Thursday, April 9, 2009

Milestones

This is a Sharps box.

sharps box
Into it goes used, biohazardous medical supplies. This one contains a few hundred needles and syringes, several dozen near-empty vials of chemo medication, a few odd lengths of medical tubing and two years of unpleasant memories.

syringes and needles
This is the same Sharps box packed up and ready for mailing to a facility where it will be burned then properly disposed.

sharps box packaged upWe took this box to the post office the other day because Thing 1 finished with her weekly shots of methotrexate, the vile yellow drug that has helped keep her juvenile myositis in check after it hit full-force when she was not yet 3. Her ritual Sunday night panic pukes in anticipation of those shots have been replaced by her simply swallowing two little orange-red pills once a week for the next two months.

methotrexate pillsThen, we hope, it will be just one little orange-red pill for another two months.
methotrexate pillAnd when there are no more little orange-red pills to take, we will wait another month or so. If all remains quiet, we will slowly ween her off the next drug, cyclosporine.

cyclosporine capsulesThen, if things continue to go right, we'll be able to start tapering her off CellCept.
cellcept pillsThen maybe -- just maybe -- 18 months or two years from now, she will have taken her final dose of medication to stave off juvenile myositis.
*
It's nearing six years for you on this long, awful journey, my precious little girl. Each day you crawl closer to your goal.
A life free of medications.
A life free of blood draws.
A life free of those clunky night braces to help stretch your rigid ankle muscles.
A life free of any sign or symptom of this stupid autoimmune disease that tried to overtake your body before you had even gotten out of diapers.

You will not be like little Mikey, who never got to go to kindergarten let alone be a firefighter.

You will not be like Brandi, whose funeral your Mom wept at last year.

You will be one of the lucky ones to make it, my precious little girl.
I can feel it deep, deep down inside.

34 comments:

  1. Aww. I can feel it, too!! :) Sending lots of love and good thoughts to you!

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  2. You are SO cool.
    Go Thing 1 GO!!

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  3. I took methotrexate for about a year to treat my rheumatoid arthritis... it was brutal. I can't imagine a kid having to take it. I hope all goes well and that her prognosis is clear.

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  4. You are one hell of a father. Here's to you.

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  5. Sending all the best wishes I have to Thing 1---she's a brave little girl.

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  6. Go Thing 1, go! There is so much sadness in the blogosphere with Maddie's passing.

    Keep doin' what you're doin'

    I'm glad you're at home and I think you rock :)

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  7. This post is amazing. Hang tough Thing 1! (and family!)

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  8. Thank you for sharing your daughter's story and your perspective on parenting through this.

    My nephew was a lifelong patient at Children's Hospital Pittsburgh and Children's Hospital in Boston (he's their poster child this year). He lost his own battle -- with a different disease than your daughter -- at age 7.

    It was a rough road, not just for him, but for his sisters and his parents and grandparents. God heard from us a lot during those seven years. He still is.

    The reason I'm telling you this is that there are parents and families that understand what you're going through -- what she is going through. We support you, even though you may not know us.

    I'll say a special prayer for you and your whole family, and especially for Thing 1.

    I trust that good feeling you have.

    - Julia at Midwest Moms

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  9. I think this post was one of the best I've read in a long time.

    Nothing like a Daddy to help make his kids strong...

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  10. I have a sharps box too! No one has ever told me how to dispose of it. I just bag it well and toss. I feel guilty now? Don't rat me out. Thank you for sharing your story. You are in my thoughts and prayers.

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  11. From what you've shared here with this post and others, your sweet Thing 1 sounds like an amazing little girl. Feels like she's going to rock this plan!

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  12. Kevin, I have been reading your blog for a relatively short time so I had no idea that you and your precious Thing 1 were dealing with this.

    That seems to be a testament to how well you are dealing with this adversity.

    If I had known, I might not have been such a smartass in my comments (but I probably would have).

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  13. You go GIRL!!!!! This is a fantastic post!!!

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  14. Your pride in her - and your absolute faith in her ability to kick this thing's ass - makes my heart swell.

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  15. That is fantastic news! Thing One, you are one strong girlfriend.I'm looking forward to the day when we can say goodbye to my daughter's sharps box.

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  16. She will be the lucky one:)

    Hugs and Mocha,
    Stesha

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  17. Yay for Thing 1! No more shots :) This is a huge step in the right direction - so happy for you!

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  18. i got teary eyed reading this. wow. i hope all goes well.

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  19. Oh freaking great. Now I'm crying again.

    YAY THING 1!!!

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  20. I am duly chastened. I will no longer complain about last year's hell of doctors, tests and surgery for my daughter. You are a super Dad to have been handling this for so many years and still having a great attitude toward life.

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  21. Thanks for every so often putting things into perspective...Seriously.

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  22. whew! I did not comprehend your take on things till this post. I can not imagine a child going through what she has/is going through.
    I feel like a complaining little kid with mt own story.
    You and thing 1 are in my thoughts and prayers.

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  23. Whitemist - Joey K! Dude! You had a FUCKING BRAIN TUMOR YANKED FROM YOUR HEAD! You can complain and whine all you damn well please, man! Just live, OK -- that's all we want from you.

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  24. What a heart-wrenching post. She's obviously an awesomely awesome kid who will fight and beat whatever she has to. I like that in a person.

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  25. Of course she will make it. With modern-day meds, she has a bright future ahead of her, with daddy right there by her side. Y'all hang in there.

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  26. Wow. Every day, one step closer. You go, girl!

    And your parents totally rock ...

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  27. Oh my god this is my first time here and you made me cry!

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  28. Good to hear. So good to hear.

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  29. My husband takes methotrexate and was on cyclosporine.

    Gah. I can't believe your poor kidlet has to deal with that.

    But here is to her beating it and growing up to see her dreams come true.

    I know what it is like to wish for this and I'll wish a million times over that your wish comes true.

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  30. Amazing Thing 1 and her awesome family are truely an inspiration to all. Sending support, strength, admiration and love to all.

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  31. wow. I wasn't expecting to come here and cry.


    damn.

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  32. That's quite a milestone! Congratulations and best of luck for the rest of the journey.

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  33. As I was ready your post, I had the radio on tuned to KLOVE "positive and encouraging Klove" (a christian music station) and the song playing was called "Hold Fast" by Mercy Me. The chorus says...

    'Hold fast
    Help is on the way
    Hold fast
    He's come to save the day
    What I've learned in my life
    One thing greater than my strife
    Is His grasp
    So hold fast.'

    Never give up. My family has and will be praying for you.
    ~Miranda

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