Hope4Peyton

After having a great week on the potty-training front, Peyton came to me this afternoon with a backpack on and asked me if she could go to school now. She’s decided that since she’s using the potty, she is ready to hit the books.

She’s stayed very healthy over the past few months and I’m sure she’s ready to go, but it’s hard to make that choice of when it’s TIME. When the time comes for her to head back to school it will be time for me to head back to work and I’m worried about the availability of a job that will be flexible with my schedule for her sake. Please pray for both of these situations, I know that when it’s right the Lord will provide the job for me.

I’m just spoiled enough that I regret the idea of going back to work because that means I won’t have the time to dedicate to my family, I won’t be able to volunteer with the Pediatric Cancer Foundation in the ways that I want, I will lose these special mommy and me times with Peyton.

Enjoy these silly Sunday pictures!

f.r.o.G
—Anissa

I had the most fantastic experience this morning. It was a feel good, heartwarming, wonderful thing. A family that we’ve met through the CCC was the chosen family of the Badge Bowl. Jimmy Reichert is a 7 year old battling leukemia and during his first treatment he was three weeks from the end of treatment when he relapsed. He is now approaching the end of his second treatment, he looks wonderful and he is just a phenomenally strong little boy. His mom Christy raises him and his two sister alone, they lived in a trailer that was falling apart in the worst way. The Badge Bowl is an annual event where Tampa’s Finest (Police) and Tampa’s Bravest (Fire and Rescue) have a charity flag football game. Jimmy’s family was last year’s recipient of the charity gift!

With the extent of their need, the Krewe of Agustina de Aragon (that is so not going to make any sense to anyone not from Tampa), the Foundation of Courage and with the compassion and generosity and hard work of many people, Jimmy’s family walked in today to a brand new double wide trailer, with all new furniture and appliances. Each child had their own bedroom, painted especially to their personal likes and it was like a very special small town version of Extreme Home Makeover.

It just touched my heart in a special way to see the community rally around a family who needed it so very badly. Christy is an amazing person, a mom who struggles day to day, but finds so much joy in the fact that she has her children, and she has each day with them. One thing that this past year has truly made clear is that if it can be repaired, if it can be fixed, if it can replaced….it isn’t that big a deal. It may be inconvenient, but that’s all.

I rode all day on the emotional high of how happy I was for Jimmy’s family. It was such a blessing to be with them on this day and to share in their joy. I pray that their new home continues to bring them so much happiness.

Back on OUR homefront though…..

Non-steroid conversation

“Can I have this cookie?”

“How about a banana?”

“I want a cookie!”

“You have to eat something healthy first.”

This is usually met with a fair amount of grumbling but an agreement that as a reward for eating said healthy item, a cookie will be given.

The STEROID conversation

Standing in front of the fridge with the door open and her head stuck in until all I can see are her shoulder-blades, I hear, “There’s no fruit in here!”

In the normal situation I could shrug this off and coerce her into something else to eat. Instead, I feel this pit of dread in my stomach because I can sense where this is headed.

“Let me check, there might be some grapes in there.”

“There are NO strawberries in there!”

Ok, well, that boat has sailed. There are definitely no strawberries in that fridge. So, I do the thing that would send any good nutritionist over the deep end.

“Would you like a chocolate cookie?”

Yes, I offered my child who is craving fresh fruit a sugar filled AND coated snack.

“Do I taste like I want a cookie?” This was accompanied with a look that could only be interpreted to mean “Hey, lady, did you take your meds this morning?”

But yes, she asked me if she “tastes like she wants a cookie”. The wording may not have been right, but let me tell you, the sarcasm and inflection got the point across beautifully.

About 3 minutes later Pete was out the door to Publix to get some fresh fruit.

Hey, if a strawberry will keep her head from spinning around Exhorcist-style, you'd be burning rubber out of the driveway too!

f.r.o.G…fully relying on God
–Anissa

It was like writing an essay for school, only easy! The hardest part was keeping it under the 2000 word limit. This is the email that I sent off to Ellen Degeneres, Oprah, Regis and Kelly, Larry King, Martha Stewart, Tyra Banks, CNN, ESPN for the love of Joe!

