Hope4Peyton

Today was our "Celebration of Life" with the [url=http://www.childrensdreamfund.org]Children's Dream Fund[/url]. It was a lot more than I'd had pictured in my mind. We met up with reps from the CDF and the [url=http://www.hope4adelaine.org]Powell family[/url] at 3 at a Chick-Fil-A in St. Pete, and the fun was just non-stop. We ate some food and Sandy from the CDF told us details about our trip. Let's just say that we were looking forward to our trip before the party….Peter and I are now worse than the kids with the 9 day countdown!

It is such a huge wish to have granted, to say we want to go to Disney could be so simple and they take that wish and just amplify it so greatly that it becomes this once-in-a-lifetime memory. With our stay at [url=http://www.gktw.org/]Give Kids the World[/url], meals are provided, there is so much to do…horseback riding, golfing, fishing, swimming, games, ice cream and pizza all day long, the options are just unlimited….we've talked to some families who said they went to go to the amusement parks but ended up spending the most of their time at GKTW because of how fun that was in itself! We get a nice little two bedroom/two bath villa that's all our own for the week, we get tickets to all the Orlando parks that are still good for time after our GKTW stay (just in case we don't make it to all the parks during our allotted week) and they gave us money to cover gas, in-park food and fun and that last minute jaunt to Vegas!!…ok, not that last part, but for real on the rest of it. Sweet! We get to look forward to spending our days in the parks with advance passes to the head of the lines with the junior princesses, big time fun for the siblings and hopefully some fun in the quiet moments for the parents.

As I was sitting with the Powells and I was deep in conversation with Angela, Pete and Doug were having their own gabfest and the kids were all playing like hoodlums behind a three inch sheet of glass, I realized that I couldn't think of better people to take this trip with! Speaking of the hoodlums, a mad moment happened right in the middle of the "Celebration of Life"…I call it "The 6-pack Goes Smack Down on Some Strange Kid". All the adults are talking excitedly about the upcoming trip and all of a sudden we realize that there's some crazy whirling dervish of kid taking cheap swings at Nathaniel and Mason in the play area. He just bounced from boy to boy, little arms flailing wildly and Nathaniel and Mason were batting him back and forth between the two of them with these totally "ok, now what do we do?" expressions on their faces. About the time I saw Nathaniel plant his feet and bring his hands up, I realized that if I didn't get that kid out of there NOW he was about to be shown what 3 years of taekwondo can do to someone 4 inches shorter and a good 20 pounds lighter. Luckily, we put a stop to it, Mom of the crazed kid realized what was happening (I really did feel so bad for her because I know what it's like to have the kid that gets in a fight, is the "biter", or the crier) and swept him out and as far away from the "cancer group" as she could. How awful for her to realize that her kid tried to get WWF on the Make a Wish kids.

Only the parents of the cancer kids who take Mercaptopurine will get this humor, but today I was thinking of all our kids together, which Angela Powell nicknames the "6 pack", I kept thinking of them as the 6 Mayhew-Powells, or the 6MP! Anyways.

Sandy from the Children's Dream Fund came armed today with gift baskets and bags for the girls and the most beautiful, and tasty, Disney Princess cake. Nathaniel was a little appalled at having to eat pink roses on his cake, but he suffered and devoured it anyway. Fox13 news ditched us in search of better news, but Channel 8 news was there to take some video of the girls, that we totally missed because we didn't get home in time to watch it. I'm sure they were adorable and put on a good show, how could they do anything but?

When we got home and the girls tore into the gift baskets they were ecstatic to find t-shirts and hats, books and videos, a little miniature tea set, and a fairy princess outfit. Peyton wasted no time donning the fluffy headgear, the swirly skirt and the bright pink wings and letting me know that "I'm too little right now, but when I grow big I can fly to the sky like real butterflies." That was too much cuteness! They promptly sat down and had a Gatorade party with their tea set, even Dad and Nathaniel got down on the floor and had some "tea" with them.

Peyton and Adelaine were in their glory today, both full of smiles and laughter. It was so awesome to see their friendship and love of each other, they are amazing. Adelaine is looking so wonderful with her thick hair coming in and Peyton is quite a bit shorter, paler and less healthy-looking than her, but they just glow when they're together.

