Wednesday, April 20, 2016

Post Surgery Follow Up

We are back at Huntsman's today for follow up clinics for Shelbie.

Today was Oncology.  We met with Dr. Shami to go over the official pathology reports.  He was great to talk things out.  He has a rough plan, though it was a sad reminder that there isn't much they can do.  They are considering three diseases in addition to the DC diagnosis.

1.  CVID- Common Variable Immune Deficiency
2. Lymphoproliferative Disorder
3. Sarcoidosis

The first two have been tossed around for awhile now.  The second one, not so much but the nodules in her lungs are suspicious for Sarcoidosis and the tissue found in the biopsy also suggests this could be a possibility.  At any rate, there isn't much we can do.  He said they treat symptoms and aim for control of the disease and comfort.  

He is leaning more towards CVID but is going to bring in our Cardiologist and a Sarcoidosis/Pulmonologist specialist to see what we can do about her lung capacity and difficulty she has in breathing and fatigue.  He said that if we assume she has CVID, she isn't the very worst case but she is definitely not the easiest either.  He recently had a young woman with CVID who had nodules and lymphadenopathy in the same places Shelbie does, including her brain, but she had back to back infections.  She had no quality of life and was failing fast.  They made the difficult decision to do a bone marrow transplant.

In someone as sick as this young woman, or even in Shelbie it is risky and many don't survive the chemotherapy.  For this other girl, she had an amazing response and her disease is gone!   He hasn't dismissed the idea of transplant for Shelbie but he feels like we aren't to that point quite yet.

For now, he feels it is very important that we keep up on cancer surveillance and regular scans.  This will be done every three months.   He will watch all these nodules and enlarged lymph nodes carefully. The complication is that we won't catch cancer unless we do this.  She already has the clinic symptoms of having cancer, including night sweats, hot PET scan, pain etc. so  it makes for a very difficult situation.

Tomorrow, we meet with Dr. Gundlapalli our Immunologist and get his view point and figure out how to get this plasma going.  Shelbie is two weeks late on her transfusion and she is really struggling.

This afternoon was rough for Shelbie.  The whole situation is hard but Dr. Shami was so good with her and his humor helped a lot.   He wants to see the boys in three months as well.  Today just feels like we just ripped a band-aid off and exposed the raw wounds we've been trying to heal over the past few emotional weeks.   But...such is life and life goes on.


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