Hope4Peyton

Just the day that you’re feeling pretty motivated about working out you should go to a yoga class and watch a man over twice your age do everything 10 times better, longer and more gracefully than you. That really puts you in your cosmic place. I almost couldn’t do the poses because I was so fascinated with watching this guy contort himself into the perfect 3-legged horse….whatever that means.

The kids had the day off school so we used the time to chill out and just do a whole lot of nothing. We played games, our neighbor kid came over and he and Nathaniel built an enormous city of legos and I spent the majority of my day back in my jammies. It rocked!

Tomorrow is Peyton’s big chemo day of the month. We’ll go to Little Tales in the morning and then head to the clinic after a special lunch date with Peyton’s beloved Cody Bertoch. She’ll get her port accessed and her does of Vincristine and then we’ll start our 5 day pulse of steroids….joy. I’m praying that she handles this month’s steroids and Vincristine better than last month, but am mentally prepared for more aches, pains and emotional breakdowns.

Peter let later on Sunday than planned because he ended up having to work through Sunday morning. It ended up putting him on the road during a horrible storm through GA, so he had to stop and hotel it for the night. But he’s back safe and sound and working his butt off in Alabama.

A few weeks back I got a questionnaire from the National Children’s Cancer Society, I took the time to fill it out….and I do mean time…I think the only thing that kept it from taking longer than my SAT was the lack of a math section. They are putting one of my answers in their Patient and Family Services Newsletter. It was a question about how having a child diagnosed with cancer affects your relationship with your spouse.

This was my answer:

It's hard to focus on your marriage, to put the other adult high on your priority list when you have a critically ill child and two other children that you're attempting to make a "normal life" for. You expect them to be able to cope with coming far down on the list, somewhere between laundry and trash day. But the realization that this is your support person, this is the only other person in the world that understands what it's like to be the parent of your sick child and is going through the same pain and agony of watching them suffer through procedures and fearing the uncertainty of their future…you have no one better to rely on. We've been so lucky in the fact that we always count on each other, we reach out for that support and understanding, even when the stress is so high that all you want to do is snap their head off at the neck. We face each issue together, even when we disagree, we have learned to compromise and work towards our common goals in a new way.

Which sounds so much better than “Sticking your husband’s hand in the blender is WRONG WRONG WRONG. Find more constructive ways to vent your frustration and irritability.”

It’s not a healthy coping method, but it IS a coping method. Whatever works.

f.r.o.G.
–Anissa

ps…An interesting new discovery today. We were at the grocery store and I put a box of strawberries to her face so she could smell them…she sniffed and sniffed and told me she couldn't smell them. They had a very strong scent and the other two kids had no problem. When we hit the aisle with candles, I had her sniff a bunch of them and she couldn't smell any of them. So, I guess I'll have them check that out at the clinic tomorrow, perhaps more sinus problems.

Thursday brought an exciting morning as the kids woke up to find that Peter had come home. There was much hugging and kissing and jumping around while yelling “Daddy!!” Daddy arrived with roses for me and sweet valentines for each of the kids, which may bring on the idea that every time dad sweeps through the door he’ll be bringing presents. Our own personal Santa.

We went out for Valentine’s dinner with the kids, who better to spend our day of love with…than the products of all that love!

Friday brought a fun evening thanks to the Children’s Cancer Center. We’ve been so blessed to meet tremendous cancer kids through our time in treatment and the survivors that we get to know are not just walking examples of hope but full of a special kind of compassion for the little ones going through the treatment now. They bring a kind of love that can’t be explained or replaced. They know, they understand, they’ve been there and they’ve walked that path. So, it’s always a wonderful thing to see these kids giving back and making an impact on the little ones. Molly is a lymphoma survivor, her mother is the program director for our fantastic Little Tales program that Peyton and I so enjoy every Tuesday morning. Molly’s classmates came in to give the kids of the CCC a rocking good time, including a DJ, much dancing and laughter galore.

The parents were treated to free time to do WHATEVER! Some went home to do chores and get caught up, others went to run errands. We chose to meet up with some friends and sit around a table of food and gab and laugh ourselves silly. It was wonderful, a great opportunity to catch up with some of those we don’t get to see as often and a nice night for Pete to be with friends he hasn’t seen in a long time. It made us both a little sad on the way back to think about what leaving those friends will feel like.

I sure wish doing the right thing was easy, without heartache and without internal struggle. But we aren’t those people. No no no. We like to overanalyze everything, we talk an issue to death, resuscitate it and give it another go. In our hearts we know that this move is the right choice, God just opened up too many doors and kick-started us when we’d balk for us not to know that. It still hurts my heart to think of leaving behind the awesome friends we’ve made, this family we’ve become part of.

Today was a nice and easy day. We started out at the mall where I had to restructure our cell phone plans, getting new ones, transferring service to a new carrier, reassuring my mother in law (who’s part of our family plan) that it’s really not THAT big a change. I got my workout today prying Peter off the display counter where the siren call of shiny new electronics were proving too strong for any mortal man. The sales guy was nice enough not to feed the savage beast inside Peter that requires a regular sacrifice of gadgets and stuff with LCD screens and buttons. We managed to get away from the kiosk with just barely more than our initial intent….which, for us was an accomplishment on par with climbing Mt. Everest.

