Stepping Out

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IMG_3574So the thing about cancer is you never really know if it’s gone.  You want to just lean back and soak in the good news and forge ahead with life – leaving the horrors behind.  But in a flash, you fear the dark head of its return out of the corner of your eye.  You watch the strange tip toe walking of your child and how she grips the back of her knees in pain.  Immediately your mind is scanning through the possibilities.  You assess the situation from every vantage point you can muster.  How is she eating?  How is she sleeping?  How is her attitude?  What could be causing the pain? Muscles?  Lymph nodes?  She told me once a few days ago the bottom of her heels hurt – is that why she’s walking that way?  Or is it the pain behind her knees that may somehow be alleviated by this tip toe walking?  She’s now on steroids and that seems to have made her more grumpy, or is she more grumpy because she is experiencing pain?  The cancer seemed to have spread to the lymph nodes behind her knees in the week before conditioning for transplant – could it be back and that be the source of the pain?  Well, she hasn’t said anything about the front of her knees hurting, nor the lymph node in her armpit – of course that one was radiated.  On and on it goes, your mind racing – your enjoyment of the evening tainted.

You see, we’ve had “no detectable cancer” before.  We’ve had four flow cytometry tests at zero percent from the first time she was treated for AML.  We’ve had perfect cytogenetics and morphology.  And it was still there – somehow the cancer still lurked, unseen.  So while I utterly rejoice at these glorious test results on Day +28 from transplant – all three perfect – bone marrow aspirate, morphology and cytogenetics – you know these are no guarantee.  And so, I am ever on the alert, always keeping watch over every detail, every nuance.  And already it makes me cranky and edgy and short with Sten.  My voice is not kind and it is hard to not focus on the fear.  “I can’t do this again,” I think.  “Please don’t make me go back there Lord.”  For no matter how much I continuously strive to surrender my life and yield to the Lord, whatever the circumstances, I still desperately want my child to live.  I say to God, “Father, your will be done, but oh please, let your will be that my beloved live.”  I know that the test results are absolutely no guarantee of the days ahead and I know that they do demonstrate an incredibly wonderous reality at one point in time.

I have prayed often in these last several months, that if we do get to bring Allistaire home to live, that God would show me the way to live differently this time – not so gripped by the crushing weight of fear.  As a mom, of course I attend to every detail of Allistaire’s well-being and this experience has given me cause to be far more attuned to her than I even naturally would be.  I have to speak for her, as she can only provide a three-year old’s voice.  She is largely unable to articulate the specifics of how she feels and I am left to be the interpreter.  Tonight I am wondering if we need to do some sort of scan to look at the back of her legs, but I really don’t want to – I really don’t want to see cancer there.  I’ve never been one to push away realities and look away, but man is it tempting.  I want to leave the hospital on Monday rejoicing and focused on getting through the next stages of healing from the transplant process.  But this is part of it, wondering and looking out for the cancer’s return.

As of today, Allistaire is off of all IV meds and is only getting IV fluids at night.  She has confirmed GVHD in her upper and lower digestive tract and as a result, is now on four additional oral medications. She has been getting Tacrolimus from the beginning as an immunosuppressant.  She is now on the low dose steroid, Prednisolone, which creates a body-wide, systemic suppression of the immune system to counteract GVHD.  Additionally, she is on Beclomethasone which coats the esophagus and stomach and Budesonide, which coats the walls of the intestine.  These are both essentially, internal topical steroids.  Omeprazole (Prilosec) is used to reduce the acid production in her stomach since she seems to have some evidence of reflux as well.  All total she is on 12 different daily meds resulting in twenty-two doses of medicine a day that she is required to take.  The additional meds help the heart and liver, protect against viral and fungal infections and Pneumocystis pneumonia, and provide a few additional necessary nutrients.  On the surface, Allistaire seems to have a robust immune system, sporting an ANC of 6092 as of her most recent CBC (Complete Blood Count).  Yet in reality, the donor marrow is still just getting established and some of the various white blood cells will not be up to normal, healthy levels for up to 6 to 9 months post transplant.  On top of it, she has immunosuppressant drugs to combat GVHD but which also have the effect of suppressing the production of a number of white blood cell types which are crucial parts of the immune system.  Some of the suppressed cell types include T and B cells.

