Updates and Downdates

Shane’s so good about sharing his BYU life with me. I love hearing about his classes, and everything else. He’s appropriately serious about his studies, but he also finds time for fun, and maybe even a prank or two. Ask him what he wore to last week’s dance at the Wilkinson Center, for instance. Another thing about the Washburn guys is that they are prone to fainting when they donate blood. It happened to him yesterday, along with something I’d never heard of, tetany. Tetany is sort of a muscle spasm, I think. I couldn’t find much to read about on it, but he was told that his arm wlifted involuntarily when he was unconscious. It’s so kind of him to donate blood, (goodness knows this family has needed enough of it), but next time he’d best wait till after class to do it. Greg remembers all the available brothers having to take a blood test years ago, when Ethan was found to have a low white blood count. He reminded me that when he fainted, little brother Neil was there to make fun of him. Greg got busy doing something else, and then he heard a gurgling sound, and looked over to see Neil passed out with drool dribbling down his face. Those were the good old days when we knew next to nothing about blood counts! Ethan was sent on his way with a diagnosis of idiopathic neutropenia, or maybe it was idiopathic familial neutropenia, because his brothers’ counts were also low.

Well, my counts are not low. My white blood count was at 66K on Jan. 18th. The FISH results showed that 68% of my cells have the 17p deletion. Not good news at all. The 66K count is somewhat deceiving, because those are the WBC’’s in my peripheral blood. There are a lot more of them hanging out in my lymph nodes and bone marrow, where they’re not as easy to measure or treat. There are also not many tried and true treatments that work well with 17p deleted cells. Most CLL specialists advise clinical trials or a transplant. My local doc is recommending PCR, the same treatment I had 5 years ago. It worked amazingly well for me, it’s true. But then only 36% of my cells had the deletion. Also, after treatment, I still had 30% CLL cells in my bone marrow, and I was told by a specialist that most of those would likely be the resistant 17p deleted ones. With such a big jump in the percentage, I think it proves Dr. Terry Hamblin of Great Britain was correct. I counted on asking him how to proceed when I needed treatment again, but he died on Jan. 8 of abdominal cancer. He was a kind and wonderful man who freely gave of his time to help CLL patients all over the world. He joined our CLLC Friends site to answer our questions, and replied to emails from thousands of patients. It’s doubtful I’d have another good response to PCR, which is not recommended for us 17p folks anyway. So, I’m reading all I can, and asking Heavenly Father for His guidance. I regret that my local oncologist doesn’t have my full confidence, but he is very busy treating all cancers and is not a specialist in any one type, and can’t possibly keep up on all the latest research in so many different areas. We became even more aware of those limitations when he treated Jordan. Good doc, just not a specialist, and very, very busy.

I’m mulling over how much effort I should put into fighting CLL. I would love to share more milestones with my precious family. But I have shared many, and my mortal mission might be said to be complete. So, lots of questions need answers.

New Primary class:
My co-teacher, Amy, and I are teaching 7 10-year-olds from
the Book of Mormon this year. After being with one class for 3 years, I wondered how starting with a new group would be. It will be fantastic! They’re bright, good readers, fun, and not so busy talking to one another that they don’t listen. So I’m looking forward to learning right along with Payton, Alex, Gracie, Elizabeth, Colton, Dylan, Jared, and Amy, too.

New Address:
Shane has a new address. He’s in Provo now, studying at BYU. Talking with him about his classes and activities brings back good memories of my own. Last Friday, he hiked up to the top of the Y on Y mountain. Dan and I did that back in the day. Class registration took place when he was still on his mission and unable to take care of it himself, so a kind and helpful young guy, Seth Taylor, registered for him back in early Nov. Shane talked with several professors and a counselor to make a few adjustments to his schedule, because he’s serious about making the most of this important part of his life. I am very grateful he’s there doing what he’s doing, but at the same time, I miss him like crazy, and I’m going through the dreaded empy nest feelings all over again. But today was better than yesterday, so I think I’ll make it.

