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Day 1

The alarm went off at 5:45 this morning…in the AM! We managed to get up and moving and to the hospital on time, primarily because I didn't sleep last night. I couldn't stop thinking about the radiation and stressing about not waking up on time and missing her appointment and being published in some big book of "Terrible parents who can't get their lazy butts up to take care of their kids"…or something like that. I was also worried all night that Peyton would pee the bed, and it is Adelaine's bed….so that was an extra special anxiety.

When we we got to the radiation office Peyton immediately started clinging to me and crying that she wanted to go home. We sat and talked about what was going to happen and that it wouldn't be like it was the last time. Once she was laying on the table, she got teary and although she was so unhappy, she laid nice and still so that they could refit the mask to her face. I talked to her from behind "the wall" and she did cry throughout, but was able to hold still and keep her head in place. The procedure took a total of about 10 minutes, it felt like so much longer.

She was mute and angry when we left the office and was still very out of sorts when we got to the clinic. I will personally invite each nurse to come visit her at the Tampa clinic and see how well she does with getting her port accessed when she's not on steroids and in a rage from being strapped to a table. She threw a nasty fit over the port, but after talking to her and just letting her work it out, she finally started talking and smiling again…mind you, she hadn't eaten all morning. Dr. Barbosa gave us the clear to head to the hospital and get something to eat while they got our paperwork ready for admission. Once I sat a tray of eggs and sausage in front of her she was the golden child.

It was funny to be in the hospital today because we had tons of people say "Hey! I saw you on tv last night." Or they told Peyton she was a movie star, which she ate up! She even got her breakfast discounted! Ahhh, celebrity has its privileges.

We spent the rest of the day completely lazing around. Peyton ordered room service no less than 6 times…it's 10 pm and we're waiting for one last meal to come up. She took a marvelous nap and has felt good to just watch movies, play games, draw pictures and EAT. We happened to be here while our little friend Carly Bowman was here with her sister Lily. This is the family that has had two of their children diagnosed with totally different types of brain tumors. They are so sweet and just overwhelmed, how I wish there was a way for me to take this away from them and make their life simple again. But they are holding strong and coping with the situation as well as they possibly can.

Nikki Hawkins and her mom Penny are also here today! Nikki is here for her last inpatient chemo treatment. That is HUGE and I am so excited to know that she's almost done with treatment. She'll still be carefully monitored for a very long time and they have to start treating her to fight the effects that the chemo and radiation have had on her physically and mentally. She still has a serious battle ahead of her, but she is so brilliant, spirited and strong I know that she will beat all the odds. Penny, Amber (Carly's mom) and I had the fun chance to go down to the cafeteria and have lunch together. That was a nice surprise.

Tomorrow she'll get her chemo first thing, then we'll get discharged to head to radiation and then….well, we're not entirely sure. I called the Ronald McDonald house today to see if they're going to have a place for us tomorrow and I was disturbed to hear that they were still completely full. Unless someone gets discharged by tomorrow afternoon, Peyton and I may be bunking down in the truck in front of the hospital! Seriously, we are not so far from home that we can't just head home and leave for the hospital each day at 6 am, but it wasn't how we wanted to week to go. We'll make it work however it turns out.

Peyton is almost two weeks from her last chemo treatment and almost 5 days from her last steroid treatment and her counts are already showing the effects. Her ANC (her ability to fight infection, LOW is anything below 500) dropped from 4000 on Wednesday to 800 today. Today she received Methotrexate in her spine, Cytoxin and Ara-C in her port. She will get the Ara-C each day for 4 days. Her counts should continue to drop to the point where she's just laying out the mat to any and all bacteria and infection and she'll probably require an infusion before the week is out. But her smiles are coming back, her laughter is wonderful to hear after weeks of tears and anger…non-steroid-rage Peyton is slowly coming back and it's fantastic!

Well, Peyton's food just showed up…..again….and she's filling up before a long night with no midnight snacks…I just hope she sleeps through the night. I will be curling up with her on the hospital bed and cuddling with this sweet girl tonight….if she doesn't pee on me.

I got to talk to both Nathaniel and Rachael tonight and they both had wonderful times with friends, playing, swimming, just being completely distracted from our absence. I'm continually thankful that my kids are the type that are able to roll with what life throws at us, God has provided them with some mighty resilient spirits and it's never been more apparent than in the past year.

I'm so thankful that Day 1 is done….we are just a few hot dog bites away from having it completely behind us. Yeah!!!

Thank you all for keeping Peyton in thoughts and prayers.

f.r.o.G…fully relying on God

1 Comment on “Day 1”

  1. #1 "Angel" Karalyn
    on Jun 4th, 2007 at 9:59 pm

    Peyton, You are such a brave girl…and now you're famous too! Sending you a big hug.