Sunday, June 14, 2009

Craft Day

Ally is doing better today. Her fever is here and there. Sometimes normal, but never too high. The highest I saw was 100.4 today. I was thinking they may let her go home, but the doctor says he can't let her go until her blood counts start to come back up. It is called bottoming out...when a few of her blood counts go to absolute zero. Her white blood cells are there and they also look at this factor called ANC. (I think it is absolute neutrophil count.) When her ANC is less than 1000 her immunity is compromised. When it is less than 500, we are supposed to be careful. When it is less than 200, she is not allowed to go to indoor places and she has to wear a mask at times. Today it is at zero! So the doctor wants her numbers to start buiding again before he will release her. It seems this may be hard to do, because she just go two more chemo drugs on Friday. But hopefully it happens.

Ally and I have been hanging out and doing crafts today. Jerad took the other kids to our neighborhood pool party. So far we have made a potholder, 2 keychains, a necklace, a bracelet and some bobby pins. Earlier, when Carly and Evan visited we also took a long walk to the Children's Hospital playground. She went on the swings and was the perkiest I have seen her in three weeks. I actually heard her laugh a few times today. It has been a long time since I have seen that. It is weird, but whenever she gets to the hospital she always seems to feel better. She really doesn't seem to mind being here. It is really just hard on the rest of us. Tonight we had a girls night in watching Camp Rock and having popcorn. She is the only patient in the whole hemoc unit and has a nurse all to herself.

I have been talking about her port, but I never really got to that part in the initial story. They moved so fast with everything upon her initial diagnosis. We found out that she had the leukemia and within about 15 hours, they were doing surgery on her to put this port in. We had to pick the type of port for her. There is one that is under the skin, accessed by inserting a needle into the skin. And there is another one that actually has leads coming out of the skin, thus no poking, but they are always hanging there. There was no swimming with that one. It was a no-brainer for us...swimming is a huge part of her life. So her port is inside of her chest and it is about the size and shape of a bottle cap. A tube goes straight from this port around her chest and right into her heart.

When they took her for surgery...that was one of the hardest moments for me. They said they were gonna take her and she started crying. But then they didn't take her for about 15 more minutes. So, she continued to cry and make herself more upset for that time. We were not allowed to go into the operating room, and she was just so scared to leave us. The poor girl had been through too much already. When they finally wheeled her down the hall, she was just screaming for her Daddy. She is her Daddy's girl. We came around the corner, and I could still hear her crying for her Dad. I felt so weak, I could barely make my legs walk down the hall and out to the waiting room. During the surgery, they were also going to do a spinal tap where they tested her spinal fluid for cancer in her central nervous system. I was paranoid about that because that is what happened to my mom's cancer. They were going to give her an injection of chemo into her spine too. She made it through the surgery just fine. She has one incision that is about 2 inches on the left side of her chest. There is another incision right above that...it is only about half an inch. In a few years, when the treatments are done, she will need to have it removed. It ended up being sore for about a week, but now she says she can't even feel it. Although at the current moment, it has a massive bruise around it (another symptom of leukemia) and it looks pretty ugly. In this picture, you can kinda see where it is on her chest and how they hook her up to fluids/medications/ etc. They also take her blood draws right out of there. That's her best friend Madison who has been a very loyal visitor.
Right now she is asleep next to me, still holding onto the glo-stick bracelets that the nurse brought for her earlier. She looks cute. I am going to sleep next to her on a pull out couch. I really don't mind it. Maybe I will get more sleep here than I do at home with my annoying dogs! Thanks again to everyone for all of the prayers and wonderful comments we receive. Jerad and I read each and every one of them. Really! The couple of nice people who offered to donate blood: She is actually B negative. I am not sure how that would work, but looks like you may not be the right match anyway.
Praying that her counts go up and we get to go back home!

13 comments:

  1. Will add a specific prayer for Ally that her counts go up. And a prayer for you for restful sleep.

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  2. Glad to hear that Ally perked up today. That's crazy that she is the only patient on the floor right now. We'll pray her counts come up quickly and you can return home once again. Tomorrow we are in the hemoc clinic and if all is well, we'll try to come up and visit. Have a good night sleep!

