Tuesday, March 17, 2009

The results we were hoping for!

Dr. Meade from Johns Hopkins called us this Saturday with Kevin's bone marrow biopsy test results. It was good news! Hopkins did not find any evidence of leukemia, using the most sensitive tests the medical world has to offer.  The concentration of T-cells that was first found in October on a bone marrow biopsy was completely unrelated to leukemia and was polyclonal, not monoclonal. T-cells that indicate leukemia are monoclonal. Evidently, the tests Dr. Strair ordered in Seattle were not sensitive enough to detect the difference.  So, either Kevin is cured of leukemia already or the leukemia cells are there, but undetectable. 

And the most important result: the transplant team at Hopkins is not recommending a transplant for Kevin! As we've known from the beginning, the risks of a transplant are very high and potentially life-altering. In addition, the cure rate for a transplanted ALL patient is a dismal 30%.  Anytime you can avoid this most risky procedure, it's good news.  Dr. Meade believes that Kevin's chance of a cure with the chemotherapy regimen is about 60-65%, which is what Dr. Strair told us last summer. Because Kevin has T-cell ALL (as opposed to B-cell) and he went into remission very quickly last June, his chance of a cure increases. The benefits of the transplant just aren't worth the high risk, especially since Kevin would need alternative cell sources, like half-matched siblings or umbilical cord blood.  With the low odds and high uncertainty associated with transplant, Hopkins believes that chemo is the best course for Kevin. 

We have yet to meet with Dr. Strair about this, but our guess is that he will be in agreement. Kevin has finished his intensive chemo and will now move to the maintenance phase, which is less intensive and should allow a more "normal" quality of life.  He will still be fatigued and immunosuppressed while on this chemo course. We meet with Dr. Strair next Tuesday and hope to have a better sense of a timeline, including when Kevin might be able to return to work. 

I've written before about how cancer resets your priorities and your definition of success. Who would of thought a year ago that we would be celebrating ONLY a year and half of chemo for Kevin?! But compared to the massive and scary undertaking of a transplant, this does seem like a victory to us.  We've yet to win the war, but we just scored a major battle! We both feel celebratory and we'll take our victories when, where, and for however long we can.  For the first time in months, we feel like we can fully expand our lungs and take a deep breath. 

I keep reflecting on our timeline that led us to this point. Three days before Kevin was to enter the hospital for his 9/10 transplant, our donor backed out for medical reasons. We were quite disappointed and I spent days determining our next steps. At Dr. Strair's suggestion, we headed to Hopkins where they proposed running their specialized testing.  And here we are: no transplant necessary. Three days away from a dangerous procedure that Kevin seems not to need now. Luck? Coincidence? We believe it was the power of prayer and pure grace that opened this door for us. And we thank all of you for your continued prayers and for your gift of grace: your companionship, your compassionate listening, and giving us stamina and guidance. We've still got a long road ahead of us, but our passage feels gentler now and we're travelling with lighter hearts. 

8 comments:

  1. Prayers and love continue to come from Rochester, Sue!
    We're so thrilled with the great news!
    Blessings to you all as the journey continues to unfold!
    Sue Staropoli

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  2. Dear Susan and Kevin,

    What wonderful news! I guess Fate has a way of working wonders. Thank goodness the doner backed out. I will continue to check updates. Keep the good news coming.

    Love John

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  3. Dear Susan,

    Wonderful about your news. I, too, have found "closed doors" leading me to "open windows" that I might not have pursued during my journey of survivorship.

    One of the keys to "healthy survivorship" is doing the best you can with what you have. This entails not wasting time and energy pursuing -- or wishing for -- impossible paths. And nourishing hope that what looks like a bad thing might, somehow, turn out to lead to good things.

    As for the celebrating, you might enjoy an article I wrote to clinicians about this, entitled "Time to Celebrate"

    http://www.oncology-times.com/pt/pt-core/template-journal/oncotimes/media/WendyHarpham-TimetoCelebrate-OT-Feb252006.pdf


    With hope, Wendy
    www.wendyharpham.com

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  4. This is great news! Stay positive and stay strong. Hope to get together soon. You are always in my thoughts.

    Lisa and Jonathan

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  5. Dear Susan, Kevin, Lance, Drew, Anna Joyce,
    We are rejoicing in your good news! We continue to pray for hope and alive-ness (is that a Nazareth word or what??) for all of you. Thanks for the sharing your journey with all of us.
    Love, Nance and Tom

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  6. I think that you need to schedule a trip to Baltimore to celebrate not having to stay here for 2 months! Wonderful news!! Let me know when you want to come for fun.
    Erica

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  7. Kevin and Family,
    Wonderful,wonderful
    news!
    Michele Wilson

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  8. Dear Susan and Kevin, So glad that the news was positive for you both. As you are finding out prayers coming for you from all directions are a blessing. We love you both and pray for your continued improvement and happiness. Happy Anniversary too! Love, Mary and Glenn

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