate her a bit more completely. She was really ticked off with our nurse Cindy, she complained that “it’s too dark when Cindy sits on me!” I have to laugh, but it’s not fun for any of us when she fights. She cried after and then got upset because the tears kept pooling in her ears while she spent her mandatory 30 minutes flat on her back. She recovered quickly and snacked while being pampered by clinic staff. We’ll be back Tuesday through Thursday for chemo and Wednesday will be a blood infusion since her counts are dropping quickly. They seem quick to me, but I guess they’re pretty average.

We have 4 people on Team Peyton as of today. Pete and I count as two of them, so we’re hoping to get many more to join! Kids are more than welcome to come and be a part, we’re planning to camp out right on the soccer field at USF for the whole night. No one has to stay all night if they don’t want to, you can come, walk and then go home if you’d like, but we need people to be there at different times throughout the event. Please check out the team website at TEAM PEYTON and see how you can help!

Lisa and Harry Greenaker have returned home from Miami. It was a painfully agonizing day on Sunday as they traveled and he is suffering greatly. Their boys are thrilled to have their parents home and I know it was a wonderful day of reunion for the Greenakers. Thank you for prayers said during this stressful time for our very special friends, but the hard stuff is going to continue as Harry heals and goes through physical therapy.

I had the kind of nuclear breakdown tonight that was ugly and left me feeling like a terrible parent. The kids were doing stuff they know not to and not doing stuff they are supposed to and I just came unglued. Is it so much to expect the kids to pick up their stuff and put it away? I yelled and ranted and basically threw a 33 year old temper tantrum. I gave myself time to calm down and the kids did what they were kick started into doing and then I spent moments with each child, apologizing, asking for forgiveness and making sure they know how much I love them. It’s so easy to get frustrated and tired and just let all that out at the wrong time and in the wrong way. I do ok most days, but every now and then it just overwhelms. I took some special time to pray, ask for forgiveness and for patience and peace. I’m still feeling sort of awful about the whole episode, but tomorrow is a new day to do better and to get back on track with my kids, my husband and God.

f.r.o.G….fully relying on God
—-Anissa

The hills are alive with the sounds of my kids butchering Rogers and Hammerstein movies! It’s a beautiful thing to see and faintly hysterical to watch them dance around the bedroom to “Mary Poppins with short hair!” — as Peyton puts it. The kids have just fallen in love with “The Sound of Music” and Nathaniel hasn’t figured out that it probably isn’t cool yet….hope he never does.

Chemo this week has been fairly uneventful. I use the word uneventful loosely. Monday wasn't a LOT of fun, but it went as well as expected and the crying was kept to a bare minimum. We went Tues-Thurs for some meds in her port and it was painless and easy….praise God. She stayed accessed and there were no problems on that end. Today, after 4 fairly heavy days of chemo, she felt great! She was dancing and singing and just having a great time and it’s just an amazing thing to watch her feel good. Things we would have taken for granted at any other time in her life are precious moments now. She’s pretty much stopped eating already. I’m giving her meds for possible nausea, but she’s not feeling bad, she’s just not hungry. In fact, she hasn’t sat down to eat a substantial meal of any kind since Monday night. She went from eating around the clock to not eating in 3 days, I honestly can’t say which is worse. At least she has a definite reserve of chub to work with when she’s not eating, she’s already losing some of her steroid weight.

For Peyton to go to preschool next year, she must be potty trained. This is a fact. This is also about as appealing to her as suppositories….oh wait, we did that to her….as appealing as a plate of black olives and bananas dipped in ranch dressing…no, she likes that….you get the picture though. In a united front against diapers, Sharon and I each went out and bought special “Peyton Potties” today. Along with special pull-ups (Dora, because maybe she’ll feel bad for peeing all over Dora) and lots of potty candy (that name is just horrible all around, but that’s what she calls it). She’s being encouraged at each turn to go, it’s been an unsuccessful venture so far, but if she can beat cancer I’m sure this is a no brainer. She actually sat on the little potty waiting to see if anything would happen all the way from “My Favorite Things” to when Maria leaves the Von Trapp house….she didn’t pee, but she did tell me her booty was numb.

