A little bump in the road

Happy Easter everyone!  It’s another lovely sunny day in Stanford.  Since we’ve been here, day after day has been beautiful and cloudless, one of the things that people love so much about California … unless, that is, you cannot be out in the sun.  Deb is now extremely sensitive to the sun, which can trigger Graft vs Host Disease (GVHD), a common complication of an allogeneic transplant.  GVHD develops when the donor’s immune cells regard the recipient (the host) as “foreign.”  The transplanted immune cells then attack the host’s body cells.  This often manifests as skin rashes and blisters, gastrointestinal problems, and jaundice.

The doctors encourage Deb to take walks, and we usually go out late in the day and walk for about 20 minutes.  On Wednesday we thought we’d try to take a couple of walks, and went out for our first walk in the late morning.  Deb was covered from head to toe with a hat, scarf, gloves, jacket and long pants.  She had on her big HEPA filter mask, so there was only a small part of her face that was exposed.  We mostly stayed in the shade, but there were some areas on the path that were in the sun.  That afternoon, Deb’s face started getting red, itchy and swollen.  She also got a rash on her neck, chest and back.  We went to the Cancer Clinic the next morning, and they said it was GVHD.  They told us it doesn’t take much sun to trigger GVHD, and once it starts, it can spread to areas that were not exposed to the sun.  This was quite a wake-up call for us; we knew Deb couldn’t spend much time in the sun, but we didn’t realize just how sensitive she is to it.  Deb was prescribed some steroid creams to use, and they have helped to improve the rash, but it is not all cleared up yet.  It’s been uncomfortable and itchy, and an unexpected blip when things seemed to be going so well.

The positive aspect to this is that they say a little GVHD can be good.  Here is a quote from the Be The Match website:  “Doctors often see mild GVHD as a good thing after an allogeneic transplant when the transplant was done for a blood cancer.  It is a sign that the donor’s immune system is working to destroy any remaining cancer cells.  Patients who experience some GVHD have a lower risk of the cancer returning after transplant than patients who do not develop GVHD.”  So we’ll try to look at this as a positive learning experience, but we’ll be taking all of our walks in the evening from now on!

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9 Responses to A little bump in the road

  1. Laura Cohen says:

    Deb – I think of you often, and send my love & healing wishes to you as you navigate this difficult journey. Blessings to you and your dedicated caregivers, from all of us at Rails-to-Trails. Laura Cohen

  2. marian houston says:

    Well, I will think of you and Deb as two GLAMOUROUS VAMPIRES, wearing 19th century BLACK VEILS AND CLOAKS and looking very gorgeous and pale!

  3. marian houston says:

    Gosh, sorry to hear bout GVHD – but hope it will be a brief episode, and a case of a little touch of GVHD –only enough to be beneifical. Love M

  4. Sue & Jim Kelleher says:

    THIS IS ,AS YOU PUT IT MARY LOU, A LITTLE BLIP WHICH I AM SURE DEB WILL OVERCOME DUE TO BOTH OF YOUR GREAT ATTITUDES, THE PRAYERS AND THE GOOD MEDICAL TEAM YOU HAVE.

  5. Lydia Voigt says:

    We all must continue to look at the bright side, as I know you are doing. It just shows how strong the sun is and what it can do. thank you for continuing sending updates, it certainly means a lot to me. My thoughts and prayers continue each and every day. Much love Lydia

  6. Risa says:

    Spring is always a reminder of new life. And this bump in the road is a reminder of the new cells working inside you bringing you a new life as well. Happy Easter and new life! I’m so impressed with both of you, Deb and Mary Lou. You are rocking the recovery process. Hang in there!

  7. Just a little bump, but I’m sorry for your discomfort, Deb. May the healing continue in every way.
    Love you.

  8. Ted Barber says:

    An important learning experience and a positive take on the immune system. The prayers for you Deb continue .

  9. Happy Easter Deb and Mary Lou. Hang in there you will be fully recovered in a few moths. Keep up the spirit!!!

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