There's a little girl named [url=http://www.caringbridge.org/visit/skylarjademaxson]Skylar-Jade Maxson[/url] who is fighting valiantly for every moment she has here on earth. She is currently running a high fever, has long periods of apnea and her lungs are filling with fluid. We just pray for her and for her family as they are with Hospice right now. I don't know if this will be the time that God chooses to take her home and end her struggle here, but we just pray that He works a mighty miracle for Skylar.

f.r.o.G…fully relying on God
–Anissa

ps..Gina Bracken is a sweet lady who found Peyton's bio on the Leukemia and Lymphoma Society website and she is participating in the Nike Marathon in Peyton's honor. That's so phenomenal and I am just touched by her dedication and compassion. She does not have a sick child, this is just where her heart has led her to reach out for others! [url=http://www.active.com/donate/tntscfl/tntscflGBracke]http://www.active.com/donate/tntscfl/tntscflGBracke[/url] This is the website for her fundraising page, give a few dollars to support her in this run for Peyton and all her fellow warriors

Counts were good today!

ANC was 4300 (that’s better than its been since the LAST time she was on steroids)
HBG was 8.8 (that wasn’t so hot, but not horrible)
Plts were 250K+(that’s rocking!)

She only got a finger poke since her red blood count stayed steady and she won’t need blood. Because we are now in maintenance, so much of the schedule is administered at home now. Yesterday was her last steroid pill for at 3 more weeks, but today was her weekly dose of Methotrexate….once every 12 weeks she gets it via spinal tap, otherwise she takes it orally once a week…..5 pills of it! So, tonight was fun…5 pills of Methotrexate, 1 pill of 6MP, and her Lactulose (stool softener). Because of the steroids, she’s been grumpy, irritable, hungry (but really unable to eat as much as she’d like because of boo boo tummy) and thirsty. The unquenchable thirst is a new development, but apparently the mass amounts of chemo have activated a latent camel gene. These days she’s been going through a 2 liter bottle of gatorade a day, she’s constantly complaining she’s still thirsty and for a child who refuses to give up her pull-ups, I might as well be lining her pants with dollar bills! Tonight she started complaining that her back hurts, hopefully this is just a one time thing, but I hear a lot of parents saying that their kids on maintenance have a constant complaint of body aches and pains.

Tomorrow is our “Celebration of Life” with the Powell family and the Children’s Dream Fund. This is where we have a little party, hosted by Chick-Fil-A, in our case, and they present the girls with the fulfillment of their wish. This means that for the next 10 days I get to listen to the “Is it time for us to go to Disney World” chorus from my kids…..and Pete. Fox 13 news is planning to be there for the celebration part to do a little bit on Adelaine and Peyton and the friendship of our families that led us to ask for our trip to be together. I can’t say enough how much their friendship and the relationships we’ve built with the other amazing families we’ve met along the way have helped us get through all of this. We are so thankful that we live in an area that has so many fantastic pediatric cancer resources, it has been invaluable to us as a family to feel encouraged and supported and to build this network of friends.

Nathaniel and Rachael both enjoyed their first day of chess camp. It’s something that I think really appeals to both of their brilliant, planning, scheming little minds!

Please keep Peyton in prayers as her body works to adjust to all the medications and their various side effects. It’s so hard to watch the constant yo-yo of both physical and emotional effects on her. She’s an amazing little fighter and we are counting the days to the end of treatment….only 24 more months to go!

f.r.o.G…fully relying on God
—Anissa

When your child gets cancer it hits you so tremendously and I know for me it was accompanied with this complete sense of helplessness….what could I do for my child?….nothing….I can't make it go away, I can't make this one better with a kiss and a treat, I can do nothing. Then you start meeting these families and all these amazing children, and you learn the sheer staggering scope of pediatric cancer and you start hearing the numbers of children that are dying, and the children dying start being the ones that you know. And then for me, and many of those I've had the honor to get to know, the question became "Why can't I do anything? Why isn't someone else doing anything? Why are our children being stranded by the government, the pharmaceutical companies, the researchers?" And again, the sense of helplessness threatens to overwhelm.

I worked at finding current statistics on pediatric cancers and they are so hard find. But according to the American Cancer Society there are over 14,000 new cases yearly and an estimate 2500 deaths. According the the National Cancer Institute, a child has a 1 in 240 chance in being diagnosed with cancer by age 20 and there have been tens of thousands of different kinds of cancer diagnosed in children in the past 20 years. Because a disease is considered rare if it occurs in less than 200,000 people annually pediatric cancer falls in that bracket.

