All I Want for Christmas is a Bone Marrow Transplant

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FullSizeRender-4Winter Solstice is passed.  The darkest night of the year is behind us.  Ever so slowly, at a staggering speed, we make our way back toward the sun.

I can hardly believe the earth has made an almost complete orbit around the sun since that day last January when Allistaire’s immune defenses dropped to zero and typhlitus nearly took her life and ravaged her heart, a heart already made vulnerable by so very many rounds of chemo.  There have been so many very dark days, so many tears, so much uncertainty, so many occasions where all appeared bleak.  And yet…I cannot begin to count the number of barriers overcome, walls knocked down, doors that opened.  I stand back and I survey the road behind us, it both tires me and brings elation, joyous shock, mouth-gaping awe.  The world is just as quiet and just as loud and busy and frantically running around, and I stand, I stand and look around me, and really, I cannot believe we are here.

It  is a grey day.  There is no snow to beautify the land, no hush of quiet, no blue light of early morning snow reflecting the sun’s advance over the horizon.  The earth shows no sign that it knows what has happened, what has transpired in this place.  I look back, back, back over forty-eight months, to a day when I sat in this very seat on a snowy day, back to the day I received Allistaire’s bone marrow results after her first round of chemo.  A zero percent, no identifiable Acute Myeloid Leukemia.  I felt such utter relief.  I could never have imagined how long the road would be before me, of the nearly five hundred days in the hospital that would transpire between then and now and just how sly those cancer cells would be, ever-present, ever ominous, ever intent on dividing endlessly until they foolishly commit suicide by taking the life of their very own body.

I look back, my heart and mind touching back over those points in which I was told, she probably won’t make it, her chances are so very small, in the single digits.  The weightiness of looming dark walls, the snarl of danger ever lurking, threatening to strangle.  We still stand in the dark, there are still looming walls and teeth flashing in the night.  And as I stand in this darkness, where there is so little light to make out the landscape before me, where the way forward is cloaked and unknown…I am smiling.  I want to go up to each person I pass and say, do you know?  Have you heard?  Let me tell you a story, a story of a little girl, little but fierce.  Let me tell you a story of terror, of heartbreak, of hope, of glee, of overcoming, of victory.  For no matter what lies ahead, today is a day of victory.  This day is a day of incalculable gift.

Sten and I sat with Dr. Summers as she went through paper after paper, our Data Review as it’s called.  We looked at the highlighted numbers that tell of the wonders within, of kidney’s and liver, of heart and marrow, of lungs and bones, of cells and antibodies.  Her marrow, so beat down by twenty-three month-long rounds of chemo, no longer produces almost any cells and yet, there is also no sign of her leukemia cells.  Her sinuses still harboring tenacious leukemia cells, many wiped out, but there is a clear remaining presence of this disease.  Her heart is not a normal heart, it gimps along but has made a marvelous recovery from the days ten months ago when it seemed right on the cusp of utter collapse.  In short, it is clear that there is no chance to cure her of her cancer without the most intense myeloblative assault possible, and while her body has incredible vulnerabilities due to all the ways it has been injured and weakened from her treatment, it has a chance to maybe, just maybe weather this storm.

Dr. Summers went through all the steps of the harrowing process before her, and of a plan, a collaboration of the Bone Marrow doctors, the Heart Failure cardiologists and the ICU staff.  This plan might look simple on paper but represents incredible teamwork on the part of these different specialties.   Today is not just a victory for our family, it is something for many people to be proud of, for it has taken the tenacity and compassion, and skill and brilliance of many folk to bring us to this point.  I thank in particular Dr. Marie Bleakley who has for so long been working behind the scenes to make this transplant an option for Allistaire, for Dr. Yuk Law and his wonderful team of cardiologists for constantly reconsidering Allistaire’s heart and how best to support it and build its strength, and for Dr. Todd Cooper along with Dr. Rebecca Gardner and Dr. Jessica Pollard, three incredible oncologists whose ability to straddle the research and clinical care of patients is impressive and have been directly responsible for helping to keep Allistaire’s cancer at bay for so long, enabling time for her heart to heal.  It is simply a gray and rainy day here in Seattle, Washington, the silhouette of evergreens, firs and hemlocks, and the delicate outlines of maples and madronnas, dark against the sky.  It is a quiet afternoon in the hospital, one day before Christmas, nothing to draw attention to how remarkable this day really is.

It has not been hard to call out to the Lord for help.  The words come easy and swiftly, “Help!  Hold onto me!  Hear my cry!  Mercy, mercy!”  But today I feel oddly mute, sitting in this quiet corner of a hallway looking out at a day turning to night.  What words?  What words Lord can I bring before you to say thank you?  I come before you empty-handed.  I sit down at your feet and just shake my head, in wonder, in awe, in delight. Thank you Lord.  Thank you Father, maker of the heavens and the earth and all that they contain.  I can say only, You are beautiful, I stand in awe of you, and I love you Lord, you are dear to me.

