One Year Post-Transplant Long Term Follow Up

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IMG_9471“The peace is partly in being free of the suspicion that pursued me most of my life, no matter where I was, that there was perhaps another place I should be, or would be happier or better in.”         ~Wendell Berry

I went to see, “A Fault in Our Stars,” the other day. I wanted to see how Hollywood would portray pediatric cancer, this time in a group of three teenagers. One line stood out to me. Hazel Grace, one of the main characters that has battled cancer since she was 13, said something along the lines of, “I just don’t want this particular life.” I get that. How many times have I looked out over the landscape of my life and these gut wrenching circumstances and thought, “Can I just trade this life in for another?” This is definitely not the life I envisioned for myself.

Why subject myself to two hours of woe? Why do I need to watch cancer ravage more lives, even if they’re fictional? I knew my heart would be battered again but I find myself at times willfully choosing to thrust myself into the midst of a sad story, not for some masochistic desire for sorrow, but really, for love. I have a hypothesis. If we cultivate our imagination, we increase our ability to empathize and demonstrate compassion, and thus, to ultimately love better. One reason I delight so in stories is that they put me in the place of a person I can never be. I will only ever live one life. But stories craft a world for me that allows me to enter in and see histories and places and lives that are out of my reach, that are foreign to me. In stories I am offered a view through someone else’s eyes and I can begin to grasp the joys and wounds of another time and another place. We moved to Montana in part for our girls to have more opportunity to cultivate their imagination. How wondrous that rock and stick and hill can supply such grand stories. How even more fantastic that imagination can make our hearts swell with compassion as we imagine ourselves in the place of friends and family whose beloveds have been shot down in yet another school shooting.   Empathy drives compassion which in turn produces acts of love.

Perhaps I am in greater need than the average person to cultivate this need for imagination driven love, for I am actually quite poor at loving well. I lit into Sten the other morning, going on and on about how I couldn’t stand the smell of his after-shave. When I saw the wounded look on his face, compassion did not rise up, defensiveness did. When I berate Solveig for some failing, what I have so often failed to do is put myself in her shoes, imagine life from her sweet 7-year-old eyes. I rage and bellow because I see only from my finite perspective.

I wonder too if imagination might aid me in faith. There have been quite a number of points over the last 3-4 years that I have surveyed my life and wondered, “Hey God, I’m not really sure how this is/was a good idea.” “Hey God, really? This is your grand plan? You think this is a good way to go?” “If you’re in control, why would you let this or that happen?” God calls me to trust His word, His promises. He calls me to walk by faith. In the book of Hebrews it says, “Now faith is confidence in what we hope for and assurance about what we do not see…By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.” God is up to something. The creator God is creating something out of this little life of mine. What will one day be visible is not visible now. What will be seen is not made of what is now visible! God gives glimpses in His Word of what will one day be visible, of the bounty He promises when His plans are complete. God has given me glimpses of how He has and is using these tedious and brutal days. My imagination for what may be, fuels my faith to rest in His promises.  I am banking on the hope that there is more to all this than I can see.

One year ago, I could not have imagined Thursday, June 5, 2014. It was my birthday. I turned 39 and I got the most phenomenal, glorious gift I could ever ask for in this temporal life. One year ago, Allistaire was undergoing daily radiation and then eradicating chemotherapy in preparation for her bone marrow transplant. A year ago, I sat across from Dr. Dahlberg who started our meeting by saying that what we should be talking about is how there is nothing left for Allistaire, how a bone marrow transplant would give her a less than 10% chance of survival and therefore, it wouldn’t be offered to her. A year ago, her cancer had spread to eight places outside of her bone marrow and suddenly halted. No organ was touched by leukemia. A year ago, we were wading into deeper and deeper unknown and desperate, desperate hope that somehow, some way this clinical trial for transplant without remission provided through Fred Hutchinson Cancer Research Center, would save her life. A year ago, I had wondered countless times what the Lord was up to.

As I sat across the conference room table from Dr. Carpenter, in a small room looking out over Lake Union, I could not have imagined this day would ever come.

“It doesn’t get better than this,” he said. Oh how I cherish and savor those words and run them over my mouth and mind over and over, in shocked, joyous exaltation. “It doesn’t get better than this.” On Monday, June 2nd, Allistaire had 11 vials of blood drawn for a phenomenally long list of tests. In the following three days she had an echocardiogram, an EKG, a bone marrow aspirate, a skin biopsy, a CT and saw the cardiologist, the physical therapist, dentist, ophthalmologist, nutritionist and the oncologist. Every single test, everyone, was good. The flow cytometry test showed zero percent detectable leukemia, or as the pathology report reads:

Interpretation

Bone marrow, aspirate: No abnormal myeloid blast or monocytic population identified (see comment).

Comment

There is no immunophenotypic evidence of residual acute myeloid leukemia by flow cytometry.

Clinical

4 year-old female with history of AML.