New Trip:
We had the pleasure of staying with my sister Julie when we went down to UT. She has a big family dinner every fast Sunday, and we were lucky enough to be there for it. Yum, turkey and all the trimmings, followed by a hearty breakfast the next morning. It was very fun to see her sons and daughters and grandchildren! Amy’s baby, 8-month-old Jones, just about stole my heart right away. Cute cute families! Looks like we might get to se our Arizona grandchildren soon, too. Looking for tickets tomorrow. It’ll be sort of a mini reunion, with a couple of my sisters and a brother there at the same time.

New concern:
My left ear! Had an ear infection over Christmas, which the doc says has cleared up, but my hearing still isn’t back to normal. Hope it comes back, pronto. My cervical lymph nodes, those under the jaw line and in the neck, got really really big for awhile, but reduced a bit as the infection abated. Interestingly, my WBC dropped from 63K to 25K while the nodes were at their biggest. I’m wondering if those stubborn lymphocytes were hiding out in the lymp nodes for awhile. Now that the nodes have gone down a bit, I’m curious to see where the WBC is. Are they circulating in the bloodstream again? Most likely I’ll find out at my appointment on the 18th, and I’ll get the results of the FISH test, which tells me what percentage of my cells have the unfortunate 17p deletion. Hoping for good news while preparing for possible bad news.

Do You See What I See?

Shane's joyful homecoming.

Halloween party held after Thanksgiving.

Christian's just hanging out.

First ever Thanksgiving for McKay & McKenna.

Shauna shows how to make chocolate turkeys.

Jason, Sage, & Shane playing Bausack.

Early Christmas party.

I see Love.

So Grateful for Shane's Homecoming and the Holidays

I'm hoping to find a way to get pics posted later, but I can't wait any longer to rhapsodize about last week's joyful events. First of all, our youngest son, Shane, arrived home from the NY NY South mission. So many people said the two years had gone by quickly, but not to me, his anxiously waiting mother. He has learned so much, and he is willing to share! His sacrament meeting talk was on how the mission strengthened his testimony of our Savior, Jesus Christ. He admits he left with some trepidation, aware that he had a testimony, but being able to gain confidence in that testimony as he served among the Spanish people of New York. In the beginning, he thought he had to accomplish things in his own strength, but he learned to trust in the Lord's strength instead of his own. He kept several journals of his experiences, so he knows the exact date that Mosiah 4:2 filled his mind with a new understanding of this. "And they had viewed themselves in their own carnal state, even less than the dust of the earth. And they all cried aloud with one voice, saying" O have mercy, and apply the atoning blood of Christ that we may receive forgiveness of our sins , and our hearts may be purified, for we believe in Jesus Christ, the Son of God, who created heaven and earth, and all things; who shall come down among the children of men." I think at that moment, he knew Jesus, instead of just knowing about Jesus, and it was a transforming moment in his life. He had 13 companions in all, and the last 3 were somewhat difficult for various reasons. But he still learned from each of them, cares about them, and tried to be helpful to them. He started working today with his friend, Sage, and will be with us until he leaves for BYU in early January.

We had a large welcoming committee to greet him and spend time with each other last week. Ethan and Missy and family arrived on Tuesday. Big thanks go out to Missy for doing so much to help us get ready for all our guests. She scrubbed two neglected showers, and alerted us that the shower heads needed to be soaked in LimeAway. She also shopped for us multiple times, and helped prepare meals. Whew, where would I be without my right-hand girls! Neil and Penny and the 11-month-old twins arrived Wednesday before noon. I had so much on mmy mind that many desires fell by the wayside. I could just kick myself for not begging someone to take pictures of the little guys while they were here! We didn't get pics when we were there last May, either. Doh! The babies go to bed at 6PM, so Penny stayed home finishing up our dinner preparations and tidying the kitchen while we all flocked to the airport. She and Missy and Brooklyn and Lilly made posters, and Missy bought balloons, to take with us to give Shane a big welcome. Sarah Arnold showed Brianna how to form long, skinny balloons into heart shapes to carry out our Valentine's Day decorating theme. And Joan W. made a heart-shaped cake. Shane was greeted by lots of Washburns, Darringtons, Jason and Brianna, Kirt Naylor, and Sage and Bret. Yay Shane! And thank goodness Missy remembered to make the Spanish rice I forgot, to go along with the Tex-Mex chicken cobbler Penny worked on.

