Prayers...

In April, 2010, when Andrew was 2 1/2, a tumor was discovered behind his eye. The tumor was removed, but it was found to be an aggressive cancer. He endured seven months of chemo and six weeks radiation. In December of 2010, the day after his last treatment, he was rushed to the ER with an almost fatal bacterial infection. He survived.

He is now seven-years-old!! I don't visit here much, because during the ordeal, this is where I dumped everything--my rage, my fear, my sadness, my ugly, my hope, my everything. But I want all of you who supported and prayed for us to hear his updates. You helped me survive, and I am deeply thankful. Every once in awhile, I will check in to let you know how he's doing. Please continue to pray that cancer will never return to his body. Thank you.



Sunday, May 16, 2010

Shifting Gears

I keep hoping, wanting, needing things to go back to somewhat normal, and being disappointed when they don't.  Can't I just have a little of somewhat normal?   I guess not :(.  I was almost getting myself to accept (well kinda) that Andrew and I have to be in the hospital every other week for months and months on end.  I was just getting to accept that I have to give Andrew a shot every night, and swab his mouth with a disgusting substance three times a day.  I was finally beginning to accept the horrible reality that these nasty chemicals are the only way to keep him alive.  (But I was still hoping the side effects would be minimal). 

But now I am realizing even those expectations were too optimistic.  I keep finding myself brutally disappointed.  The day after my parents embarked on their vacation far far away, (thinking that we would be out of the hospital for a while), I found myself the next morning, crying in the ER out of loneliness, overwhelming sadness, and fear.  (John was with the boys. I was alone with Andrew who was in intense pain.)  When I went to Andrew's clinic appointment on our "off" weekend, expecting an hour appointment and hoping to escape somewhere fun afterward, I found myself spending the whole day there while Andrew got a blood transfusion, scrambling to find someone to pick up my other boys from school.  When I looked forward to a weekend at home with my husband and boys, and perhaps a little hiking, I instead discovered at 5 am that Andrew had a slight temperature and was in lots of pain.  Suddenly I was spending my anniversary in the hospital.

I am just realizing what it really means to live moment by moment.  It was all cliche before.  But now I understand.  My life can no longer be planned.  It ALL depends on how Andrew is doing.  My sweet baby. 
Every day will be a new surprise.  Andrew may be happy and play outside today, smearing paint on his toes.  Or he may wake up in agony, and end up on a morphine drip in the hospital.  There are so many side effects, and they all happen a different number of days after the chemo.  So while he may feel fine on Sunday, on Monday he will have extreme jaw pain and be unable to open his mouth.  While he may have a fun playful day on Thursday, on Friday he will end up in the clinic, being transfused.

So, on my anniversary, instead of spending it out to dinner and a movie, or maybe a show at the local theater, we are watching "UP" on the hospital TV for the 10th time.  I have a little cuddler next to me who (after some morphine) is finally eating a little chocolate ice cream and frequently strokes my arm in affection.  My husband is here on the couch next to our bed, working on some crazy genogram for the book of Jeremiah (he has some strange stress-relief methods) and still perfecting his Scooby Doo cartoons. My other boys are having a blast with friends....I am thankful they had a good day. And there have been some sweet moments here...

But this was not the anniversary I was hoping for, or looking forward to....  But perhaps that is the problem.  My approach to life has remained in "normal" gear.  And as much as I hate to admit it (and I do HATE to admit it) my life has become anything but "normal."  This anniversary in the hospital has given me a little clarity about the the new way I need approach my life.  I need to shift out of "normal" and into "kill the cancer" gear. I still resent it. I still wish we could all just go outside today and play. Because it is beautiful out. But I think I am finally resigning myself to the fact that this is how it is going to be for a while. Other people have gone through worse things...it is my turn now.


