Hope4Peyton

So, here we are at the condo…spending our quality together time…having a nice, low-key blast. And I haven’t shot a single picture. ME! No pictures. I’m sure it would be 1000 pictures of “here’s Peyton in the pool” and “here’s Nathaniel getting in the pool” and here’s Rachael walking to the pool”…I think you get the gist of what our week has been.

We are lucky enough to have a condo that has the pool directly outside the door. We’ve been enjoying it to the max. The kids are loving it, Peyton is starting to brave the water without her normal floatie swimsuit and we’ve made an overall nuisance of ourselves being loud and playful. We spend our moments not in the pool just lounging around and indulging in utter laziness….it’s awesome. I am so excited for the weekend, when some of the moms are coming down to hang out and just relax with me.

Today I took the kids to the Children’s Cancer Center for Lil Tales and it was a little sad because for many of the kids, and our student age volunteers, it’ll be their last Tuesday for a very long time with school starting up next week.

In the time that I got to share with the other moms we had some rockin’ laughs, but also got some very disheartening news about some of the kids.

One is Delaney Potterbaum, a little girl diagnosed with a low-grade Optic Glioma, which simply put is a tumor on her optic nerve. She had been responding favorably to treatment, had undergone a state-of-the-art proton radiation treatment in Jacksonville and had been doing so very well. Kara (her mom) shared that suddenly there were signs that Delaney was different, and then an MRI scan showed that her tumor had grown considerably. This was such a shock because the family had been told that her type of tumor and the low-grade status meant that (and I use these words lightly) Delaney would do well with the treatment plan and they wouldn’t have a lot of worries about growth. The 4 cm growth, it doesn’t sound like much but that’s major when we’re talking about tumors in the brain, has already started affecting her coordination and her balance and we could see a big difference in her just from a few weeks ago. Delaney’s new treatment plan involves some new chemotherapy, I don’t know if she’ll be getting radiation again because Kara explained that a person can only get so much radiation in their lifetime and Delaney may be maxed out.

Delaney gets treatment at our hospital, with the same oncology group as Peyton, and they are just getting a new brain tumor specialist to join the team tomorrow. I hope this doctor is able to guide the Potterbaums as they deal with this tumor’s growth and aggressiveness.

As we talked today about the start of school and all the fuss and bother of getting supplies and getting the kids out the door on Monday, we were given a true reality check. Hannah Deal, she’s the little one with a Diffuse Pontine Glioma (a tumor around and in her brain stem) is getting worse and worse with each day. Her tumor is growing daily. Hannah’s mom Lisa told us that Hannah wants so badly to go to school with other kids her age, to do this thing that is so normal and regular…and she can’t. Because of the growth of the tumor, she has double vision and she falls a lot, so it is a real danger situation to her. This little one was so looking forward to going to Big Girl school and now it is taken away from her. As her family fights for the strength to continue battling, never giving up and never ceasing their prayers for Hannah’s miracle, my heart just breaks for these children who have so much stolen from them. Hannah is too young to understand the many things that are being taken from her by cancer: years of life, driving a car, to kiss a boy, to dance at her prom, to have a family of her own, to see her own children playing around her.

I can get so angry at what this disease does to people, women, men, children alike. But we never stop searching for a cure, it just makes the resolve to find the answers that much stronger. I hope that by getting involved and dedicating my love and determination to this cause, I can help in some small, or LARGE, way to helping these kids have a fighting chance. Please keep our efforts with the Pediatric Cancer Foundation for the Cure Kids Cancer Challenge in your prayers. I thank all those who’ve sponsored us for this event, but the Mighty Mighty Mayhews have a long way to go in meeting our goal.

The Mighty Mighty Mayhew walking team!

I have so much admiration for the parents of all these kids, those who seem to handle it all so well, and those who fall apart at the slightest thing. We’re doing the best we can, we make it through each day with faith and prayer in our hearts and we give 150% to our kids so that they don’t have to understand the true depths of the pain we feel at watching what they go through.

