Riding the Waves

Deb has been out of the hospital for a month now, and I know an update is long overdue.  Deb was extremely weak when she came home, and is still struggling to do basic things like walk up stairs alone.  For the first couple of weeks she began to gain weight and get stronger from eating better, sleeping more, and doing some gentle exercises.  Deb has a visiting nurse who comes three times a week to evaluate her progress, draw blood to determine if a transfusion is needed, and to discuss any issues that we may have.  Deb continues to require red cell and platelet transfusions about every 2-3 weeks at Kaiser Permanente.

Deb’s breathing difficulties and wheezing have vastly improved over the past 10 days, but the cough persists.  She started to receive acupuncture treatments and take Chinese herbs to help with her lung problems.  Deb’s Stanford doctor gave his approval to seek this form of treatment.   It’s amazing how much her asthma improved quickly.

Two weeks ago Deb began running a fever, and this has completely drained her energy.  Last week a chest x-ray showed a small spot on her lung suspicious of pneumonia.  She was put on an additional antibiotic for 10 days (she was already on three).  Yesterday a second chest x-ray was taken and was clear – no pneumonia.  But her cough persists.  She is also very tired again, naps often, and has little energy since the fever began.

Over the last week or so, Deb has been throwing up some, and as a result is not eating a lot and has lost the weight she had gained back.  She’s at 80 pounds, her weight when she was released from the hospital (normal for Deb is 110 – so this is nearly 30% of her body weight). Today we did an x-ray of Deb’s stomach/intestines to see if there is a blockage.  The x-ray was clear of any blockage but apparently she has a lot of stool stuck in the small and large intestines which would contribute to the lack of appetite and throwing up.  They are still looking to see if there is infection anywhere which might be the cause of the fever; or it could be caused by the leukemia.  So, testing continues.

Deb is scheduled to have a donor lymphocyte infusion (DLI) on March 31 at Stanford, but we may only be able to do this procedure if the fever is gone.  They don’t want to infuse if there is an active infection.

The DLI is an infusion of lymphocytes (a type of white blood cells) from Deb’s original donor, Mr. International, and is intended to produce an anti-tumor response.  This “graft-versus-tumor” effect (GVT), in which the donor’s cells attack and kill any residual cancer cells, is effective in curing AML patients 10-12 percent of the time, but the doctor said Deb has a 10-20 percent chance.  Another 25 percent of patients are predicted to survive but have other health problems from graft versus host disease (GVHD).  With graft versus host disease, the donor cells see the good cells of the recipient as foreign and attack them too, as well as attacking the leukemia cells.  The GVHD can range from mild to severe.  Deb’s inability to be in any sunlight following her transplant last March is actually considered to be “mild’ GVHD, although it represents a huge change in lifestyle for my daughter who loves the outdoors, bicycling, hiking, swimming, and being in the sun.

We thank you all for your support, prayers, and positive energy, which help us more than you can imagine. Big decisions will be made in the next week.

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13 Responses to Riding the Waves

  1. Laura Cohen says:

    Thanks so much for this update – we know you’re dealing with so much and we appreciate you giving us a window into what’s going on. Deb, my family & I will keep you in our thoughts as you fight off that infection so you can get your DLI & cleanse those cancer cells from your system for good!

  2. Michael Gaspers says:

    I think about you and am rooting for you always to get through this and live a long, healthy and happy life. Big hugs.

  3. jward78 says:

    Our love and prayers are coming your way to Deb, your Mom, Andy and others who are near and caring for you. Prayers also coming from our extended prayer networks. Love from the Ward-Waller family

  4. geotech1 says:

    Deb’s strength and fortitude are unimaginably strong. I have never known a tougher fighter. I am pulling for you with my whole being. all my Love.

  5. Frankie & Linhard Reich says:

    Thanks for the update. We continue to hope and pray along with you. ” We are healed of suffering only by experiencing it to the full.” ( Marcel Proust, I think…) Much Love, Frankie and Linhard

  6. Virginia Kettenring says:

    It is caring of you to take time to pass on what Deb is facing by the hour.i pray that she will be able to take this treatment. Everyone has prayers for her to be more comfortable, and gain strength.
    I send my love from the East coast prior to Holy Week
    With love,
    Ginny of Inverness

  7. adscott@stanford.edu says:

    Deb, sending strength your way and lots of hugs, vizualizing good healthy cells taking over. thanks for the update, an amazing and inspirational story, you are a pillar of rock solid strength and full of abundant love for life.

  8. Cindy Winter says:

    Thank you, Mary Lou, for taking the time to send your up-date. Several of us were wondering, and now we can understand and better compose our heartfelt healing thoughts to send to Deb, along with our support to Andy and you. Whatever the decision, it will clearly be well-advised and well-considered, the best for Deb.

  9. Dianegempire@verizon.net says:

    I can’t believe what you are going through but God has made you stong enough to pull through this. You are always in my thoughts and prayers.

  10. Mary Beth Powell says:

    I went before the congregation at my church (Unitarian) during our “Joys and Concerns” a few weeks ago and asked for their collective energy, prayers and thoughts to help support you, Deb. Just know that we’re sending you love and light from the Community Church of Chapel Hill, NC.

  11. readingrisa says:

    I’m thinking about ALL of you as you continue this journey. Your collective strength inspires me. I continue to send loving, healing energy and keep the faith with you all that Deb will overcome and continue to be an amazing change agent that makes this a better world for all. Hugs.

  12. Ted Barber says:

    The prayers of the Honor Sunday School Class continue and we specifically pray that the present infection be eliminated so that the white platelets from Mr. International can be administered and do the job needed. We also pray that the decision made in the next few weeks are the best for Deb.

  13. All the best DEB – We are pulling for you and the fever going away and you being able to take successfully the DONOR cells. Love and strength and returning health!!!

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