The Next Steps

As you know, Deb has been in Kaiser Permanente Terra Linda hospital recovering from respiratory problems – wheezing, difficulty breathing, and coughing.  She has had three chest x-rays and two CT scans.  The most recent CT scan showed a sinus infection, which is exacerbated by her compromised immune system.  Deb had been on oxygen around the clock, but over the past few days her lungs have cleared some, her breathing is better, she is coughing less and not requiring much oxygen.  The doctors had been waiting for some improvement in Deb’s condition to start her chemo for relapsed acute myeloid leukemia (AML).  On Wednesday, January 7, Deb will begin to receive the MEC combination chemotherapy which consists of three separate drugs given through an IV infusion for three to four hours a day for five days.  This is a tough chemo regimen which Deb received last year as her second round of chemotherapy.  Deb will need to remain in the hospital for four to six weeks following the chemo to regain her strength and build up her blood counts and immunity.  We don’t know at this time if Deb will need one or two rounds of chemotherapy.

On the emotional side, Deb is facing a completely different level of difficulty than when the leukemia was newly diagnosed.  The psychological stress of dealing with this new level of reality is very difficult for her.  Throughout the last 15 months, Deb has remained extremely positive and is trying to keep up a positive spirit now.  But this is hard for her to do with the prognosis she has received.

Deb and Andy were married in a lovely intimate ceremony on December 28, but unable to have a honeymoon celebration at this time.  Andy came to the hospital faithfully to visit Deb every day until he got sick last Saturday.  It’s particularly challenging for Deb now (and Andy too) because Andy has the flu and she is not able to see him because of possible exposure to infection.  Andy is a huge comfort to Deb, and not being able to be with him at this time is very hard for her.

We are praying that this chemo treatment will put Deb’s leukemia back in remission.  We are also continually looking at possible clinical trials for new drugs that may attack the leukemia in a different way than the conventional drugs.  These new drugs fall into the category of immune therapy.  Instead of targeting the leukemia cells the way chemotherapy does, they work by harnessing the immune system to attack the cancer cells.  One drug, called a PD-1 Inhibitor, has received promising results for lung cancer, melanoma and lymphoma.  There have not yet been any PD-1 Inhibitor clinical trials for AML, but we hope there will be one in the near future that Deb can participate in.

Many people mention clinical trials to us, and we always appreciate learning about a treatment which may be beneficial to Deb.  But finding an appropriate trial can be difficult.  One thing I have learned when researching the trials is to look first at the Exclusion Criteria.  Some trials will exclude relapsed leukemia or patients who have had a stem cell transplant.  Other exclusions include specific gene and chromosomal characteristics which the patient may need to possess or not possess.  The trial must specifically be for acute myeloid leukemia, not one of the other types of leukemia.  Also, the patient must be relatively healthy to enter a trial, so we need Deb to get well and recover her strength back after this chemo treatment.

As always, we appreciate all of your prayers, love, healing intentions for Deb, and messages.  Deb is sorry that she cannot reply to each of you individually, but your healing thoughts and prayers really help a lot.

Mary Lou, Deb’s Mom

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14 Responses to The Next Steps

  1. Virginia Kettenring says:

    Dear Deb and Marylou. Our prayers are offered to both of you. It is so wonderful that you both and Andy can support each other. We wish we could be of more real help.
    We are so proud of you and you beautiful family. I am glad your wedding was so lovely.
    Good night for now.
    God Bless,
    Ginny Kettenring, Hershey’s Mill

  2. Martha Roskowski says:

    Much love and healing thoughts from the PeopleForBikes team in Boulder. We are pulling for you.

  3. Stephanie says:

    Deb- Stay strong. You are in our hearts and prayers. I admire your inner strength; knowing what chemo is like [although it sounds like your cocktails are stronger than mine were].
    Mary Lou- Thanks for the updates. It’s obvious where Deb gets her love of life & will to carry on.

  4. Candace says:

    ❤️❤️❤️

  5. Bev Brody says:

    Kauai is with you Deb! All of us! Lyle, me, Ricky and thousands of children hold you in the most positive healing light. This is the year of healing and as readingrisa stated… the year of rebirth and we are with you all the way. Your honeymoon suite awaits!

  6. Laura Cohen says:

    Keeping you and Andy in my thoughts! I am envisioning this 1 round of chemo washing away ALL those cancer cells so you can be home soon with your new husband & take that honeymoon! ❤️
    Laura

  7. Joanne OCConnor says:

    Just know that I am thinking and praying for you Deb. You are very brave and an inspiration . Joanne

    Sent from my iPad

    >

  8. Ariadne Delon Scott says:

    Mary Lou, thank you for the update and sharing all the news. We are here for you–sending strength and prayers your way. There is so much love in the world being directed to Deb’s healing.

  9. Cindy Winter says:

    Mary Lou, I too appreciate your report. You are truly an amazing Mom, mastering the medical details and then reporting them so clearly during this stressful time. I hope Andy’s flu will be a mild one, so that he can return to supporting Deb, and giving you a bit of a breathing room (which even the most devoted Mom will surely need). When I think of Deb at this difficult time, I picture her helped along by your loving support, and Andy’s, and I know that all that can be done will be.

    Cindy

  10. JOAN says:

    Mary Lou,  You are so kind to take the time to write to all of us.  Yes prayers will continue.  Love, Joan

  11. marian houston says:

    We are all hoping and praying for you 3, Deb, Andy, and Mary Lou too.

  12. Michele Uy says:

    Sweet girl, if you are unable to gather the strength you need within yourself, please, please, lean on mine and the love, positivity and strength of your loved ones and friends. I may be clear across the country, but I know if you close your eyes you can feel my love and my arms wrapped around you. Please be comforted. You are loved. ❤️❤️❤️

  13. readingrisa says:

    Thanks for the update, Mary Lou. You’re an amazing support to Deb and strong advocate! Deb’s fan club is so large and we are cheering for her victory. Lots of love and healing energy is streaming across the country into her room. I envision this as her year of rebirth. Keeping the faith strong for her full recovery.

  14. We are with you Deb and offer you many prayers and lots of healing thoughts and hope the chemo goes very well and defeats the Myeloid leukemia!!! Keep fighting and be strong with lots of positive thoughts coming your way!

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