I’ve had the chance to meet and get to know Sydney Sims over the past few months. Her family is just amazing! Let me tell you what they’re doing. Sydney has a very aggressive form of Neuroblastoma, she’s relapsed twice. Her body rejects the most effective form of treatment for kids like her. A new treatment has been offered up as a chance, a chance that would raise her odds from 20% to 60%….that’s from 20% to 60% that she’ll LIVE. Now, if that was your child, what would you do for that extra 40% chance? To get this this drug manufactured will take 3-5 million dollars! Would you let a measly 3 million dollars stand between your child and a treatment that could save her life? I think not!

Sydney’s dad, Kevin Sims, is gathering with other Neuroblastoma dads from across the world to band together and fight for this treatment. In September, they are taking the Lonliest Road. They will be biking from California to Washington D.C. as a way to raise awareness, raise money for this treatment, to give their kids a fighting chance, and to give hope to all the kids out there. How PHENOMENAL is that? THAT is the meaning of being a parent. Please keep this group in your prayers, check out the website they’ve set up at www.loneliestroad.org. Support them in any way you can, if it’s a donation, if it’s an email of prayer and support, if it’s connecting them with someone who you think would be interested in sponsoring their efforts….just take a minute and do it. If you’re thinking, I can’t afford it….if it was your child, wouldn’t each and every precious dollar count?

Wow, I have spent all this time and web space posting about other people’s kids….I am just thankful that Peyton’s needs are simple, that’s she’s doing well with her treatment, that we have her here to love and hold and snuggle. We praise a wonderful and powerful God for the blessings He brings and the wisdom He shows.

f.r.o.G…fully relying on God
–Anissa

“I am a pirate! A pirate with a cell phone!”

How exactly a dress on her head and a flashlight at her ear makes her a pirate, I’m not sure. She actually has a play eye patch and little toy cell phones…so this was sheer imagination at work. She walked around with that dress on her head yelling “ARRRRGGGGHH!!” at the dog. I give complete credit to the dog for not even bothering to open her eyes. I wish I had an imagination like that….I’d put a copy of Vogue on my head, duct tape a DVD of Oceans 11 to my chest and tell strangers “I’m a supermodel and I date George Clooney!”

The weekend is rolling by. I was supposed to pack up the kids for a joyous reunion with Pete in Madeira Beach today. However, at about 1 o’clock yesterday I remembered I was supposed to drop the dog off at the kennel at 11 AM….and there she sat at my feet, not at the kennel. As the vets office is closed on Sunday, we’ll be dropping her off and driving down to meet him tomorrow instead.

Word is that Pete and Doug have been having a ball down at the condo. I wasn’t all that worried about them being able to find amusing exploits and they haven’t failed me. They shared with me that they spent one evening having beers while watching a band that wore spandex outfits and 80’s rocker wigs. Pete said they were pretty decent, I am amazed that he was able to even pay attention to the fact that they were singing.

The kids and I have been hanging pretty much as we always would. We went to breakfast at Cracker Barrel yesterday and while chatting with Agnes at the checkout, I shared that we just went on Peyton’s wish trip. The woman standing next to me almost came out of her skin. I’m not exactly sure what publication she writes for, I’m not entirely positive what she’s writing about, but she was VERY pumped up about writing something for someone about Peyton and her wish trip. She spoke very fast, and for me to say that about someone else, that was pretty darn speedy speaking! I have no idea what or who it was all about, but it should be interesting if she actually contacts me for a Peyton-view (yes, I’m making up my own words again…short for Peyton interview).

Peyton’s head finally quit peeling, most of the skin came off in her bath last night…

This picture is pre-bath

Rachael almost broke her ankle trying to super-hero-leap from the water when she realized that there were bits of Peyton’s dried up, crusty scalp floating around with her. “That was the grossest thing ever, mom! That’s worse than when she sneezed snot in my face.” I personally think that’s a pretty tight toss up on the gross factor, but she made the call. Under all the crustiness was a perfectly smooth and downy soft skin, the kind that I will never again experience personally and would consider radiation treatment if I thought it would produce that kind of result without all the yucky side effects.

Just seconds before her non-human leap from the tub!

