What happened when I was busy making other plans.

Bravest of the Brave

“Life to you is a bold and dashing responsibility,” E’s fortune cookie, June 23, 2012

Since my last post, E has been symptomatic and often in pain for several weeks. When I called her GI doctor, Dr. S., early last week, they informed me that there was a cancellation; so instead of waiting another 10 days, we were able to move up E’s colonoscopy and endoscopy to last Thursday (the 21st). We mobilized quickly; did the prep (I think childbirth was easier); and showed up early Thursday morning. At this point, I was prepared to hear that she had IBD, but was hoping that it was an “early” case, that only slight to moderate inflammation would be found.

After a quick visit to her hematologist, we learned that her platelet count was well within normal range. All good there.

Then up to the outpatient surgical center. After a seemingly endless wait and several rounds of paperwork, E was finally brought in to the operating room. She counted down from 10, getting to two before the anesthesia did its work and I was ushered out of the room, her beloved Eeyore in hand.

Fellow parents, if there is one sight I hope you never have to witness, it’s seeing your child be put under. The horror and heartbreak of this visual—words cannot adequately describe it. This is my second time doing this, the first being her bone marrow test when she was 6. And despite the fact that she did it willingly this time—cheerfully, even, with a chipper “bye bye!”—it wasn’t any easier.

Deep breath. I regrouped. And then the wait. A little over an hour later, Dr. S came to get us (my mom was with me) and silently brought us back to the recovery room. I could tell from her expression that the news wasn’t good. Over the past few years I’ve learned it’s never really a good thing when the doctor looks troubled.

She told us she saw a thick wall of inflammation covering E’s colon, with inflammation in the upper tract as well. It sounded like she was surprised, too, by the severity of the disease. Signs were pointing to Crohn’s, but we would know more once the biopsy results were in, in about a week.

When E woke up, as promised, her first word was, “cookie.” (She hadn’t had any solids for a day and a half, and, as with all hospital trips, there was her favorite black-and-white cookie purchased from Lenny’s waiting for her.) She was in good cheer and happy to have the big test over with. After I tried to briefly explain that they saw some inflammation, she quipped, “My insides are a bouncy castle!” I let it go, happy she was happy it was all over with.

But in the days that followed, her stomach pain worsened. And on Saturday she could barely move. After speaking with the on-call doctor, we ended up spending a very long night in the local ER, where they did more blood work, gave her IV fluids and a CT scan to make sure there weren’t further developments or complications from the procedures. Luckily, there weren’t. Yesterday, I met with her Dr. S who confirmed that all signs are pointing to Crohn’s: another serious, potentially life-threatening lifelong condition E will have to deal with, just as we’re finally in a good place with the first one (ITP). It wasn’t unexpected, but it stung just the same.

(Note: I could succumb to a Nancy Kerrigan “Why us?” moment, but I don’t really believe in any sort of grand design determining this or any other outcome. So while that thought crosses my mind sometimes, like a pesky fly, I swat it away. I have no place for it.)

So, the news is not good. We have a plan, though, and great doctors who really care about E and getting her better. We have a wonderful support system, family and friends who helped get us through last time and I know will be there again for this. I’m confident we’ll get through this and get to a better place.

But right now . . . the part that’s most difficult right now is that my kid, my plucky, amazing, tough, resilient kid, seems resigned to her fate, which is so heartbreaking. From all I have witnessed as her mother, in everyday moments and as the one at her bedside, I can tell you that she is the bravest person I know. But right now, I’m not seeing the fight in her. Pain, lethargy, the gradual resignation that she once again is a “sick kid” are taking their toll on her, physically and emotionally.

I want my tenacious, vivacious fighter back. I’ll do whatever it takes to get her back. She’s too strong to go down with this blow. And hopefully I am, too.

11 responses

  1. Christy

    You paint such a vivid picture — it’s scary and somehow hopeful. Your wonderful kid is in there, temporarily hidden beneath this burden. She’ll bounce. Not because I know her so well, but because she has your spirit — and that is so evident in your tale. We all get blown over by the whirlwind now and then, calmer breezes will follow soon. Love, strength and hugs to you both.

    June 29, 2012 at 10:17 pm

    • Thanks, Christy! I’m glad you took it that way–even though I have a lot to say when I’m in the middle of the tough moments, I sometimes have a hard time writing because I don’t want to bring anyone down with me. But I want to put it out there because I find it important to get it out, both personally (cathartic) and also because I really believe that putting it out there helps others feel like it’s OK to do that, too. And sometimes selfishly I need reminders–especially times like these–that I’m stronger than I think, from people who really know me. So thanks. Xoxo

      July 3, 2012 at 7:15 am

  2. oh, karen. no one is going down with this blow. oh, boy. i’m so sorry you didn’t get better news – that sucks. 😦
    i’m thinking of you, both.

    June 30, 2012 at 12:33 am

    • Thanks, Breida! Two BTWs: 1) I love and am in awe of your blog. Can you Guest Mom my kid sometime? Poor thing got stuck with a craft-challenged/not terribly artistic mom. 2) I still have C’s rubber bracelet from DisneyWorld! We should meet up so I can get that to you.

      July 3, 2012 at 7:11 am

  3. Karen,

    You have an amazing gift for words–your pain, anxiety, and hopefulness are all palpable. I wish I had something incredibly profound or inspirational to say, but I’m afraid that “I’m here if you need to talk and I believe fervently that you both have the strength and resiliency to weather this storm,” will have to suffice. You’re in my heart…

    June 30, 2012 at 4:41 am

    • Lori, That more than suffices. We all look for the perfect words to say to comfort someone when they’re going through a tough time. This experience (now our second round) has shown me that the act of reaching out, saying you’re thinking about someone, reminding them that they’re strong–it’s more than enough. We feel it and take the strength and hope others send our way, and it helps us through. More than you know. Thank you.

      July 3, 2012 at 7:07 am

  4. ruth

    I am so sorry that the news was Crohn’s Disease and that she has significant inflammation. It sounds so painful, poor girl!!! And as her mother, you must be suffering watching her struggle and being unable to provide her relief. I am hopeful that now that it has been identified, between diet and treatments, you will be able to put this in remission and control it!

    June 30, 2012 at 8:57 am

    • Thanks, Ruth! It’s pretty painful for both of us, yeah. As you know, as a parent, when you see your kid suffer, you wish there were some way you could take the hit for them. But yeah, I am hopeful we’re in good hands and, between our doctors and our desire to get to a healthy place again, we will find ways to overcome this not-great news.

      July 3, 2012 at 7:20 am

  5. Maureen

    Hi Karen,
    Just sending you a note to let you know that my heart goes out to you and I will keep you and E in my prayers. Consider yourself hugged – for whatever it’s worth – I know it won’t take the pain away but it will remind you that you are loved 🙂 Thanks for sharing your story.

    July 3, 2012 at 8:39 am

    • Thanks, Maureen! It’s worth a lot–and I will take it gladly. Xoxo

      July 3, 2012 at 7:10 pm

  6. Karen

    So sorry Sis. I know how awful it is to see your child go through this kind of pain and resignation. I may be far, but my heart is with you and E. sending you lots of cyber hugs.

    July 3, 2012 at 6:37 pm

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