Wednesday, March 10, 2010

TPN is started

My girl woke up on Tuesday morning and I think she felt a little better. She started eating a few things. This was all before they even brought her TPN (IV nutrition) out to us. It figures. The nutrition is on its way and right before that she decides to eat. I say that lightly because I truly do not think she is deciding at all. She is not purposefully not eating or anything like that. She was just getting in pain every single time that she did. I was just very happy that she decided to eat. Our home health care nurse came out with the big bag of proteins/fats/vitamins, etc and started to teach me how to assemble it all. It is a huge long process...took about an hour both days so far. There are all different things you have to mix up and then put in the bag and you have to be very careful. You have to be careful about not letting any air bubbles gets in, and measuring the right amounts of everything, and making sure your needles/ends don't touch anything because they are sterile. I also had to learn how to work the pump, install the tubing onto the pump....yada yada. It is a complete pain and hard to do and I am still not ready to do it on my own yet. Lucky for me, they give me three or four days of instructions. I am just so scared that I will forget something and then it goes straight into her port and then straight into her heart. STRESS. This is what it looks like peeking out of her backpack. yuck
The good news is that Ally doesn't get any of the stress of it (she has enough of her own)...so while we were inside doing all this scientific stuff.....this is what she was doing....
Seriously, I about died when she said she wanted to ride her bike. I went flying thru the garage to find an air pump to pump the tires that hadn't been used in 10 months. Helmet, check. Gave her a little push, got her going....my neighbor screaming over to me to get the camera....ran in to get that, tripped over the threshold to the back deck, leaned over the railing and YES! got the shot. I just noticed that sweet little girl even gave me a wave in the picture! It was such a big deal to me because she literally hasn't gotten on her bike since before she was diagnosed. Not once, not even a little try....and here she is.

She woke up again today with a bellyache. We were really trying for school. It just wasn't happening. At some point we have to get back into the routine. I think that is one of the hardest things about all of this...no routine. We did get into a small routine a few weeks back only to have it RIPPED out from under us for the 100th time. And for me, always a planner...always like to know what is going on....always like to have the freedom to leave my house...well it just isn't there anymore. I crave it and need it, but no. I have to deal with it and it is hard with two other kids, but lately the sunshine has made it seem more bearable. And Ally's lovely tutor, Mrs Brower, she just works around us all the time. So if there is no school, and Ally isn't in too much pain, we call her and they usually get an hour and half lesson in. I have tried so hard to keep Ally up on her lessons and make sure that she can stay in the grade that she is in, etc.

Really nothing matters much to me anymore when I think about our friend Davey....Jerad drove up to Greenville yesterday to go to his funeral on behalf of all us (me too scared to take Ally that far away) They had a beautiful almost 2 hour service to celebrate the life of their wonderful boy. He really was someone you can never forget.....these kids are all so full of life when they feel well. Even at the young age, they appreciate the good days and take full advantage! That is how Davey was. Never wallowing in misery or self pity....but having wheelchair races in the hall or playing the 10th game of UNO.

Thursday at 8am...we are back to CMC. Another spinal tap. More chemo. Monthly antibiotic infusion. Monthly IVIG infusion and generally a very long day. They will UP her dose of methotrexate yet again. I am hard pressed to even let them do it after seeing Ally have a bad 9 out of 10 days since the last dose. The increase has me scared, but I guess the leukemia has me more scared. So I have to let them do it....but who knows what kind of war it is going to wage on her little stomach. No leg shots this time, and I am hoping this makes the difference.

Thanks for all the support and suggestions that we have gotten on how to deal with the side effects. We appreciate the support and prayers more than you will ever know. Fingers crossed for a better 10 days.

10 comments:

  1. She rode by my house today and even initiated the 'hi!' and I thought that was great! I'm hoping this round is kinder to her too.

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  2. Praying the shots make the difference this time around. Loved the pics on the bike. Awesome!

    Amanda

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  3. Terri Barnett ShumakerMarch 11, 2010 at 5:44 AM

    Love the picture. Sending lots of thoughts and prayers your way as always but extra for today and this week ahead.

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  4. I love the picture of the kids on bikes. In cancer treatment, one lives moment to moment and learns that every moment, every breath is a gift. I am praying for better days for Ally and for your family to get back to a routine. The lack of a routine takes an emotional toll. God bless!

    Emily Mangual

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  5. Seeing that nutrition bag brought back memories of when my dad was home from the hospital. Kate always wanted to "help fix Papa's food". She was scared to touch my dad--he was sooo darn thin--but she had to be right by my mom helping her hook everything up to feed her Papa. He's fat and healthy now, thank God! Drove by Ally and Madden out riding their bikes in the sunshine the other day. Brought a HUGE smile to my face, and a little tear to my eyes-happy tears!! Call if you need to get out, maybe a bike ride for yourself!!

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  6. what a sight! Hope today goes smooothly. Love you.

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  7. I just LOVE that picture of her on the bike!!!!! It brought me to tears as I know the joy you find in seeing that. Good luck with all the nutrition stuff, can't imagine adding that on top of everything else. You are amazing :)
    Diona

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  8. If you have questions about TPN or want to talk to a parent who is experienced in administering it in the home, don't hesitate to contact the Oley Foundation. We are here to help, and everything is free of charge.

    Check out our web site at www.oley.org.

    What might be most helpful is the catheter guide posted at: http://www.oley.org/Catheter_Infection_Guide

    If you email or call me, I can also send you a step-by-step how to hook up to TPN sheet...that might help with your comfort level with TPN.

    Also, my friend's daughter was diagnosed with ALL last winter. She is in the 6th grade. I'd be happy to try to connect you with her family if that would be helpful.

    Best of luck on your journey.

    Warm regards,
    Roslyn Dahl
    The Oley Foundation
    dahlr@mail.amc.edu
    (800) 776-OLEY

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  9. I have enjoyed reading your posts. Staying positive - that makes all the difference. Looked like a great bike ride!

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