My parents’ VCR blinked 00:00 for years, yet Peyton has figured out how to use the TIVO remote at 3 years old. And how thankful I am, because otherwise, how else could I be beckoned 15 times a day “Mommy, come here! Come here! Come here! Now now now!”, thinking she may have spontaneously burst into flames or a rabid moose has strolled into the living room. Only to find out that the public service announcement for booster seats is on…again….and she wants to make sure I see it…again…know that THAT is the kind of booster seat she wants…again….if I love her at all I will immediately rush out and purchase her that booster seat because otherwise she could fly out of the car at any moment. Yes, as you can see, I’m speeding out at this very second to go get one. I’m glad that the PSA is working on someone though, I would hate to think that they were wasting that money.

f.r.o.G….fully relying on God
–Anissa

Here are the things that I learned this week:

1. Steroids can never be predictable, last month she was an egg-eating, raving lunatic….this month she’s munchy, but pretty mellow.
2. My husband works too much
3. There are few things in this world that hurt as much as stepping on an armed G.I. Joe in the middle of the night, especially when said stepping causes one to slam ones toe into a cabinet, which in turns causes one to then back up and slam ones funny bone into a wall….good times

What a week this has been. I can tell you that the updates have been sporadic because life is full…full of steroids and meetings, last just-before-school-starts playdates, planning for the beach, poker games and avoiding the heat….just full.

The meeting for the Pediatric Cancer Foundation went really well, they are making a lot of progress in planning and as we get closer to the date, there is much to be done. I think it’ll be easier when school starts to get some of these things done, it’s a lot easier to run around when it’s just Peyton and me, than when I have to lug all three highly disgruntled kids around. I sent out over 50 sponsorship packets and emails, with more waiting to go out, in hopes of finding some compassionate businesses who will help fund this event.

I got to go to a baby shower for Heather Duckworth. She’s the mother of the Amazing Jacob, and they are adopting a baby girl from Guatemala named Allie. This is a family of boys…4 of them…so there was so much pink at the baby shower it looked like someone has blown up a Pepto-Bismol factory! It was so sweet and I am so eager to meet this much anticipated baby girl, she’s adorable in her pictures and I know that all babies are eagerly awaited, but this one is going to find a very blessed place to call home.

Peter has headed down to Madeira Beach. Unfortunately, only Doug Powell was able to make it down there due to work schedules, vacations and other obligations, but from the sounds of it they aren’t letting it stop them from having a good time. I hope they enjoy their beach time and I know it’ll be good for both of them to get a break. The kids and I have a packed weekend, we have birthday parties to attend on both Saturday and Sunday, we have to pack and get ready for our week at the beach, while finishing up preparations to start back to school the day after we return…have I mentioned how excited I am for school to start? If not…I am REALLY excited for school to start!!!!

The moms weekend is going to have a better turnout, there’s going to be around 10 other moms squeezing into the condo, and it’s going to be a ton of fun. I’ve never played Bunco, but apparently I’m going to get a crash course.

Tonight was Parent’s Night Out at the Children’s Cancer Center. As Peter was already at the condo, my plan was to just take advantage of the free time to get some things done. After I dropped them off, I went shopping for the birthday gifts needed for the before mentioned parties, browsed the bookstore at my long leisurely pleasure and ate a fantastic dinner that didn’t involve having to run anyone to the potty, cut up anyone else’s food and, here’s the kicker….I got to eat my food while it was HOT!!! It was good. Very good. I missed some of the other parents who all went out to dinner together, and I would have loved to have gone with them, they’re a fun crew.

However, I got done with my stuff early, and I got to spend time with Kay and Dana Bertoch (a Lymphoma survivor), just talking and gabbing and THAT was the best part of my whole night. For people in AA they set you up with a sponsor…someone who’s been there and done that and lived to tell….and whenever I’m with the Bertochs I just feel wrapped up in their strength and love and brightness, my personal cancer sponsors. Kay told me the most remarkable thing about Dana and I think it tells everything that needs to be said about the wonderful spirit she has. In answer to a comment that cancer just takes and takes and takes….Dana said that the families, the other kids, the relationships and friends, that’s what cancer has GIVEN her. I truly love that family.

Peyton’s doing well with this round of chemo, her limp is still there, but it’s not getting any worse. She’s been tired this week, putting herself down for naps and sleeping in later, but her color is ok. Today is her last day of steroids, she’s done well so far….she’s not acting grumpy and she’s eating more, but not linebacker-hungry. Her head is this funky scaly mess right now. It’s kind of gross. It’s a process that she’s gone through twice since radiation. Her skin starts to get really dry, it starts cracking and looks like she has funky old man skin, and then it starts to peel off in sheets. In a few days it’s all gone and she has a bright and shiny head again. It has made the hairs that were starting to sprout up on the top of her head go away, but on the sides and the back of her head she’s growing a very fine spattering of WHITE blond hairs. I can only hope that she keeps the blond hairs…how cute would she be? If she gets any cuter she’ll be hard to look at.