Rare. It sure doesn't feel rare to the family watching their child suffer through chemo and radiation treatment, it doesn't feel rare to the child who has poison pumped into their body on a regular basis and it sure doesn't feel rare to a family who has to put their child in a grave because the best there is isn't good enough. Rare sounds great if you're talking about antique plates or a first edition book, but in the world of pediatric cancer, rare means death. Because of the perceived rarity of pediatric cancer doors get shut in the face of pediatric cancer, money doesn't get filtered into finding cures and new treatments the way it does for the "big name" cancers, and our kids don't get pretty ribbons raising awareness of the disease on everything from pantyhose to yougurt.

Friday I went to a meeting with the [url=http://www.fastercure.org]Pediatric Cancer Foundation[/url], a group whose sole mission is to fund research to find cures. Cures to the cancers, no matter how rare, that are killing our kids. I've heard the comment "80% cure rate! That's a major increase in survivorship in pediatric cancer." Yes, it is, that's awesome! So, I want you to mentally picture 10 kids you know….you children, your friends' kids, your neices and nephews….and pick the two that you are willing to let die. Which two are we willing to sacrifice? Because if we stand back and let nothing be done, make no effort to improve the situation, we ARE sacrificing those children.

The [url=http://www.fastercure.org]PCF[/url] is organizing the parents to be the voice that is heard. It's amazing to see the money raised and the work done in the name of breast cancer, colon cancer, prostate cancer because the people who are diagnosed can stand up and be heard. But kids? Who listens to kids? How can we teach them to make their voices loud enough to be noticed when a lot of these kids aren't old enough to say their ABC's yet? That's our job! So, it was so exciting to be in a group where the plan is to make an impact, to reach out and not let the public go unaware. Do you know of a person who hasn't heard of breast cancer? Now, how many have heard of a Wilms Tumor….or Ewings Sarcoma…or Rhabdomyosarcoma? The end goal is to bring the general awareness level to a point where we can't be ignored, our children can't be overlooked any longer.

Locally there is going to be a 5k/1m walk-run event in Fishhawk Ranch Town Square on September 29th. It's an event to raise awareness, to celebrate the courage of the families battling pediatric cancer and to raise money for more research. I've signed up as a chair a committee for this event and if anyone that comes to Peyton's site is interested in being a part of this day, of helping to ensure that there is a future of hope for these kids, please contact the PCF and volunteer or let me know if you'd like to be a committee member (my committee would be great!)

The other big thing we talked about at the [url=http://www.fastercure.org]PCF[/url] meeting was that September is National Childhood Cancer Awareness month. I never knew there was one. Bet you didn't either. That tells you exactly how much media coverage, celebrity endorsement, and government involvement there is in making sure that the NATION is AWARE. Zilch, zero, nada. Our goal is to change all of that.

The One Voice project is what it's called. It's about taking all the individual voices of mothers, fathers, family members, friends and uniting them into a loud resonating voice that says "Hey! We're here and since the cancer isn't going away, neither are we!" It's about organizing the people who want to make a difference so that we can. I, as one person, one voice, can't get much done…..but if the thousands and thousands of people who's lives have been touched by pediatric cancer get involved, we can move mountains! Better yet, we can cure cancer. I know I want THAT t-shirt…I want to wear one that says "I helped cure childhood cancer". The One Voice project has a mission to bring all the people together in a united stand-up to the media, our community, our government and start making pediatric cancers as well known as breast cancer and lung cancer so that people care….so that it doesn't have to be a child of your heart that is struck before you want to do something. So little of the billions of dollars that is granted to the big names like the National Cancer Institute and the American Cancer Society is filtered into the field of pediatric cancer.

In the next weeks, the [url=http://www.fastercure.org]Pediatric Cancer Foundation[/url] is going to be getting this One Voice project up and moving and I will encourage each and every one of you to get involved, whether it's becoming an advocate, writing letters, just staying up to date so that you can share awareness with those around you. It's all vital to making One Voice heard and acknowledged.

Ok. Soapbox put away….rant over.

14 moms from the[url=http://www.childrenscancercenter.org] Children's Cancer Center[/url] got to go out Friday night! And….and….well, we have a rule that, much like Vegas, what happens at the CCC, stays at the CCC. It was fun and much-needed for all of us. Thank you so much to Mary Ann Massolio from the CCC who made the night possible and for encouraging us to go.

I suppose that since it IS Peyton's site, I should update about her now. With a nice big wallop of chemo on Wednesday and the new home schedule of chemo every night and 4 days of steroids under her belt, she could definitely be better. Friday night she didn't sleep at all, she was restless when she did try to sleep and for much of the night she was just up and around the house. She's very pale with the big dark circles under her eyes. She goes to the clinic on Monday for counts and I'd be very surprised if she didn't need some red blood because her lips are pretty colorless and she just looks and acts drained. I suppose it's still radiation effects coming into play with the chemo. My poor baby. She's grumpy, a little more hungry than usual…which means she finally eats like a healthy child would… but not quite to ravenous beast level yet. For some reason when I look at her today, she looks like she's going backwards in treatment….like she should look healthier….but she actually looks worse. Part of that is because she's lost the weight from her last long steroid round and she just doesn't look as healthy when she's all skinny and pale….my ultimate goal — to be told I'm too skinny!

