First Descents Ball

Friday morning began with the usual news - Nick is neutropenic - his ANC count is .8 meaning any fever earns a trip to the hospital. Here's a great idea, let's take Nick to a fundraising ball in Vail, Colorado, so he can mingle with about 500 people tomorrow night! He started on antibiotics to at least ward off a germ or two.

Friday afternoon included a camera crew from "Turning Point" in our home. Turning Point is a PBS documentary series aimed to motivate and inspire ordinary people to re-evaluate their own contribution by sharing moving stories of other "ordinary people" who have truly made a difference. Turning Point is doing a story on Brad Ludden, founder of First Descents, and asked to follow a camper around allowing him to share his story of why First Descents has made an impact on his life. FD chose Nick and next thing you know, we have a camera crew - complete with an audio boom, interviewing Nick. I arrived home 30 minutes late to pick up Nick, specifically avoiding the crew. I was wrong in my timing as I was quickly seated in a chair to answer questions about Nick and First Descents. No time to check the mirror or my nerves. I did good, though, and didn't cry once! Thankfully, Nick did a superb job and the crew will meet him at camp next Monday to tag along with him there.

Lee, Nick and I finally hit the road towards Moab. We arrived around 10:30 p.m. so just had time to say hi and good night to our friends. The next morning was absolutely beautiful in Moab. We enjoyed a delightful breakfast on the patio with Colin & Monica, overlooking the Colorado River. We made it to Vail around 3:00 p.m. in time to get dressed and arrive at the silent auction by 5:00. Nick looked particularly handsome, with the help of his new mustache. Many people asked Nick if it was real, but he explained if it was real, only the left side would have grown in. The first people to greet us was Brad Ludden, Corey & Lisa Nielsen. The FD Ball was first class. We were able to bring home a few items that we "won" in the silent auction. Dinner was delicious! There were a few guest speakers: April (aka Lemon Drop) - a breast cancer survivor and FD camper; Ryan Sutter (aka G-String; aka Ryan & Trista from the Bachelorette) - raised over $100,000 by competing in 10 major endurance events in 2010; and my favorite, Tailz (can't remember what his real name is) - he was the first blind camper to make it down the river in a kayak, assisted by Brad who was in a kayak ahead of him, paddling backwards, calling out instructions. His story and short video were amazing and solidified why we love FD so much. Nick was surrounded by his FD friends and he had a blast; what a perfect environment for him! We have some footage of him dancing but we promised we wouldn't post it. Matt (aka Mateo), Kelsey (aka Buttons) & Nick (aka Nickname)

Corey (aka Darryl from Darryl & Darryl - Brad is the other Darryl), Lisa (aka Googleybear) & Nick (aka Nickname) Amy & Matt (aka Southpaw) Meiners & Nick (Matt is a fellow rhabdo warrior and we have followed his journey through his blog; it was fantastic to finally meet them both!)

We made it back to Moab Sunday morning for Nick to attend the next two rock mountain climbing FD camps - a perfect venue for Nick's well-being. Nick had a hiccup in having some car troubles. After several phone calls, a tow truck and a borrowed vehicle (thank you, Colin), he is back with the pack. Wow, car troubles - what a normal experience for a 22 year old! It's going to be a great two weeks!

If you are curious about FD, here is a great article written for ESPN: http://sports.espn.go.com/espn/thelife/news/story?id=5543425

With love,

Lori

We're going to sleep well tonight!

Scans are clear again - unchanged from the last scans! So, the chemo is still working at keeping the cancer at bay for now. Although Nick proclaims he wasn't worried and feels he had to have a scan for no reason (which includes drinking two nasty containers of supposedly berry flavored chalk contrast), there was an enormous sigh of relief from Dr. Gouw that echoed in all the rest of us. Nick last drained his tummy on Friday and hopefully won't have to drain it again for another month or so. We hope to hear back on the clinical trial by the time Nick has his next chemo on April 18.

We will celebrate by attending the First Descents Ball (Lee, Nick and I) in Vail this weekend. Nick will drive to Moab from there to attend two weeks of First Descent's rock climbing camp as assistant director. He has been so looking forward to this trip!

We are also gearing up to promote the first annual CureSearch walk/5k on July 9th and the Leadville 100 on August 13th. I will post soon with more information.