This year is all about getting Andrew better, it is about keeping Andrew alive.  That is it.  Anniversaries, family days, nights in my own bed, parties, and playdates all play second fiddle.  Each day I need to figure out what will best help Andrew, and go from there.  Does he need a little bit of sunlight and some fun? or will it be morphine and mommy time?  I need to be prepared to have my friends and family help me out regularly. I need to have support phone numbers and help ready to go, because I cannot shift into "kill the cancer" gear all alone.  I have two (three) other boys who also need my attention...(not to mention my own needs and sanity to protect...) 

Moment by moment, with one goal:  KILL THE CANCER.

  

12 comments:

  1. That sounds like a really difficult balancing act, but you can do it. I thought of Andrew today while I was in church. Praying now and as long as it takes.

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  2. First off, I too am praying for your sweet little one and your family...I wish really, that there was something more that could be done, so hard to hear about something like this and Im sure, that its even more difficult to actually be going through this. I know I dont technically "Know" you (just from reading your blog) but I wanted to do something (even though I dont know what)...I was wondering if you maybe would like a button for your blog - so other people could read and/or pray, for you all...I know its not much and maybe you arent even interested, just thought I would throw it out there, if you were interested, you can shoot me an email. If not, I will still be praying, and hoping the best for you all. (spikedice7@yahoo.com)

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  3. Have been thinking of you guys.
    It's going to be such a gift to recognize the changes you're making, to recognize the process. You're such an amazing mother, woman, to realize where you need to make those changes, and to move forward.
    Keeping Andrew in my prayers (and the rest of your family!)

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  4. It is so hard to balance all of this and I am bawling as I am reading this because I feel every single emotion that you are feeling right now. You are an amazing woman and doing the best for your family! KILL THE CANCER

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  5. It is a hard hard shift to make, I'm sure. Finding the balance of balancing work, childcare etc is hard enough and those are a bit more scheduled. I pray that you may learn your new balance soon so that at least the mad scramble of finding the right phone numbers and getting coverage for the boys will be an easier hurdle for you :)

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  6. oooh, you have captured your thoughts well. I can appreciate (on a small scale) how it might feel to expect and look forward only to be disappointed. I'll be praying for your shift from normal to kill the cancer. :)

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  7. I'm so sorry you're having to go through all this. Hoping and praying for better days for Andrew and all of you!

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  8. Happy Anniversary! Your 16th will be memorable, but it's one of many happy anniversaries to come... Your 17th will be celebrated in style!

    I found a notebook that says "Waiting for the Happiness to Start". That's how I feel. I know all about having a good attitude and that happiness is based on circumstance while joy is despite circumstances... But if someone isn't going through a trial they can't truly understand. I know how you feel about waiting for a "good day"...

    Praying that you get a sufficient amount of good days to see you through to the great days to come! (((Hugs)))

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  9. Kill the cancer, kill the cancer, kill the cancer. Sounds like the new normal is so very, very not normal. But maybe realizing it and trying to adjust is half the battle. I'm hoping tomorrow is a better, calmer, sweeter day for you and your boys.

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  10. Oh Julie, I just feel so very very sad reading this. It's so hard to hear about your son being in pain. I have been thinking of him and praying for him constantly, and wanted to check in to see how he is doing. My heart is breaking for him, and to see him sitting in that hospital bed...agony. Are his doctors optimistic that this chemo/radition can knock it out? Sending extra prayers to you and your husband, and all 3 boys.

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  11. Oh Julie, I am sooo sorry that this is your life at this time. I am so sad for your precious Andrew... for your family. And I am so mad. No one should have to go through this. My heart is breaking for you.
    Julie, I am praying for you. You come to my mind often throughout my day. And I am committed to praying for you when I awake at night... which can be often.
    You are such a gifted writer Julie and I am so inspired by your honesty and vulnerability and incredible spirit. This is a new chapter in your story, one that God will use powerfully. It sucks right now, but I can assure you, one day you will look back and you will clearly see how God used it for His glory.

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