Ninth Trip to the NIH

 

 Signs of Christmas at the NIH! It’s such a happy place.  But we were reminded that there’s also heartbreak there.  We heard code blue calls to the pediatric unit, and silently prayed for the child who was fighting for his life, and for his parents, too. 

For me, it was all good news and good fun.  On Thursday, I had the best and easiest bone marrow biopsy I have ever had.  I don’t know what Dr. F. does differently, but I like it.  Very little pain at all.  (Look at bottom of page for BMB results).  Next I drank about 33 ounces of nasty oral contrast for a CT scan of neck, chest, abdomen, and pelvis.  Lymph nodes still enlarged, but decreased since Augusts’ scan. Macey joined Colin and me for a nice lunch in the cafeteria together, then I relaxed at the hotel, alternately napping and reading an Agatha Christie novel, while they took the Metro to the National Mall for a tour of the Holocaust museum. 

In clinic on Friday, I chatted with new CLL friends Joan, Jean and Jane, as we waited to be called back for our appointments with the CLL team.  A few of my ever-improving lab results follow:

WBC: 10.56 (normal 4.0-10.04)

RBC: 4.67 (normal 3.93-5.22)

HGB: 12.4 (normal 11.2-15.7)

HCT: 39 (normal 34-45)

ANC: 3.28 (normal 2-6)

ALC: 7.0 (normal 1-4)

Platelets: 227K (normal 173K-369K)

LDH: 143 (normal 113-226)

Last spring it was up to 2400!  Hap hap happy about all my numbers!  We picked up a 3-month supply of Ibrutinib at the pharmacy downstairs and headed back to the hotel to collect Macey, grab a quick Subway lunch, and walk to the theater to see The Hobbit.  I read it when I was 19 years old, so I reread it the weekend before going to Bethesda to refresh my memory.  We all liked it a lot, although I did fall asleep a few times during it as is typical of me.  Macey and I noticed the temperature had dropped while we were inside the theater, so we hurried back to the hotel and put on an extra layer of clothing, then caught a taxi to the Washington DC temple for the Festival of Lights.  A choir of young black kids, ages 5-18, from Baltimore delighted an audience of several hundred with their soulful renditions of Christmas carols.  On returning to Bethesda, we had a wonderful Italian feast at Mama Lucia’s.  Their chicken pesto ravioli was fantastico!  

On Saturday, Colin and Macey made another trip to the National Mall to see the sights, and I finished Christie’s Death at the Vicarage.  Not trying to brag or anything, but Colin was a wonderful escort and companion.  A lady in the Marriot even noticed and told him he was a good son.  Macey said she had a blast, which is a good thing because the trip was a combo 21st birthday/Christmas gift for her.  Dan went back to work on the 10^th, just two days before we left, and I’m so glad that he did well in my absence.  Not as well as when I’m home of course, but well enough.  He singlehandedly got our fragrant Christmas tree up and decorated, and now we’re eagerly awaiting Shane’s short holiday visit.  Merry Christmas, all! 



Bone marrow biopsy results:

Remember we look at two major things on the bone marrow biopsy. The first is total cellularity which is the total components of your bone marrow (white blood cells, red blood cells, platelets, and all precursor cells). For your age it should be in the 40-50% range. Prior to treatment you were 95%, at two months you were80%, and now you are 65%. It's still high because it looks like your normal cells are starting to come back. The second marker we look at is called CD79a and this specifically labels the CLL cells. Prior to treatment you were 95%, at two months you were 80%, and now you are 35%. You have had a significant reduction in the CLL cells in your bone marrow. I did not expect that the CLL would be completely gone, but looks like a good amount has been reduced. We retested cytogenetics so we will also see what happens to the 17p. 

Eighth Trip to the NIH

I’d only been home one week from Oct.’s visit to the NIH, when pain assailed me once again.  It started small, but became great …and dreadful.  Very different from the joint pain I’d experienced early in the trial, I didn’t realize it was from the same source.  It began in the right shoulder, then moved to the neck, from there to the left shoulder, back and forth between all three, then encompassed all three simultaneously, growing ever more intense day by day.  By the time Ethan, our PA son, came for a visit, I was ready to heed his advice to call the NIH docs.  I emailed Dr. F. on Sunday, the 11th of Nov., who promptly called and gave me permission to start a course of Prednisone.  That night I couldn’t even lie down to sleep.  I spent a miserable day, night, and day, sitting upright to try to keep my right side from hurting too badly.  This stubborn pain was spreading, I was suffering from shortness of breath, and acid reflux from all the pain meds I was gulping down.  I asked my good home teacher for a priesthood blessing to help with the pain and with my upcoming travel concerns.  Kirt came over with Chris Coltrin on Tuesday evening, and I began feeling improvement by Wednesday morning.  Thursday,  my friend Karen flew with me to Bethesda for my appointment the next day.