Thank you all so much for the prayers!
With love,
Lori

Leadville, Packers & Scans

What a week!!!!! Nick finished up round 28 today, but with a potential set back. He drained 3.5 liters in 3 days, which has prompted Dr. Gouw to schedule a ct scan asap (Monday at 8:30 a.m. to be followed by appointment with Dr. Gouw at 2:00 p.m.). May be that cancer took advantage of the extra week off treatment. Thank goodness the fairy godmothers came to visit!

To offset this news, we received an email from Larry Linne today, confirming a donation commitment of $10,000 to WACKY - here is his story:

The Leadville 100 is a 100 mile epic mountain bike race within the high altitude mountains and valleys of Leadville, Colorado, created for only the most determined athletes looking to challenge themselves and impress the world. The majority is on back-country roads - treacherous Colorado rocky terrain - with some short sections of paved road. The entire course is 9,000 feet and climbs to 12,600 feet. In 2009 Lance Armstrong won the ultra-marathon race in a record time of 6:28:30.

Larry Linne, a friend and business associate of Lee’s developed through Strategic Coach, has announced his commitment to participate in this grueling annual feat that will be held August 13th. Not only is Larry riding to raise money for Bethel School for the Blind (he and his wife adopted their daughter from this orphanage in China – www.bethelchina.org), but has also expressed his intent to race for Nick’s WACKY Warriors, too. He designed his own shirts combining the two – Samurai Wacky Warrior Against Cancer.

Here is an excerpt of Larry’s intention in his own words:

“My daughter (adopted from China two years ago) is 15 and blind. The entire race at Leadville, I will be thinking of her and Nick. My motivation will be how hard they could and would ride if their bodies would allow them to do so. Maybe what we raise will provide that opportunity for one of them or for others to be in a future race.”

Larry has set a vision of raising $25,000 and has already hit the $12,500 mark!

In addition to Larry’s commitment, First Descents will also have a team of 20 participants, also competing in the race this year.

AND THEN...

On our way home from the hospital today, I had to stop by the office real quick. On my desk was a Fed Ex package addressed to Nick from Dan Burkwald, another friend who has supported Nick throughout his entire journey.

Enclosed was a Green Bay Packers jersey signed by the one and only, Aaron Rodgers! Per Dan, Aaron signed the jersey on March 16th, specifically for Nick. Aaron is on the board for the Midwest Athletes Against Childhood Cancer and Nick's challenge touched him.

So as cancer tries to terrify and control our lives, God is answering our prayers by sending these wonderful angels on earth to us, with support, gifts and unconditional love. Thank you fairy godmothers, Larry, Dan & Aaron and to all the others that continue to send prayers our way.

Please keep them coming - we will need them on Monday. With loads of love,

Lori & Nick

Rounds 2, 3 & 28

Nick and I are still waiting to get his infusion (round 28) started after meeting with Dr. Gouw. Meeting was short and sweet - sweet in that he gained 4 lbs and short in learning that his actual tissue samples were never sent out for testing (miscommunication somewhere). With steam still spewing from Dr. Gouw's ears, he assured Nick samples will be delivered today. Looks like another 3 weeks before we get results.

While we are waiting, I'll recap our trip. Upon arriving Wednesday night, we were quite excited to find out that the BYU basketball team was staying at our hotel (ok, Lee & Carly were excited). Kelsey and I decided we deserved a treat at the Cheesecake Factory while Nick & Carly stayed in their room to channel check (Lee flew in from Nashville Thursday morning). We soon spotted the entire BYU team sitting at the restaurant, too. Kelsey quickly called Carly to see if she wanted to come down, but both Carly & Nick were like, "Oh, whatever. If it's really the basketball team, go get an autograph from Jimmer!" (FYI non-BYU fans - Jimmer Fredette is the #1 scorer in the nation.) Kelsey said "fine." I handed her a napkin and pen and walked her over to the general area they were seated. Luckily, Jimmer was seated right at the end; Kelsey took a deep breath, with her siblings doubtful comments still ringing in her ears, took off around the corner. I grinned as I heard her say, "Jimmer? Could I have your autograph, please?" He said "Sure," and then she continued the conversation by asking if his roommate's name was Bench. He confirmed and asked how she knew. She explained her sister is friends with him. He thought that was way cool and now Kelsey thinks Jimmer is way cool. The best part was when Kelsey brought the signed napkin back to show Nick! A fun night for Kelsey.

The games on Thursday for rounds 2 & 3 of the NCAA tournament were amazing! We got to see Morehead State beat Louisville; Richmond beat Vanderbilt and Gonzaga beat St. Johns - all upsets. And watching Fredette was an experience all in itself. I'm a "commissioner" for our local NCAA pool and watching the leader board change continually was quite interesting.

