Ever the Edge

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IMG_3803I knew a girl once who endured years of being raped by a male family member.  Even as an adult she could not get away from him.  Even hundreds of miles away, he found ways to let her know he was still watching her and could take her and hurt her at any moment he wanted.  Few believed her about what was going on.  This man had a position of power and she had to simply find a way to endure.  She found Christ.  The torture did not end, but somehow in the midst of it she lived, face turned to God.

How she endured and how she faced each day with this horrid malevolent presence, constantly lurking, I don’t know.  Our situations are very different.  And yet, there is a way in which, no matter how lovely the day, or how wonderful Allistaire seems to be doing, there is an ugly predator constantly threatening to swallow up my beloved.  She has been so utterly full of joy and delight the last five days.  She wants to play balloon fight with me and be chased around the apartment, squealing in glee.  She drives her stroller with Doggie in it everywhere and has been walking ever-increasing distances.  We walked to the hospital the other day and all through the mall yesterday.  She’s getting stronger on the stairs.  She’s happier occupying herself for chunks of time coloring.  She is my joy!  When I tell her she needs to hurry up, we need to be quick, we’re running late, she says, “Okay, I’m going to be quick like a human.”  I have no idea where she got this, but yeah, quick like a human, I guess you can’t argue with that, but it totally makes me laugh.  Today she tried some of my Trader Joe’s Pesto pizza with broccoli and tomatoes.  I spared her the big soppy hot tomatoes but gave her a slice with some broccoli.  “Mmmmm, nummy, ” she says, “but broccoli’s not my favorite snack.”  She makes me laugh all the time and her chubby tummy just makes me want to squeeze her all the more.  But there, always there, in the corner of every moment, is the reality that this might be a short-lived joy.  The bottom could drop out at any moment.

Today her ANC and platelets dropped since Friday’s labs.  On Friday her ANC was 8,410 and today it is 2,950.  Her platelets were 209 and now they are 117.  When Nathalie, the Physician’s Assistant, was about to walk out the door to get Dr. Bleakley for the remainder of the appointment she said, “Oh, and her labs look great.”  I asked to see them and immediately noted the two drops.  They are totally normal numbers in the context of where Allistaire is at in transplant, but it is how they compare to her last labs that is concerning.  Both Nathalie and Dr. Bleakley said that these drops are perfectly explainable by the meds she is on.  The steroids caused her ANC to sky-rocket, and we are now tapering the steroids, so a drop in ANC is reasonable.  In addition, she has now been on Bactrim for the last week that can also cause your counts to drop, though platelets a little less often than your ANC.  Lastly, she also is clearly having a GVHD response in her skin.  Her face is quite red and blotchy.  There are also red blotchy spots on her arms, inner thighs, tummy, soles of her feet, a bit on the palms of her hands and on the back of her neck.  GVHD is known to cause platelets to drop – not always, but certainly it is common I am told.  So while there are thankfully many reasons that could be causing the drop in her counts, the obvious biggest concern is that she may have relapsed, that the cancer might be growing.  While it is wonderful to have had good bone marrow results before, they really tell us nothing about the present.  Given Allistaire’s extreme high risk status, Dr. Bleakley decided it is just better to go in and take a look at her bone marrow to see what is going on.  “If it were any other kid, we would just wait for the Day +80 bone marrow test as scheduled, ” they tell me.  So tomorrow at 2:05 pm, she will be having yet another bone marrow test.  This means, more significantly, more days of brutal waiting to know the outcome.  Because the test is later in the day tomorrow, we will not get the preliminary (Flow Cytometry) tests until sometime on Friday.  Then of course, we must wait a number of additional days to get back the morphology and cytogenetics test.  Previously, I was told that rarely do the cytogenetics differ with the flow cytometry test.  Yet, in the last week or so, this very thing has happened to one of our friends – the child had a 0% flow cytometry  test and then the cytogenetics showed that there was a small percentage of remaining cancerous cells.  All of this to say, we just will have to wait.  As before, we will make known the results how and when we are able.

You just cannot get comfortable in this life.  The moment you do, it seems something comes seering into your view that reminds you, no, your life is not normal, your life is ever on the brink.  I think it was literally just yesterday that I was thinking about the fact that I haven’s cried in a while (in a week).  There hasn’t been anything too scary.  I haven’t needed to call out to the Lord in desperation.  Things were starting to go pretty smooth and actually pretty lovely.  Yes, I had the flash through my mind this morning – I saw myself stepping off the deck into the front grass to move the sprinkler in the morning.  I stood up and surveyed the view.  Bright blue sky, day already hot, the Spanish Peaks, snowless in the distance.  Then like a vice, I clamp down the memory.  I shut it off.  I long for a hundred thousand things.  But ever, ever, I must incline my face to this day, to this place that the Lord has me.  My heart ebbs and flows, sometimes buoyant, sometimes leaden and low, so weary, so very utterly sad.

On Saturday, as I ride those 25 miles in Obliteride, I don’t know what I will know then.  I do know two things: oh how desperately I cry out for some better solution, some medicine, some something to make my child well!  Please, please find a way to make it better.  Do it fast!  Figure it out NOW!  We don’t have time to wait.  And I cry out, Oh Father God!  Come back, don’t delay, don’t hold back.  Come back and put an end to this broken misery.  Make these horrors end!  For all of us!  Not because He is cruel, does he tarry.  He calls me to endure because there are yet those who haven’t turned their faces to His – they have not tasted His beauty and grace.  And so He says, “Dear patient, you who suffers long, you must endure a bit longer.  There are those who have yet to taste of My abundant life.  I will hold you in the mean time.  I will carry you.  I will be your strength that enables you to endure.”  As I have so many times before, I sit, spent, at His feet.  “Yes, Lord.”  I choose to keep turning my ear and my face to Him.IMG_3814 IMG_3818 IMG_3837IMG_3805 IMG_3822 IMG_3826 IMG_3841 IMG_3845 IMG_3847

6 responses »

  1. She is such a sweetie. I wish our girls could play together. You know, we saw counts rise and fall so often, especially those first 6 months. I used to drive myself absolutely mad analyzing lab print outs from one visit to the next. I took some comfort in something I was told though; that relapse is less likely with obvious signs of GVHD. It gave me small comfort. Allistaire’s new immune system is revved up and that is a good thing! I hope and pray that you will know sweet relief soon. The waiting is so draining. Hugs and love from afar.

  2. Oh, those cheeks. I don’t care how red they are, they are squeezable, nibble-able, kissable. And praying for peace reigning in your heart, today and always. I feel you: one good result doesn’t ensure future good results, but you get today, and I pray you enjoy it, Allistaire enjoys it, that all is lovely.

  3. Father God, I lift Allistaire into your hands once again. Father again I plead with you for there to be zero cancer found. In Jesus name I pray.
    Jai I pray for you and your family each and every day. I love you and miss you much.

    Love and Hugs from Kathy.

  4. Praying for Peace that surpasses, peace like a river and for the cry of your mama heart to be heard by the One Who loves so deeply. You’re an amazing mama and servant! -Cassie (Grace’s Mama)

  5. Good luck on your ride tomorrow, Jai. Thanks for keeping us updated, and you and your family are in my thoughts and prayers.

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