Deja Vu


So much is the same and so much is different.  This evening Allistaire and I drove to Seattle Children’s Hospital on a lovely, sunny winter afternoon.  This time there was only one little face reflected in the rear view mirror.  I know where to park and I spy Carolyn in her hot pink shoes, our first year resident this past month, as we walk in the entrance.  I greet Ronin’s dad in the elevator and Romona at the front desk.  Kim is our night nurse once again.  I rejoice to see little Faith actually pushing herself along with her own feet on one of the bikes and I cheer with her mom, Sang, at how much she has progressed.  Even before we settle in our room, we have to go see Piper who shaved her head with her aunt and grandpa over the weekend.  We are fortunate enough to be able to move back into our old delightful room with the river and colorful fish on the wall.  I gathered our goods from the lockers upstairs where we stored them while we were away.  I moved all of our things into the room, back into the old places.  I have my whole system down: 2 med cups for my night and morning medications, a pitcher of water and a cup, my glasses and ear plugs on the window sill by the bed, an extension cord that reaches by the bed so I can charge my phone and computer, a Trader Joes bag I pack at night so that I can just sneak out of the room in the morning to get ready for the day before Allistaire awakes, I lay out my pajamas and the shoes I wear around the hospital – my favorites – the old green Asics with the aqua stripe down the side.  I make my bed and know now to hook the fitted sheet around the base of the chair-bed to avoid cold drafts.  I remake Allistaire’s bed with 3 pink sheets, one on each side and one down the middle.  I set up her CD player with the relaxation music and put the framed picture of Solveig on the side table.  I put tape on the back of Allistaire’s sign I made for her door and secure it back in the same bottom left-hand corner.  Almost immediately, Allistaire wants to ride bikes and she picks out one of her favorites, the one with the red frame, yellow handle bars, green back basket and broken yellow wheel.  A boy passing by offers several times to help us with the bike – nope, I got this one, I know this bike well, I know just how to fix this wheel.  As we loop around the Unit we greet Nicki and Kassidae, Kiflom, Megan, and Briana.  In so many odd ways, we have returned home.

Yesterday morning I lay in bed in the delightfully, cold blue room at Sten’s parents house in Montana, not wanting to get up.  I knew that once I got out of the bed, all of the subsequent steps would cause me to walk away from my beloved Solveig, to fly away from the expansive peace inducing sky of Montana, to drive away from my sunlit house and all of my plants.  As I packed our things at our house this afternoon and watched Allistaire’s nuddy spin, her tubes flying out in the circle of her dance, I felt a little sad that we had to leave the life we had so quickly acclimated back to.  Yet, this trip to the hospital is almost completely different from that first trip.  We return to a world known to us – to sights and sounds, procedures and faces we know.  We are not surprised by the tiny purple bin we store our food in.  We know how to silence the alarm on the IV pump and that when ordering grilled cheese always ask for “cafe style.”  Andy drops off the snacks he knows we always ask for: 2 bottles of water, a few packs of Ritz and gold fish crackers.  I set out the diapers and wipes on the counter so the night nurse doesn’t have to rifle through the cabinet looking for them.  I wipe Allistaire down with the chlorohexadine wipes before putting on her jammies and place her diaper in the pink pail to be weighed.  As I type this Allistaire is getting her first chemo and I know I will now have to use gloves every time I change her diaper for the next eleven days.

Nearly everything is familiar.  What is utterly new is being in this place and having a pretty healthy daughter.  What is new is the knowledge that there is no detectable cancer, replacing the fear that previously loomed.  Allistaire’s hematocrit is 33.3, 30 – 40 being normal.  Her white blood cells are still a little low but far higher than when we first came.  Her platelets are 395 and her ANC is 1386.  Nothing is guaranteed but we are told that it would be highly unlikely that they would find any remaining cancer cells in subsequent bone marrow tests given the great results we’ve already had.  This means we should not expect Allistaire to need a bone marrow transplant.  She has officially been placed in the “low risk” category.

