More Cancer, Yeeha!!!

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IMG_2554How many times can you hear that your child has cancer?  More than I knew.  But, today when the doctors relayed the news that the issue in Allistaire’s leg bone is definitely a leukemic infiltrate, I rejoiced.  Yes, Allistaire’s cancer is on the move.  Her lymph node in her left arm pit is now noticeably larger and causes her some pain.  It had been kept at bay for the last three months but has now risen up.  And now we have confirmation that it is in her leg.  Yet, all these are not closed doors to transplant.  No bacteria or fungus has grown, and for that I am unbelievably thankful!  There is now in the air a sense of fervor that we must get her to transplant.  I feel a bit of the pressing force of inertia as we accelerate forward.

Yesterday was another long day of no eating or drinking for Allistaire and she did a lot of lying around with intermittent dozing in our arms.  The whole afternoon was spent at the University of Washington Hospital Department of Radiology and Oncology.  Everyone we encountered was very kind.  Dr. Ermoian and his team explained their plan for Allistaire and what we can expect.  Allistaire’s armpit and knee will have proton radiation therapy.  The charged protons will rip through the DNA of the cells and bring about their death.  Fortunately, and amazingly, cancer cells are really not so good at repairing their DNA, especially when both sides of the strand are torn.  Yeah!  So, healthy cells should be able to regenerate, but not the cancer cells.  But this is not as black and white as we’d like.  The location where Allistaire’s leukemia is in her leg is right at the growth plate.  There is no doubt that Allistaire’s left leg will not grow ultimately, to the same length as her right leg; to what degree, no one can know.  And while there should be no real immediate side effects other than fatigue and redness of the skin that is radiated, there is also increased risk of cancer in each area exposed to the radiation.  In addition, her bone will always be a little weaker there and slightly more prone to fracture.  In her back they will be using electron radiation therapy because the area they are treating is much more surface level and they don’t want particles that are as likely to continue on through her body and damage her organs on the other side of the location on her back.  They anticipate it being possible that a bit of her lung, her ribs and part of her spine may be hit.  Where it hits bone, there will again be decreased strength, increasing potential for future fractures.  They are hopeful that because it is such a small part of her lung that could be hit, that we won’t see any concerning issues. Clearly, we are thankful her leukemia has not shown up outside her marrow in places much more sensitive to the damage caused by radiation, but we really must pray that nothing new comes up between now and transplant.

For the radiation simulation, Allistaire was put under and then positioned in a strange blue foam bed that creates a form or cast of her body position so that every thing can be aligned properly between the areas they want to radiate and the settings on the computer.  They simultaneously use the CT scan to provide images of her chloromas inside so they can position her body and line things up.  So now she has some very precisely drawn cross-hair targets on her leg, armpit, and back.  She also has two lines on her torso to help align her body.  We were given specific instructions as to how to keep them safe for Wednesday’s first dose.  Some kids actually have these points tattooed on their body and I suppose they may ask us about it, but they haven’t so far.  All the information and calculations they gathered on Friday will be given to the Dosimetrist who uses the 3-D images of Allistaire’s body to determine exactly how to shape the beams of radiation, finalize positioning and the doses of radiation to be administered.  We begin on Wednesday, May 29th.  She will have radiation each day, except the weekend, and finish on Tuesday, June 11th.  Fortunately we are scheduled everyday at 8am which means an early start to the day but also, not so much hardship from being unable to eat or drink.  Also, Dr. Ermoian told us that fortunately AML is sensitive to radiation, so we can expect Allistaire to have some relief of the pain in these areas.

Our time ended with news we did not to anticipate.  We were given a tentative transplant date.  I was in the bathroom when Dr. Ermoian came by to drop off the radiation schedule.  Sten handed me a piece of paper with a calendar showing all the dates of radiation.  There in blue ink in the little box for June 18th, was written, “Tentative Transplant Date.”  What beautiful shocking news!  To see those words, the words spelling out in blue the event, the action in which all our hope is placed.  Unless God sees fit to intervene with a miracle, a bone marrow transplant is Allistaire’s only hope and there it sat in blue.  The storm has just been raging so long; the wind buffeting my ears and whipping my eyes, but there, there you think you see a bit of light in those heavy steel clouds.  Could it be?  Could it be there far off, the storm is beginning to break just slightly?  Oh, how I hope so, how I desperately hope so.

