We wait... and we live...

It's a strange time when waiting for this upcoming scan. No point in "bringing tomorrow's clouds over to today" as Lee likes to say, so we salvage the everyday gifts. Kelsey started school on Monday, while immersing herself in volleyball and softball practices. Carly moved down to Provo and her first class is today at Utah Valley University. We go through the motions at the office and at home, as Nick - aka Goldilocks - decided our bed is the comfiest in the house, watched Lonesome Dove.

Then Rob, Shaylynn and Trent came by last night and coaxed Nick out on the basketball court. Lee and I finally went to bed at 10:30 p.m. and as we listened to the sounds of laughter, the bouncing basketball, the hoop snapping back upright and the banter between buddies, tears streamed onto my pillow. So thankful for this everyday gift, found right in our own backyard.

Scan is tomorrow; meeting with doctors Monday at 9:30 a.m. Until then, thank you all for your words of encouragement, your warm thoughts and prayers and genuine support.

Lori

PS: My favorite quote (I've posted this before) is:

"Worry doesn't empty tomorrow of its sorrow, it empties today of its strength", Corrie ten Boom

PET Scheduled

There have been some questions about Nick's insurance. I'll try to explain - Nick was dropped by his dad's insurance because he wasn't a full-time student. He wasn't a full-time student because he has cancer. He subsequently went on Medicaid. In the meantime, there was a law passed, "Michelle's Law" that says you can't drop insurance on college kids if they are sick, effective 1/1/10. In the meantime, Medicaid declined getting a PET on Nick because they only authorize for initial diagnosis. Since he has relapsed, we have gone back to Medicaid asking them to approve for relapse staging purposes. In the meantime, part two, Nick's dad is able to get Nick back on his insurance effective the first day of college - Aug 23rd, since Nick was/is a full-time student since January of this year. In the meantime, part three, I gave Huntsman my credit card, saying, "Get the damned PET scheduled now and we'll argue with insurance later!" FYI - PET scan cost about $4,800.

Today's phone calls received today are as follows: 1) giving my credit card info; call #2) PET scheduled for Thurs, Aug 26th at 1:30 p.m.; call #3) Medicaid approved PET. Credit card info rescinded. Now was that really so hard?

So, PET on 26th and presentation to tumor board on 30th and meeting with doctors immediately following to determine treatment.

A few stories: Nick, Carly, Kelsey and I watched "Babies" - the documentary and once we got past the naked breasts with Nick and Carly's groans of embarassment, the movie was quite cute - just what we needed. Another story is when Nick and I were in the waiting room, still reeling from the news of relapse waiting to meet with the surgeon, there was a woman sitting near us reading a book, "A Hint of Witchcraft". Kind of a creepy book to read in the hospital, so I nudged Nick to take a peek and he said, "Hey, I'm in... I'll even hold the chicken!" Next, Nick and his friend Makelle decided to dye his hair - ah, the things that crack us up...

Finally, I had submitted an article for a local television show, "Good Things Utah" about people we know that do the right thing. This was about 3 weeks ago and I haven't heard a peep from the producers. Yesterday, I received an email from a friend saying something about watching Nick's story on Good Things Utah!!! I immediately sent an email that it might have been worth mentioning to me... and trying to get a link of the show so we can post it. Whatdya know..

All is well for now - I pick up Lee from the airport tonight and will have my balance back. Until the 30th, please keep the prayers coming!

With love,

Lori

Dropping "F" Bombs!

...and it's back. Nick had his CT done at 8:45 and we finally met with Dr. Voorhees at 11:00 who had the unfortunate task of letting us know the *!*?* cancer is back in Nick's abdominal wall, in multiple places. The good news is that his lungs are clear and his organs remain unaffected. Surgery is not an option because of there being multiple areas affected and radiation is also not an option because the risk of damaging his internal organs. Nick will have to undergo a PET scan as soon as possible (working through insurance b.s. as I type) to make sure there isn't cancer anywhere else. Nick's oncologist is out of town until the 30th. We hope to have PET done next week so doctors can present his case to the tumor board, also on the 30th. We also met with Dr. Andtbacka, a surgeon at Huntsman and associate of Dr. Mulvahill. He walked us through the results of the CT mentioned above. He also has an associate out at the Univ of Mass (Boston area) that specializes in cancer of the appendix. He is going to ask her to consider Nick's case, too. She hasn't worked with rhabdo before so the chances of her taking his case are slim.