As I said before, it seems we’ve had it too easy and I wonder what it will be like interacting with the other families now knowing we don’t necessarily share that same foreboding, that same ache we try to hold at bay, that shadow that follows our day – the threat of death.  As in the beginning, I do not know what the Lord has in store, but again I sense Him urging me to stay alert, to keep my eyes open for what He is doing and want He may do in and through me.  A couple of years ago I despaired of life.  I had no intention of going out and ending my life but I was so weary of finite human existence that I just wanted to be done.  I knew that when death came, I would be with the Lord and that is ever so much better than the constant, unrelenting, monotonous struggle with one’s own sin, the sin of others and the incessant suffering I heard in detail about every day on NPR.  I despised life in between “the already and the not yet.” One day I was relaying my struggles to my mom and asking out loud what the point was of going on.  Her response was short and simple; something I’d heard a thousand times before, but somehow had utterly forgotten and disregarded.  She reminded me that my life is not just about me, but that I am to be a light in a dark world, the face of Christ, His hands and feet, voice and ears too.  It came to me as a shock to hear this and realize how far off I had been and how clearly I was only considering myself.  I find myself now in a place where I have been freed up in large part from my own burden.  I want to be that aroma of life described in 2 Corinthians and a star in the night sky as it says in Phillipians 2.  I want to be on the look out for how I may love, encourage, lift up, comfort, rejoice with, mourn with and be present with.  The Lord has opened my eyes to a whole new world and I feel the weightiness of the responsibility that comes with such a treasure.  Please pray that I would be sensitive to the Holy Spirit and know His leading.

Thank you to all of  you folks who have brought us meals and sustained our bodies.  Thank you for all of your prayers which have continued to bear us up.  Thank you to you who supplied airline miles so that I could spend four wonderful days with my sweet love, Solveig, in Montana.  We had a delightful time with each other and it was pure joy to blow her a kiss goodnight as I closed the door to her room each night rather than doing so over the phone.

Please be praying that these next 8 days of chemo would be effective at killing any remaining cancer cells in Allistaire’s body.  Please pray that her lines would continue to be infection free and that she would be spared from fever.  Praise the Lord for all that He has accomplished in little Allistaire’s body and that as we got out of the car tonight in the hospital parking lot she said, “Yay, Yay, Yay, Yay,” over and over and clapped her hands.

6 responses »

  1. GREAT post…love all the detail.
    And totally love this “The Lord has opened my eyes to a whole new world and I feel the weightiness of the responsibility that comes with such a treasure. Please pray that I would be sensitive to the Holy Spirit and know His leading.”
    woo hoo on so many levels!
    I love you and how this is shaping you 🙂

  2. I so much agree with Sam. That statement made me cry. One can feel the Holy Spirit all around you because of your sensitivity to Him. You’re answering your own prayer every day. And I thank you and love you too!

  3. God is amazing in SO-O-O many ways! Only He would know that I would need to hear today what I voiced to you some time ago: “That my life is not just about me, but I have been saved to be a light in a dark world, to be the face and voice and hands of Christ.” When I’m tired and not feeling 100% physically, it’s so easy to lose that perspective. I thank the Lord and you for that reminder today! And I pray for strength for you and for myself that we might with all sincerity echo Paul’s words: “I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me – the task of testifying to the gospel of God’s grace.” Acts 20:24

    I am praying for you, dear daughter, that you will be sensitive to the Holy Spirit and know HIs leading!

  4. As always I will keep you in my prayers. I glad that things are going much better. Before you know it you all will back home as family. Take Care

  5. I love the sign for Allistaire’s door… Too cute! Also, love Solveig’s smile… She looks so happy to be with mom! And the girl has great style with her little boots and scarf:). Praising God for the hope you have in going back to the hospital and will pray that he uses you there, which it sounds like He already has. Thanks for sharing, as always:)

  6. Oh, Jai, I love your heart for what God is doing in your life. I do pray with you for you to be sensitive to the Holy Spirit’s leading.

    Love you!

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