Monday, February 25, 2008

Why I've Been AWOL

I haven't posted here recently and I feel I owe an explanation. Unfortunately, it is an explanation I wish I didn't have to use.

My wife, Pam, was diagnosed with leukemia (AML) two years ago. She went through chemotherapy and quickly went into remission. We recently found out that she has relapsed. We are now in the process of preparing for a bone marrow transplant. We will be temporarily relocating from Overland Park, KS to Omaha, NE. Pam will be receiving her transplant at the University of Nebraska Medical Center.

Over the past 2 years, I've necessarily had to learn more about hematology and AML than I ever wanted to know. A bone marrow transplant—actually, a peripheral blood stem cell transplant (PBSCT} these days—is a pretty amazing process. Bone marrow is the "factory" that generates our red and white cells, as well as platelets. Red cells are responsible for supplying oxygen. White cells fight infection, and platelets coagulate blood to prevent bleeding. This triumvirate is our immune system. A PBSCT effectively replaces the donor's malfunctioning immune system with a new replacement.

The most perfectly matched transplant is between siblings. In Pam's case, this is not an option (Her only sister was tested and was not a match—there is only a 25% chance that they would match). The alternative is an matched unrelated donor (MUD) transplant. Through genetic testing, several markers (HLA) can be identified that both the donor and patient share in common. Currently, a "10 out of 10" match is considered optimal. We were fortunate to learn that there are currently two of this level of potential donors for Pam (The donor base is administered by the National Bone Marrow Program).

A bone marrow transplant is not without potential complications. Following the transplant, the patient has no immune system and is at risk for a variety of infections. Post-transplant care has improved over the years and a variety of immuno-suppressive drugs are available to fight and counteract infection. A bone marrow transplant is the only form of transplant procedure in which the donor immune system can potentially view the patient as a foreign entity. As a result, Graft vs. Host Disease (GVHD) is a potential long-term complication. A small amount of GVHD is desirable—any residual leukemic cells are veiwed by the donor immune system as foreign and are eradicated. Severe GVHD can be life-threatening or even fatal. Again, a variety of immuno-suppressive drugs have been developed to counteract GVHD. Chronic GVHD can impact long-term patient quality of life by impacting various organs, skin, etc.



This is a photo I took of Pam and I for our 25th anniversary. I shot it just a few days before we found out Pam had relapsed. We drove up from Overland Park to Omaha today. Pam enters the Med Center tomorrow to begin the process of induction chemotherapy to destroy her leukemic marrow in preparation for the transplant. When we left, we realized that a chapter of our lives was ending and a new one beginning. We don't know what the future holds for us, but we are both positive thinkers and believe that we will come through this to eventually arrive at a "new normal".

Life Happens.

-john

25 comments:

  1. Take good care of your wife, John, and the rest will take care of itself.

    Sincerely,
    Philippe Casgrain
    Developer, Painter

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  2. John, first thing first. In the end life it's all there is, you take good care of it. Wishing you love inside the storm until the next sunrise.

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  3. I pray that God will be with you and strengthen you through this journey.
    Edie

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  4. Your journey is beginning and the two of you are lucky to have each other.

    My heart,prayers and thoughts are with you and your family.

    My father once told me the only reason we are put on this earth is To LOVE and BE LOVED.

    You both have that.

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  5. God Bless you and your wife. I will say prayers for you.

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  6. Sending prayers and thoughts to you both. I hope things work out for you both.

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  7. I'm pray for you, Pam and John, God is in control.

    Greetings,
    LuisAlberto

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  8. Hi John
    you had mentioned on the PT forum that this was a possibility, i would just like to say im so sorry that it did actually happen and im sending both u and Pam all my love and prayers for a match and a speedy recovery for Pam, so take care of your darling wife and know that there are so many people who are sending prayers your way John
    hugs and prayers
    your friend Bev langby

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  9. John, my prayers go to you and Pam. You have given so much to all of us.
    Ann Roberts

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  10. God bless you and your wife...you are in my prayers...hugs, Linda

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  11. Thoughts and prayers are with you John and Pam. Virtually holding your hands..

    Most sincerely,
    Karen Bonaker

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  12. I will pray for you both, John, as you get through this together and move into your "new normal." God bless you... and keep your spirits positive.

    Barb Hartsook

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  13. John, may the bonds born of love and lives shared continue to be a source of strength for both of you. Our faith and prayers for you and Pam are for your achieving the "new normal" you speak of.

    Richard and Liz Pope

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  14. John please know that you are both in my thoughts at this time and my wish for you at this time is for everything to go well and for you both to have the courage and strength needed to cope. Big gentle hugs to both of you. (don't forget to look after yourself at the same time as you are looking after your beautiful wife)
    Wendy

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  15. John, my thoughts and prayers are with you and Pam as you endure this trying time. God Bless.

    Marcia Fasy

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  16. John, for your vife and you I wish all goodness of the universum.
    Dragan

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  17. God Bless John and congrats on 25 years of marriage. Thank you for all you have done for the world of digital art. Its an inspiration to all of us.

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  18. With sincere hopes for Pam, your beautiful wife of 25 years, on her difficult journey to a new normal life.

    Take care John, there are many of us thinking of you at this time.

    Pauline

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  19. John, you both are on my good thoughts list.

    Greg.

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  20. My prayers will be with your family and specially your beautiful wife.

    Marcie

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  21. John, That is an absolutely lovely picture of you and your wife. One can so clearly see the love and happiness that is shared between the two of you--something most precious. May you both be wrapped with whatever cloak of comfort and caring that the universe has to offer during this difficult period of time. My personal hopes and blessings to you as well. Vicki from POTF

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  22. schlachter.roland@neuf.frApril 4, 2008 at 9:04 PM

    c'est de bien loin (france) mais c'est de tout coeur que je suis avec vous.

    amitiés roland

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  23. Yes, I do have an update. Pam failed to get into remission on her first round of chemo (remission is highly desirable in advance of a transplant). She is finishing her second round today and gets out of the hospital (today is Pam's birthday!).

    It takes around 3 weeks to test for remission. Assuming Pam achieves remission this second round, the transplant will follow shortly thereafter. Two "10 out of 10" matches (the highest level transplant prospect) have been located and will be contacted once Pam is in remission.

    Every day is full of uncertainty, but we're adapting to it. Life Happens.

    -john

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  24. Been waiting to hear this update. Thanks John and good news on the match! That hurdle is at least done and waiting for you. Stay in touch here and Happy Birthday to Pam. Celebrate Life!

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