Nick and I are doing ok, but there were many tears with several staff members at Huntsman and my heart broke telling Carly and Kelsey - we sat together and had a good cry. I told them it's times like these I wish I had great big boobs so I could snuggle them in to me close. They had to snuggle my shoulder bones and ribs, instead.

We're sad, scared and pissed off. So we'll all get in our jammies, watch some Chris Farley videos, pop some popcorn, make some Kool-aid and surround ourselves with our love.

With an enormous sad and grateful heart, I thank you all for praying for Nick and our family.

Lori

Uh oh...

Nick was in Vail last week as a counselor with First Descents - he had a marvelous time (he'll post soon with details and pictures). On Saturday, Aug 14th, he headed home and called us on the road. I asked him if he wanted to stop in Payson (an hour south of Salt Lake) and watch Kelsey play in a championship softball game. He said sure and added the dreaded words, "I'm not feeling so good." He found a lump in his left lower abdomen and has been having some digestive issues the past couple of weeks.

I was very upset until he arrived; then I could hug him, touch him, and look him in the eyes - I felt much better. He was already scheduled for a PET on Mon, 23rd - which was subsequently denied due to Medicaid guidelines. He is also scheduled for an MRI of his head and neck on Wed, 25th. I had already called Huntsman last week to try and change the MRI of his head to an MRI of his abdomen. We called again this Monday and asked for immediate help. He was scheduled for a CT on Thurs, 19th unless he couldn't wait; he couldn't wait so we went in this morning (unfortunately, Dr. Gouw is on vacation this week).

The doctor that saw Nick this morning ruled out infection (although he has been running a low-grade fever off and on) and anything with the upper abdomen. Dr found the lump Nick found, and a second one. He thinks it might be lymph nodes - Nick is having pain on both sides. Could be a blockage in his small intestine, could be complications from his pancreas not working properly, could be a million things. Labs looked good, however and his fatigue isn't too bad. Now we wait until he has his CT done tomorrow morning (Nick has reactions to the iv contrast so he has to pre-medicate 13 hours in advance of scan, which is why he couldn't have one done today.)

So, please pray for Nick - scan is at 8:45 a.m. with a doctors appointment at 11:00 to discuss results.

Until then, we wait...

Lori

3rd Annual Charity Softball Tournament

We are thrilled to announce our next WACKY event - the 3rd Annual Charity Softball Tournament to be held on September 10th & 11th (during National Childhood Cancer Awareness Month). Salt Lake County Parks & Rec have generously donated 12 fields so the number of teams that can play have TRIPLED! It is going to be a blast!

In addition to traditional ASA tournament play for 10u, 12u, 14u & 16u girls, we will be hosting the skills contest again this year on the 10th. We will have a raffle and Nick has challenged his sister, Carly, to a co-ed, slow-pitch game - also on the 10th. All attendees (excluding players and umpires) are encourage to dress WACKY!

Please visit www.nickswarriors.org or www.wackywarriors.org for flyers and registration information. Or, feel free to email me: lorib@quadrantliving.com.

I am shamelessly asking our readers to help us find prizes to be donated for our raffle, the winners of the 4 different age brackets and the winners of the skills contest. I also could use anyone's connections with fundraiser ideas - headbands, wristbands, etc. We have been given permission to sell our own merchandise on the fields and we want to take full advantage of this great money-making opportunity.

Of a special note, we acknowledge there are many children in our area that have been affected by cancer. If you know of any child and their family that would like to be our honorary guest at this tournament, please contact me. Nick's charities supports CureSearch, which does research for ALL children's cancers.

Nick is still doing terrific! Love to all,

Lori

Donations Made Today!

