A Celebration...Almost

Tonight the plan was to joyfully arrive home from a long day of work and sit down to compose a beautiful, celebratory blog post. You see, it's is the 1-year anniversary of my blood disease fiasco. It would be strange to celebrate the anniversary of lost platelets, right? So what we were going to celebrate was the big secret I've been saving up! I was going to share that I was CURED! Look how fun it was going to be......

Fun but no

Really, it was going to be just about the best blog post I've ever written!

First, we were going to walk through memory lane and dive through the blood-related adventures of the past year. The never-ending blood tests (sometimes 3 times a week). The failed treatments. The successful treatments. The kind nurses. The frustrating doctor. The kind doctor.

Then I was going to tell you about the very best part of my birthday last month - which was when I met with my hematologist and learned that it appeared something NEW was happening with my blood (really, this really did happen and it was awesome)!

Dr. Hook said that it appeared that maybe, just maybe, I was showing signs of remission! In my happy post I was going to tell you about how I've been going to get blood tests every week just to be sure the remission was legitimate. And you were going to be thrilled about how every week the count has been high! Really high (last week they were 93,000!).

Then, after finally telling you all the good news, I was going to write a heart-warming section of the post that would be filled with all the wonderful lessons this blood disease has taught me; things like...."I learned that God really does have a plan for me and my blood" and "Even in the midst of that terrifying time, I knew there were lessons to be learned." And then I was going to thank you all for your support, encouragement, emails, texts, and phone calls. The post was going to conclude with a big virtual hug-fest.

Instead, I present to you.....

Tonight 2

Tonight 1
(tonight's late night comfort food dinner:
2-year-old thin mints from the depths of my freezer and some strange form of crab)

Today I got less-than-lovely news. I had a blood test this afternoon, and the ol' platelets tricked me AGAIN! Instead of soaring high above the clouds to celebrate the momentous anniversary, they plummeted....a long, long way. So now I'm back in the danger zone and will be getting a multi-hour IVIG treatment very soon. I wanted to wait until Friday, but it appears the doctor thinks that enough of the ol' platelets won't hang around until then so I need one sooner.


I've had 2 small cries today, which I feel was healthy.
And one large cry in my garage. Then I composed myself and returned to pastor life. It's an extremely busy time in pastor life, and I'm glad for that. It keeps my mind and my heart active with pursuits other than my blood.

So, instead of the celebratory post, this will now become a raw post. A real post. A post of how I feel tonight, 1 year after finding out that I have a blood disease that 95% of folks have forever. My truths right now.....

-During the last 9 weeks of thinking I might be cured, I was just starting not to panic about every single bruise
-I thought God gave me the best birthday present ever and now I feel like it's all just a sick roller coaster
-I was really excited about the thought that if I ever have a baby, I wasn't going to have to worry about the complications that having ITP would bring
-I feel embarrassed for all the times I remind people in difficult circumstances that God is "with them in the midst of it" because in my personal journey (on night's like tonight) when I am "in the midst of it" sometimes it feels like God must be busy watching reruns of American Idol
-In truth, I do believe God is here but I wish "here" wasn't so lonely and scary
-I wish I were braver
-Sometimes I wonder if God is punishing me for something
-I know God isn't punishing me
-Sometimes I wonder if I just haven't prayed the right prayer
-I know it isn't about praying the right prayer
-Sometimes I wonder if I could take a perfect combination of vitamins and cure myself
-I know it isn't about finding a perfect combination of vitamins
-I really, really wanted this chapter to be over
-I am really, really sad that it isn't

Okay, well, we can't end there. That is too sad.
And I know I have a million things to be thankful for. I know I will be okay.

So I will keep my chin up.
I'll keep doing this job that I love.
I'll keep hoping that God will please, please, please bring good out of this.
I'll keep trying to be a light, even when I am scared.
I'll keep smiling.
I'll keep believing that God is with me through every layer of this experience.
I'll keep trying to look outward more than inward.

I'm not always sure of all the specifics that I believe about life and faith and God and Jesus and the universe and history and infinity and human beings and psychology and relationships.

But putting all that aside....Tonight, I am finding indescribable comfort from the end of the gospel of Matthew (28:20) when Jesus says, "Remember I am with you always, to the end of the age."

Yes, I will do my best to remember that.


  1. What an amazing post, P.E. I am so so sorry. I wish I had the words to make "it" better - or to even make you feel a little better, but.....
    1. Please know that you are loved... by many! Including me and my entire family!
    2. Please know that we are praying for you and for your doctors and nurses... and for your blood....and for strength to get you through this "stinky" time.
    3. You are a light and inspiration to so many. Thank you for all you do... and for being you!

  2. Love & prayers your way my friend!!!

  3. I'm so sorry, Em. So so sorry. But I am glad this is happening to you because you can handle it. Look. You're handling it.
    ps: Thank God for doctors.
    pps: Your description of your comfort food made me laugh.

  4. Thin Mints are a must-have in these stinky situations. I'm def of the belief that one should always have at least 1 sleeve in the freezer at all times.

    I am so so sorry to hear the unexpected news, Emily. Especially after weeks of hoping/believing your reality would soon shift for good.

    My prayers go with you to the places where you don't feel brave. And to the places where you feel alone and left out. And to places like your garage.

    Last night during bathtime, I was washing Annie's hair, telling her to keep her chinny chin up as I rinsed the soap out. I was wearing a tree of life necklace yesterday. As I stood over her, I said, "Annie, look at the tree up here, babe... that way the yucky stuff will go behind you and not in your eyes. Keep your eyes open and watch the tree."

    So, umm, keep your chinny chin up, Emily. Eyes on that tree.

    Much love.
    ps: Let's get together soooon.

  5. Hello beautiful friends. :)

    Thank you SO much for the encouragement. I FEEL SO BLESSED for all the love and support.

    Today is a new day, and I feel much better already. Life sometimes presents hurdles and mountains. And then we climb them. :)

    Love you all!

  6. Hi Miss Emily. I am sorry your plts are not cooperating. Many things you said in your post I feel daily too. It is hard living with chronic illness. We will be back in 3 wks (Aug 15), so we will get together then. Love you,


  7. Emily,

    I work with a pretty amazing doctor who teaches courses and patients on stress management and resilience. He wrote the following and I wanted to share it with you.

    "The ultimate why
    Is unanswerable
    For the mind that is asking
    Or replying
    Both seek a why
    That is comforting
    Predictable and biased

    Truth however
    Is what is
    Not good not bad

    The reason for suffering
    May be as tangible
    As the weight of a rainbow
    And as reachable
    As the horizon

    The question to ask is
    Not where suffering came from
    But now that it is here
    Where can it take us.

    Focus more on what can we do about it, rather than where it came from. First remove the thorn, then worry about how it got in there."

    - Amit Sood

    I think you're already embodying this thought process...and when you look beyond this current horizon with the wealth of knowledge you are gaining about yourself and the wisdom you are able to share with friends, family, church members = everyone who crosses your path is going to be richer for knowing you!

    Prayers your way!

  8. Thank you, Barb and Jill!

    So thankful for support.

    Barb, I LOVE AMIT! I have his book!

  9. Thinking of you dear sweet lovely friend! My heart goes out to you and I will whisper little prayers of peace to your heart. As I bless my children each night and tell them (in the words of Matthew of which you mentioned), Emily, God is with you. Always!
    xoxo love from tiny Carthage!