Sixteenth Trip to the NIH

A whole month has gone by too fast.  It was a month from today that Dan and I flew back for my NIH appointment.  Seems I’ve about lost the inclination to post updates, but I don’t want to just disappear without a trace, so here’s a recap.  Check out my schedule and you’ll see that they kept me pretty busy this time.

Wednesday, September 10, 2014 – 27month follow/up

09:00AM- nothing to eat or drink after 9AM in preparation for your CT scan.  You may take medications with sips of water

9:45AM – 3rd floor, Day Hospital, 3SE-S, for blood draw from port.

11:00AM - 3rd floor, Procedure Unit, 3SW-N, for non-sedation bone marrow biopsy.  Dr. Farooqui will do the biopsy, please arrive 15minutes early, if possible

1:00PM – 1st floor, Radiology for CT scan.  Your scan is actually scheduled at 2PM, but you must be there 1hour prior in order to drink the oral contrast.

To follow- 7th floor, Outpatient CLL Clinic, OP 7 to see hematology fellow, followed by Dr. Farooqui and the CLL team.

To follow – 1st floor, Pharmacy to pick up study medication

Thursday, September 11, 2014 nothing to eat or drink after midnight Wednesday night in preparation for your lymph node biopsy.

08:00AM (on Call) – 1st floor, Interventional Radiology for lymph node biopsy.

to follow- 3rd floor, Day Hospital, 3SE-S, for recovery after biopsy.  The CLL team will come see you in the Day Hospital 

I just wrote a few of the CBC numbers as Dan read them, so definitely not all-inclusive.  CT scan was ok, will ask for a little more clarification on the ln biopsy in Dec., but best of all was the bone arrow news.

 WBC: 6.95 - normal range 3.98 to 10.04

Alc: 1.74 - normal range 1.18 to 3.74

Plt: 190 - normal range 173 to 369

Rbc: 4.74 – normal range 3.93 to 5.22

Hgb: 12.7 – normal range 11.2 to 15.7

Immature granulocytes: .6 – normal range .1 to .4

Absolute immature grans: .04 – normal range .01 to .03

The most exciting news to me was from the bone marrow biopsy.  The CD79a marker which specifically measures the amount of CLL in the bone marrow showed substantial improvement.  It was at 90% just prior to starting the trial; went down to 80% after two months; 35% at six months; 40% after 1 year; and is now down to 20%.  That beats the chemo I had back in 2007.  After it was finished, CD79a was still at 30%.  So 20% looks pretty good to me. 

Not sure I’ll keep updating.  Not sure I won’t, either. 

Love to all.

   

Our Family!

Forty-one years ago, there were only two members of the newly formed Dan and Bonnie Washburn family.  Now, our number has grown to 29.  And here’s the picture to prove it.

Earlier this month, we gathered for a family reunion in Flagstaff, Arizona.  We’ve had some pretty fun reunions, but to me, this was the best yet!  We didn’t know how wonderful the Flagstaff area is when we chose it.  But it’s called the “City of Seven Wonders” for good reason.  There is so much to do and see there!  We rented a beautiful home for a week, and had daily adventures.  Some of them were within the walls of our home away from home, like the highly entertaining talent show, a double birthday party, testimony meeting, delicious dinners, and the time when we displayed pictures of some of our ancestors, unveiled a ten generation fan chart made by Shane, and gave each family a Book called Generations, written by their cousin, Kaye Lynn Berg.
 
Other adventures included -  day one a visit to Sunset Crater and Wupatki National Monuments; day two, Walnut Canyon; day 3, church, lunch and party and farewell to Ethan’s and Kimball’s families; day 4, Dan and I waited outside while Greg’s family explored the Lava River Cave in the Coconino National Forest, and then we joined them in touring a Pioneer museum.  Neil and Penny took their little twins to Bearizona Drive-through Wildlife Park.  On day 5, Greg’s and Colin’s families left for home.  Neil and Penny and Dan and I took in the sights and feel of Meteor Crater, Oak Creek Canyon, and Sedona.  They headed home the next morning, and Dan and I spent a very peaceful, relaxing day together.  He did some tidying up and some reading.  I did a lot of bird-listening out on the back deck, and thanking Heavenly Father that everything had gone so very well.  I am still smiling, thanking Him, and singing our reunion theme song.
 