As we drove back to Children’s Hospital, I spoke with Lisa Getzendaner, a physician’s assistant whose job it is to coordinate the actual procurement of the cells from the donor in conjunction with the timing of the conditioning for the patient.  She has put into action the requests she needs to make with the European registry and we should have more firmed up info by Wednesday or Thursday next week.  So at this point these are all tentative dates.  Given our radiation schedule and the time it takes to make arrangements with the donor, the plan is for Allistaire to begin her conditioning chemotherapy on Wednesday, June 12th.  The first day she will get Clofarabine.  The next four days she will receive both Clofarabine and Busulfan.  Then she will have a day of rest which allows for remaining chemo to wash out of her system.  On this day of rest, on the other side of the planet earth, the donor will have their bone marrow stem cells drawn out of their blood.  Then an airplane will fly over the north pole and land in Seattle.  Within an innocent looking cooler, bags of cells will arrive at the hospital, and be hung on her IV pole.  The lines will connect and in that moment, some other person’s capacity to produce life blood will enter my child’s body, to rescue her, to save her from the certain death that would otherwise come from the final death of her own bone marrow.  Between 80 and 160 million cells will infiltrate Allistaire’s body. Hopefully they will set up shop and start to produce blood cells for Allistaire within 2-3 weeks.  Engraftment typically occurs sometime around day 18.

With mixed trepidation, hope and joy we walk forward.  We cuddle with Allistaire.  We listen to her adorable tiny voice and watch her eyes as she strives to express her thoughts, needs and desires.  We kiss her bald fuzzy head and plant kisses on her wee ear lobes.  We hold her warmth close to us and run our hands across her smooth beautiful cheeks.  We cherish her and soak her in.  We surround her and love her and hope for her.  Father, thank you for every open door, even if it means more cancer.  We continue to walk forward until you block the path and close the door.  Thank you for all the outlandish ways you have provided so far.  We step incessantly into the unknown.  My eyes fixed on you Christ.

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11 responses »

  1. Crying tears of joy and tears of pain with you. Praying with all my heart and picturing your hunt for specially made shoes with one platform heel for her wedding day years from now, in the hope that sheer force of will, will strengthen those prayers. Please kiss your precious girl for each of us. Sending our love.

  2. Praying for the best days possible between now and the date of transplant and the engraftment, continued health of the donor and the miraculous bags of hope and promise coming from afar! Praying most of all for Allistaire and her enduring strength and spirit. Praying for the Lord God, Jesus Christ to give you all the shelter from the storm you face. It will not an easy journey, but prayers as you traverse this wilderness. Remember the 23rd Psalm! God bless you all!

  3. As much as it pains me to read your posts, as I am normally left soaked with tears and sinuses painfully plugged, your words inspire me. My husband and I pray so fervently, every day for Allistaire, and your family. Every day, through out the day my daughter Markelle who is also three asks if God has healed her yet and then she prays in her beautiful, simple, child-like ways. As I pray the Scriptures for you all I am comforted in Isaiah 59:1 Behold, the Lords hand is not shortened that it cannot save; nor His ear heavy that He cannot hear. Isaiah 65:23 they shall not labor in vain, nor bring forth children for trouble; for they shall be the descendants of the blessed of The Lord, and their offspring with them. It shall come to pass that BEFORE they call, I will ANSWER and while they are STILL SPEAKING, I WILL HEAR. He has seen the beginning from the end and while His ways are beyond our searching out I am inspired by your willingness to believe that through all your trials, you have tasted and seen that The Lord is indeed good. I agree with you that we are certainly given in this life more than we could possibly bare, and that is where the Divine meets us with indescribable grace. And though I can’t imagine myself handling such a scenario the way you do, I am inspired that to seek the face of God is for the believer, peace in the midst of the unthinkable! Jeremiah 33:3 call to Me, and I will answer you and show you great and mighty things which you do not know.
    Thank you for sharing your journey and giving us specific requests to pray about.
    In Christs Strong Love. Kam Johnson

  4. So, so thankful it is not fungus!!! Praying as things start to move forward for all of you. ((hugs)) and continued prayers.