Immunophenotyping by flow cytometry after lysis of the erythroid cells reveals that the white blood cells consists of .34% blasts (CD34+), 77.4% maturing neutrophilic forms, 5.4% monocytes and 13.1% lymphocytes.

This is how the Lord shouts His good gift to me, in these strange, wondrous words that delve the marrow of my child.

The cytogenetics/FISH report says this:

Result Summary: Normal female karyotype; No evidence of MLL rearrangement by FISH

Interpretation: These results are consistent with post-transplant disease remission.

The chimerism test showed 100% donor cells!

Her heart is functioning normally and is not dilated. Her kidney function is normal. Her liver function is normal. Her strength and flexibility are normal. There is no evidence of Graft Versus Host Disease (GVHD) in her skin, mouth, eyes or anywhere!

Her lungs show marked, significant improvement since being on steroids for the last 3 weeks for her Cryptogenic Organizing Pneumonia.

Even her immune system, her “immune reconstitution,” as they call it, is doing amazingly well! Dr. Carpenter said that he was impressed at how well her various cell types are doing. A number of her white blood cell types are at totally normal levels. Others are better than the average person one year post transplant – even despite 7 months of chemo after transplant. I cannot tell you the phenomenal number of details they looked at in assessing Allistaire but the sum statement is:

“It doesn’t get better than this.”

Yes, there are down sides.  Most specifically, the targeted Busulfan, one of the chemotherapies that was part of the conditioning for transplant (as in the napalm of chemo), has most likely had a very toxic effect on her ovaries.  This means that we should expect that she is infertile and additionally, because her ovaries may not be able to produce hormones as they would were they healthy, she may have delayed puberty and need hormone replacement.  On the other hand, this particular clinical trial transplant did not include TBI (Total Body Irradiation) as the originally planned/standard transplant would have.  What this means is that her body was essentially saved from a nuclear blast and that her pituitary gland and thyroid have been left largely untouched.  TBI would have opened the door to a whole host of awful “Late Effects” as they are called.

Dr. Carpenter is such a professional that the meeting was fairly low-key, but inside my mouth was gaping and my heart was racing around doing little giddy twirls.  Thank You Father God!  I could never have imagined such a day.  Oh I hoped for it desperately, but in a way, for a long time, I didn’t even allow myself to look this far down the road. But here we are.

A few days ago I took Allistaire in for her first set of vaccinations.  All those many rounds of shots from infancy were wiped clean gone along with her marrow during transplant.  At this point she can begin getting all of her vaccinations with the exception of those that include live viruses, such as Measles, Mumps and Rubella.  For these, she must wait for one year once she is off all immune suppressants (steroids).  And as a little side note for those who have not or are considering not vaccinating your kids.  There’s a lot to say on the subject, but one point to consider is that there are those like Allistaire who simply cannot be vaccinated.  They are left exposed, without defense, to horrifying diseases that can cripple and kill if contracted.  When every child that can be vaccinated is, it tremendously reduces the likelihood that a sweet girl like Allistaire who cannot be, will ever be exposed to these awful diseases.

As we drove into town to go get those dreaded shots and Allistaire’s eyes welled with terror and tears, I found myself attempting to explain to her why these shots were worth it and why she needed them.  I told her about the strong medicine that killed the blood in her bones so that it would also kill the cancer that lives there.  And then I began telling the tale of how a woman, my own age, on the other side of the planet loved her, even though she has never known Allistaire.  How this woman was willing to endure the pain of shots so that her bone marrow would release those magical stem cells into her peripheral blood and how yet another needle pierced her skin, this time to collect those cells.  An airplane crossed over the North Pole where Santa lives and landed in Seattle.  Then a truck picked up the little white cooler that held the cells and eventually they arrived at Seattle Children’s and I found myself walking down the hallway behind that swift, purposed woman who carried the cooler, all the way to Allistaire’s room.  I was crying as I told Allistaire these details and of the color of cells in that little bag and how they hooked the line to her tubies and the stem cells flowed in.  I am still so humbled that this woman who doesn’t know us, would love us so tangibly.  Perhaps she was able to imagine that there might be someone on the earth that would one day desperately need what she was able to give, and so she determined to join the bone marrow registry in her country.  Thank God for imagination.

It is Friday the 13th.  Quite a good day really.  In five days it will have been one year since that joyous and simultaneously anti-climatic day that someone else’s blood began to flow into Allistaire.  For one year, that European woman’s stem cells have made their home in Allistaire’s bones and have been doing one amazing job at producing red blood and platelets and white blood cells.  Now those white blood cells will get a glimpse of diseases they have never seen (polio, hepatitis, pneumococcal and many others).  And in all the miraculous wonders of our flesh, those white blood cells will fight and win and store the knowledge of their weaponry and victory, to stave off any future attacks of even greater force.  I am ever in awe of all of it – all of it – the intricacies of our body and how it can actually keep us alive despite so much working against it, the generosity of those who have given bag after bag of red blood and platelets and the thousands it takes to make one bag of Immunoglobins, the woman who gave her stem cells, the myriad of doctors and professionals who tirelessly give of their time and brilliance, the phenomenal generosity of those who give to Seattle Children’s and Fred Hutch to make all this medicine and testing and care possible, the blue sky and wind and a sun that rises every day and flowers that somehow come back every spring, for millions of prayers uttered into the expanse – trusting that God will hear and care and answer as He chooses, for a God that looks down from on high and considers each of our hearts, all of our ways, who knows the number of hairs on our heads, and who interjects Himself in the most surprising of ways into our world.