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  3. When we left the hospital tonight I told Bobby Ally was happier than I have seen her in a long time! The laughs she gave us tonight were awesome. She was honestly cracking up at Joshua. It made me so happy to see her laugh and actually be able to talk to us, not just answer yes or no. We love to see her feeling a little better and smiling ;-)

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  4. You are the only ones there? I'm coming out there tomorrow night if she is still there! I miss my Ally girl not being right across the street. But I'm glad she is doing well there and that she had a good day today.

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  5. Just found out about Ally's illness. We are keeping you all in our prayers and thoughts daily. If you need anything at all, please let us know. I teach, so I'm off all Summer. I'm here if you need a place to drop your kids for a while, here if you need friends to go out with to relax, and here and up at all hours if you need to call for any reason whatsoever, even if it's just hours of chit-chat. I know we've only met once at a reunion Janel, but if Jerad chose you to be his life partner, I'm sure we'll be fast friends, since I'd trust any choice he makes! I'll let everyone know on my facebook and myspace pages about Ally's blog so that they can keep up with it, and so that more prayers can be sent your way! Sending love to you all! ~Jen (Woofter - Shiplett)

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  6. Can't wait to see Ally today and hear her laugh. I've missed that too. I hope she gets to come home!

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  7. Dear Jerad and family....I am so sorry to hear about Ally illness. It has been almost 20 years since Jerad and I have seen each other but it seems like yesterday we were running around the yard playing and laughing so innocently. My thoughts and prayers are with you all. I too trust that the lord will be with you every step of the way in her recovery and whatever else you get thrown your way. He is an awesome God!!!! I will make sure and say a special prayer for her every day. She is a beautiful little girl with her fiery red hair. I too have a red head and I know their fighters. She'll beat this! Love to all. Jerad....I miss you and love you, my childhood and life long friend (L). ~ Melissa (Spillman) Dennis

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  8. Oh, Ally looks so bright-eyed and perky!!! It does my heart good to see her sweet face. I am anxiously awaiting my potholder!!! I had good prayer for the sweet girl early this morning, as I woke up with her on my heart. I know that God Himself is with her every moment and that He is carrying her (and you) through this time. MUCHO LOVE!

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  9. Janel...I know that it seems weird that Ally perks up at the hospital, but I can tell you that Matthew does the same thing. I think they feel safe there, with people who know how to care for them. Matthew has made the call a few times to go to the hospital and he has actually insisted on staying at least once. He says he knows they can take care of him if he has a problem. Maybe that is how Ally feels too, although she may not know it yet.
    I'm glad she is feeling a bit better and we think of her and all of you daily. Keep strong, you will get through it.
    I hope you have your own pillow and blankets for that pull out bed...its not the most comfortable thing. :)

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  10. I just found out from Marc Hammer. I went to school with you Jared and you were always a good freind. Some days you were more like a brother. My thoughts and prayers are with Ally and your family.

    I love you bro. If you need anything from me never hesitate to get in touch...330-304-5481

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  11. hey guys - have been following the blog and thinking of you all daily. so glad to hear that ally is doing better today. am glad to see there is a playground and some normalcy even while she's in the hospital. we're going to be in oxford this weekend and so wish we could stop by or be of some help. but it sounds like she can't be around other kids too much (?). if that's not the case or even if you want to get out for a half hour walk or coffee w/me on sunday, let me know and we'll swing by on our way home.

    i love you and we're all praying for ally and for your family. love jen

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  12. Joe, Melissa and OwenJune 15, 2009 at 3:26 PM

    Hi Barnett Family - We're so happy Ally is feddling better and has been able to enjoy the nice weather outside! We wanted to let you know that we are praying for Ally and the entire gang! Janel - As I read the blog your stregth amazes me. Please let us know if you need anything! Love, Joe, Melissa and Owen

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  13. LOVE the new photo of you and Ally. (On the sidebar) Beautifully done, Erin. Sweet smile on Ally's face!

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