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Peyton’s crappy week.

My posts have been few and far between this week, we’ve been so extraordinarily busy and we’ve also had an awesome time just being a family with Peter home, but we’ve also been dealing with some not so great problems.

First, let me tell you that with a few days of driving the van I have figured out a couple of things….I am completely thrilled with the van, my kids are button-mashing fools, and I will soon have a permanent bruise on my forehead because of the fact that the van is MUCH lower than the truck and I can’t just stick my head in without ducking. At least once a day, sometimes several, I will reach back in for something and nearly knock myself unconscious.

Friday night was our greater Brandon area Relay for Life. With all the craziness in the past months I was totally unable to commit to a team, but when they asked if Peyton could be their honored survivor we were happy to have a part. Last night I spoke at the opening ceremony and we participated in the survivor lap. It’s special to do it here at our local high school where we share the night with friends and we’re able to have an impact in our community. As it is often easy for me to get completely caught up in our mission to fund pediatric cancer, I am reminded that cancer has touched many adult loved ones, my grandmother and my mother, and without groups like the ACS working to raise awareness and raise research dollars, my mother might not be a survivor today.

Today we got a chance to really celebrate life. Our dear friends, the Lee family, have watched Samantha go through a long and tremendously hard cancer battle. She had a brain bleed right after diagnosis and she more than most suffered greatly from side effects of chemo and it was a daily uphill battle for her. She is such a bright young lady, she has this huge heart for helping and loving others and I just adore her. Her mother Joanne is a fantastic friend and an inspiring advocate, just a month ago she shaved her head in honor of Sam, proudly wearing that bald head to raise awareness of what her daughter has been through. Today, Sam’s family and friends gathered together to rejoice in her completion of chemo treatment. Done! Finished! Threw away the pills and moving forward into a cancer free life.

While there has been an overwhelming amount of grief and devastation in the past few months, there are also reasons to celebrate. It is this emotional teeter-totter. The loss of a friend, the uncertainty of a relapse…the joy of the end of chemo, a port being removed. It’s almost exhausting in it’s very high highs and very low lows.

Part of my lack of posting is that Peyton is still having a lot of issues these days. Her mouth sores aren’t going away, they are getting worse. There are now huge sores on her lips, the blisters unable to heal. They seem to get better then they get worse, the binky issue is driving me insane because I know that’s part of the reason she’s not healing. We are working hard to keep the pacifiers out of her mouth, and she understands that it’s making it worse, but she feels so bad right now that she just doesn’t care.

She’s been having some really rocking constipation issues. She goes from completely clogged up to diarrhea and her little booty is so sore she cries all the time. She’s on stool softeners and I’ve been forcing liquids down her, but she keeps battling it. I’ve had to give her suppositories to get things moving along and she lays on the floor and screams while trying to go. Today she even bled a little because of pushing so hard. It’s excruciating for her and just miserable to watch. We have a really good idea what she’ll be like in labor and it ain’t pretty.

She just overall isn’t feeling well. She’s getting a bug or something, she’s got a cough and is congested with a runny nose….no Little Tales this week, but I’m not going to tell her THAT! Her stomach hurts all the time, a mix between so many bowel issues and a “I think I’m going to throw-up” issues. We’re still using a more than usual amount of Zofran.

There are still complaints that she hurts, but they are less and she’s not waking up crying anymore. I don’t even know if that’s good or bad anymore, it may just be that she’s getting used to it. She’s definitely not sleeping well, she looks pale and tired and that scares me.

It’s this terrible feeling for me, not to even try to explain how hard this all is on her. It seems like it’s always one pain or boo boo, she’s in a pretty constant state of uncomfortable about something. She hasn’t suffered like this in a long time, way back into the worst parts of heavy chemo treatment. She complains that her head aches, she’s tired all the time, she looks really rough. I really can’t stand the anxiety this all brings on, I wish there was a clear answer as to what is wrong with her right now. I truly am just hoping that it is all just a cumulative effect of many months of chemotherapy on her little body. It’s a totally sucky answer, but it’s the one I’d rather hear. We go into clinic on Tuesday and hopefully we’ll make it to that one without having to go to the hospital.

In all honesty, I’m expecting her to get a fever or to just feel so terrible that I have the clinic before the weekend is up. I’m just hoping that she’ll be able to hold off until tomorrow afternoon.