From the talk on gratitude I gave last Sunday, here’s what happened when we landed at Dulles We’re always pressed for time when we land, and have to hustle to catch the free shuttle to the NIH from the airport.  I’d been having some significant side effects lately and didn’t feel able to zip around as fast as I thought I’d need to, so I requested to be met with a wheel chair for more rapid transport.  There was a little mix-up about it which delayed us a few minutes, but all was straightened out and we were on our way, but not quite quickly enough to my mind.  I explained our dilemma to the lady who was leisurely propelling the wheel chair through the terminal, that we had a shuttle to catch or we’d have to wait 2 hours for the next one.  No change in speed.  Next, I sat up, straight and tall in the saddle, and reluctantly said, “Faster, faster!”  No change.  Then I ask Karen if she would go ahead and call the NIH and let them know we were in the airport, and have them tell the driver to wait for us.  Good, they said they’d do it.  Another couple of minutes fly by as we trundle slowly along, and then I ask,  “What time is it?”   Followed in another minute or two by  “How much farther??  And finally I revert to the ever-popular childhood query and ask  “Are we there yet?”  A few bars of “Here comes the oxcart, oh, how slow!” play in my mind, and then   I get the idea to rummage around in my purse hoping that the pusher lady will notice and realize that a tip will be forthcoming when we arrive.  I decide on $10 if we make the shuttle on time, but only $5 if we don’t, and that’s mostly for putting up with my, um, encouragement.  Good news, we made it!  We had a little gratitude fest right then and there.  Karen got in on it too, because she even handed the bus driver a tip for waiting those extra few minutes for us.”

I was able to get my labs drawn that afternoon upon arrival at the NIH, which meant results would be available by 9 o’clock clinic Time, and we wouldn’t have to hurry as much the next morning.  Labs looked good with WBC down to 19K; ALC down to 14.8; platelets up at 365K; and HGB slipping a tad to 11.2.  That good old C-reactive protein reading which had been normal last month told the story of my pain from the inflammatory response to the Ibrutinib, it was way way up to 69.8! Everything went perfectly, and I thank Karen for traveling with me!  Next visit is in two weeks.  Colin and Macey will be with me for the last trip of the year, which will include a CT scan, core needle biopsy of a lymph node, and a bone marrow biopsy.  Boo!

A New Little Bundle of Boy

Nihao,

My name is Jayden Zhou Walker.  I am two weeks old today. How old are you?

This is my mommy, Brianna

That’s my daddy, Jason.

 And I guess this must be my brother?  His name is Tass.  Uh, we’re not twins.

Go ahead and look me over..  Shh, they say I am super cute.  Do you think I am?  Are you cute too?  Big yawn.

I Love to Be in the Temple

Dan and I enjoyed a wonderful visit from Ethan and Missy and family last weekend.  Missy will show and tell you about our beautiful Boise temple tour.  But first I have to express my love and gratitude for their visit.  Brooklyn and Lilly amazed us by planning a fun party for us.  A few bags of balloons kept the girls and even Zaid entertained for hours.  Here’s the invitation Brooklyn wrote all on her own, and a couple of other party pics.

Now, it's your turn, Missy

 Hi All, I'm Missy, Bonnie's daughter-in-law, just going to tell you a little about our fun weekend trip to Boise.

 Entry Way

On Friday we went to Boise Temple Open House and OH MY HEAVENS it is SO PRETTY. I LOVED THE WOOD WORK, and the glass work was AMAZING, so pretty, LOVE IT!!! Bonnie got a sitter for our 3 year old son Zaid, so it was really nice to spend this time with the girls and explain to them what everything was and what the rooms were for. When I asked them what they liked about it Lilly said she LOVED that is was pretty and sparkly. Brooklyn liked the Baptismal Room and the stained glass in there (see picture below). A very sweet moment was when we were in the Celestial Room and Brooklyn got red faced and teary eyed, when I asked her if she was OK she told me, “Mamma, I feel the Holy Spirit in this room.” This little girl is so soft hearted, I LOVE it. I can’t wait till the Meridian ID Temple is built so we can come again and take the girls through another temple. We all had such a special experience; I’m so very happy we made the trip to take the girls to the open house of the Boise Temple.

 Baptismal Room

 Hall Way

 Sealing Room

 Endowment Room

Celestial Room

 Ethan with the girls outside the temple.

The girls wanted to have a party, which they hosted and planned, in the game room at Grandpa Dan and Grandma Bonnie's house. They were so cute, we had a drawing contest that Uncle Colin and Brooklyn won (sorry, I forgot to take pictures of our drawings), then games and treats. The girls LOVE coming to grandma and grandpa's house, I think because they get to do fun stuff like this more when we're there.

 Playing games

 

 More game playing. We're Washburns, we like to play games.