It is with humble appreciation to announce that I mailed out two checks today - to both CureSearch and First Descents for $10,393.78 EACH! We still have some pledges floating in, but we can send those in with the donations raised for the charity softball tournament in September. I truly can't believe the generosity, commitment and support of Nick's WACKY Warriors. We WILL make a difference!!!
Nick riding Shadow (our friend, Melanie, took Nick on a trail ride up at Middle Fork, Utah)

Nick has been working - yes, that's right - working in Moab for the past few weeks as a wrangler. Besides cleaning horse stalls, digging fence posts and other cowboy duties, he has been working with a 5-year old horse named Toby. Toby hasn't been ridden much so Nick is learning how to work with him to be a trail horse. They are both getting an educational experience.

Before he left, I captured an amazing event in Nick's life... he did his own laundry! I was speechless, thrilled beyond words, a monumental maternal moment that my son was indeed independent. After he left, however, my euphoria immediately deflated when I went into his bedroom, wanting to suprise him by changing his bedding. To my dismay, I found dirty dishes, dirty cups, tissues, toothpicks, heaps of dirty clothes, heaps of clean clothes (what in the world was left to wear in Moab? Is he now the naked cowboy?), 37 shoes, 5 belts, receipts, school books... and that was only 2 feet inside his room. I cried. Then I cursed. Its a good thing he is still in Moab.

He will update when he returns. He has some fun summer trips coming up and we are so very, very grateful he is feeling good.

Please pray for a couple of very sweet spirits I have been following:
http://www.caringbridge.org/visit/elliepotvin and http://www.carepages.com/carepages/DavidBuckUpdates/updates/

They, and others, are our reasons to keep fighting!

Love to all,

Lori

We'll miss you, Coach Wooden

Way back in 1996, Lee Brower co-founded the Utah Tip Off Club as a way to honor Utah's prep players, coaches and referees. To promote the event, Lee invited Coach John Wooden to participate by simultaneously awarding the national NCAA basketball coach of the year, the "John & Nellie Wooden Award". This annual event involved many hours by those in our office, especially Lee's oldest daughter, Melody. We worked countless hours tallying votes, making travel arrangements for the winners, working with the press and organizing every detail of the actual event itself.

Working with Coach Wooden and his daughter, Nan, for over six years was a memory I will cherish for the rest of my life. Everything you have read about Coach recently is true. He is by far the most humble, gracious, kind, man-of-his-word, gentleman I have ever had the privilege of meeting. Each year, he gave a speech that was humorous, poetry-filled, accurate and relevant. Each year, his body moved a little slower, but the gleam in his eyes never dimmed.

Working with Coach also allowed me to include Nick in the activities. On one occasion, Nick had the opportunity to go with me to pick up Coach and his family at the airport - executive terminal, of course - in a stretch limousine. Nick was only 10-years old at the time and his eyes were big as saucers sitting in the big back seat. He really didn't seem to know why there was such a fuss over this older man - looked like a regular grandpa to him. Coach Wooden came straight over to Nick, shook his hand and the first thing he asked Nick was if he was getting good grades in school. His second question was if he played basketball. Nick shyly nodded his head to both. I kept whispering to Nick, "remember this moment, remember this moment." He began to realize something big was up when we escorted Coach and his family to a private room in the hotel, where an informal interview was set up with a few of our local reporters. Many photos were taken, many basketballs were signed - all with a warm smile by Coach.

Lee and I became close friends with Coach and our last visit to his condo a few years ago was incredible. One moment included Coach showing us his new children's book, Inch and Miles. It is a beautifully illustrated book, based upon his "Pyramid of Success" principles, written in terms that children can understand. He had just received the original drawing from the illustrator earlier in the day. She had sent him page 12 from the book, because she knew it would be his favorite. He smiled as he showed it to us and we knew instantly why: on the drawing of the tree, she had inscribed "Nellie + JW" enclosed by a heart. His love for his beloved Nellie grew stronger every day, although she had passed over 20 years ago.

We purchased 100 books and have used them on numerous occasions. We have hosted a team-building meeting for both Carly & Kelsey's softball teams and gave each girl a book. Very powerful and impactful, yet had nothing to do with softball directly.

Coach Wooden was an extraordinary man, mentor and friend. We learned much from him. Although he lived a spiritually gifted life and is finally with his sweetheart, Nellie, we will miss him dearly and thank God that Coach found his way into our lives. He is the epitome of the rock that makes a ripple - ripples that will reach many more generations to come.

Lori