A Letter from the Caregiver on day 92

Soundtrack: The Beatles Two of Us

Dear Friends and Family,

     Remember the song….99 Bottles of Beer on the Wall, take one down, pass it around, 98 bottles of beer on the wall?  Well, we’re looking at only 9 bottles of beer (days) left on the wall, give or take a few. 

We’re homeward bound soon!

Where are we now? What’s next?

     A big part about recovery for Chris is attitude and he gets an A+ for that. However, it’s also about balancing his blood chemistry. He is making steady progress. His levels, though low, have stabilized and he has had no infections for almost 3 months.  Fewer medications are being taken now to help maintain an environment in which his sister Laurie's stem cells can create a new immune system without attacking Chris’s body from the inside out.  It will take several months for his marrow refinery to be working at full tilt producing blood levels within the normal range. 

     During this time, he still has to take precautions when in public places and his contact with people will be limited. He must be extremely careful not to cause inflammation (from the sun or other) so that his new cells don’t go crazy and aggravate his body causing a severe case of graft vs. host disease.  His body’s new immune system is similar to a baby’s and it will take time to build up new immunities. Hopefully in a year’s time, he will be able to receive immunizations to protect him from things like tuberculosis, measles, mumps, whooping cough, etc., etc. So until then his movements are guarded, as are mine, so I don’t bring any hitchhikers home especially from school.

     The initial outpatient clinic phase of his treatment at Duke is nearly over.  That said, we will return to the land of Dukes and Duchesses for frequent checkups.  In addition to the continuing care from the ABMT clinic,  Chris will renew his relationship with the Raab Oncology Clinic in our home territory.  He will need  weekly visits for blood count monitoring, red blood transfusions when needed, and administrations of medicines that will help keep his system balanced as it continues to recovery.

     Soon, very soon, there will be only 1 more bottle of beer on the wall and we can return to our beloved Beaufort. We think of our time in Durham as 99+ days out of 360 towards the treatment time devoted to returning Chris back to normal.  Normal?  Well, we all know that Chris is far from being normal and we like him that way, but the “new normal” is something to be embraced as he recovers to live life again to its fullest.  And there’s no better place to do so than at home.

Homeward bound with love,

Annie

Caretaker extraordinaire who survived Chris’s stem cell transplant.

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