On Thursday, we had a nice Thanksgiving dinner. It wasn't the paper tableware that we'll remember, but the company we kept. It was simple -- turkey, stuffing, mashed sweet and white potatoes, green beans, cranberries, homemade rolls, and Brianna's mini cheesecakes. Jason supplied the games, and the rest of the day is a blur to my tired but happy mind. Oh, we love his game, Bausack! And Sage reigned supreme.... this time.

Shopping and shopping came next, then Halloween. We figured since we don't get together for most holidays, we'd celebrate several of them at once. Greg arrived in a 12-passenger van with his 3 children, and his special friend, Shauna, and her 4 children, Friday evening. Woohoo, the decibel level rose even higher now with 9 more added to our number! Another simple dinner of ham, bewitched stuffed potatoes, more green beans, and treats of Bug Juice, gummy pumpkins and spiders for dessert. Penny brought lots of yarn, and attached one end to the treats, then wound them around the furniture in the game room to form a giant spiderweb. Each child had to follow his own long piece of yarn to find his treat. They also shot Silly String at Spiderman, used a pumpkin for a bowling ball, and had to figure out how to eat doughnuts suspended from a string.

On Saturday, everybody but the oldies and the youngies went off to romp around at a Bounce place. Word is that it was a whole lot of fun! Christian got stuck up 9 or 10 feet high on the sticky wall, but Greg was able to pull him down to terra firma after a few tries. By the time everyone was back in the afternoon, we had 13 adults and 12 children in our just under 1800 square foot home. Off to the playroom with you, children, while the grown-ups play a couple of rounds of the white elephant gift exchange game. Good gifts were brought by all, but I think the favorite was the tiny one-soda-pop-can-sized refrigerator that Jason and Brianna supplied, and Colin stole. Then Neil lit off a string of firecrackers which somehow caused gifts for all the children to be scattered around on the front lawn. He said something about seeing an unidentified flying object in the skky, and just naturally lighting them off to divert it away from our property. Whatever happened, the kids were happy to have gifts to open! Jason then led teams in a game to see who could build the highest tower from a set amount of spaghetti and marshmallows. Colin and Macey won that one.

And then, I had a stroke of genius. Let's all go to a Chinese buffet for dinner!!!! Ah so, and so we did, everyone except Neil and Penny and McKay and McKenna. They needed some peace and quiet by this time. Shane's talk was wonderful on Sunday, even after all our shenanigans. My prayers were answered and everyone had good traveling weather. Bonds were strengthened and memories made. We missed Kimball, but he called several times to let us know his heart was with us. And we are all living happily ever after.

On This Date, and CLL

Dec. 2nd is always a day of remembrance for me. Four years ago, when the day started, I was on top of the world. By day's end though, a change had blown in like a hurricane. Jordan called from China that evening with the news that something was very wrong. He had fainted while teaching his English class, and Brianna had made him go to the doctor. There they had learned that all of his blood counts were dangerously low. I asked him to read his CBC to me. So he got a copy of it, and called me back. When I heard it, my heart was immediately seized with great fear. So began the saddest chapter of our lives. Interestingly, some are closer to the Lord now as a result of Jordan's ordeal, and others seem about the same as before.