One of the bribes was that I would take her to Chuck E Cheese if she went pee in the potty. Rachael asked me “I go in the potty, can I go too?” That girl says the funniest stuff. She has a field trip next Friday to the aquarium and begged me to go and I told her that as long as Peyton’s not in the hospital I would do my best to be there. I even went as far as to let the nurses at the clinic know that Peyton’s blood infusion would have to be any day but Friday, because we weren’t coming! They’re often amused with me. This is important to my girl and I want to be there with her. It’s also a fine line to walk in explaining that it might be that Peyton’s health causes me to be unable to go, but it’s not Peyton’s fault. So much has changed in their lives, it must seem like everything revolves around the little bald dictator in the house, but they’ve done their best to adjust. I need them to understand why, but make them see that it’s not something that she did on purpose or that she can help. How do you explain that it’s because of her that so much has changed and not have them blame her when things go wrong for them?

I just tell them it’s all Pete’s fault! Hahahaha

Today was my birthday. 33. When people ask how old I am, I made a point to say at least 40 and enjoyed the shock on their faces. Then they’d say “You’re not 40!” Right, I know that, but I figure I look pretty good for 40, I look pretty haggard to try to pass off 29 anymore. That joke only works until someone just nods and accepts the 4-0 as a plausible age…that will not be a pretty day. I got to go diet free for the day and enjoy cake and candles with my family. Peyton came home after an afternoon with Grandma and asked “Is it your birthday yet? Where’s your birthday?” Apparently it ain’t a birthday until you’ve had cake, so I’m blaming the caloric free for all on her.

I’m still waiting for you all to sign up for Team Mayhew for the American Cancer Society Relay for Life at USF! If you can’t join us then at least spread the word and maybe someone else can, it’s a great cause that needs every person’s involvement. Plus, if you don’t join us, I am not above sending Peyton out with a sandwich board behind you saying “This person won’t join Team Mayhew”….shameless, huh?

We’ve had a resounding answer to prayers this week as my friends Harry and Lisa Greenaker are in Miami dealing with the aftermath of the surgery. On Tuesday, Harry came out of surgery with positive words from the doc and that alone was a relief. Harry was able to start wiggling his toes and has since been able to walk. After a surgery like his, it’s nothing short a miracle through the grace of God. He is in excruciating pain as his body tries to heal, he has physical therapy that is not only painful but frustrating. But Harry and Lisa are constant in their faith, their love for each other and their trust in the Lord is just beaming from them throughout this experience. We keep our prayers going for them nonstop and we ask that you all keep them in your prayers as well, for Harry’s body to be as strong and healthy as his amazing spirit, for Lisa’s strength and patience in role of mother, wife, teacher, nurse and caregiver, and for their boys to be understanding of the strain of the family and to never forget how loved and cherished they are.

We just thank you all for continuing to walk this path with us. I fully expected the hits on the website to dwindle down as the initial urgency waned. For us, every day is cancer, but for others it can get to be a downer. I’m constantly amazed by the encouragement given to us and the love felt. Thank you a thousand times over.

This was sent to be in an email (Thank you Traci) and it touched me, I hope it reaches your heart too.

"May today there be peace within.
May you trust God that you are
exactly where you are meant to be.
May you not forget the infinite possibilities
that are born of faith.
May you use those gifts that you have received and
pass on the love that has been given to you.
May you be content knowing you are a child of God.
Let His presence settle into your bones, and
allow your soul the freedom to sing, dance, praise and love."

f.r.o.G…fully relying on God
–Anissa

ps…If anyone has a copy of “South Pacific” or “Oklahoma” they’re not planning to watch in the foreseeable future, shoot them our way. We are all about getting the kids just blasted with showtunes!

