Tuesday, January 12, 2010

It is sorta like a broken record.

Hello from our merry-go-round of life here at the Barnett house. I say that because we just keep going round and round but we are not getting anywhere. Ally is still suffering from a piercing headache and we are pretty much keeping her on vicodin around the clock. It does provide her some relief, but it also wears off before the next round is due. We have pretty much been camping out in my bedroom....they suggested keeping her in the dark room to try to alleviate some of the pain. So that is what we are doing. No one knows why she is having this headache, but some suspect that it is because of the spinal. I guess you can get a pretty nasty spinal headache after one of the procedures. I would not be surprised if that is the cause because of all her vomiting, etc after it and her wanting to sit up. Plus her hemoglobin was low at the time, she was starting a fever, etc The whole thing was just NOT GOOD. I feel like we are still paying for it almost a week later. Of course, anytime there is a headache Jerad and I get a little panicky. I worry about it spreading to her brain. That is where leukemia cells like to hide (thus all the spinal taps) At this exact time last year, that is exactly what happened to my mom. We have been doing some serious praying.

Poor Ally. The girl is down. I guess I could expect no less given that she has suffered a headache for so so long. I know what I would feel like if I had a headache that long. I do feel like her spirits are down too. It is depressing..for me, for her, for all of us. If Evan watches one more TV show or plays one more video game...well, at least he is going to school. I did just call a friend of hers to stop by and see her. I think a visit or two from friends would cheer her up, get her mind off of it. There is only so much that her mother can do. I can attend to her basic needs, but she has other needs too and is currently getting little or no interaction from anyone.

She did start back up on the chemo yesterday. And today. I can't tell you how hard it is to watch that chemo going into her body knowing that she already feels terrible. What a struggle. I also noticed some pinpoint bruises on her neck. This usually means that she needs platelets. So they did a blood draw this afternoon, and I just found out she needs another blood transfusion tomorrow. This stuff is really hitting her. That is two transfusions in six days. After that, we go back in for two different kinds of chemo on Monday. Which I just realized is MLK day. And Jerad has a meeting. And Carly also has a doctors appt at the same time. And Evan will be home from school. How to manage? I don't know yet.

I am working on a schedule to have a few close friends come sit with Ally for a little bit at a time. People who she is comfortable with. I have always had help on the days we go to the hospital, but most other days I try to manage on my own. I think this might be good for both of us..to allow me to get some of the mountains of things piling up done and to give her a change of scenery. Or at least someone else to talk to. My small accounting job gets rather large in January every year when the year flips and I have all kinds of year end things and taxes to do. Maybe this way I won't be scrambling every single night to cram it all in and/or seeing the inside of Wal-Mart at 11pm at night (not pretty and actually scary). We will see how it goes.

I do know one thing. Someday when I am all past this, I am going to pay it forward. I am going to make it my personal mission to help out people who are facing a life-changing experience. There is such a need out there and those of us who have been through it need to stick together. Contrary to what the patient might think, there are a ton of other things to do to keep a family going. I can't possibly scratch backs ALL day (but most of it).

Here is my hope: that the blood transfusion perks Ally up and makes her feel better again. That the cancer is gone. Forever. And that the rest of us keep our strength up to keep plowing ahead. One day at a time.


  1. Janell, I hate to hear that Ally is feeling bad, STILL... Amanda had headaches a few months ago after her spinal and it was NOT fun..We are going to PT tomorrow..I will try and call you and see if you are there..I pray Ally has a better night..
    Amanda and Ally WILL make a difference, you just wait and see.. Amanda has already been talking about how she wants to give back..This happened to US for a reason.God has a plan for OUR wonderful girls. I believe it will be awesome..

    Much Love to you all. Love , Cathy

  2. Keep your head up, for it's where you can see the stars.
    You and your family are truly an inspiration. I landed on your blog by chance from Erin's photoblog. I've been addicted every since. I don't know you or your family, but remember that you are in my thoughts and prayers. It is people like you and your family that help others remember that they truly can get through their rough times.

  3. One day at a time. I'm praying for everything that you wish for and for continued strength. Don't forget you can't play the "what if" game. Not even for a second. Thinking of all of you.

  4. Janel...

    Sending love...strength...and offering anything...anything i can do... The beautiful thing about life is that we are all here to help one another...when you journey becomes so taxing you cannot walk forward we'll help hold you up...we all have our days...and the secret of life is so deceptively simple...just to love and care for one another...

    Hang on...
    Don't give up...

  5. Oh Janel,

    I wish I could take some of the pain and suffering away for Ally. I know it's pointless to say it, because I know it's not possible, but I'll say it anyway in hopes that it brings some comfort to you to know how much everyone cares for you, your girl, and the rest of your family. I have been reading your blog everyday and praying and hoping and wishing...

    I also contemplate posting comments everyday, but my perspective is so skewed right now that I just don't have anything positive to say and I know that's the last thing that you need right now.

    I did want to tell you that Ashley went through over an entire week with those severe headaches to the point that she was on constant narcotics without any relief. I talked to a lot of people while this was going on and I think it is more common than you would think. A lot of times, after they do spinal taps, the spinal fluid pressure becomes unbalanced causing severe unrelenting headaches, as was Ashley's case. I'm not saying that's what it is, but don't let them keep waiting it out. It's your child's sanity and quality of life that is on the line. Anyway, to relieve the pressure, they do another spinal tap, measure the pressure, and adjust from there. It's terrible to make them go through one more procedure on top of everything else, but anything is better than watching them suffer through days upon days of pain with no relief. Another thing that they might be able to do is put her on medicine to regulate her spinal fluid pressure (Ashley was on this after the additional spinal tap). Maybe that would be an option to try correcting the problem without going through another procedure. I don't presume to know what's going on with Ally, but I have always felt that knowledge is power. I hope this helps in some small way.

    We love you so much!
    Shelly Bohman (Ashley's mom)