Wednesday, January 6, 2010

Spinal Tap Eve

We have not been having a good week. Not a huge surprise, but frustrating nonetheless. Ally has had a pretty bad cough all week. Putting this on top of her stomach pains, headaches, and other general ailments and it is making it rougher on all of us. She is still gimping around pretty good too...she has trouble getting up and down the stairs, in/out of the car, in/out of the bathtub, etc. She has only made it to school for that one hour or so on Monday....she wasn't feeling well and then the school called to inform me that the stomach flu is running rampant there. I certainly don't need that right now, so we just arranged for her tutor to come today and also on Friday. We are spending tomorrow at the hospital.

She is due in to CMC at 8am tomorrow morning. She has yet another spinal tap on her plate. She is also starting back on the 4 day cycle of ARA-C, so her port will remain accessed and they will come to our house for chemo on Fri/Sat/Sun. I am feeling about 90% certain she will need a blood transfusion as well. I believe this is the source of her headaches and she is also constantly cold. I think it is going to be a pretty long day again, and we are due for a snowstorm. I love the snow...so excited...but I would also like to get home safely from the hospital!

I was talking to someone the other day who's son had gotten a spinal tap and she told me that they did not go in to watch. She asked me if I did. I told her sure enough, I have probably now witnessed about 15 spinal taps. All of them equally nerve-wracking and filled with prayers as they insert the large needle into Ally's spine. You would think it gets easier, but every time I get nervous. Every time she comes out of the anesthesia it seems a little different, and there are always alarms going off on her monitors. Her heartrate is too high, her blood pressure is too high, her respirations are too low....agggghhhhh. The alarms just constantly go off and I think I stand about six inches from her bed with my fists clenched for about two hours. It wears me out. And then a few hours later...the doctor comes in with her report..."the spinal fluid was clear of cancer" and then I really breathe a sigh of relief. I always feel like we are just one minute away from bad news again...I think it is because I am scared of my bad luck streak. But I try, I TRY, to always stay positive.

This journey is filled with much stress and lots of prayers. That much is evident. I feel constantly on edge...checking over every last skin tab on her, noting every symptom, hoping that the doctors never miss anything. I spend all day trying to make her more comfortable, making sure she eats, trying to occupy her mind, and trying to protect her from god knows what. I faithfully read LOTS of other blogs of people in the same situation...trying to educate myself and make sure that I am not missing something that someone else has noticed with their child.

To be quite honest, I think I am finally wearing out. I added it up today. Eight months we have been battling this. It feels like eight years. I always try not to look ahead....one day at a time...but lately I have been looking ahead. I am thinking it is not such a good idea. But we really only have four months left. The really crappy part is remembering that when Ally was originally diagnosed, this "intense chemo" was only supposed to be six months. We would have been thru it! Done! But then her MRD number came back bad, and now here we are. We have to fight longer.

So I do feel worn out. I have given up pretty much everything in my life for this. My job is pretty much nonexistent (except for a few late nights at the computer)...I no longer volunteer at my kids school...I purposely haven't signed Evan or Carly up for anything as far as extra activities....I have gone out with my friends twice in the last 3 months...I haven't even gotten my haircut since September. It gets old and I feel trapped in here...and now it is the dead of winter and I will go days without seeing another adult face except for Jerad. These are just the effects that it has personally had on me...not even mentioning what it has done to my poor Ally or the rest of my family. I am really really trying to stay strong, but I just get so mad at this leukemia and all it has taken away from my family. I really long for simple things like seeing my daughter walk home from the busstop, or hopping in the car to go do something, and not having everything hinge on our current medical situation. I can remember being frustrated if my kids were sick for a week or two. And now I am going on my eighth month and ... well I guess that is enough venting for now. It is what it is and I have promised myself I will be honest on the blog. Someday I will look back and remember these days. Not happily, but I will remember.

If you are still here, after eight months, thanks for continuing to follow our story. I know the interest in it has waned and really it does seem to be the same story...over and over again. If you are still reading after eight months of the fight, then you have truly earned a badge that says Ally's Army! Quite frankly, I am running out of blog material! Or at least interesting blog material anyway. Someday I will be writing about FUN things that we are doing again or maybe our lives will be so boring there will be nothing to write about anymore. Normal is good. Normal is good. 90% of the people reading this are sitting happily inside of normal. Someday that will be me.