As of now, we are scheduled to discharge on Monday, July 22nd.  Sten and I have been watching videos, going to class and meeting with the transition nurse to get all prepped on life outside the hospital.  There will be a lot of changes, not just from living for the last 147 days institutionalized, but even quite different from before Allistaire was sick – very different even from the last time she left the hospital after treatment.  All these changes warrant an entire post of their own, which will have to wait for now.  On Monday we will be given all her initial meds to take to our apartment at Ronald McDonald house and from now on she will have clinic appointments every Tuesday and Friday at Seattle Cancer Care Alliance in downtown Seattle.  Each clinic day she will have labs drawn and meet with the PA or Nurse Practitioner, the attending doctor, the nutritionist and often the pharmacist as well.  If she were to have a fever or any other significant change we would likely be readmitted to Children’s for an inpatient stay while they assess and treat her.

If all goes as smoothly as possible, with no relapse of her cancer and controlled GVHD, the absolute soonest we would be able to return home to Montana would be 100 days post transplant.  This puts us here in Seattle at least until October.  This is such a daunting thought, yet I constantly remind myself that returning in October with Allistaire alive and well would be an incalculable gift.  I miss home, boy do I miss it but it almost seems like a fairy tale place.  It is often hard for me to believe I really have a life there. I didn’t recognize my own driveway in a video Sten sent me of Solveig riding her new bike.  It is weird to have to ask your husband what your child is up to these days.  Five months ago today, I saw that I had a missed call from Seattle Children’s Hospital.  As I listened to the voice of Dr. Gardner asking me to call her back, I knew.  I knew that biopsy result had confirmed that Allistaire had relapsed.  My face and heart have never hurt as bad as they did that night.  I had seen enough the first time around to know what did and could lie before us.  That seems forever ago.  I’ve been home five days in five months.  Life before cancer seems forever ago.  I watched kids running across the grass this evening.  I watch their bodies moving, their mom along side and I wonder what it is like to not constantly fear what is going on inside your child’s body.  I have a healthy child.  I do know what it’s like and I don’t.  The wondering will now always be there with Allistaire.  Cancer casts a cold shadow once it has entered your life.  Even with amazing test results less than a week ago, I am left wondering.  Her bone marrow is clear but what about the rest of her?

The Lord broke down a mighty wall and expanded my borders.  Yet I still see walls, walls that define the contours of my life, walls that I grumble over and curse and in whose presence I cringe.  I have seen the face of my Father thousands of times, but still I must turn back to Him.  Hebrews 4, calls the child of God to, “make every effort to enter that rest,” the, “Sabbath-rest for the people of God.”  Such a strange admonishment to “make every effort,” to enter, “rest.”  Aren’t the ideas of “effort,” and “rest,” opposed?  What I know is that I do not naturally rest in the Lord.  What is natural for my flesh is to be at “unrest.”  I am prone to anxiety and listlessness.  I am prone to gripping my troubles in my own fists, turning them over this way and that, trying to find a way to make them into what I want.  I try to fancy up my walls, chisel in hand. Rather, I must choose to turn.  Sometimes I find it far too much for me to even slow the inertia of going my own way, that I might turn to the Lord.  “Help me turn to you, Lord.”