 

Uncle Colin had this AWESOME app that the kids thought was so fun. You take a picture and put a mustache on the person and then the face moves when you touch the screen. The kids thought it was the coolest thing since peanut-butter. 

On Sunday we went to Sacrament with Bonnie and then headed home to Washington. In all, we had a pretty awesome trip, thank you Dan and Bonnie for the fun time.

Below is the song I love to see the Temple, a primary song from our church. Bonnie asked if I would also add it to the blog. Hope you enjoyed my guest post and this wonderful song. 

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.

Sixth Trip to the NIH

A view from Brianna's window

Jumping for joy!

Greg and Shauna

Last week was exceedingly eventful! Jason and Brianna moved out of their cute, cozy home, and hung out at our place while their furniture was in transit, then just two days ago they moved into their luxury apartment in the South Lake Union area of Seattle. At the same time, Dan and I betook ourselves to Bethesda, where I received very good lab reports, and then we went on to Denver to experience the gloriously happy wedding of Greg and Shauna. Ethan’s wife Missy, had a medical emergency, so of course Ethan changed his plans to be home with her, but all of our other sons were there, Kimball, Neil, Colin, Shane, and even Jordan. That’s an indication of how much we all love Greg and Shauna and support their righteous goals and choices, and it is also a true life example of just how much our Heavenly Father loves us and hears and answers our prayers. I know He lives. And miraculously to me, I now know that Jordan is safe and happy. I. Am. So. Very. Grateful. For. This. Knowledge! Another bonus? We just gained 4 more grandchildren, Katey, Alyssa, Jossalyn, and Levi. ) But more about all this in a later post.

My WBC was down from 47K to 30.4K. (Normal range is roughly between 4k-9.5K.) For the first time in months, my hemoglobin is in the normal range at 12.6, and I can tell it! I easily kept up with Dan as we sped through the airports all across the fruited plains. Two of my sisters are going with me next month, and now I know I can handle the extra couple of days of sightseeing we’ll be doing. Platelets looking good at 183K. My C-reactive protein is down to almost the normal level, which means the inflammatory response I’ve had to Ibrutinib is practically no more, which is no surprise to me due to a recent cessation of the pain that had plagued me since late June. All this just goes to show that all is well, all is well.

Fifth Trip to the NIH

I’ve waited to report on last week’s NIH visit until I got the preliminary results on my bone marrow biopsy. They’re just in, from Dr. F. so here are the highlights. I’ve reached the two-month point on the clinical trial, so there was more testing than usual. The CT scan confirmed what we had already been able to detect from the easy to feel areas, that all the enlarged lymph nodes were significantly reduced in size. I learned that a scan I’d had in March showed that my spleen was 19 cm. in size, but was now down to 15 cm. What’s the normal size of an adult spleen? It’s about 10-12 cm. My CBC also showed improvement. My last few WBC’s dropped from 85k, to 65k or so, then jumped to 101k (while I was on Prednisone due to my inflammatory response to Ibrutinib), but it was now down to 45k. Hemoglobin up to 11.4, helping me to feel much better. Platelets well within normal range, at 191k! I was unable to get my C-reactive protein level, but I’m pretty sure it’s still elevated, because I still have some aches and pains.

The bone marrow biopsy was the only fly in the ointment. I was told the PA would be doing it, and that she was very good at them. So I was much more relaxed this time. Until, oh no!, I soon discovered that Dr. F.’s BMB’s are best! Pass the Kleenex, nuff said. Not only was the BMB not painless, but the results were not what I hoped for either. Maybe next time. But I don’t have to think about that until Dec. Here is Dr. Farooqui’s quick email:

When we talk about BMBx results we mention two things. One is cellularity which is basically all the cells that make up the bone marrow. Normally cellularity ranges from 50-60% in healthy adults. In your case prior to treatment your cellularity was 95%, and of that 95% the CLL comprised 90% of it. The BMBx 2 months later showed a cellularity of 90%, but the report did not comment on the CLL portion of it. I haven't had a chance to review it myself, but will do that next week. But basically overall there was not that much change. I think this drug works mainly on the lymph nodes and blood, and the bone marrow lags behind quite a bit.

Brianna and I stayed at the Marriott Residence Inn this time, and liked it most out of the three places we’ve tried. It has a rooftop swimming pool, and I just had to check out the famous pool of Bethesda! I couldn’t jump in as I’d like, because I had to keep the BMB site dry. But after Brianna gave me a tour of the area, we found we were locked out of the hotel! Would we miss breakfast? Would we miss my appointments? No. We called the front desk and they sent someone up who quickly set us free. I will never be free of the debt of gratitude I owe to the beautiful Brianna for going with me to the NIH all 5 times this summer. This is her last trip with me, and it has been fun every time! She and Jason have some very exciting adventures just ahead, and  I wish them all the best on their move to Seattle, where Jason has been recruited to work for Amazon.com.