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Long days in a steroid haze

Tuesday morning we went to Cracker Barrel with friends to get in one last relatively sane meal together before the kids all come clamoring home from school for the summer. From the moment we sat down to the moment the food arrived her head was attached to my arm. She just sat there with her face buried in my arm. In fact, when I tried to butter her a biscuit, she sort of glared at me for moving her pillow around. It rather feels like I have grown a second elbow….it's awkward, but I'm getting used to it.

Peyton's reaction to the steroids has been gradually getting worse each day…the appetite (hello, 4 packs of popcorn a day), the mood swings (who knew opening the car door before she got a chance to could ruin a girl's day?) and the nastiness (No, Rachael, you AREN'T cute!). In fact, she took great glee in telling her dad and me that she was ready to go….I think the exact phrase was "Come on, slackers!!" I have been smacked-down by a 3 year old….my life is complete.

Honestly, if I wake up one more night in a pile of pee….especially pee that doesn't belong to me!…(ok, that may have just made me sound really weird)….I may come unglued. I know for a fact that one thing we'll be getting as a part of Peyton's "End of Treatment" celebration is going out and buying a new mattress! It only happens when she's on steroids because it totally dries her out and she drinks like a camel….and I roll over into a puddle…it takes a special kind of love to deal with that. I have to pad the bed now and pray that she doesn't roll off of it in the night to make her nightly deposit.

Monday night we were up at 3:30 AM, she needed to eat and catch some Tivo time….then she smacked me awake at 5 AM to get reassured that we WERE going to go to Cracker Barrel in the AM….and then she had the nerve to fairly hiss at me when I tried to wake her up to go. My sympathy level drops real low when she's had me up all night and I tickled her awake anyway. When we walked the kids to class, lots of kids and parents who are used to a smile from her in the morning are surprised to see her scowl at them or to totally ignore them when they talk to her. She needs a shirt that says "Steroids, dude…catch me in two more weeks if you want nice Peyton".

It was so bad for her yesterday that when I told her it was time to go to her favorite thing, playgroup at the Children's Cancer Center, she started crying and said she didn't want to go. That's like Pete not wanting to go to the Oreo factory or me turning Brad Pitt down for a date.

We only have a week left to go…..a week of her moodiness getting even worse, her cheeks and belly puffing up like an angry blowfish and her eating like a linebacker on…well, steroids! She's so fat and sassy right now, she was standing next to my friend who is 5 months pregnant and there she was…belly thrust out, hand on her back in a tent of a dress…she looked like a little mini-pregnant-me. It was hysterical. Until I laughed at her and then she scowled at me and reminded me that along with the belly of a pregnant woman, she also has the temper of one. I stopped laughing.

Last night was Rachael's k5 graduation….probably one of the cutest things I've ever been witness to. The kids all performed magnificently through math, reading and Bible examples, Rachael got to do some reading on stage…very proud moment. They sang and showed off like the proud soon-to-be first graders they are. The first part of the program was the kids in a circus skit, Rachael was a lion and then they changed into their little caps and gowns and received their diplomas. It's hard to comprehend that my baby is in the first grade already, she's a constant source of laughter and fun and I'm so very proud of how she's changed and grown into this fantastic kid.

This morning, Peyton and I headed off to the clinic. She arrived with her little thundercloud of gloom hanging over her head. She immediately started complaining she was hungry….this is only an hour after polishing off a 4-egg breakfast…I kid you not….so she ended up snacking on some chips and then she laid in my lap as she received her chemo. Her doxirubicin takes an hour to through Iv and Peyton and I dozed off in the infusion room lounger….I think I snored a little bit…and my friend Penny was kind enough to shoot a picture of us on her camera phone that I will not be posting here. We were both exhausted and needed the nap.

We have next week off except for a finger poke and then we start our chemo/radiation/Ronald McDonald trip on the 6th. Looking forward to getting it done and out of the way.

Today was the kid's last day of school AND Rachael's 6th birthday. We're heading over to Grandma's house tonight for a special dinner birthday with cake and ice cream to follow. Again with the amazement of how fast the time goes by, the kids grow and change and become real human beings.

Yard sale fundraiser plans are coming along. We're collecting stuff for the auction portion and we have a donation date set up for June 29th from 9-12 and from 5-7. We're working on getting Peyton-Palooza flyers out there so we'll get a good turnout. So many friends are getting involved and helping out and I know that if we don't raise a single dollar, it'll be a wonderful reminder of how much our friends have given us and love us…they rock! If you're interested in helping us by getting flyers out there, email me at [url=mailto:anissa.mayhew@verizon.net]anissa.mayhew@verizon.net[/url] and I'll shoot you the flyer pdf.

Thanks again for all the wonderful messages about the [url=http://www.youtube.com/watch?v=Kvcvi1IioSY]Cancer Kid movie[/url]. I'm glad it's touched so many hearts and that others are sending it around to help raise awareness of the many different types of cancer affecting our kids and the need for a cure.

*In the U.S. almost 3000 children die from cancer each year.?

* Cancer is the number one disease killer of children.?

* In the past 20 years only one new cancer drug has been approved for pediatric use.?

* Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.?

* September is Pediatric Cancer Awareness month, which nationally goes largely unrecognized. ?

*The government recently cut the budget for Childhood Cancer Research.?

*14,000 children will be diagnosed this year with cancer.?

*Currently there is between 30-40,000 children being treated for cancer in the US.?

*As a nation, we spend $ 14 BILLION per year on the space program, but only $ 35 MILLION on childhood cancer research per year.

*There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS and yet the U.S. invests approximately $ 595,000 for research per victim of pediatric AIDS and only $ 20,000 for each victim of childhood cancer.

*The NCI federal budget for 2003 was 6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

*In 2003, the Childrens Oncology Group (COG, the world's largest childhood cancer research organization, caring for 90% of children and adolescents with cancer in North America) submitted a grant to the NCI that was approved for million each year for 5 years for childhood cancer research – this is the operating budget for COG. From 2003-2006 only million of the million approved for each year has been provided to COG.

f.r.o.G…fully relying on God

2 Comments on “Long days in a steroid haze”

  1. #1 dug
    on May 24th, 2007 at 6:51 pm

    the numbers from the nci are staggering how little goes to the need. i am curious what the % are for the acs?

  2. #2 dug
    on May 24th, 2007 at 6:54 pm

    I want to go with Peter to the oreo factory. I will bring the milk.