Wow, you’re thinking, that’s just terribly insensitive of you to hope that your child’s illness works around your busy schedule. You’re thinking it, aren’t you?

Tomorrow is a big day for Rachael. And she NEEDS this. All Children’s Hospital has a big Iron Chef-style competition that raises funds for the hospital and one of the things they do is pick a few paintings done by patients and their siblings. I believe it’s 4 kids, but not positive on that. My 3 kids painted canvases…Nathaniel’s was full of flowers and sunshine and strange bugs that live only in his imgination…Peyton’s was a solid sheet of black paint with 2 purple stick people, strange and not one of her best works…Rachael’s sort of stumped me because it was this grayish sky, brownish ground and one sad looking flower. Rachael is an excellent artist for her age, and her pictures are usually bright and cheerful, but this one was really pitiful looking. I wish I’d taken a picture of it to share with you. I handed them in to be added with all the other paintings and really figured they wouldn’t get chosen. When Kyleen asked for a bio of Rachael with an explanation of her picture, I asked Rachael what her picture was all about.

“This is what I feel like when you and Peyton have to go to the hospital.”

The sad sky, the one lonely, solitary, seriously depressed little flower. Awwwwwww

Of course they picked her painting and tomorrow we get to take her to the live auction of her painting! Peyton gets a lot of attention and her picture is always on something, or in something or she’s on tv…Nathaniel’s gotten his 15 minutes of fame lately getting to be on tv….this is Rachael’s day to shine, she gets to be in the spotlight and get up in front of a lot of people and tell all about herself. She gets to have the attention focused on her and her accomplishment.

Now do you understand why I really don’t want Peyton getting sick to get in the way of this moment for her? She needs this and I need her to have it. She needs to know that although Peyton’s cancer issues are a big part of our lives, it doesn’t make her any more important to us.

So, please pray for Peyton to start feeling better, for improvements all around for our baby girl. Please pray that Rachael has an awesome time and that her day is just filled with the knowledge that she is special and appreciated for the amazing girl she is. Pray for Nathaniel because we have about 23 days of school left and his brain is slowly creeping away to summer vacation already!

f.r.o.G…fully relying on God

4 Comments on “Peyton’s crappy week.”

  1. #1 Karalyn
    on Apr 26th, 2008 at 11:21 pm

    Hugs,love,and prayers to all of you. I hope Rachael has the wonderful day that she so deserves, Nathaniel can hang on a few more weeks until summer vacation and that Peyton feels better really soon.
    Love, Karalyn

  2. #2 Jennifer Rivera
    on Apr 26th, 2008 at 11:41 pm

    LOLOLOL!! That is SOOOO funny about your panty mishap!

    I so hope Rachael's day goes off without a hitch. I am praying – seriously praying – that Peyton starts feeling better and that Rachael is able to enjoy the spotlight for a little while.

    Thinking of you guys always!

    PS – I'm impressed that Nathaniel made it this far into the year before checking out for a mental Summer vaca! F's brain never came back from Spring break! We're all ready for Summertime fun at my house!

  3. #3 Lori
    on Apr 27th, 2008 at 3:35 pm

    I read your blog almost daily (since finding it recently) and think you guys are an amazing and loving family! I can totally understand why you are hoping that IF Peyton's gonna need some medical intervention immediately that she hold off til after Rachel's big day. Rachael, you don't know me hon but it sounds like you are an AWESOME big sister to Peyton! I know you must get scared and sad sometimes but that's okay. Just let those feelings out and your mommy and daddy will help you through them, ok? And Nathaniel you too are an awesome big brother. I hope things get easier for ALL of you! Peyton, I'm so sorry you aren't feeling good honey. I hope you feel better soon and I'm saying a prayer for all of you! A friend (you haven't met) in Maine

  4. #4 Natalie
    on Apr 29th, 2008 at 7:13 am

    GIRL!! You are funny …. I tell ya. You're lucky I don't send that one to Chad ~ could be morning show fodder (did I just say fodder!?!?)

    Congrats to Rachel ~ what a sweetheart. I think her painting is beautiful!

    Hugs to Peyton ~ hope those nasty lip sores get better soon. Will say an extra prayer for her!!