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Organized chaos

Well, if I thought getting her out of the house to do something fun was an adventure, imagine what it was like this morning when she realized she was getting a finger poke. Good times!

Once we got there it wasn't too bad. She cried through the quick finger jab, but she also cried through the weigh-in, paying our co-pay,and pretty much anytime someone made eye contact with her, so nothing new there. Her labs came back really good. Her hemoglobin was actually up to 9.9 (we get transfused at 8 or below), her platelets are well in the normal range at 213,000 and her ANC was over 4000….steroids are good for something I guess.

Our radiation/chemo schedule just gets more and more convoluted. Now we have to worry about the fact that the first day of radiation coincides with her scheduled spinal tap….the question is whether she can be sedated twice in one day….and if she is, then she can't eat all day…ugly any way you think about it. We also counted out the days and it looks like our plans to come home on the weekends is going to be a no-go because we will have to do her chemo on a Saturday, which means it's inpatient at the hospital…then we would have to be back on Sunday to prep for starting again on Monday…I want to make it as easy on her as possible and if that means we stay, we stay. Our friends the Powells are just minutes away, so we can look forward to some fun play time with Adelaine and her family.

I want to give a huge thanks to Pete's mom for taking Nathaniel and Rachael for a sleep-over tonight. That will keep them from having to go with me to St. Pete tomorrow and it gets them out of the house and away from their sister…maybe she'll let me come over for a sleep-over next. Tomorrow is our big day, the simulation.

Friday is a big prep day for our trip. Saturday I am taking Rachael to Disney and Nathaniel will be going with his Big Buddy Charlie to MGM studios courtesy of the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url]. We are looking forward to a rocking good time! The kids neeeeeed this time to get away from the Peyton-steroid monster and let loose. Plus it's going to give Rachael some special mommy time that she never gets enough of. Sunday is our time on the [url=http://www.allkids.org/body.cfm?id=214]All Children's telethon [/url]at 12 and again at 5….Pete and I have decided we need to sit down with the two older kids and talk about what we CAN and CANNOT say on tv…..and the lists should be fairly lengthy. No knock-knock jokes, no tickling the interviewer, no showing off the cool things we can do with our fingers, no farting and then giggling hysterically on tv…you know, basically sucking all the fun out of it for them. Just in case you somehow missed it, you can view [url=http://www.youtube.com/watch?v=kzu7klbWI_8]Peyton's taped segment here[/url].

With that all going on, Friday is my day to get laundry under control….and I laugh at the mere thought…and start packing up the basics of what we need. The awesome thing about the Ronald McDonald house is that they have the washers and dryers and it's set up for long term stay, so we don't have to pack the whole world like we do when we head to the hospital…there actually a good chance of getting a shower and clean clothes EVERY day!

I have some AWESOME news about Noah Fishman…his dad updated us and let us know that there is no signs of relapse! Praise God!! There appears to be a bowel obstruction that is a fairly common side effect from his previous surgery. Noah's finally getting some relief from the horrible pain he was suffering. The family has been moved to Tampa General so that if they decide that it requires surgery they can jump right on it. Let's keep the prayers going for this family!

I also want to send out a huge thank you to all the supportive moms and dads I have met through this cancer journey. We email, we cry and laugh during support group, we visit each other's site and just give each other as much encouragement as we can through it all. I never imagined that in Peyton's cancer we would make such amazing friends and find this family to help keep us going. This is a huge blessing that we never expected and God just provided us with this network of support and we are so continually thankful for all the ways, both big and small, He shows us that He's working in our lives.

f.r.o.G…fully relying on God

We enjoyed a water gun fight over the weekend…no holds barred.

What a year can do….this is Peyton last year, almost a year to the date…

Yes, maybe it's time to invest in a new bathing suit…it was like trying to squeeze 10 pounds of potatoes in a 5 pound bag.

1 Comment on “Organized chaos”

  1. #1 Basi
    on May 30th, 2007 at 9:01 pm

    Hi Anissa,
    You had me laughing so hard tonight.:SMILE Thanks, b/c I really needed it. Peyton on steroids is pretty funny, though I can't imagine it's fun for you guys. I'll be thinking of you tomorrow as you do a rehearsal for radiation. Hopefully, the practice will help you to feel more comfortable with this process.

    love, basi