The girls asked for one quick jaunt into Claire’s. So we left Pete and Nathaniel on their way to the bookstore. At one farthest end of the mall. Just minutes later I get a text message from Pete…they’re at Radio Shack, which is the polar opposite end of the bookstore…and they’re on the hunt for a Wii. Remember that savage electrical beast I was telling you about??

We got out of the mall with a couple obnoxious eye shadows for Rachael, a princess game for Peyton, a book for Nathaniel and the new phones….and nothing else!! It is a landmark day in the Mayhew house.

I do have to share that my sweet friends from the CCC were so sympathetic about my truck door handle issue. In fact, they were so wonderfully compassionate that they managed to not spit in my face while laughing themselves into hysterics….that’s love. It’s only really bad when put in the full context that the truck has a driver’s side door handle that’s broken, a passenger side window that won’t open unless you break a finger pushing on the button, and the radio speakers only work in the front. There are three rows of seats, and they can’t hear the music from the back so it’s blaring like a ghetto-mobile.

Tomorrow is a sad day as Peter will be heading back to his apartment in AL. He’ll be back in March for the PCF Fashion Funds the Cure fashion show that Peyton’s going to be in. But it’s a long three weeks until then and our kids will be devastated when he walks out the door tomorrow.

Oh, poor Peyton. Being at school has brought on some new issues for her, nothing serious, but I hear them in the things she says. I had gotten her the cutest little denim jumpsuit, with little pink bows on the sleeves and a belt of pink ribbon. Cute as a button and it looked adorable on her. She walked out of the room and came back in with the saddest look on her face.

“I look like a boy.”

She didn’t, she looked so girly it was ridiculous to think she looked boyish. But to her, someone had told her she looked like a boy and she thought her outfit just sealed the deal. I’m a little heartbroken that the things that the kids say to her, not meaning anything or even trying to be mean, are affecting the way she sees herself at 4 years old. But it must be hard to be in an environment where all the girls have long hair and she has her short pixie cut, especially when she’s spent the last year and half buffered by little girlfriends who look just like her. Now, she really does stand out and she’s noticing it.

So, we changed that outfit. She put on her white dress with bright pink polka dot straps, a bright pink bow clipped in her hair and sparkly shoes. She left the house feeling confident in her girliness and I think we all need days like that.

f.r.o.G.
–Anissa

The scene is Perkins, the girls and I are sitting in a booth, waiting for Nathaniel to come back from the bathroom so we can leave. I throw an idea out there for consideration:

“What do you say that we just leave now before Nathaniel comes back and see what happens?”

“No!! He’ll be scared and lonely.” <– from Peyton

“You think so? I mean, he could just live here and he’d have all the food he can eat.”

“No!! I will miss him if we leave him.” <– from Peyton

“But if we sneak out right now you can both have your own rooms.”

“NO! I…” <– from Peyton

“Really?” <– from Rachael

That’s sisterly love for you. She’ll throw you under the bus for 100 sq feet of prime Rachael-land real estate.

I had been asked to go to USF to speak as a parent of a child treated at All Children’s Hospital. Thankfully, they never ask me to speak on things I don’t know, like nuclear physics or the mating rituals of Amazonian waterbugs. But talk about how awesome our hospital is?? This I can do.

There is a large group of USF students that are participating in “Dance Marathon”, which is a college campus fundraiser across the country that benefits Miracle Network Hospitals, which includes ACH. The kids are building teams, they’re fundraising and working to raise awareness and then in March they are having an all night dance party. It’s going to be fun and tiring and I know I’m too old for it, but I’ll be there anyways!

Tonight was a pep rally or motivational meeting set up to give the students involved a chance to get to know a couple of the kids treated at ACH and for the families to share how ACH has impacted their lives. I blathered on for a few about the hospital and gave my best effort…but it was totally overshadowed by my kids and their dancing mania.

Every time music would come on, Nathaniel would just break out in a full get down mode. I wish I had taken the camera so that I could show you video of him just getting funky. The girls danced too, Peyton’s sweet friend Allie Blain from the clinic and her family were there to speak as well and the girls enjoyed some booty shaking fun.

But Nathaniel. What he lacks in coordination and actual rhythm, he makes up for in enthusiasm and willingness to just enjoy the moment. He did the robot, the sprinkler, the lawn mower, some new epileptic chicken dance he made up, he did some hardcore mime work and of course, he tried to breakdance. He was a huge hit with the students and he won a small contest, none else could compare. I can honestly tell you that he gets his love of music and dancing from me….he gets his inability to stay on beat if his life depended on it from Pete. Which may or not actually be true because I’ve never seen my husband dance to anything that might require breaking into a sweat. For all I know my husband could be a Rockette, but he’s never let me see it.

Speaking of the non-dancing love of my life, he is set to return home sometime early Thursday morning. He’s on the road right now and we are excited to have him back. It’s the best Valentine’s Day gift I could ask for.