“In life there are so many things that people will have do that are difficult. But I would say that there is very few things that could possibly be as hard as watching your child suffer though a life threatening disease, the future uncertain and the possibility for a cure just beyond our reach. September is National Childhood Cancer Awareness month and I am truly pleading with you to take the time to recognize this month. My daughter Peyton is 3 years old, she has been battling Leukemia for over a year now and there is nothing more painful and rewarding than being at her side fighting right along with her. As the parent of a cancer child there is so little that we can do to help our kids, we cannot make this better, we cannot kiss this away. What we can do is raise awareness, raise much needed funds for research of childhood cancers, something that is being neglected by our national cancer groups and government. Do you know that cancer is the #1 killer of kids? More than AIDS, diabetes, cystic fibrosis and asthma combined? My daughter is one of over 40,000 kids battling cancer at this very moment. Please use your powerful voice to help us be more effective as advocates for our kids. I’m not asking to be on your show, I’m not asking you to donate your money…I’m simply asking, begging for you to give our precious children a voice. There are so many parents diligently working towards bringing a cure to our kids. www.loneliestroad.org, is a website about 5 fathers, one who I’ve had the honor of knowing personally, who are biking from CA to Washington D.C. this month in the names of their 5 children dying from Neuroblastoma. The treatment is there, but the money is not available to produce it for their children. What would you give to let a child have a chance at life? There is strength in knowledge, power in hope, and there is no better time than now to let people understand the grand scale of pediatric cancer. “

This is the email that I’m planning to send once a week for however long it takes to get recognized and for something to come of it. I truly encourage each and every one of you to take a moment, write a short email to one of these people who have such powerful voices in our media. I mean, if Oprah can get a million people to read “Of Mice and Men”, I think she could definitely boost the coffers for pediatric cancer research, right? If we are persistent and diligent, it will make a difference and we will be heard.

One thing that the Pediatric Cancer Foundation is preparing to put into action is called The One Voice campaign. It’s the brainchild of three moms who’ve lost children to cancer and it’s just the simple idea that if we are united in our efforts, if we are loud and constant, no one will be able to put pediatric cancer on the shelf anymore. We talk about the fact that breast cancer, prostate cancer, lung cancer have adult voices and advocates. They’ve been able to make amazing progress in research by the effective way they’ve raised money for their causes. We are going to do that for our kids.

Today was a day, a long full day. Peyton’s hasn’t been sleeping well, so neither have I. She has, however, been sleeping in panties instead of a pull-up. I have to wake her up and take her to the potty in the middle of the night, but it’s been a week and we haven’t had an accident yet!!! AWESOME!!

In the morning we went to a meeting for the Cure Kids Cancer Challenge, it’s phenomenal to hear all the progress we’ve made in such a short time. We’re already tucking away ideas and plans for next year’s walk. We are encouraging people to get registered online, we have to order our event tshirts very soon and we need to have a relatively accurate count, so if you’re planning on coming out, get signed up soon. We are in need of volunteers, if you’ve been thinking “Man, I think I’m going to be so bored on the 29th, I wish there was a way for me to get involved with the PFC and to help out with a great event raising money for pediatric cancer research”….this is your lucky day! If you know of a group that is looking for volunteer hours, or are just a compassionate heart with a few hours to spare, it is a great reason to get out and come on board.

After the meeting, I dropped Peyton off at Grandma’s house. SHHHWWWEEEEET! I had the chance to head to St. Joe’s hospital and go visit some friends who are stuck inpatient. Scott Patterson is a very special young man who is diagnosed with t-cell leukemia. He recently suffered a stroke, they believe due to the aggressiveness of a particular chemo medication, and it was fantastic to see him talking, smiling and responding. He has the best smile, and it was a wonderful visit with his mom and dad. We had a good time just talking and joking and for me to catch up on how life has been treating them….the only real way to put it is that life has treated them much the way a baby treats a diaper. But they are so strong, able to smile and laugh and talk about all that’s been going on. The whole family needs our prayers, encouragement and support.

I had a self-induced parent teacher conference today. It’s moments like this that I really just have to reach out and tell my mom and dad “sorry sorry sorry sorry sorry sorry sorry”. After all my stress and anxiety over Nathaniel’s performance in 4th grade, I basically got told that he’s a genius. He manages to daydream in class, forget books, homework, doesn’t take notes or study in any visible way….and he’s getting perfect grades. I expressed my concern about his inability to be organized or responsible and his teachers expressed their delight that he’s not disruptive or a problem child and is making the grades. So, we agree to just let him do his thing…stressing the importance of his staying with his brain in the moment and let his sheer genius handle the rest. My kid…the math brainiac….that is ALL Pete’s doing.

Right now it’s a disturbingly peaceful night at my house. Peyton and Grandma decided that she should spend the night, so they had to make a trip over to grab her nightly and morning chemo. While here, Grandma was coerced by Rachael to let her spend the night as well. No little girls in the house. It is quiet! I may break out in song. Nathaniel promptly invited his best buddy Ryan over to spend the night, but I truly believe that it’s impossible for any two boys to make as much noise as my girls.

I’m going to sleep without any little bodies trying to push me off the bed or kicking off the blanket. Mark the calendar, I have no idea when it might happen again!

f.r.o.G.
–Anissa

There are few things as unnerving for the inexperienced as being on live tv. We got warned about no cursing and no wardrobe malfunctions…we could comply with those. However, unexpected things can happen and boy did they ever!

Ok….this next part has nothing to do with the Cure Kids Cancer Challenge, and may not be considered child appropriate….that’s my disclaimer!