  5. To Allistaire’s Family,

    I began reading your posts through someone’s post on Facebook. I can’t remember who, or how exactly I came about reading your written statements of Allistaire’s progress. I know that it was not by accident that I began reading them. My heart is so moved for this beautiful little girl and your family. I am a mother of 4 and a grandmother of 2 and cherish my children beyond words. I am also a professional counselor that works with children and families daily. With that said, my heart is filled with hope for Allistaire. When I read what you so eloquently write, I find my eyes flowing with tears and my heart full of emotion. I have been praying and know God hears all our prayers and is faithful and just to answer.

    I am not one to respond to things online, but feel compelled to send this to you wanting you to know I will continue to pray for your family. I believe in the power of prayer and know God is in the miracle business.

    Thank you for being such a strong witness of faith and love through unimaginable difficulties. You have a beautiful family and a God given gift for writing. A blessing.

    In Christ’s sustaining Love and Grace, Chris Storrick

  6. Thank you so much, Jai, for all the time you take to share the scientific detail of this whole process. It is amazing to learn about it all as we travel it with you. When you spoke of the donor across the world giving his life-giving cells to Allistaire, the process moved me deeply and brought tears of sheer joy to my eyes. That this is even a possibility to those with cancer is miraculous in and of itself. And the beauty of such a gift is incredible. Thanks for making it so real to me.

    Love you sister.
    Christy

  7. My name is savannah. I am 8 years old. My granny Robin (Mrs. Gartin) use to be Allistaire’s Bsf teacher in the infant class I have been praying for Allistaire for over a year every night. I hope she will get better. I will keep praying for her. love savannah.

  8. My mind does a double flip when I say I am rejoicing with you, at first I was not sure how to rejoice for cancer, but then I realized that by it being cancer it is not fungus, YEA, I will be praying each and every day that nothing can happen between now and transplant time to hinder the process.
    I am in wonder that they can fly the blood from across the world and give Allistaire a chance at a new leaf on life… I am learning so much about this kind of cancer as you share your Family’s journey with us, yet I am also learning a lot about faith, trusting God and Love from Your family. Thank you for letting me be a small part of this all.

    Much love, many hugs and daily Prayer

    Kathy

  9. Jai,
    You & your family have been so near in my thoughts this weekend.
    Last year over memorial day we were skiing the bear tooth pass with Sten & he told me of Allistare’s fight with AML, his new job & your big move to Bozeman. My goodness!
    I learned of Allistare’s relapse when Jessica, Peder & Haaken flew back to Seattle to meet you just a few weeks ago.
    I’m reading of your journey for the first time tonight, but I am utterly humbled by your courage & faith.
    A mentor once told me – look for Christ in your life, in the people you meet, in the places you go – & you will surely see his face.
    Your witness is nothing short of beautiful. I’ve seen it in you, your children & your extended family. It blesses those with light that can not be mistaken.
    Thank you for sharing Jai.
    My heart felt prayers are with you, Sten & your girls.
    Many Montana hugs,
    Laura & Baldwin Goodell

  10. It is SO wonderful to finally be reading this awe-inspiring account of our LORD’s presence in your lives! We too, are crying ‘lots’ each time we access this blog! John and I are both in BSF with Terry and Kathy, and are definitely blessed to be so.. I, Sheila, deeply appreciate your thorough way of connecting us out here to you over there!!! May our Lord bless you and keep you!!! (as we know HE so wondrously does out of his infinite, matchless, irresistible LOVE!) THANKS YOU SO MUCH, dear ones!

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