One Sweet Weekend

Long past due for a visit to Arizona, last weekend we took a flying leap and landed there within a few short hours.. Kimball and Jessica could not have been more gracious hosts, making us feel comfortable and welcome the whole time. Jaxon, Kade, and Sophia melted our hearts like butter on a couple of piping hot Idaho potatoes. Amid our comings and goings, we actually found time to play several games - Crazy Eights, Hearts, and musical hot potato - with them, take in a Star Wars movie at the theater, read a little, and listen to Kade practicing on the piano. My brother Johnny lives nearby, and he hosted a big barbecue to prove to his friends that he really did come from a fairly normal family. He told his neighbor that he didn’t see his family often, and that one of his sisters had never even seen him at all. Um, that would be yours truly. My sister Jamie from Florida and her daughter Sarah, and her granddaughter, almost 15-month-old Josilyn, were there, as well as my sister Becky and her husband Ray from California. Becky’s son Brandon and her daughter Annette and Annette’s family were also able to attend the barbecue. Our sister Julie was scheduled to fly in on Saturday, but on Friday night her husband Lonnie was found to have two brain tumors. It was good to be together to absorb this difficult news. Usually, we’re far apart, and it was easier to draw strength from one another when we could talk, and hold hands, and pray together. We also went to the Mesa temple and were able to do the work for some of our family members that Julie had provided for us, and put Lonnie’s and Julie’s names on the prayer role, where many people will be praying for them for the next two weeks. Our sister Jenny was busy with her new job as a Trailways bus driver, but we hope to get everyone together again for fun times, sooner rather than later. We don’t want any more members of the Bonnie-Johnny-Lonnie club though, please! Johnny has polycythemia vera, Lonnie has had surgery and will be doing radiation soon for the tumors, and I have active CLL, a sinus infection, and two ear infections. Stay healthy, everybody!

Jessica put on a lavish brunch for all of us on Monday. She made it look effortless, but I know it wasn’t. She’s a great organizer and knows what she’s doing. Would that I had those talents and skills. It was fun to see Jaxon and Kade lending a hand by cheerfully cleaning their rooms, and picking up and vacuuming upstairs. Kimball, like his dad is at such times here, was a great help in the kitchen. I am so thankful for our ever-expanding family! Our sons have chosen well! And I always think of how happy our parents must be when their adult children and posterity get together and enjoy each other’s company like this, too.

Sophia was always at the ready to grab my hand and take me to wherever I needed to go. What a cutie shie is. No, make that what a beauty she is. She told her mom and dad that she likes to wear beautiful clothes, not cute clothes. She has a loving, caring nature. Jessica said that when she was taking ballet when she was just a toddler, she would help the other little girls get their outfits on whether they wanted her help or not. As we walked upstairs holding hands one afternoon, she told me, “Grandma Bonnie, you should eat carrots. I eat carrots and my eyes work really good.” She didn’t stop there though, she added, “If you don’t have any carrots, just tell us and we’ll get you some.” Precious child!

I have to include one more sweet, funny comment from a child. Just yesterday, I got a nice email from Shauna, Greg’s best friend. Shauna’s children call me Grandma Bonnie, having picked it up from Greg’s little ones. Shauna wrote:
“I have another silly kid moment to share with you. This morning, the kids
and I were reading a blurb in an old Friend magazine about a 10 year old
girl in England who had had cancer. After we finished our reading we talked
a little about how you had it, and the subject of chemo came up. I
explained that more than likely the little girl would not be able to have
children of her own. My 9 year old, Alyssa said, "Oh, how sad! Grandma
Bonnie won't be able to have another baby!" I had to giggle at the thought
of you adding one more boy to the mix of things.”
And with that, I’ll sign off, laughing.

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.