Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.

Wednesday, August 13, 2008

Jackie's Surgery (Day +850)

We arrived yesterday about noon.  We transported the father of the lady who is the marketing manager for the building we stay in to Rochester as well.  He lives in Wagoner and came along for the ride so he could visit his daughter.

We went to Jackie's appointment at about noon today.  She was scheduled for 12:45 PM and they told us to arrive at least 30 minutes early.  In the end it didn't matter as they were an hour late getting her in for surgery.  She went in just before 2:00 PM.  They finished at about 5:30.

It took two attempts to get the entire skin cancer.  This is normal.  Many of the people in the waiting room required at least three attempts.  The surgeon takes as much tissue as he believes necessary to get the cancer.  They then stain slides and have the lab examine them to see if they have a "clean edge".  If not, they then take more tissue and re-examine to see the result.  In Jackie's case they had to go really deep to get the entire growth.  It exposed the tendons but it was not necessary to remove them.  Naturally this is very good news.  She should not lose any use of her hand.  If we had waited another month for the surgery I think the result would have been very different.  

Unfortunately the wound was large enough that a skin graft was required.  They took the donor skin from her left upper chest.  We return in the morning for an exam.  We return again on August 25th for further examination and removal of the stitches and a consultation with the surgeon.  All-in-all the result was about as good as could be expected.  

She is currently asleep.  The surgery was conducted under a local anesthetic only but they gave her some type of sedative that made her sleepy.

Sitting in the waiting room (which was VERY busy) it make you a firm believer in suntan lotion!  Most (all?) of the people in the room were there as a result of exposure to the sun.  I'll certainly use more lotion in the future.

Until Later....

Bruce and Jackie
From Rochester

Thursday, August 07, 2008

Rochester in the Summertime (Day +844)

We arrived back in Rochester this morning.  We were supposed to arrive last night, but mechanical difficulties delayed our departure until very early this morning.  The weather was great and we overflew Canadian airspace and the Great Lakes on the way over.  The new Mayo Clinic Plaza has been finished and they have a lot of street vendors selling and displaying everything from jewelry to homemade pies.  It lends a carnival atmosphere to downtown.  Summer  in Rochester certainly beats winter in Rochester!

This morning Jackie met with Dr. Zent.  He is very pleased with her progress.  I also learned a very important fact this morning.  Jackie does not have Scleroderma!  She has chronic graft-versus-host-disease (GvHD).  Of course we already knew this, so why the confusion?  It seems Scleroderma is the closest disease they can use to describe her situation.  They don't really have another name to describe GvHD/Scleroderma.  I'm thinking of coming up with with a fancy-sounding Latin name and giving Jackie a spot in history.  How about.....Jackiecilius Epidermatosis.  Maybe we can abbreviate it to JED ?  Latin scholars are probably having heart attacks as they read my new name :) Why is a separate name necessary?

A separate name is needed because there are some serious differences between Jakiecilius and Scleroderma.  Scleroderma is a disease that responds poorly to most treatments.  As it progresses it often invades heart, lung, esophageal, gastrointestinal,  and kidney tissues.  While, this is certainly possible with JED, it is far less likely.  It is also possible to reverse Jackie's disease by increasing her immunosuppression.  So, why don't they do that?  Because it is a balancing act.  The immunosuppression can also lead to problems.  The good news is that chronic GvHD tends to improve over the years.  The body learns to live with the new immune system and immunosuppression can be lessened.  The primary problem with JED is the potential for skin scarring.  Like Sclerodera, it can cause changes to the skin that are irreversible.  This is primarily limited to skin thickening and contractures which are limits on joint flexion and tension.  

Jackie also had completely normal blood tests.  Her hemoglobin was in the mid-12s.  Her platelets were 260 (remember when they were 2!).  Her lymphocytes were slightly elevated at 3.6 but remain stable from last September.  All-in-all the counts are completely unremarkable. 

The primary concern at this point is the skin cancer on her hand.  She is currently scheduled for surgery in early September.  Tomorrow we see the dermatologist.  Dr. Zent believes they may want to schedule surgery sooner.  The growth has been quite rapid.  We will know more tomorrow.  The surgery will be a Mohs surgery which is a highly precise surgery conducted using a microscope.  The surgery will likely last all day due to the fact they will excise small samples of tissue, stain, and examine under a microscope before making another incision.  They will also need to do some reconstructive surgery due to the size.  The actual lesion is approximately the size of a quarter and protrudes approximately .25" above the surface.  Skin cancers are a common problem after transplants due to the amount of immunosuppression.  

That's all for now.

Until later

Bruce and Jackie
From Rochester