“Let thy goodness, like a fetter, bind my wandering heart to Thee.  Prone to wander, Lord I feel it, prone to leave the God I love.  Here’s my heart, O take and seal it, seal it for Thy courts above.”IMG_3492 IMG_3508 IMG_3517 IMG_3524 IMG_3531 IMG_3539 IMG_3557

9 responses »

  1. Love that rainbow! My prayers continue for sweet Allistaire and your family. Soldier on sister because you are an encouragement to so many. love, Terry

  2. Yes, that fear of relapse never leaves. It is insidious. Stay present. Enjoy the giggles closest to the present, for right now they are there. xoxo

  3. Yes, that has been precisely my thinking: one day’s good results do not equal a lifetime free from cancer. What about now?! What about… now?! I will pray for peace and rest for your heart, continued health for Allistaire, and renewed relationship for all four of you. My heart is so full for you, so ready for Jesus. Love you, Jai.

  4. I am an impatient person by nature. I don’t like to have things out of my control. It is a constant battle to give everything over to the Lord. Yet it is the only way! I hear your frustration. The shadow of cancer is such a real thing. It’s sad there is no guarantee, especially with all Allistaire has endured over such a long time. God willing, you will be reunited as a whole family in Bozeman with a healthy Allistaire as soon as possible. My prayers are to God to hold you up with his strength and to pray for Allistaire’s continuing journey into a real and lasting cancer-free life. My prayers are with you daily! I have long admired your dedication to and tender care of that sweet little girl.

  5. What a beautiful little girl. I’ve been following this blog for couple months and I continue to pray every day for Allistaire. I look forward to reading your blog because your writing is amazing. I have three kids of my own and I couldn’t imagine going through what your family is going through. You are a wonderful mom! God bless you with many many many beautiful years with Allistaire. I also follow couple other blogs about sick little kids and I saw this posted on one of the blogs and I thought id share it with you. I thought of you right away.

    God Bless You!

    Kimberly Potts

    http://firsttoknow.com/doctors-inject-hiv-into-dying-girl-youll-be-glad-they-did/?utm_source=o_fo&utm_campaign=doctors-inject-hiv-into–44917

  6. Hey dear friend, I mailed a little note to you at the hospital (Attn: Allistaire Anderson) just today (Monday, 22nd)…will it get to you at the McDonald House? It is just a little “thank you note”. I so hope you get it. I love you and your family and will keep you in my prayers. gayle

  7. I can’t even imagine the battle you have fought for your precious daughter and your entire family and I don’t know you or Allistaire but I feel led to tell you that I was with Terry Bobbitt in Israel and God would not let Terry rest til she had us all praying prayers of faith over Allistaire from that awesome place. You are so right in that we cannot put our faith in what doctors say but we can put our faith in the Word God speaks. My prayer is that you will be blessed to receive a Word from God that will give you such peace and confirmation that Allistaire is completely healed of cancer and that the memory of relapse will grow more and more distant–so distant that you will not feel the need to look back but the past will only be remembered from a place of great joy. Exalting the name of Jesus over the name of cancer. May He pour back into you His strength and give you all rest and refreshing! Sarah

  8. I am pleased and blessed to share with you, Jai, why I’m supporting your ride for cancer. Obliteride
    and research for cancer is the Christmas gift I’ve chosen to give my 16 Grandchildren this year.
    Several years before my husband went to be with Jesus, we began choosing something that would
    be pleasing to Jesus to give our Grandchildren each year. After all, it is His birthday, and He should be the One to be blessed and honored. I am continuing this tradition in our family. My
    Grandchildren will not find out what their Christmas gift is until December 25th! They will be thrilled!

    We have been following your blog about Allistaire and praying for all of you for some time and
    watching God work His miracles in Allistaire’s life. I was so touched by the Obliteride to obliterate cancer that I have chosen that as their Christmas gift for this year of 2013.
    My prayer is that Jesus is pleased with this gift and that by 2014 cancer research will have won &
    will be a thing of the past. We will all continue praying for Allistaire and your whole family for peace
    & her continued progress and to one day be free of cancer. God bless you every day and always
    remember “For This I have Jesus”. I will be praying for you on the ride! God’s speed.

    Sharon

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