21 comments:

  1. I have read from the beginning and still read and still pray. When I am doing something "normal" with my 3 kids (similar ages to yours) I think of you and pray for God's grace and peace to come over you with whatever situation you are in. I know it isn't normal, but praying one day soon you'll sit in normal again!

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  2. I have been reading for several months now, and went back to the beginning of your blog. There are 120 subscriptions in my Google reader; yours is the first one I look for everyday, and the only one I check everyday. On the days you don't post, I find myself checking throughout the day, and praying that you haven't posted because you are busy having fun with your kids. Please know that I'm praying for Ally, you, and your family every day.

    I have an 11yo son and a 6 yo daughter. They are my world. In April, we went through a scare when our pediatrician ordered bloodwork on my daughter (then 5) to rule out leukemia. I don't think I would have handled it as well as you are. You seem to be such a strong person. I wish I could help you. All I can do is keep praying for you all.

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  3. I found your blog from Erin Cobb's. I'm a huge fan of her photography. I check in here weekly to see how Ally is doing. I have a 1 and 3 yr old. I can't imagine what you all are going through. I am a stranger, but I am touched by your story and hope that Ally gets through the rest quickly and you can start worrying about the simple things again.

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  4. Janel, I check in an you several times a day...and keep you all in my prayers constantly. It hurts me to hear how you're struggling and I want you to know that those of us sitting inside of normal right now are praying fiercely for the day when your family joins our ranks again.

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  5. Janel, I just want you to know we are here everyday. It has become habit each time I am at the computer to check on Ally. We all do. Maddie got a computer for Christmas and it was on her favorites menu right away. We are still here, continually hoping and praying for health and peace for you all.

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  6. Don't Quit

    When things go wrong as they sometimes will
    When the road your trudging seems all-uphill,...
    Success is failure turned inside out
    The silver tint of the clouds of doubt
    And you never can tell how close you are,
    It may be near when it seems afar
    So stick to the fight when you are hardest hit
    It's when things seem worse that you musn't quit. -Unknown

    I send this because this is what I read to myself when times get tough - and the person I think of when I need a boost of inspiration is YOU! Your honesty is so inspiring and you are helping hundreds of other people remain stronger than their battles....You are changing the lives in your household and you are teaching your children how to persevere, be a fighter and love unconditionally - there is no better lesson.
    Give YOURself a pat on the back..... You are amazing -
    We continue to send our thoughts and prayers...

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  7. Terri Barnett ShumakerJanuary 7, 2010 at 8:34 AM

    Janel I will continue to read until you no longer post! I hope that this blog helps you to release some of your pain while writing about it.
    Sending lots of love and prayers your way.

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  8. Just got back from taking Abby to the bus stop. While waiting for the bus Hannah Montanna's song The Climb came on. Thought of you and the family(got a little misty eyed!) You need to blast that song and sing it as loud as you can! You are nearing the end of the worst part of this journey. You are making it,girl! It may not feel like it, but you are. I'm sure a lot of your reader's lives have been kicked into perspective many times after reading one of your blogs. I know mine has! Got company coming this weekend, AGAIN, Kate has dance in Cincy, Abby soccer in Mason, and a hubby that is MIA during b-ball season. BIG FREAKIN' DEAL!! You have made a lot of us sit back and think "in the grand scheme of things, is this really important/a big deal/worth stressing over". NO! So keep blogging on! The good, the bad, the ugly and the boring!! And if that big snowstorm that is suppose to be coming makes you cold, I suppose I could let ya crawl up in my snuggie/sweater with me! ;)

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  9. Yes, you will be sitting happily inside normal again. I promise!!!! Once you get to maintenance, life will be a normal that is not your "old", before cancer normal, but a "new" normal with cancer. It gets better and better....this is definitely the worst part. At least for us it was.

    It's so interesting to read about her ara-c days. In Atlanta, we give our kids 3 days of shots. They send us home with the shots after the first day of it going into her port. They don't send us home accessed but yet we as parents give the shots. I had a nurse come but most families here do it themselves. Yikes! Anyway, it's all the same but that was interesting to read.

