"Guess what? I'm still a ROCKSTAR! Just wanted you to know." ~Hailey "Rockstar" Trainer

My Story

Hailey is fighting AT/RT, a rare and aggressive form of brain cancer. She has endured 7 rounds of chemo and is now preparing for radiation therapy in Florida. If you would like to donate to help with this endeavor, visit www.rallyfoundation.org and look for her name on the donate page.

Journal

Sunday, July 5, 2009 7:16 AM, CDT


So Mark woke the kids up early; dressed them; packed them into the van and came to pick me up from the hospital so we could go watch the 4th of July parade at Marietta Square. Monica was nice enough to stay with Hailey so we could have some family time...I mean, family time minus Hailey. We had a great time with our small group from church. The kids LOVED the parade. Jason sang something about America the entire time. Mackenzie said she wanted to dress up like the southern belles and march next year. And, Dylan did not say much but was giving an "oh yeah" when the sons of the confederacy were shooting their guns. Hmmm?

After that, we went for ice cream at "Sweet treats," and walked around a bit at the crazed square. There were all kinds of activities for the kids to participate in - all of them for a price. So we encouraged them to climb on the train that was free and then ushered them back to the car so we could take them swimming. Mark relieved Monica and hung out with his girl and the rest of us went to the pool for like 4 hours. I figured they would have been tired after that but was wrong. They begged to go see fireworks. So I called Mark and we decided that I would drive to the hospital with all the kids; we would swap; and then he and Monica would take them back to the square to watch. Hailey was fast asleep when I arrived, thanks to Mark, so I went across the street with a few other parents to watch the fireworks from the roof of the parking deck. And although cuddling up next to I.V. poles and wheelchairs was not the same as cuddling up on a blanket with my family, it was still nice to celebrate Independence Day. Hailey slept while the fireworks were going off. I called Mark to see if the kids were enjoying their display to hear Jason wailing in the background. Guess he is still scared of loud noises. Took him forever to go to sleep too. Our neighbors were shooting them off sending him into another tizzy. Mark had to sit at the edge of his bed until he fell asleep. I just hope he is not completely traumatized.

Hailey went to sleep like she does for Mark and woke up for me around 2 a.m. She vomited some feeds up and would not calm down to sleep for over an hour after that. And, I tried and tried his technique - lay her down, pat her, let her fall asleep. She was like, um, no way mom. I eventually had to put her into bed with me, which was hilarious. She sat up and talked to me for a while. She pulled my hair everytime I tried to lay my head down. She smacked my face when I closed my eyes. Finally, I just laid her down firmly and said, "Go to sleep Hailey." She did but only while touching me. She first had her head on my arm. Once that became uncomfortable, she moved her foot to my thigh. Then she put her arm on my head. Finally, I put my arm around her and grabbed her hand. That is how we slept until 8:00 this morning. I am not really complaining about that either. Cuddling with her beats watching her sleep from across the room. Ugh I am so turning into a softy.

So she is still doing great. Doctors and nurses continue to come visit just to say "hi" because they love her so much. The reason we are still here is two-fold. She is being weaned from methadone very slowly. They need to keep her here and observe so we do not have a repeat Florida trip. She is also on feeds again. We need to get them regulated before Florida to ensure she is getting proper nutrition. So, maybe we can go home before packing for Florida...maybe we will zip home in time to grab some suitcases and run.

Shauna

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Your words give us courage and strength. Please take a moment to post a thought and to take a peek at our links page where you can purchase a "Rally for Hailey" shirt to support childhood cancer research.

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E-MAIL AUTHOR

shaunatrainer@att.net

HOSPITAL INFORMATION

Children's Healthcare of Atlanta at Scottish Rite
1001 Johnson Ferry Rd. NE
Atlanta, GA