Friday, July 3, 2009

Loooooonnnnnng Day

I am posting from the Almost Home Unit at Children's today. We have been here since 8:30 this morning and we will be here until six. I am sitting next to Ally and can barely keep my eyes open at this time. SO, in efforts to wake myself up...what better time to get the entry done.

Today, Miss A had another spinal tap. Dr B took care of the procedure, with three residents there to observe their first ever spinal tap. She does go under conscious sedation for that, so it does not hurt her. The only tears of the day were when they initially accessed her port. That doesn't even hurt, or at least that is what she says, because we put Emla cream on it to numb the skin. But she does get upset in anticipation of the needle poking her. The spinal fluid was again free of any cancer cells, which is why they keep giving her the methotrexate into the spine. Thank God for that . They started her IV chemo at about 1...and then they have to follow it with lots of IV fluids because that particular chemo is really hard on the bladder. They also did the ARA-C chemo, and will be coming to our house tomorrow between 11-12 for another dose.

The day down here is long. Luckily today we had a few visitors (thank you McKays, Mrs. Booher, and Pa). She requested Chinese for lunch. She has really been great today. Awesome spirits. I just told Jerad that she is as close to the old Ally as I have seen in a long time. Making beaded necklaces in red, white, and blue...playing everyone at Uno Spin...impressing her Dr and nurses with her red, white, and blue fingernails...doing a puzzle book...and watching endless episodes of Icarly. I bet I am the only Mom out there who has all the Icarly shows memorized. It is so quiet around here. Everyone is off for the Fourth of July holiday. Chemo schedules allow no holidays though...we had to keep on going.

So tomorrow is the Fourth of July. My Dad just finished building a pool at his house. It will be the first time that we are able to use it. And, he even has a 38 foot waterslide! It should be a really really fun day...we are having our friends up there for a little party. And the hometown parade too. I am just hoping HOPING that she is still in good spirits tomorrow and this current does of chemo does not knock her back. I don't want nausea, vomiting, fatigue, etc. I just want her to have one good day where she is actually feeling like a kid again. I want her to swim so much that I even talked to the doctor about Saran Wrapping the area around her is remaining accessed until Monday for the home health chemo. So that is my prayer wish for her today. Just one more good day and then we will take it as it comes.

I just said to her "Ally, is there anything you want to tell your followers on the blog?? I can type it here"
And she said "Tell them that Daddy is weird"
See....the old Ally is in there. Just waiting to bust back out.


  1. Sooo pleased to hear today has been more normal. I am sure you miss the "old Ally" but I trust she will return sooner than later.

    Is there an address where the Army can send you care packages? I saw GIANT marshmallows today and thought of a certain 7 yr old girl I feel as though I know. They would make the BIGGEST smores you have ever seen!

    Praying for a good tomorrow,
    Queen Bee Designs by Amanda

  2. barnetts- hope you have a great 4th and enjoy your dads new pool and slide. chloe would love to come for another visit. just let us know when.
    the humphrey family.

  3. "Daddy is weird", don't you just love it. When you think you can't handle another minute, they come through for you. Awesome!!! You are right, there are no holidays for this ugly disease, but we celebrated whenever we had good days, it works. Hope you enjoy your 4th and give your dad my best.

  4. Sooo glad to hear that Ally continued to have a good day after we left. We are all praying that you all can have fun tomorrow, and a wonderful Fourth. We will be thinking of you. Tell Ally that I will be excited for manicure very soon! Lindsay

  5. Terri Barnett ShumakerJuly 3, 2009 at 8:19 PM

    I hope that she feels good for the 4th so that you can all enjoy some fun. We are thinking of you all everyday. I got my bracelet and wear it proudly everday! Happy 4th to all.

  6. I've seen the good days and the bad days for you and for Ally. Today was a good day. I'm so thankful for that. I'm praying that tomorrow will be just as good-and Ally can run that concession stand like she's been wanting to do!
    Tonight I witnessed possibly one of the sweetest things I've ever seen. Fully expecting the kids to be watching TV, I opened the door to your room to find three friends (Ally, Madison, and Josh) sitting side by side under a blanket, their little heads close together, watching the fireworks from the bedroom window. You could feel the love in the room. You could feel the strength of friendship. Something so simple actually took my breath away. It's truly amazing what a situation like this can teach us.

  7. Janel...

    I know you are posting to keep us all informed and to keep a record of the experience. But every time i peek in to see how Ally and your family are I am inspired by your strength and my spirit is renewed by the unvarnished love in the posts...Suzannes post has me crying...because it's the moments...just the beautiful little moments...and when Ally is better...and this is all just a distant memory...anyone who has followed your blog walks away a better person.

  8. Daddy is weird...ok - we can all live with that because weird is the new cool!!! And if Jerad is weird - we need a whole lot more weird people in this world!!
    Hoping for a great day for the whole family tomorrow.!!!

  9. It was great to see you guys last night. I hope Ally is doing ok today. Happy Fourth. Have fun at the pool! :)