Please keep all the brave and courageous kids in your prayers tonight, but especially Mathew, Justin, Presley, Sierra, Zack, Justen, Kaylie, and too many more to mention, but never too many for God to watch over.

f.r.o.G.
–Anissa

The Holy Grail….Loch Ness Monster….The Fountain of Youth…..Black clothing for children in the spring…..what do these things all have in common??

The search for all of the above can become an obsession that will not only drive you mad, but also take your entire lifetime!

As Peyton and I had a very special photo session coming up, I was sent on a furious mission to the mall. Goal : find a black shirt with long sleeves among a tidal wave of Valentines/Easter/Springtime frivolity. Peyton doesn’t own a lot of black and what she has is generally covered in some sort of colorful burst of girliness…hearts, animals, sparkly goodness. While I realized that trying to find a plain black shirt off-season was going to be hard, I hadn’t prepared for it to become an effort of futility matched only by teaching squirrels to knit.

I think it actually offended some of the salespeople that I would dress my child in something black when tis the season to PASTEL. Hey, if I want to put my kid in black, paint skulls and crossbones on her forehead and teach her all the words to AC/DC songs, it’s my business!

I did finally find a little jacket with a cute collar and big buttons that worked, it was the last one on the seasonal clearance rack in the LAST of 9 stores. I grabbed it with shameless desperation. I am triumphant!! I ROCK!! I can now leave the mall!!!

16 minutes. That’s how long she wore the shirt today during the photo shoot…and I have a feeling that all you’re going to end up seeing is about ½ an inch of it. I could have draped her in a tablecloth and been fine.

On to the newest issue.

When I got into the truck, I noticed that the door stuck a bit and a little bit of jiggling it was required to open the door. No biggie. Until I got home for the last time of the night, yanked on the handle to get out and the handle jerked free and into my hand. Right into my hand! I now have to roll down my window, open my door and let myself out, or wait on one of the kids to walk around and open the door for me. Peter is so very sympathetic to this new hitch, “You’ll have to Dukes of Hazzard it, hon.”

Really? I drive a Suburban…I’m 5’ 4”….picture me taking a running start and trying to leap, feet first, into the driver’s side window. I can only imagine the hospital bills that will accumulate from the multiple fractures and concussions THAT’LL lead to.

I’ll be sure to post photos. If I tell the police that it’s Peter’s fault that I’m all bruised up and missing an eye will they consider it domestic abuse?

The kids and I are off tonight to enjoy some time at Brad Richard’s suite…take THAT, Pete, for mocking my door-handle-pain!

f.r.o.G….fully relying on God
–Anissa

I know in some parallel dimension the weekend is meant to be a time of rest and relaxation. And if I ever find that dimension I’m going to hang a hammock and take a nap.

But in OUR dimension, the weekend is a time to frantically run around and try to catch up with the things we didn’t get done through the week.

Friday I spent the better part of the day at the hospital visiting with friends and just trying to be a good distraction from the boredom of being stuck inpatient. I went up in the early afternoon and then had to go do the kid switch off. Nathaniel was in St. Augustine with Grandma, Rachael had plans to go out with her big buddy Lilly and I had to pick up Peyton for a visit with our sweet little buddy Presley.

We headed back to the hospital and spent the evening with the kids playing, the adults catching up and turning the night into an impromptu group support night. And it’s just awesome that we can do that. Lilly dropped Rachael off to me at the hospital and we got home from rocking the oncology floor at around 9:30.

Saturday we started our day off with a fundraiser for a little boy from the CCC, then we zoomed across town to throw down at a birthday party for our friend Hailey from the CCC. See a theme there? But we had a lot of fun at both and the kids enjoyed a lot of bouncing and face painting.

We headed home so Peyton could nap in preparation to head over to my friend Kim’s house. Kim and her daughter Lily took on babysitting duty so that I could meet up with Penny Hawkins (Nikki’s mom) and head to a dinner party. The Pridemore family opened up their gorgeous house (AMAZING, GORGEOUS house!) so that a few of the cancer families in the area could get together and have a few drinks and some good food. It was so much fun, we just sat around their fantastic pool and enjoyed each other’s company, and it was great company to be enjoyed.

Gosh, I guess to the average person, the idea of a bunch of cancer parents getting together for a hang-out session sounds pretty depressing. It’s not, we have so much fun together, probably because no one else gets us quite the way we do. We have slightly warped senses of humor, we can talk about things that would make most people crawl under the nearest table and hide and there’s really nothing better than being with a group of people that you can say anything you need to say and you know they’re not going to cringe from it. Thank you so much to the Pridemores for hosting such a wonderful night, thank you to Lori and Leo for getting the ball rolling and to the Arringtons, the Wirths and a special shout-out to Penny for being my date for the night.

Today we slept in late, the kids were all up super late at Kim’s house, and we spent the day just cleaning up the house, getting ready to start our week. Pete comes home this week, and I’m looking so forward to having my favorite valentine (sorry, Penny, Pete is still my BEST date, but you rank way up there!) home, and the kids are already counting down the hours.

f.r.o.G…fully relying on God
—Anissa