    Hang in there....I don't know you but I can tell you are amazingly strong. I JUST now feel like I have a life again. We are leaving right now for Disney and I am running the half marathon with a childhood cancer research organization. They gave us all race day shirts and I decided to decorate mine with all the names of the wonderful kids that I have either met or am following. ALLY's name is on my shirt and I know I will feel all of your strength as I cross that finish line! I'll have lots of pictures next week :)
    Take care and I hope she starts to feel better soon!
    Diona

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  10. We are all still here Janel. I can only speak for myself, but hearing about the bad as well as the good is what we all need. We all know someone who only shares the good and we all know they have rough days as well. Your honesty and candor is refreshing and by sharing the not-so-good with us you are untimately helping yourself. Keeping it bottled up inside will only hurt you further. LET IT OUT!

    Whenever you are feeling down I challenge you to think of . . .

    Walmart.

    Love, hugs and warm wishes,

    A

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  11. Janel, just like all the other commenters, I can't imagine not checking in on you. You have become my morning coffee companion again just like in Rose Manor days. I know you wish you weren't the inspiration for all of these people, or the perspective to set a life by. You are though, and not many people would set the bar as high as you do.
    I'm with you til the end and into better days.
    I love you sweet!

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  12. Janel, yes, still here and praying with you. Your feelings are so real and very painful and yet your faith and strength win! We will meet and hold each other one day on the beach on Longboat Key.

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  13. Hi - I'm HERE for the long haul! I read everyday, although I don't comment every day. I'm continuing to pray for you and Ally every day too. Look outside at that snow today: will it be here a month from now? Probably not. Why? Because we are in a SEASON, much as you are in your circumstance. What do we know about seasons? First of all, we can get some fierce storms during them. Also,they can bring some unexpected surprises. But one thing that is certain: THEY DON'T LAST! Before we know it, we're in another season and nothing stays the same. This is true for your situation as well. Determine to trust God for every day and don't give up! You will be out and about again and it will feel wonderful. God is building your strength, your perseverance, and most of all, your dependence upon Him, which is everything. LOVE YOU MUCHLY!

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  14. Janel, I wish all of us could inspire you as much as you have given us all a new "sense of life". There are so many times, I get frustrated or do not have the patience with my boys and I stop myself and think of You! And I remember you telling us to appreciate those moments because all you want right now is to have one of those "normal" moments. We are all here for you, Jerad, Ally, Evan and Carly and we will be here following the blog post-cancer :-)Sending hugs your way!! Jenny Israel Black

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  15. You have a right to vent...let it out sista! We are all here to listen and the stand beside your family during this fight. Don't worry, Ally's army isn't going anywhere...we are here to stay:)

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  16. Janel, keep fighting, get angry, yell, scream, anything that helps with the frustration and the helplessness. There is nothing wrong with that-- and just look at what you have accomplished in the past eight months, yes you should be done, but the end is in sight. Keep going, together we will do this. Hugs to you and your family.

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  17. When you get into a tight place and everything goes against you, never give up then, for that is just the time that the tide will turn.
    ~Harriet Beecher Stowe

    Praying the tide turns soon!

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  18. You know I will never let our family's interest wane on what you and your family are going through. I constantly check first chance I get in the morning- so sorry to hear how it is going right now. I know you are exhausted but you are a hero to me! I hope your strength will help me someday when I find myself needing to be strong for someone special. Just remember all of us thinking about all of you ALL of the time! Hopefully you feel our support!

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  19. We all love you Ally and we are praying for you!

    love ya,
    Rachelle

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  20. Janel some of us... need to hear you.. we do hear you.. we hear your frustration ... we hear your anger.... and we love you for it! We hold on to our little ones just a little tighter... we look just a little closer to every bruise ... I think of you, I pray for you, and if Ally is any the fighter that her mother is... she'll be this horrible disease hands down! It's OK to be down, it's OK to be frustrated (guess what there is your "normal") we all think you are the strongest one.... please continue to blog... blog just to say "you walked your daughter down the street" - we all need you and your family to beat this ... sending you love :)

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  21. I am here, still reading, still praying. I feel so much for you and your situation and though I have not had to deal with anything like this (and hope I never do!), I am inspired by your story of strength and courage. Keep blogging. We'll keep reading.

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