I thought I might as well report on my own CLL saga today, too, sort of lumping all the health-related topics together in one post. First, a brief history. My younger brother, Jim, my dad, and my Grandma Jennie all had CLL before me. But inexplicably, it never even occurred to me that I might have it as well, even when I became symptomatic.. I guess that's called either denial, or stupidity. In my defense, I didn't really know much about CLL because I didn't have computer access when my loved ones were dealing with itt, and it wasn't uppermost in my mind when I finally gained a few computer skills. In June of 2004, I had a case of strep throat, and my cervical lymph nodes became quite enlarged. The strep didn't respond to the first course of antibiotics, so I had another round of a second kind. But even when I was well again, the lymph nodes remained swollen. In Feb. of 2005, I sought medical help in overcoming a realy bad cold, which turned out to be pneumonia.. A smart PA asked me if I had a family history of any bad diseases. I answered, "Yes, CLL." He asked me to follow up with Dr. Lisa. She did a few blood tests, and called me on Valentine's Day with the great news that I only had mononucleosis. Much better than CLL! Over the next few months, I felt better, but now the axillary lymph nodes were enlarging, too. What could it mean? Another horrible cold sent me scurrying back to the doc in Feb. of 2006. This time, one test led to another, and I was officially and correctly diagnosed with CLL AKA chronic lymphocytic leukemia, which I'm certain had been there all along, not mono. I was able to avoid treatment until March through August of 2007. I chose PCR, Pentostatin, Cytoxan, and Rituxan. After treatment the lymph nodes were no longer palpable, and I felt grrrreat! .... until I had a bone marrow biopsy and learned that I still had 30% atypical infiltrates in my bone marrow. Still, I was better, and that was very good. Sept., Oct., Nov., wonderful months! Dec. 2nd, sad.

Over the past year, my white blood cell count has been steadily climbing, and both cervical and axillary (neck and armpit) lymph nodes are bulking up once again, my fatigue level is greater, and I know treatment is right around the corner for me. I'm not sure what it will be this time, but I have begun reading up on the options in an effort to be prepared to make informed decisions. Not my favorite reading material, but necessary nonetheless.
Note: I apologize if the format of this post, or any other one, is messed up. I hope it's decipherable.

Those Who Love and Other Books

I've recently read some truly excellent books. It took me quite awhile to get through Those Who Love: A Biographical Novel of Abigail and John Adams by Irving Stone (it's over 600 pages in length), but I just finished it this afternoon. Scurrying over to Wikipedia to check on a few facts, I was surprised to find that today is actually Abigail's birthday! If only my magic wand worked, I would certainly wave it over every woman, young and not so young, so that she'd curl up with this well-researched book, and get acquainted with Abigail, a highly principled, intelligent, devoted-to-God-family-and-country, thoroughly admirable woman. Our struggle to gain independence from Great Britain was transformed from cold, historical data to a vivid, suspense-filled story by Stone's talents. A fascinating, inspiring read!

I'll Watch the Moon by Ann Tatlock is a novel set in the 1940's. Even though the characters are purely fictional, their lives are convincingly enough entwined with actual historical events that I was both enlightened and entertained as I read the book. Always a softie for child protagonists, I was easily won over by this story told from the viewpoint of a nine-year-old girl.

For great family reading, do not miss Ralph Moody's Little Britches series. I'm only on the third of eight books, but I am totally in love with the Moody family. As a reviewer noted, their "money and prospects may be in short supply, but not their faith and resourcefulness." Every member of the family pulls together to keep themselves afloat in very difficult circumstances. Ralph freely admits his mistakes, and shows how his parents wisely guide him along the path toward honest, honorable manhood. Reading aloud with little ones, you'll want to skim over some of the words the rough and tumble cowboys use.

Now for lots of laughs, there's nobody like Ann B. Ross's Miss Julia. She's a spirited southern lady who always finds a way to solve any problem that confronts her. I can almost taste her sidekick Lillian's fried chicken, biscuits, and pound ccake as I speed-read through each book. It's easy to get caught up in Miss Julia's world, and hard to push back from her dining room table and leave her gracious home when the last page is turned. For best effect, I recommend reading the series in order.
MISS JULIA SPEAKS HER MIND
MISS JULIA TAKES OVER
MISS JULIA THROWS A WEDDING
MISS JULIA HITS THE ROAD
MISS JULIA MEETS HER MATCH
MISS JULIA'S SCHOOL OF BEAUTY
MISS JULIA STANDS HER GROUND
MISS JULIA STRIKES BACK
MISS JULIA PAINTS THE TOWN
MISS JULIA DELIVERS THE GOODS
MISS JULIA RENEWS HER VOWS
MISS JULIA ROCKS THE CRADLE

Autumn Birthday Dinner

Here we are celebrating the October birthdays of Colin and JoLyn. The menu included dinner in a pumpkin, roasted pumpkin seeds, pumpkin biscuits, broccoli, pumpkin roll cupcakes, and caramel apple sundaes.