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Deep in the Forest of Fear

Rebecca’s spark has dimmed, and we don’t know why.

On days we go to Pittsburgh, she sleeps the whole way there, is pretty normal at the hospital, and then sleeps some or all the way back home.  When we get home around mid-day, she usually stumbles to the couch and takes a long nap.  She might have a few normal hours of wakefulness starting mid-afternoon, get energized around dinner and bedtime, and then go to sleep for a full night.  Or she might spend those hours not doing much of anything except lie awake.

On days Rebecca goes to kindergarten, she usually walks there and has a normal morning.  And then, right around lunch time, she usually runs out of steam.  We had to go pick her up the other day because she’d fallen asleep at her desk, deeply enough that normal attempts to rouse her got no response.  (Normal, as opposed to “THERE IS A FIRE WAKE UP NOW!”)  We got her home, and she stumbled to the couch and took a long nap.  Once that was done, she didn’t do much for the rest of the day.

Even when she’s awake, at least half the time she seems distant, disconnected.  Much of the time she’ll just lie on a couch or a lap, not moving much, not doing anything but staring off into space.  You can catch her attention and get a warm smile or an air kiss when you do, but that’s it.  She’s there, and yet not there.  At her most energetic now, she’s much more subdued than she has been in the past.

And we don’t know why.

We’ve ruled out seizures.  The EEG showed absolutely no trace of any seizure activity, even when she just sort of stopped and stared off into space, as she does so often these days.  Everything was completely normal, diagnostically.

We think we’ve ruled out pressure due to tumor growth, given the latest CT.  We’ve moved up her next MRI, and expanded it to most of her body, to see if there are tumors elsewhere, or if the CT somehow missed something.  Maybe a thalamic tumor.  Maybe not.

We can’t definitively rule out a virus of some kind.  Her viral panel was negative, but it’s a limited test.  Everyone in the family has had a virus that drained us, as have some of our friends, but most of us recovered in a few days and Rebecca’s been like this for two weeks now.  If it’s a virus, then something is keeping her from recovering from it.  But her blood work is normal, her immune system apparently fine.

We can’t rule out the possibility of side effects from the p28 treatment.  Rebecca is the 38th child ever to receive this treatment, and one of a very few who’ve gotten it at her dosage level.  Maybe this is all just a huge side effect.  Except it’s been almost a week since her most recent treatment, and there doesn’t seem to be much, if any, improvement.

In the absence of certainty, it’s hard not to descend into fear.  Maybe none of these things are what’s wrong, we try not to think.  Maybe she’s just dying.  It’s a little like being deep in the heart of an unknown forest at twilight (or is it sunrise?), unsure which way to turn and what’s really dangerous.  A snake could be in that log.  A rotten tree might fall.  There might be a bear.

I grew up in forests; Kat’s totally a city girl.  But even I can’t help feeling like Rebecca is leaving us slowly, a tiny little bit at a time.  Intellectually, I know that may not be so, but in my gut I feel it.  I look at her lying limply on the sofa, her eyes vaguely focused on something a thousand miles away, and my stomach twists icily.  I want to shake her fully to life, drag her back to us, scream until the spell is somehow broken.

Instead, I take her hand and smile at her.  I sign “I love you”, tapping it to my heart as we always have in our family, to see if she’ll do the same.  Usually, she speaks “I love you” back, because that takes less energy, less movement than signing.  Her eyes crinkle with warm affection when shes says it, looking into my eyes, holding my gaze for a few moments.  Until her gaze slides away and loses its focus on the here and now.

If Rebecca were cranky and irritable from exhaustion, that would actually be easier on us, because that would make sense.  That would be normal.  It’s the quiet inertia that really, deeply scares us.  Whatever our heads may derive from looking at all the maddeningly incomplete data, our hearts are filled with fear.  We’ve tried to push it away, and also tried to accept and acknowledge it, and neither approach seems to help.  The fear persists.  We’re afraid that her light is very slowly going out, that she’s fading from this world, that she’s leaving us.

And we don’t know why.

Perhaps posting this publicly will make all the symptoms go away, and I’ll wonder some day what I was so bothered about.  I hope so.  I’ll absolutely take feeling foolish in exchange for having her be herself again.  I’ll even accept never knowing why she’s been like this.  Just as long as we can put this forest behind us.

13 Responses»

    • #1
    • Comment
    • Thu 29 May 2014
    • 1309
    Nancy Massey wrote in to say...

    My heart is breaking for you all. Love and prayers.

    • #2
    • Comment
    • Thu 29 May 2014
    • 1322
    John Reid wrote in to say...

    Eric,

    I hope that you find your answers.

    My wife is a teacher and I’ll ask her if she has any thoughts as well, but I just wanted to personally wish you and your family the best in your pursuit for answers.

    In absence of answers there is always love.