“So, where am I going to go today?”
Mom pulls out EMLA cream and Press n Seal (which for those of you confused by that, instead of using tape to apply the numbing cream which is hard on her skin, we use a big patch of Press n Seal and it adheres to the skin almost like tape, but comes off easily). She knows immediately that we’re heading to the clinic.
“Do I have to get my port done today?”
“Yes, we’re doing your port today.”
“Is it going to hurt?”
“Maybe a little, but only for a second.”
Mom applies EMLA cream to port while Peyton puts up very vocal complaints about how cold it is. Mom tells Peyton to turn around so cream can be put on her back in preparation for her spinal tap.
“Am I going to get a pokey in my back too?”
“Yes.”
“Is it going to hurt?”
“You’re going to get happy medicine so you won’t hurt.”
“Is it going to squish me?” This is referring to the procedure where the nurse has to curl her into a ball and basically sit on her to hold her still because she fights like a rabid gopher.
“Yes, a little, but it won’t take long.”
“Can I have a pink band-aid?”
“Of course you can.”
After adjusting all the Press n Seal, putting the clothes back to normal and squirming around to get used to all the paper on her, she’s disgruntled to say the least.
“I have cream all over me!”

I have to tell you, if I knew I was going to get a pokey in my adult back, having cream all over me wouldn’t be the loudest of my complaints, but she’s a resilient little girl and puts up with it all. She did get her back pokey, but not quick enough because she was starving by the time it was done. She doesn’t get to eat before the spinal procedure and by the time they got it all ready to go I think she was irate and hungry enough to give herself a spinal if we’d just give her pepperoni afterwards.

After the spinal tap and methotrexate is administered, she has to lay on her back for half an hour so it can travel to where it needs to go. She laid there with a peanut butter and jelly sandwich in her mouth, dripping jelly all over her cheeks and neck. It’s pretty amusing to watch. In the span of an hour, she ate a pb&j, half a banana, a bowl of pepperoni, a can of chicken and stars soup, and four containers of apple juice. She got more medicine administered through her port without a hitch, then sat on her behind until 4:30. We watched movies, she finally fell asleep during “The Sound of Music”, which means she missed all the nurses and staff singing along….she definitely regrets that one.

Peyton’s hair is falling out again, her peach fuzz is slowly melting away, leaving the softest shiny patches all over her head. She’s feeling good as she comes off the steroids, her appetite is still good and her sleep patterns are still crazy, but she’s got great color and she’s happy. Her blood counts were decent today, all in good ranges, but in the next couple of weeks they’ll drop drastically with the amount of chemo she’ll receive. We have to be up there four days this week for chemo each day, plus chemo that she’ll get each night at home.

Peyton with Adelaine and Doug Powell, proving that Baldies have more fun!

This weekend was busy. Saturday we had Nathaniel’s birthday party at the bowling alley. It was so much fun, the kids loved the cosmic bowling, where they turn off the lights and let the kids bowl with glow in the dark balls and pins. We had a good turnout of kids, Nathaniel was so happy and it was organized and simple for me. We had pizza, Darth Vader cake and ice cream, Peter and I cheated on our diet unashamedly. Peyton loved bowling, she’ll tell you “I rolled the ball fourteen times!”, and Rachael managed to bowl in the dark with sunglasses on. That kid is just too cool.

Peyton, Lily and Reagon…lounging on the bowling lane

Nathaniel and one of his best buds Ryan

Nathaniel’s pal Armand enjoying the party

Rachael got a gift of makeup at the party and in it was a big pot of glitter. For anyone who remembers the post about Rachael and glitter, this may be redundant, but she did it again. She had so much glitter on her face and body that she looked like she’d developed some sparkly form of leprosy! That girl and her makeup are just too much.

