Nicole's NIH Update

Above: The main medical research center on the campus of National Institutes of Health. This is also my view each morning leaving the Safra Family Lodge as I walk or shuttle to see Nicole.

All,
Thank you for the thoughts, prayers and concerns for our wonderful Nicole. It has been quite a week. More importantly, Wednesday, January 12 was great day! If the news we received around the noon hour extends to the next couple days we will be mighty happy campers.
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It is a fine line to provide a decent update for all of you who are so invested in how she is doing. Here is my best effort to summarize and also not be too descriptive. (When you swim in these waters too long and visit with other families it is hard to determine what to say and what not. It has struck me how much families unite here in support). I'll do my best.

If you looked up "ambiguous" in the dictionary it would describe the location of Nicole's tumor. All the credit in the world goes to National Institutes of Health, their amazing doctors, research programs and medical resources. The fact is we were troubleshooting in Indy. After going through this I can tell you the same success would not have been acheived locally: The protocal offered for Cushing's disease and the constant teamwork with instant results between the neurology and endocrine departments has been off the charts impressive. For those of you who do not know much about this mightly campus -- we certainly did not -- know it is necessary and truly a blessing.

As mentioned on Monday evening, Monday's surgery has been deemed successful (step one). It was roughly 3 - 3 1/2 hours. She spent one night in ICU. Based on numbers received on Wednesday the surgeon and endocrinologist are further confident they got all of the tumor in Nicole's pituatary. What do I mean by numbers? Simply stated, all of this was caused by a cortisol-secreting (most certainly benign) tumor responsible for side effects and symptoms that needed to be addresses for her health. Her daily cortisol number was well elevated and varied at approximately 19. For the surgery to be successful we needed a drastic drop below 5 which would indicate remission (step two in the process). The initial reading taken on Wednesday shows a 1.7!!! This is imperative. Today we will receive another reading. In theory, it will be at or below yesterday's number (great news). Per NIH research and interpretation, a reading of 2 or less indicates a cure rate ranging 95 percent-plus!! The number dropped so drastically because the source of cortisol was removed. In other words, her body is "crashing." The physical side effects of this are expected today or Friday once the steroid treatment has worn off. We are not sure exactly how this will go but we will deal with that then. If anyone will handle it well it is most certainly my dear-Nicole. By Friday afternoon she is scheduled to leave the neurology suite and return to her home base in endocrinology.

On Saturday she is scheduled to start hydrocortisol treatments so she can begin acheiving cortisol balance in her body (step three). This will be long term and dependant upon how things continue to evolve.

Nicole is scheduled to depart D.C. on January 21.

All in all, provided the numbers come back healthy today and Friday, we are staring "remission" right in the face. She is almost there!!!

Step four is too far out, but would include regular check-ups either locally in Indy or with the same endorcrine team here at NIH. It all seems to good to be true.

As for Nicole, she is hanging in there like the "tough cookie" she always has been. In all honesty, it is a little much at times, but today's news reassures us we are on the right path. Just so you know, I am indeed sharing all the nice sentiments you have been offering. It goes a long way.

Thanks for all your kindness,
-Jason and Nicole