I have SO much to be grateful for – SO much to give thanks for.  So, we’re planting a tree.  I bought a tree for $49 the other day at Cashman’s nursery – a Radiant Crabapple with gorgeous pink blossoms.  We will sink its roots into the Montana earth and water it and protect it from predators (deer and moose) and delight in its beauty and its reminder of all that God has made possible in the past year.  And we’re going camping.  It’s supposed to rain, but we’re going.  God has made way for my hair to smell like campfire and for us all to wake in a small space together, dampened by the moist night air and waking too early from sunlight and bird song.  Gifts incalculable.

Thank You Father.  It doesn’t get any better than this.  I still could never have willingly chosen this path.  I could not have imagined being able to walk through such dark valleys or the joy of rising to such peaks, but God has been faithful to His word – to provide abundantly, to meet me in the darkness, to turn darkness into light and to redeem brokenness.  Yet I ask for more, more God.  I will keep hoping for what I do not yet see.  Father, help me to walk in faith by your side.  You have been SO good to me, and I am expectant.

To read all about Allistaire’s transplant last year on June 18, 2013 and see far more pictures of a year ago than I’ve added below, click HERE.

Thank you to all who have already generously donated to Fred Hutchinson Cancer Research Center by supporting me in Obliteride for the 50-mile ride this August 2014.  You have made it possible for me to reach the minimum fundraising goal!  If you have not yet donated and it brings you delight to imagine how your money, spurred on by your compassionate love, might be used to bring about the end of cancer and the furtherance of wondrous life for people like Allistaire, please consider donating today!  One-hundred percent of all money donated goes directly to Cancer Research at Fred Hutch!  Amazing!

My dear friends Emily, Lysen, and Jo are also riding, so please consider donating in their name – it all goes to the same place but helps them meet their fundraising goals as well.  Just click on their name and it will take you directly to their Obliteride page where you can donate.

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19 responses »

  1. Praising The Lord with you!! I don’t have words…so grateful. What a great idea to plant a tree. God is so good!!

  2. I’m just so darn happy right now. I’ve been waiting everyday for the new post. God’s love is better than life! Allistaire is just the cutest!!!!

  3. Praise God!! I have been praying and trusting and waiting and expecting this post! My heart is overflowing for you all! What a day – Praise Him Praise Him – much love …

  4. So unbelievably happy for all of you! Not that it matters in comparison to your grand story…but it has helped to increase my faith because I remember how utterly hopeless it seemed and how hard we prayed. Praise God!

  5. Oh, Jai, how precious are His promises and His love…as I read your story here at my kitchen table with tears flowing down my face, I recommitted myself to the same journey of faith in His goodness even when it can’t be seen. Mine is not close to yours in complexity and pain, but still painful and I am reminded again of all the truths you mentioned…and of His gift of Hope. So thankful!! For you and your dear little girl; for your willingness to share; and for His goodness! love you, gayle byrd

  6. Hi Jai,

    I’ve been following along and praying for you guys for quite a while now, and I am overjoyed to read this news! My husband was diagnosed with AML in May 2012, and he finished a round of chemo today (including busulfan) in preparation for a stem cell transplant on the 18th. I’ve wanted to comment a hundred times to thank you for your postings; you have encouraged me in our sufferings more than I can express, and the Lord has used you mightily in my life. I will continue to pray for you and your family!

    With love in Christ,

    Katy

  7. Delightful news that I will pass on to the churches and walking groups in my area of WA who have been praying, saying rosaries, lighting candles and ringing bells for Allistaire all these long months. How wonderful for all of you to begin the celebration of a life made new. – Phyllis Rigg, friend of Tammy and Kelly Hall

  8. Isaiah 60
    Arise, shine, for your light has come,
    and the glory of the Lord has risen upon you.
    2 For behold, darkness shall cover the earth,
    and thick darkness the peoples;
    but the Lord will arise upon you,
    and his glory will be seen upon you.
    3 And nations shall come to your light,
    and kings to the brightness of your rising.
    4 LIFT UP YOUR EYES all around, and see;
    they all gather together, they come to you;
    your sons shall come from afar,
    and your daughters shall be carried on the hip.
    5 Then you shall see and be RADIANT;
    your heart shall thrill and exult,[a]
    because the abundance of the sea shall be turned to you,
    the wealth of the nations shall come to you.

    Radiant crab…. kinda funny, oxymoron? or fits perfectly? I love it so much, plant an orchard of them.

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