    • #3
    • Comment
    • Thu 29 May 2014
    • 1347
    Carolyn wrote in to say...

    I wish that people could climb into each other’s hearts somehow and bring comfort. I wish, even more, that the pain wasn’t there to begin with.

    • #4
    • Comment
    • Thu 29 May 2014
    • 1444
    Hick Crone wrote in to say...

    We all wish for her spark to return.

    What you write makes me think of “the dwindles” in elderly folk. It isn’t something anyone wants to think could happen to a kindergartner. Does Rebecca seems upset by this change? Maybe it is a form of peace or rest or something she needs at this time.

    • #5
    • Comment
    • Thu 29 May 2014
    • 1504
    Dan Landrum wrote in to say...

    Eric,

    My heart too is breaking for you all. Maybe hope lies in continuing to get the word out. Perhaps someone will have had a similar experience and offer a remedy.

    Pray you find your way out of that forest soon.

    • #6
    • Comment
    • Thu 29 May 2014
    • 1541
    hawkse wrote in to say...

    Couldn’t it be some sort of post stress symptom showing up now that the p28 treatment seems to have had some effect? I can’t even imagine the pressure that poor girl must be feeling and holding it all together for such a long time takes tremendous amounts of energy. Now would be the time to recharge so hopefully that’s what’s going on.

    • #7
    • Comment
    • Thu 29 May 2014
    • 1554
    Doug wrote in to say...

    Not be selfish, but I do hope that being foolish cures something in this world. And I do hope Rebecca finds her way back soon. I think the side-affect of the P28 treatment sounds like a reasonable guess.

    • #8
    • Comment
    • Thu 29 May 2014
    • 1625
    Bunny Reynolds wrote in to say...

    I’m inclined to agree with the commenter who suggested a sort of PTSD. As I read your post, depression kept coming to mind. Rebecca has been holding things together as much for your sakes as for her own. Maybe she’s tired of acting like she’s not terrified. Seems like a tremendous amount for a six-year-old to have to bear. Do the people in Pittsburgh take note of her mental condition as well as the physical aspects? And, as you say, nobody really knows the long term effects of the treatments, perhaps on her mental well being.

    One grasps at every straw. I just wanted to mention that much of what you described sounds a lot like depression. My continuing best wishes for her and for you as you travel this road together.

    • #9
    • Comment
    • Thu 29 May 2014
    • 1754
    dj wrote in to say...

    Son, you have NOT described a child with depression or PTSD, rather one that is tired. Sleeping is not such a bad thing for someone who is tired or burdened. The moments of subdued “normal” are the telling point. It is not in a child this ages skill set to deceive and she means what she says. She will have innate instincts to make her words and actions count — perhaps even draw peace from sources unseen. Those around her can do well making those moments just as effective and memorable. It seems to me that you are – still – doing the right things in the right way.

    • #10
    • Comment
    • Thu 29 May 2014
    • 2326
    Stephanie Rewis wrote in to say...

    Eric, many years ago I was dealing with a serious illness. They experimentally put me on Interferon (sort of a chemotherapy… and depresses the bone marrow’s blood cell production over time). Now I have no idea what p28 is, or even perhaps what Interferon truly is. But I *can* tell you that one of the main side effects for me was exhaustion. Just overall bone and body tired. I understand your fear, but don’t rule out the possibility that she truly doesn’t feel like doing anything except laying around… and resting. And perhaps, that’s exactly what she needs to do so her body can use the energy it has to do the healing work it needs to. Love and hugs to you all…

    • #11
    • Comment
    • Fri 30 May 2014
    • 0454
    Prisca wrote in to say...

    oh Eric, how sad to read…

    My hear goes out to you all ~ I hope, from the bottom of my hear, that you and everyone who commented are right: your lovely Rebecca is exhausted and needs some slow time, to have a break from her usual energy.
    Her spark needs to recharge and she will be back.

    Sending you the warmest hugs and the most positive thoughts.
    x

    • #12
    • Comment
    • Fri 30 May 2014
    • 1519
    Roberta wrote in to say...

    Rebecca may simply be exhausted. Children need enormous amounts of sleep even when healthy, and maybe the trips, her anxieties, and efforts to have a normal school and family life are simply catching up with her. Maybe at night she doesn’t sleep as deeply as she used to, so she has less energy during the day. If she did manage to contract a virus back there, her body probably has to work harder than normal to fight it off. Unless her doctor sees a reason for concern, try not to panic over it, and let her sleep when she needs to. Hopefully her energy and alertness will come back. Still sending you all good wishes and prayers here.

    • #13
    • Comment
    • Sun 8 Jun 2014
    • 0034
    Caitlin Steele-Williams wrote in to say...

    This post is even more heartbreaking now, in light of yesterday’s events. You knew and she knew she was going, and you gave her the best of everything while you could. I would invent a time machine for your family if I knew how.

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