Seventh Trip to the NIH

This was going to be a trip! A whole lot of fun packed into a few short days together! Julie would drive up from UT to fly with me to the NIH, and Jamie would fly up from FL to meet us there. We
scheduled a Mount Vernon tour for Thursday, then on to the clinic for my appointment and a session at the Washington D.C. temple on Friday, with a quick tour of the National Mall on Saturday! But
first, I was glad I’d be home on Tuesday to go with Dan for his EGD, or Esophagogastroduodenoscopy, “a test to examine the lining of the esophagus (the tube that connects your throat to your stomach), stomach, and first part of the small intestine. It is done with a small camera (flexible endoscope) that is inserted down the throat….” This would be his third one since August, and we were hoping to find that the ulcer and stricture discovered then would be all healed this time. Colin dropped us off at the hospital as usual, and all seemed to go well. But a few minutes after we got back home, Dan was hit by a massive wave of pain, and I wasted no time in calling 911. Dan was making scary noises, I was nearly hyperventilating, while the paramedics were busy whisking us off by ambulance to the hospital we’s just left. The next hours were intense. A CT scan showed that during the EGD, the ulcer had been perforated, which necessitated surgery. It was performed from about 10pm to just after 12am. Dan remembers very little about that day, or the next couple of days, either.

My cell phone didn’t work in the emergency room, so my friend Cindy contacted Julie who contacted Jamie, and we called back and forth unmaking and remaking plans. I hoped I could get my labs drawn at home and faxed back to the NIH, and that they could overnight my new meds to me so that I would be able to stay with Dan. But Dr. F. explained that we had to follow the clinical trial protocol as written, and that I would have to appear in person to get the Ibrutinib, or go off trial until I could do so. I knew Dan would be in good hands in the hospital, but a flood of tears and a horrible reluctance to leave him still accompanied my decision to make a much-abbreviated trip to Bethesda. Julie and I left Boise early Thursday and returned late Friday. But before we left,, Kirt, our family’s heaven-sent home teacher, gave us each a blessing of comfort, and a feeling of peaceful assurance settled upon us that all would be well throughout the entire trip. And it was! WBC down to 28K; HGB up to 13; platelets up to 211K. As a matter of fact, Dr. F. informed me that I had the record for the fastest platelet recovery on the trial. We appreciated talking with him, Dr. Mardi, and Dr. Shah.

Dan and I have also been very impressed with the doctors and nurses we’ve met here at Saint Alphonsus. He continues to improve, and may be coming home either today or Friday. We’re betting on today. Oh and just for the record, the name of the surgery he underwent is a gastrojejunostomy. From now on, they tell us he will need to eat frequent small meals each day. I am so thankful he is doing so well. He has kept the hospital staff entertained, and been a model patient. Our prayers are now with Julie and Lonnie and their family. Lonnie’s brain tumors are growing again, causing problems, and two additional ones have been found. Radiation treatments will begin Friday. My friend Doug Reynolds from the CLLCFriends site unexpectedly died last week. I was so shocked and sad to read of his passing upon my return. I am reminded again that life is fleeting. I plan to cherish it, and prepare for the next.