There have always been two fights, parallel, interwoven, side by side.  The fight of the flesh and the fight of the spirit.  Today is a moment of victory.  Today the door has been opened to transplant, of one more chance to eradicate the sickness within Allistaire that threatens her life.  Today marks the entrance to many more walls and doors and dangers, but it also marks the only possible way forward, the only hope for Allistaire’s life.  The fight of the spirit has always been that of Abraham, will I yield?  Will I lay all my treasure, all my hopes for life at the feet of the Lord and say, “This life of mine, this life of my child, so bound together, they are Yours.  You are God and all my days are for You to determine.  I yield.”  I enter the throne room of grace only because Christ has gone before me…He has gone before me that I am invited into the presence of the God of the Universe who actually loves me.  I am able to yield because He has so demonstrated His love for me in this, that He sent His only begotten Son, so that whoever believes in Him will not perish but have eternal life!  Perfect love drives out fear.  I can walk forward into the dark without fear, because no matter the days ahead, I know there is light on the horizon.  No matter the dangers, I cannot perish.  And should this transplant take Allistaire’s life instead of restore it, while we will miss her desperately, she will have been made whole and free.  She will live.

It is now Christmas Eve, a Christmas Eve like none I have ever known.  For the first time in my life I did not select a Christmas tree and delight in decorating it with Christmas music playing in the background.  I cannot think of a Christmas Eve that I have ever spent alone.  But for the first time in a very long time, I did not wake up sad.  We have a glimmer of hope.  The door to transplant has been opened.  Allistaire must make it 10 more days without getting sick or having some major issue come up in order to start the transplant process.  Next Monday she will begin the first of five “fractions” of focal radiation to the tumors/chloromas in her sinuses.  She will then have New Year’s Day and the weekend off before officially starting the transplant process on Monday, January 4th with TBI (Total Body Irradiation).  Once you begin the actual transplant process, there is no turning back.

Ten days.  In the scope of things, a short bit of time, but an enormous amount of time in which something could go wrong and this open door can go swinging shut again.  But tonight I go to bed with joy curled up in my heart, joy to have been allowed to walk this far forward and hope for more open doors.  Tomorrow is Christmas.  Tomorrow is the day we celebrate the birth of Jesus Christ.  Tomorrow is the day that changed everything.  The birth of Jesus Christ, Immanuel, God with us, is the basis for our hope that no matter the road before us, there will be beauty and redemption and life.

14 responses »

  1. Praying for 10 days of no sickness for Allistaire. Praying that she makes it to January 4 with her body as healthy as is possible before starting TBI. Oh that she could have the transplant and that it’s a success. I’ll be praying for all of this, Jai.
    With love…

  2. Praying, praying-I just read Christ can bring peace into any situation. He can- if we let Him- let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful. Colossians 3:15. That verse summed up your blog to me this morning. With love

  3. Oh, Father you have done exceedingly ,abundantly ,above what we could even think possible. We praise you! Now Lord we ask for your path to be made straight for Allistaire’s transplant. Oh, keep her in the palm of your hand,may her health,hold so that her little body is able to tolerate the brutal path that lies ahead. Oh, Father be merciful to her. Remove all fear,for fear is not of you. We thank you ,Lord, for you are the all powerful one. The one who rose from the dead, you are the one who holds Allistairs life in your hand. We can trust her with you.we give her to you, asking for her life, but Lord, you know best, so we ask for your will to be done..and Thank you for what you are doing.and may you , give your perfect peace to all of her family at this time of waiting once again to see what you are going to do. They love you Lord.

  4. Praying daily for allistaire’s health as she faces this transplant. Praying for God’s peace to continually dwell within you and your family as you face the coming days.

  5. Monday is my birthday Jai and there is no better present I can imagine than to know Allistaire’s door to BMT has been formally opened! If you or Sten need anything we’re but a short drive over the mountains! Our home is always open to friends/family traveling to Seattle who may need a rest. Merry Christmas. Go Allistaire; you are amazing!!!!!!!!

  6. What shall I render to the LORD for all His benefits toward me?
    Psalm 116:12

    Jesus did many other things as well. If every one of them were written down, I suppose that even the whole world would not have room for the books that would be written.
    John 21:25

    Keep writing them all down, Jai…
    Keep writing His Mercies down for all to see..
    They lead us all to Worship!

  7. Jai how beautifully said. Wish I could get my thoughts and feelings to flow out of me like you. You and Allistaire have been on my mind and in my heart nonstop since I saw you last. Thelma and I pray our little hearts out every night, and Allistaire is ALWAYS mentioned. We will continue to pray and keep you close in our hearts! We have hope.
    Mandy

  8. Hi Jai. You don’t know me. I’m a friend of Sue Batastini. But, I have been reading your blog for several years. I don’t subscribe to, or read any other personal blogs. Your updates stop me in my tracks, and every time I weep. Tears of joy and sorrow with you. But always, always, I’m inspired by you. And my faith in our Heavenly Father is strengthened.

    I donated to obliterate. And I intend to submit myself into the bone marrow registry. But mostly I pray. And I share your writing with anyone who needs encouragement.

    Recently my husband asked me if I had any earthly heroes. I said you.

    I know you’re on the precipice of Alistaire’s TBI. As a fellow mother (Molly 5, Jane 3, Arthur 1, and a baby on the way), and sister in Christ, I thought you might like to know that I am praying hard for Alistaire’s healing, and your peace, tonight.

    In Our Redeemer,

    Heidi McFadden

    Sent from my iPhone

    >

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