She had so much fun tonight at the CCC. She’s had this ongoing issue for the past couple of months that when she gets there she acts like she’s going in for a root canal. She frowns, refuses to play for a while and acts all moody and morose. It’s all an act. I know it, she knows it and it ticks me off! She’s milking the sympathy cow…if I act like I’m sad and miserable people will trip over themselves trying to make me feel better. She’s 3 and she’s working the system….we are so doomed!

But tonight I called her on it big time and laid down the law that if she didn’t act nice and be normal we would just go home and I would quit taking her….complete bluff, but she’s not old enough to call those just yet….give her another 6 months. When I got back, she was a giggling, laughing, playful maniac! They told me that they hadn’t seen her so animated and playful EVER! Basically, she was being the kid she usually is at home and it was good to see her being the Peyton we know. I hope she figures out that people respond to her when she’s happy and fun better than when she’s being all poor-poor-pitiful me.

Peyton made the paper again. But the story wasn’t really about her, it was about a group called the Cross Riders from our church. They came out to pray with our family a few weeks ago and they just happened to have a reporter with them to document the ride and the group. They gave Peyton a little mention in the St. Pete Times.

Vacation saga – Tuesday – Day 6

Tuesday was our day to go to Buc’s training camp. We knew that we were going to go, but we had no idea what the day would entail. In fact, when we got there, it was so hot and the kids were so bored and restless, Pete and I considered leaving. I had gone with Angela the night before on a mall run and we picked up the most adorable tenny Bucs cheerleader outfits for the girls to wear and they were so adorable, but they could have cared less about the players on the field.

After while, cheerleaders came over and asked if we could follow them…Pete and Doug follow behind NFL cheerleaders? Yeah, I think they can handle it. The cheerleaders carried the girls over in front of the stands and announced that Adelaine and Peyton were the Fans of the Day! What does that mean? I have no idea!

What it meant was that we got moved to rocking seats…shaded seats….offers of food and drinks…and little Bucs helmets that they would have the opportunity to get autographed. Cool! That meant contact with the players…the dads were practically drooling with excitement.

I thought that they’d bring over a player or two to sign the helmets and say hi.

No no no

They took us to the side of the field and plopped us flat in the middle of the walkway where the players come on their way to clean up. It seemed like every player stopped and took a moment to talk to the girls, to sign their helmet and let us take a picture of them. Those Bucs players were so phenomenally kind to us, each hulking guy made a point of getting down on their level and smiling and speaking softly to the girls.

Peyton and Adelaine were both hot, tired and over it all by the end of the day, but we were thrilled with Coach Gruden stopped by and talked to the girls, signed their helmets and let us take the photo album shots. The funniest part of the day for me was when Gruden smiled at Peyton and reached up and took off his visor and placed it on her head….where it promptly fell around her neck….and she turned and glared at him like “Are you kidding me? Did you just stick this sweaty, stinky, visor on ME!?” Yeah, she was impessed.

The girls made the Bucs website, they made several newscasts (the proud papas cane say their baby daughters made the sports sections long before their boys did) and newspapers. We are so appreciative of the kindness the Bucs afforded us, they provided us with a truly spectacular afternoon and it was an unforgettable day for us all.

The Buccaneers Website

The TBOblogs

Snap TBO photos

f.r.o.G…fully relying on God
–Anissa

—Don't Forget!! The Cure Kids Cancer Challenge is September 29th in FishHawk! Sponsor the Mighty Mighty Mayhews!

**Special prayer request
We got word that Rachael's beloved kindergarten teacher Mrs. Wade won't be returning to the school this year. Her husband was just diagnose with a rare form of cancer, I haven't found out an exact diagnosis yet, but please keep the Wade family in your prayers. She is a wonderful woman who just embraced with us all the support and encouragement she could, and she is one of the big reasons that Rachael did so well last year. My prayers are with them for all the strength and faith it will take to get through this together.