Nathaniel and Rachael start 3 days of chess camp next week. On Tuesday we meet with the Powell family and with Sandy Hardin from the [url=http://www.childrensdreamfund.org]Children's Dream Fund[/url] for the Celebration of Life get together where they present Peyton and Adelaine with their formal wish approval. Fox 13 is also planning to come out and be a part of the event because they found it to be a special story, how our families have become such wonderful friends and that we requested to take our Dream Wish trip together. I'm excited about the Celebration of Life as well as the upcoming trip to [url=http://www.gktw.org/]Give Kids the World[/url].

f.r.o.G…fully relying on God
–Anissa

"We Will Rock You" from the song stylings of Nathaniel Mayhew

Buddy, you're a boy make a big noise
Playing in the street gonna be a big man some day
You got mud on your face
You big disgrace
Kicking your CAT all over the place

Kicking your CAT….because apparently the dog was too big to kick all over the place….I can only hope that animal control doesn't hear about his lyrical menace.

We had another incredibly busy day…I keep thinking that eventually things are going to calm down…but then I realize that by then the kids will go back to school and it all just starts over again. We're right about the 6 week mark til school starts back up, and I have yet to get the kids to the pediatrician for their checkups and it scares me a little bit to see shelves of supplies already.

Tomorrow I'm leaving the kids with Pete's mom so that I can go to a very important meeting with the crew from the Pediatric Cancer Foundation. They are organizing two very important events, Childhood Cancer Awareness Month (September) and how as cancer parents we can get involved and make a difference in raising both awareness and funds for research….and the first annual Cure Kids Cancer Challenge, a 5K and 1M course for families with a post-challenge party…this is an event that will be a tribute to the amazing families in our community who have battled pediatric cancers. I'm not entirely sure where I'm going to fall in all of this, but I'm eager to get involved and find a way to make a difference. While these are events to promote pediatric cancer awareness, I know that there is going to be a HUGE need for volunteers that will go beyond the scope of just the families, if anyone is interested in getting involved in some way, please let me know and I'll get you in touch with the right people. I know that a lot of kids in jr high and high school need volunteer hours for school and these would be fantastic ways to get those hours and to let them make a difference in huge way, plus I guarantee it will touch their hearts in a special way.

Tomorrow night a bunch of the moms from the Children's Cancer Center are going out!! We are ditching the kids and heading out for a night of dinner and bowling at Channelside. We are so in need of this and seriously excited to going!

Tonight we got to enjoy seeing Sydney Sims and her family at their fundraising event. Sydney looked tired but happy to be home and back with her friends and family after 5 weeks in NY. I saw her shortly before she left for her trip to NY for treatment and she had a full head of blond curls and tonight they were all gone, but she was still just gorgeous. They had a great crowd turnout, the food was good, the music was a lot of fun and it's always good to get to spend time with friends. The kids had a blast playing in the church playground and getting their faces painted….it was about 1000 degrees so the paint lasted all of about 15 minutes, Peyton was a tiger, Rachael was Hello Kitty, and Nathaniel had snakes on his face. The Brandon Foundation did a great job of putting on a wonderful night for this family and we pray that they raised enough money to help the Sims family pay for the newest treatment that Sydney needs.

Getting ready for her bath Peyton and I had a talk about all the people who tried to talk to her tonight.

"Those boys and girls were trying to make me smile tonight."

"Yeah, they were being really nice to you and you were being kind of mean."

"I AM mean."

"No you're not."

"I AM too!"

"You shouldn't be mean to people who are being nice to you."

"They make me stinky."

I don't know how to argue with logic like that.

f.r.o.G…fully relying on God
–Anissa

[url=http://www.caringbridge.org/visit/avafrench]Ava French[/url] was a year old when she went home to the Lord on the 10th. She was diagnosed with ALL leukemia in October and relapsed in May. Please keep this family in prayer as they now cope with the grief and the loss of their beautiful baby girl.

Please never pass up an opportunity to hug and kiss your kids and tell them that you love them…each day is precious and a gift from God.

f.r.o.G…fully relying on God
—Anissa