This morning, Peyton and I had to be at the clinic by 8:30 and that left Dad home to get the kids to school. When you’re a mom leaving dad home to get the kids off to something when he’s not normally the one to get them dressed and ready, it can be an experience to come home and find out what they wore for the day. Today was exceptionally fun because it’s spirit week at the school and today was clash week. Basically, anything they wanted to wear was fair game. I did end up helping them pick out clothes because it was too much fun not to. Picture it (because as snap happy as I am, I didn’t have time to photograph the kids this morning, of all mornings!) Rachael left with bright polka dot socks, two different shoes, purple floral pants, a white turtleneck with red hearts, a tshirt with red and orange stripes, half her hair braided, half her hair in a ponytail and a grin big enough to eat her whole face. She looked at herself and announced “I look horrible!” Nathaniel wore camo pants, a bright green shirt topped by a brown Hawaiian print shirt and a tennis shoe and a sandal. He was thrilled and I don’t know that he felt there was a whole lot wrong with the outfit…scary. I left my house with my kids heading to school looking like color-blind rejects from Project Runway.

Our American Cancer Society Relay for Life team is starting to pick up slowly, our neighbor Greg joined and we’ve gotten some donation support. We still have a ways to go to meet both our team and donation goals, but I have no doubt that we’ll get there. If anyone wants info on joining or donating, go to Team Peyton.

Our dear friend Harry Greenaker heads in for his spinal surgery tomorrow morning. He needs all our prayers of support and encouragement. If you have a church that you can add his name to a prayer list, it would be such a blessing to the family.

f.r.o.G…fully relying on God
—–Anissa

There was news that NFL coach Joe Gibbs of the Washington Redskins has a two year old grandson that was just diagnosed with leukemia. It hit me that this is a family of wealth and fame and success, and all that is nothing in the face of what they are going through now. There is no dollar amount you can place on the life of your child, no physical luxury that can take away the pain of this experience, it becomes a fight for survival that affects every family differently, but unites people from all walks of life in its shared struggle. I feel the pain of this family, remember my own and I pray for them to have strength and peace throughout Zachary Gibbs’ treatment.

The American Cancer Society is going to starting up the Relay for Life, an overnight event that raises funds for AMC support programs, raises awareness of cancer needs, celebrates survivorship and remembrance of those who’ve lost the fight. Peter and I would like to start a team, it would involve agreeing to be on our walk/jog team throughout the night, getting sponsorship and donations for our team and having the opportunity to be a part of something so much bigger than us individually. If anyone is interested in joining TEAM PEYTON for this event, we’d love to have you on our team! This is the team webpage for Team Peyton and you can find more information about this event. We are going to participate at USF on April 13-14.

Peyton is still bouncing around these days. She has a diaper rash that would make grown men cry, it’s causing her a lot of pain and it’s just torturous to chance a diaper. We’ve tried to sway her to the way of the potty, but she’s adamant that she’s chosen to stay in a diaper until she’s decided she’s ready and not a moment sooner. I suppose it’s a small something in regards to everything else, and as I’ve told other, as long as I don’t have to change a diaper during her high school graduation then I guess it’s all ok. I would have liked for Peyton to start pre-k in the fall, but unless she gets the potty thing down it’s a no go. I think that if Nathaniel knew wetting his pants was a way to get out of going to school he’d probably consider what the damage would be to his reputation.

Nathaniel had big news yesterday. He’ll be traveling to Ft. Myers this spring as part of a team that will represent our school in the Math Olympics. This will be directly after his examination and testing by geneticists to make sure he’s actually the child I’ve birthed because I know I passed down no math-genius genes. We’re so proud of his making the team, he’s excited and I know it will be a great experience for him.

I’m doing ok, I’m exhausted and dragging and my house is a disaster because there’s no way I can clean faster than my kids can mess, and I’m just too tired to care. But, we get the basics done, and we continue to just roll with the punches that come our way. Right now, I’m trying to figure out what to do about school next year for the kids. With me not being able to work this year to pay for their tuition, God provided a scholarship for them to be able to attend and it has been a huge blessing in all our lives. To give the kids the reliable sense of familiarity they have at CBCS, along with the kind of nurturing and compassion they could get no where else, it’s helped them adjust to all the constant changes in their lives. Just keep this decision in your prayers, that a job that will allow for Peyton’s treatments and the need for flexibility in schedule will come along for me. I trust that if this is where the kids are meant to be next year the Lord will provide an answer.

f.ro.G…fully relying on God
—-Anissa