The Family Is of God
1. Our Father has a family. It’s me!
It’s you, all others too: we are His children.
He sent each one of us to earth, through birth,
To live and learn here in fam’lies.
[Chorus]
God gave us families to help us become what He wants us to be—
This is how He shares His love, for the fam’ly is of God.
Words and music:Matthew Neeley

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.

Fourteenth Trip to the NIH

It's been a week since Dan and I were in Bethesda for my NIH 21-month evaluation, and just over a month since we enjoyed a visit from Brianna and her family. Nothing but good news on both occasions! A crazy thing happened though. I mixed up my appointment schedule,flying all the way across the country and showing up for my appointment a week early. True to form, everyone was wonderful and accommodating, making our trip a success.. Lab results were great, with only the absolute lymphocyte count and the Beta-2-microglobulin being slightly elevated. Ibrutinib, now called Imbruvica, my trial drug, was approved for patients with MCL (mantle cell lymphoma) a few months ago. On Feb. 12 of this year, it was also approved for patients with CLL! What a welcome breakthrough! I wondered how this would affect the trial, and thank goodness, it won't. Dr. Farooqui said that study of the long-term effects of the drug are still needed, and that I can continue on the trial for as long as I want to. Oh yes, oh yes, I want to! Good news all around for me, and for many, many others.

It took two expensive tries, but Brianna's parents were finally able to gain permission to enter the US from China, to visit her. They were constantly surprised at the cleanliness of the air, homes, restaurants, and public bathrooms. They even want to move here permanently now. As they walked around Seattle, they marveled at how few people there were to be seen out on the streets. In China, the streets and businesses are always teeming with people. Little 15-month-old Jayden and his grandparents bonded quickly, and Jayden still calls for them even though they returned home several weeks ago. To our great excitement, they made the long drive over the snowy mountains to pay us a visit as well!

I made breakfast and dinner, and Brianna's mom and dad made lunch each day during their stay. Yum, authentic, homemade Chinese food! Actually, anytime I was cooking, they were right there with me helping out. Brianna's dad was my right hand man when I was making cheesecake stuffed strawberries for Valentine's Day. We all thought they were a hit, and they wanted the recipe so that they could make them for their friends at home. All I did was wash and hull the berries, and mix up the cheesecake filling. Her dad did the cutting, and stuffing. Since he loves to sing, we had a karaoke party just for him. Everybody took at least a turn or two, except for Jason and Dan, but they made for an excellent audience, so we let them off easy. Thanks to Colin and Macey for making the karaoke party work out for everyone! And big, big thanks to Jason and Brianna for bringing a weekend full of joy into our home!

This boy wouldn't keep his eyes off Brianna's parents.

The Call of the Isle

She felt a strong desire to spend the first anniversary of her beloved husband's passing as they had often done before, so my sister, Julie, invited a few friends to join her on a Caribbean cruise.  Thanks to Dan's completely selfless support, I was lucky enough to be able to go.  The only problem now is that I want to go back!  And not someday, but right away! Or at least before too much longer.  Our time aboard ship was filled with two Broadway-style productions, a magic show, concerts by Billy Joel and Paul McCartney on the giant movie screen on the deck, gourmet dining, a little shopping, plenty of relaxing by the pool, and picking up a few valuable travel tips from fellow travelers.

As enjoyable as all that was, what really has me clamoring for more is the time we spent ashore.  For me, our day in Cozumel was better than a dream come true.  Julie arranged a five-hour private tour of the island for us, which of course isn't long enough, but we were under the ship's time constraints.  We loved our driver/guide, Nelson, who customized the tour according to our interests.

For our Day in Grand Cayman, we decided to do a meet and greet with stingrays.  I wish the creatures no harm, but I've met all the stingrays I ever want to meet.  One even bit my finger!  No sharp teeth pierced my skin, but a tiny little vacuum just sucked it right up into parts unknown.       That was followed by another mishap.  I took a tumble reboarding the catamaran, coming up  with an impressive black eye and a few other large bruises.  Someone gave me a chilled bottle of water to hold against my eye until the captain returned from his swim to a nearby boat for a bag of ice.  This should put an end to the pernicious rumor that my black eye was caused by fighting in the midnight buffet line.

Cozumel, oh Cozumel, I hear your call.