We are the Mayhews!
The mighty mghty Mayhews!

Ok…get that song out of your head…

Our team for the Cure Kids Cancer Challenge in September is called "The Mighty Mighty Mayhews" and the following link is our donation page. We are asking everyone who would like to support us with sponsorship in this effort to do so at this page.

Sponsor the Mighty Mighty Mayhews!

Also, if you can help us meet our goal by sending our an email to all those you know it will help us rock the Walk and every bit of the proceeds are going straight to the Pediatric Cancer Foundation.

NEVER giving up!
–Anissa

Monday was Peyton’s chemo day, she goes for Vincristine every other Monday and that was the day she also started her 5 day pulse of steroids…..good times! She’s been definitely feeling the effects of both, complaining that her tummy hurts and she doesn’t feel good. Poor kid, who would?

Today we went down for our Lil Tales fix, got to spend time with our wonderful friends at the Children’s Cancer Center and just gush about the wonderful trip we had some more, as if everyone hasn’t already read about it on the site or heard me gabbing about it. I will shut up about it eventually….but it really was very cool. Ice cream every day!!

Tomorrow I’m going to a meeting for the Cure Kids Cancer Challenge, taking Peyton as the steroid phase can be unpredictable, but leaving the other two with my friend Kim to go to the free movie. Time is passing quickly and this event has so much planning and organizing to do…I have NO idea what my committee is really supposed to do, so that’s got me a little jittery. Hopefully I’ll get the lowdown on that at the meeting.

I’m so excited about all that we’re getting ready to do with the Pediatric Cancer Foundation. We’re going to have a family team walking and I’ll get the link up to our special page for that. I hope that if you’re in the area, you can come and be a part of the event that you will. Its on Sept. 29th and it’s going to be a very special day to really bring pediatric cancers to everyone’s attention.

This weekend is our Madeira Beach condo trip. In case you forgot, we got a weeklong stay at a condo donated to our family at the Fore the Kids golf tournament when the Powells got their new car. We’ve been anticipating this trip and looking forward to time with our friends, because the first weekend the dads are going to have the condo for retreat time, our family will be there during the week to enjoy it and then the moms are all going to come down the last weekend. Did I mention that the mom and dad times are completely sans kids?? SHHWEEEEEET! We love our kids desperately, but we also need our time away.

On that note, the kids start school the Monday after we get back from Madeira Beach and I am really looking forward to that. I love the freedom of summer, but it always makes me appreciate the moment they walk away from me and are at school for the day. Rachael is full on ready to go back, she misses her friends and loves school…Nathaniel misses his friends but not so much on the workload that 4th grade promises. He’s such a smart kid, I have no doubt that he’ll do find, but he’s also come by his procrastinating genes honestly and I know we’ll struggle with getting everything done.

It’s going to be nice to get back into the schedule, and I think the kids will all enjoy the separation from each other…its been a long summer for us all.

Here’s the vacation blurb from Monday….it was a slow day and sometimes those are the best.

GKTW Slideshow! Just click HERE

This was a laze around GKTW day. After breakfast we took the kids to the corral where they have horses and a pony for the kids to enjoy. Just before breakfast, GKTW sets up special character visits to the village for the families and we got to go have meet and greet with Mickey and Minnie, Mary Poppins, Pluto and Goofy. Peyton was dressed up in her Snow White costume for her photo op and was just cute as a button. So, when we hit the horseback riding, she was still in her Snow White gear and that was about the most adorable thing ever…watching Peyton riding around with her daddy in a death grip in her blue and gold dress. Rachael rode the smaller pony as well and although she wasn’t thrilled about it at first, she loved it after it was done. Nathaniel went straight for the big horses and was all ready to head to the rodeo on a professional basis after.

Horseback riding was followed by a long and playful time in the pool with the Powells and our friends the Houtzs. Annike brought her son Liem (also an ALL patient at All Childrens and a former GKTW visitor) and little girl Maya, as well as some cousins for a “Welcome Back” visit. That’s another awesome thing about living close to GKTW, we are welcome to go back at any time and just pop in for the day….swim, eat, play and have all the fun we can, but we can’t spend the night.

We’re already planning our return trips and to sneak as many friends in with us as we can.

f.r.o.G..fully relying on God
–Anissa