Fifteenth Trip to the NIH

What a trip! Having two of my sisters, Julie and Jamie, my niece Sarah, and her 3-yearold daughter Josilyn along was way more fun than I expected it was going to be. I thought we might be crowded in our hotel suite, but not so. Sarah might not agree, but to me little Josilyn was pretty close to perfection! Of course I wasn’t the one rushing with her to find a potty after hurrying off the Metro a couple of different times. But come on, she’s only three.

We started our time together with a surprise birthday pajama party for Jamie! Sarah provided yummy white grape juice; Julie and I brought Turkish Delight and some yummy cookies we found at Ross. We played a couple of zany games, and exchanged a few gifts. Jamie brought bangle bracelets for everyone. And Julie brought lipstick and ear rings. Guess what I brought. A book. Yep, I’m all about books lately. Next morning we set off for D.C. The Washington Monument has at long last reopened for tours, so we got there around 9:30am to get our tickets to go up in the elevator. But they were for 4:30. So we had to find things to do on the Mall until then. We happily took in an open air band concert of patriotic music performed by an awesome high school group from Texas. We revisisted the Lincoln Memorial. We ate a summery lunch outside, and later bought ice cream. We learned of the existence of the lock keeper’s stone cottage, and spent some time in the Art Museum of the Americas. When we entered, we were just looking for a cool place to get out of the hot sun. But it was beautiful inside, with a room tiled in turquoise tile, and their bathrooms were convenient and nice too. Our energy slowly ebbed away as the day wore on, leading us to find more and more benches to rest on, until at last it was our turn to tour the Washington Monument. How did I enjoy the view? I loved it! Vicariously, of course. The others were kind enough to say aloud what they were seeing far, far below, and to exclaim over how small everything on the ground seemed to be. On Thursday, after the PET scan, we went to the Mall again, and took a trolley tour in place of the DUCK tour that was cancelled due to an approaching thunderstorm. Later, back in Bethesda, we splurged on exotic milkshakes we’d been hankering for ever since Sarah discovered them. Mine was the Presley, a unique blend of chocolate, peanut butter, banana, and bacon bits. So so good.

Julie and I spent most of Wednesday at the NIH. First came the blood draws, then the CT scan, and the attempted bone marrow biopsy. My favorite doctor was there, so it wasn’t bad at all. However, for the first time ever, he was unable to obtain a biopsy. After multiple tries, he did get the aspiration though. A little info on these two procedures: “Bone marrow aspirations and biopsies are performed to examine bone marrow, the spongy liquid part of the bone where blood cells are made. In a bone marrow aspiration, a small amount of liquid marrow is taken from inside the bone so the cells can be examined under a microscope. In a bone marrow biopsy, a small piece of intact bone marrow is removed so the structure of the bone marrow inside its bony framework can be examined.”

After lunch, it was time for my clinic appointment. The PA was super upbeat and positive, saying all looked great. But by the time I met with the doctor, he had seen the CT scan and was concerned about one of the left axillary lymph nodes. It had increased in size since the last CT scan. Consequently, he wanted a PET scan and a lymph node biopsy for more information. The PET scan was quickly set up for the next day, but he thought I would need to return in July for the ln biopsy. After the results of the PET scan came back though, his concern went down a bit, and he said I can wait until my regularly scheduled Sept. appointment for the ln biopsy. He also let me know today that we’ll be doing another bone marrow biopsy at that time as well. The cellularity in my marrow has increased from 40% to 50-6-%, but he told me not to worry about that at this point because my counts are good and I am feeling well. Easier said than done, doc! I have to say that I am so grateful for the two years I’ve been able to participate in this clinical trial. I hope I’m able to continue in it, but I am determined to take whatever comes my way in complete faith. I know my Father loves me, and has a plan for me. And I know His plan for me is a good one, better than anything I could devise. I am so grateful to Him, and to all those who have made and make these trips possible for me. Signing off now with a heart full of love and gratitude.