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Day +90 update: a tough couple weeks ending on a positive note

The past couple weeks have been another rollercoaster ride for us down in Houston.   We had the expectation of returning to Colorado on February 11th.  We even met with our survivorship counselor in preparation to fly the MD Andersen nest.  She walked us through the timeline through the next 2 years including return trips to Houston, weening off medications, vaccinations, and transitioning care to my doctors in Colorado.  

However two weeks ago, my white blood cell count started to decline.  After being in the 4s for the past 6 weeks, it ended last week on a downward trend to 0.7.  This is extremely low, at a point it hasn't been since late November while still in the hospital.   My doctor could not explain it but her hypothesis was either an infection or an autoimmune issue.  She describes my current state as “a battle raging between my original cells and the donor cells”.  I was given a Neupogen shot to encourage my bone marrow to produce more white blood cells, then on a 4 day course of steroids and daily IVIG infusions.

My bone marrow biopsy last week showed no sign of leukemia.  Also, the results of a recent Chimerism test showed 87% of the cells being donor cells.  These are both very good progress reports but also show how the transplant is still a work in progress. And my hair is starting to grow back!  Although Connie thinks I look more like a Chia Pet 😁.

The week ended on a positive note.  On Tuesday February 2, my WBC went up to 1.5 then up again on Friday to 2.3.  The hope is that this trend will continue throughout next week and stabilize.  Then we can replan our return date to Colorado.  

Hope everyone enjoys the Super Bowl.  Definitely one of my favorite days on the year. Roll on,

Gary

Comments

  1. Hi Gary! Glad things picked up the last week and your hair is looking very Chia pet! It sounds like you are winning the battle!

    The LLS team had a nice program a couple of weeks back celebrating the great year and great research. Nice to know we were a part of it with your leadership.

    Take care and enjoy the Super Bowl. Tucker is routing for Tampa but I think I am going regional with Kansas City.

    Denise

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  2. Gary you are one tough guy! We love your posts and believe the trajectory is up for you Now!

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  3. Keep it up Gary. We are pulling for you as always. Sorry I have not been more present. Mark S.

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  4. Hi Gary. Wishing you continued improvement. Colorado misses you and your family. Trust the doctors and care team with your health. We hope they find answers to the uncertainty and we are praying for your continued recovery. Looking forward to your next update.

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  5. Thanks for the update Gary. Being at a state of the art facility and getting excellent care was a great idea. Sounds tough. Emotionally and physically pressing. Our thoughts and prayers are with you. We know you two will do everything you can to make this work. Hang tough. We're with you and believe in your full recovery, regardless of such setbacks. Much Love to you both.

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