Let’s go Plerixafor, Let’s GO!!! (think cheerleaders)


Allistaire with PapaIMG_0110

photo-11The top picture is from December 17, 2011 just days after beginning chemo for the very first time.  My pops, Terry, is holding her.  The second pic is from exactly one year ago when we got to go home to our old house in Kent, Washington, after getting chemo for the third round and waiting for counts to drop and rebound.  The last one is from today.

The room has taken on a soft lulling…steady swish of the IV pump infusing fluids, the quiet whirring as though of gentle gears pushing the chemo into her line.  The ventilation system like a background wind in the trees that never ceases, with an overlay of the relaxation music from the 3 CD pack I purchased at Target, now nearly sixteen months ago.

Today has been a hard day for Allistaire.  She awakened to having thick cream put on the tops of both hands and the inside of both arms, then wrapped with Press ‘n’ Seal and wound with Coban.  Heating pads were placed on all four places and already she was tired.  Next came the IV team who succeeded the first time in placing an IV in Allistaire’s left hand.  Her little cries of pain and for help were adorable and pitiful at the same time.  Next came an infusion of Zofran to help with nausea.  Blood was drawn from her Hickman catheter to get base line tests for the clinical study.  At 9am the Plerixafor, in whom we are placing great hope, began to flow through the IV in her hand.  As the clinical study stipulates, within five minutes of the Plerixafor infusion completing, more blood was drawn.  This was done again at 30 minutes, 1 hour and 4 hours post infusion.  In the meantime Allistaire had me trying to force granola bar and Miralax infused apple juice into her and the CNA trying to get vitals and a weight for her.  In came the guy who cleaned the room and the child life specialist.  At rounds I counted at least eight people standing in a semi-circle around the bed.  Her fluids were bumped up to help deal with tumor lysis and more labs were drawn for the study and for a variety of lab levels they look at to track tumor lysis.  Then it was time for Allopurinol to reduce uric acid levels resulting from tumor lysis and a dose of eye drops to minimize side effects from her chemo, Cytarabine.  At long last it was 1pm and two nurses in special blue gowns and protective eyewear, came in together to hang her chemo, which runs for an hour.  Etoposide follows for an hour with vitals at the beginning and half way through.

Throughout all of this Allistaire has seemed very tired today.  She has not gotten out of her bed and numerous times said she was ready for her nap.  There has been a lot of crying and quaking in fear.  It seems too that a number of the blood draws have bothered her; likely due to the cold saline that is part of the process, which she can feel going into her line and may taste in her mouth.

Today has also brought the sweet thoughtfulness of others including a gift from Caden’s mom, Pam, and gifts from little man Liv, and his mom Irena.  The latter are our newest friends here and are here for chemo because of Liv’s relapsed ALL (Acute Lymphoid Leukemia).  It is so humbling and heart warming to have those close at hand acknowledge the significance of today – another try, another gift.  No one thinks they want chemo until they need it, until this poison is their only shot at living.  We invite in the poison and ask it to use its destructive powers for good.  I thank God this day for chemotherapy – for a means to destroy the destroyer.  Every single day that we open our eyes to one more day of life is pure gift.  We tend to have eyes that fixate on what we keenly feel is lacking, to the great disregard of our absurd abundance.

This is the day that the Lord has made.  Let us rejoice and be glad in it!

The night will be pretty busy as well.  At 8pm Allistaire had vitals, followed by Allopurinal, Fluconozole and eye drops at 9pm.  Her antibiotic, Cephapime, will run from 10-10:30pm.  At 12:30, she will again get eye drops, Zofran and vitals.  The next dose of the chemo, Cytarabine, will run from 1-2am.  Four am brings eye drops, vitals, lab draws and ethanol locks for her lines.  By 6am it’s already time for Cephapime again.  Then tomorrow starts with Zofran for nausea and Plerixafor at 9am.  All of the extra lab draws of today will only be repeated on Friday.

As I said, Allistaire has had very, very low energy today.  She never got out of her bed and mostly laid flat. She only ate half of a granola bar all day and had maybe 8 oz of fluid.  She definitely seems sick – as though she has the flu.  The leukemic blasts in her blood were about 4800 yesterday and nearly doubled today to around 8900.  It is hard to see her so down, but on the other hand, I have to say this is the first time she has ever truly acted sick in all the time she has been treated for her cancer.  In fact, Allistaire has never thrown up.  Amazing and something I am SO thankful for.

Your prayers, spoken to our Lord and written to us, continue to encourage me and hold us aloft.  Thank you too for all the sweet cards, drawings from your kids, gifts and photos.  We do not at all feel alone in this – on the contrary, I am continually amazed at the beauty and bounty of the body of Christ and all those who seek to love us through this.

7 responses »

  1. Let’s go Plerixafor and let’s go chemo! Do your job and take those leukemia blasts out and down! We are sending our love and energy.

  2. I found your blog because someone who went to Master’s with my husband had linked a post to facebook. I just wanted to let you know that our family is praying for all of you. Your sweet girl has captured a place my heart. We pray for her daily. Thank you for sharing all of the details about what has been going on and how God is working through it.

  3. Thank you for the detailed update. Sweet girl. Blessings on her, curse the blasts, blessings on you and Sten and Solveig. My heart is with you.

  4. I am praying today for God to heal through this medicine. I pray for Allistaire’s little heart- that she would be calm and without fear. I pray for you and Sten that God would continue to bolster you, to carry you, and to make His promises real to you.

  5. Down with the blasts! Let’s go Plerixafor!! Praying and praying…

    Psalm 27: 13-14
    I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living.
    Wait for the Lord;
    be strong and take heart
    and wait for the Lord.

  6. Our family is praying for all of you during this time. For strength when none is left, for peace when your mind rages, for small moments of joy amidst all of the pain, struggle and uncertainty. We will also be praying for you and Sten’s marriage as you battle this in different ways and in different places. God is greater than all of this…even when we don’t understand.

  7. Jai….you don’t know me but I too was a case manager at UGM with Jen Weiss. I want you to know that I am praying for you. Our story is different, we adopted a little girl (Georgia Mei) from China and she has a serious heart defect and struggles a lot. I actually had lunch w/ Jen at Children’s while Georgia was admitted for open heart surgery. Our roads are different but some of the hallways we walk are the same. I am praying for you….

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