It was a great way for Holly and I to break though our nervousness. We both had lots to say about Childhood Cancer Awareness Month, but saying it on camera was a whole other thing. The segment just before us was a veterinarian who was talking about foods not to feed your dog, pet safety, all that sort of stuff, and they had brought along the sweetest dog. He was a very friendly puppy. Friendly and excited. EXCITED. The poor dog was having one long Viagra experience the entire time he was on stage. We almost died when the director had to tell the camera guys to “only shoot the dog from the head up”. The funniest part of this whole thing for me was that no one on stage had a clue what the dog was doing, it was the rest of us sitting behind the cameras that could see. So, when Holly (the host Holly) was rubbing his head and patting his back I kept thinking, that poor girl is one pat away from that dog making friendly with her leg!

We were laughing so hard that I thought we were going to have to leave the studio.

Ok…that’s all I have to say about that. Needless to say, we weren’t nervous after that….we knew there was no chance of us having THAT happen so everything else was going to be fine.

The segment on the Cure Kids Cancer Challenge went really well. Between the 3 of us, me, Holly Wirth and Barb (executive director of the Pediatric Cancer Foundation), we got all the important information out there. We had a wonderful chance to talk about the importance of childhood cancer awareness, the need for research funding and what this event means to our community. Peyton was very cute on camera…any surprise there? Pete came up with the idea that with as much as Peyton seems to be on camera or in the newspaper, we should offer up advertising space on the back of her binkie.
Tim and Holly and all the folks at Studio 10 were phenomenally nice and I know that we are so thankful for the opportunity to talk about how important this month and this event truly is. I had a bit of a babble issue where there were so many things in my head that I wanted to say that it all sort of fell out at once, luckily it sort of made sense…at least people nodded like they understood.

And for those who’ve hassled me, here’s a chance to see what the new ‘do looks like!

f.r.o.G…fully relying on God
–Anissa

There are struggles that happen in your life that are meant to strengthen you, to make you a more complete person, to give you the opportunity to grow.

Could someone please explain the purpose of the 4th grade PLEASE!

I guess in the face of dealing with cancer this should be cake, but 4th grade is really kicking our butts. Please pray for Nathaniel, he truly needs it. He’s struggling with all the non-academic points of school this year. He’s got the knowledge, but it’s the organization, time management, attention span of a gnat kind of problems he’s dealing with…therefore WE are all dealing with. He’s incredibly smart, so we just hope that the rest of it catches up soon. Please keep us in prayers for patience and diligence to guide him through a challenging year.

Rachael is rocking the first grade. She’s already an accomplished reader, writing is fun for her and she’s such a social creature that she’s in her element in school. She starts soccer on Thursday, she’s super excited about that. She’s decided to skip the dance classes this year, which I’m a little sad about because she’s just so darned cute in the outfits, but she’s ready to get tough on the soccer field, which thrills Pete to no end. Nathaniel had his first day of soccer today, he loves it…no real reason to his madness, but he’s out getting sweaty, dirty and having fun.

Peyton had her clinic visit this morning. She was a champ as always, she gave a fight when getting her port accessed, but that was because she refused to let me put numbing cream on it before we left. I think when we’re going longer between port accesses she forgets how much it really hurts. Her counts were fantastic! Her ANC was 1500 (perfect), her RBC was 10.5 (great!) and her platelet count was over 230K (phenomenal)….it’s awesome to my heart to see this proof that her body is handling the chemo well and is able to bounce back on it’s own. They will continue to watch her counts because if they go too high they will have to up her dosage. They don’t want her too high or too low, it’s a balancing act. But for now, we’re good. She took her 7 pills tonight at bedtime without a fuss, which always blows me away and we are braced for the accumulated effects of steroids to start sometime around Friday….I must remember to make that panic trip to the grocery store to stock up.

Tomorrow we get up extra early as Peyton and I will be heading down to St. Pete for the Studio 10 morning show. We are going to be talking about National Childhood Cancer Month, the Pediatric Cancer Foundation’s Cure Kids Cancer Challenge and what this month really means to us. It’s going to be extra touching as we are going to be there with Barb, the executive director of the PCF, and my friend Holly Wirth, who lost her daughter Paige. I hope that it reaches out to a lot of hearts and we are able to get people involved who might otherwise let the opportunity go by.

A huge thanks to Brandy and Jeff Fishman!! They are a family that we’ve met and become friends with through the Children’s Cancer Center, their son Noah has Neuroblastoma. They opened up their home and had a wonderful cookout and pool party for Labor Day and we had so much fun. It is so tremendous to have these friendships, to be supportive and encouraging of each other in way only cancer families can be.

Please say a special pray for Justin Gaudineer. He is a Neuroblastoma child who will be going in tomorrow to have his stem cell harvest. Please pray for a safe procedure and that he handles the hospital stay well.

f.r.o.G…fully relying on God
–Anissa