Aches and pains

Oh how I'd love to say that this round of steroids is going to fly by like a dream. However, the fact that I'm writing this blog in bed with a moaning and thrashing Peyton is a pretty good sign that it's not.

This is her first day of it really coming out in her personality. She was doing ok until the moment we stepped out the door to take the kids to school. Last Wednesday at the start of Delayed Intensification it was decided that her neuropathy symptoms were relieved enough for her to start back at a full dose of Vincristine. Monday when we went back to the clinic, I was able to report no new falls, no signs of leg pain and she seemed to be doing a lot beter. This was good! This was apparently premature as well. Because two steps out the door this morning her legs just crumpled…I was glad I was there to see the fall so I could explain to the doc what happened….it was back to the point where she doesn't trip or stumble, her legs just give out and she went flying. Scraped knees and palms….the bleeding stopped within a few minutes, but the crying went on for a good half hour. With her band-aid for her port, the two leg pokes she got yesterday, the two on her hands, the two on her knees and the one on her foot just for good measure….she is a walking billboard for Band-aid…we should be getting a kickback from them for so prominently displaying their product on so cute a model.

She took the fall really hard, her whole mood took a dive. When we got to the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url] for playgroup she perked up and played with her friends, but then she got tired and moody and came in to hang out with me instead, complaining that her back hurt. For her to give up the chance to eat french fries (which where sent for by special order of the steroid brigade) and play with her friends, she was feeling very bad. When we got in the truck to head home, she cried all the way home that she wanted to go to bed, she just wanted to take a nap. However, when we got home, she tossed and turned and complained about her back. She did finally fall asleep, a relief for us both.

I don't know what she dreamed about…I tend to think it involved some sort of footwear thieves because she woke up screaming "I can't find my shoes!!! I can't find my shoes!!" There are days I'm not sure I really want to know what goes through this girl's mind when she's sleeping.

After we got some shoes on…mind you, she only has on a pull-up with her blossoming little pot belly poking out, with socks and black shoes (I don't know why she feels the need to dress like a Canadian tourist)…..when she realized that something was missing from her life.

The bag of chips they gave her at the CCC was GONE!

We watch the tv show "Lost" and even if you've never seen it you probably know that there's a horrific plane crash…the scene where the crash srvivors are all roaming the beach crying and screaming is disturbing.

Peyton's reaction to the missing bag of chips make the crash survivors all look like Valium-overdosed zombies. She cried those big, huge, all over body sobs that are so overwhelming that she can hardly breathe…she has to sit on the floor so she could really get her wail on….it was so pitiful. Over a bag of chips….and they were just plain Lays chips, they weren't even Cheetos or Doritoes! Her head might have popped right off, I shudder to think of it.

I found her some chips, gave her some milk and watched her from a safe place across the room. Up and down, this poor kid goes.

I am happy to report, as of the moment that I am writing this, her pain medication has kicked in and she is now smiling and happy and the back pain is a non-issue.

She's felt pretty awful all evening, she didn't even eat any dinner…that's pretty bad for her.

We head to the clinic early in the morning for more chemo. I'm interested to see what the doctor has to say about the intense back pain she has going on…if it was closer to the spinal tap she'd had last Wednesday I might think it was just a residual pain from that, but this is the first day she's complained so it's definitely out of the ordinary. After we finish at the clinic we head down to St. Pete to meet with Dr. Cotman (which I have to tell you I'm already going to have a hard time talking to because one of the mom's have set me up to laugh….she says he looks like the guy with the afro from the Mod Squad….and he doesn't move his lips when he talks…I hope I'm able to concentrate on what he's actually saying and not staring to see if his lips are moving!) about Peyton's upcoming radiation schedule. It'll be along day, but hopefully because Pete will be with me it'll make it an easier one.

I did have some fun stuff happen today. Nathaniel and Rachael have been involved with the CCC Big Buddy program that pairs them up with second year medical students. As the end of the year fun event, they are sending all the budy pairs to Disney for the day. Charlie and Nathaniel are already planning to head to MGM studios, but Rachael's buddy Marie will be out of town. Marie came this past weekend and took Rachael out for a final fun day out that involved Olive Garden, the movie "Meet the Robinsons" and a manicure! Bliss!! Because Marie can't make the Disney trip we were given the tickets so that Peter or I can take her for a one on one day. I'm hoping it's me, but it'll all depend on how Peyton's feeling and her co-dependency issues at the time.

On top of getting news that James died yesterday, there has also been an unhappy update of a little local girl named [url=http://www.caringbridge.org/fl/sydneysims]Sydney Sims[/url] who has stage 4 Neuroblastoma. She has relapsed and it just involves so much that it is too much for me to go into here. But please pray for her and her family as they continue to battle for Sydney's life. She has such an amazingly bright and contagious smile, and she also sells handmade jewelry called Sydlets to raise money toward the expense of treatment. [url=http://www.sydlets.com/]Check out the Sydlets[/url]. Sydney will be traveling back and forth to NY for her treatments, starting with a major surgery and her friends and family are putting together a last-minute fundraiser to help with expenses in some way. It will be on Saturday May 26th from 12-3 PM at the Twin Lakes Park in Valrico. If you can make it, please do so….this family needs our support and prayers!

Sydney Sims

Keep Peyton and all her cancer comrades in your prayers, they are so courageous in all they suffer through. Each one is a hero.

f.r.o.G…fully relying on God
—Anissa