We had an over-enthusiastic, loud, obnoxious, annoying, foot-stomping, fist shaking, BYU fan sitting next to me. Regardless of the absense of foul language and beer, this fan made me want to smack her. Yep, that's right - a mom... not Jimmer's mom, not Emery's mom, not even a distance relative of the coach, just a BYU fan, weighing 100 lbs soaking wet. I didn't know someone that little could invoke such emotions. When she found out I was also a Gonzaga fan, she said, "You certainly aren't going to cheer for them if they play BYU on Saturday?" I said, "You bet I am!" So, on Saturday, we made Kelsey sit by her and I sat on the opposite end.

On Friday, we did a bit of eating, shopping, eating, walking and eating (except Nick & Carly; they did a lot of sleeping, sleeping, sleeping and sleeping). Nick's First Descents friends - Matt, Kelsey & Brooks - had dinner with us Friday night. It was great to see them and great to see Nick's spirits lift to spend the day with them.

We randomly chose a restaurant on Saturday on our walk to the Pepsi Center (we didn't have to rent a car - our hotel was within walking distance to everything). We like to pick places that we don't have in Salt Lake City. Once seated, I noticed a man semi-shielding his face, as he and his friend were escorted quite quickly to a table adjacent to ours. It took me 2 seconds to recognize him as Craig Ferguson, the late night tv host - Nick and I LOVE him! He and his friend enjoyed their lunch as Nick and I tried to explain to Kelsey & Carly who he was. We chose to leave them to their privacy, but could've passed them the salt should they have requested it!

We ended the evening with dinner at the Hard Rock Cafe, all of us thanking Lee sincerely for the wonderful trip we all had together. It was the best NCAA trip we have had yet!

The kids and I flew home while Lee took off to Chicago. Reality set in as Nick drained 2 liters from his tummy Sunday night. Time for chemo.

Love to all - thank you for checking in!

Lori

A good week!

Nothing much new health wise - Nick is still sleeping off the effects of his last chemo treatment. Sleeping... a lot! He missed out not going to St. George with me to watch his little sister, Kelsey, play ball. She did terrific! Came home exhausted, sunburned and happy. The two of them picked up on their wrestling - Nick started it - but with a well placed toe-bending maneuver and an even more impressive full-on chomp to his calf muscle, Kelsey declared herself the winner.

To validate he was feeling better, besides his professional wrestling moves, he was in fine spirits. As I was fixing dinner last night, I asked Kelsey to help me for a minute. She said, "Aw, dang Mom, I just put on fingernail polish." I said, "Nick?" He said, "I have cancer." and we all bust up laughing. Not funny, though, neither one of them helped me.

We leave Wednesday afternoon to Denver for the NCAA tournament. Luck has it we will see both BYU and Gonzaga play - two family favorites!

It will be a fun week. Chemo is all of next week and we are still waiting for the clinical trial results. Til then...

Lori

Home again, home again, lickety split!

Nick's fever broke by Friday night, antibiotics worked pretty fast and his counts are on the rise, in a good way. He was released this morning at 11:30 a.m. and now taking a much needed nap in his own bed. He had lots of company, lots of phone calls and lots of college basketball. It wasn't too bad of a stay this time, especially as he handed out more of his WACKY pins to the nurses.

Meanwhile, I spent the day with Kelsey on Saturday at her volleyball tournament (they took 3rd) while Carly went to the BYU basketball game, row 3, center court, participating in a flash mob dance during a time out in the student section (visit her Facebook for the YouTube video). Nick's uncle Stan is here and the kids will all go hang at their dad's house later, enjoying the company and having dinner (when Nick wakes up from his nap).

Next weekend is a trip to St. George with Kelsey, having just made the high school softball team as a 9th grader in junior high. It will be her first tournament as a freshman playing varsity catcher. Lee & Nick will linger at home, catching the various basketball tournaments across the country and maybe, just maybe zip on down to Las Vegas for Saturday's Mountain West Conference Championship.

We are in the midst of planning our big fundraising/awareness activity, a 5k, and will be posting details soon (save the date - July 9th - in Salt Lake City hosted by CureSearch - one of the charities Nick's WACKY Warriors support). We lost two sweet little ones this past week to rhabdo - Mackenzie, www.caringbridge.org/visit/mackenziegonzalez and Maya www.caringbridge.org/visit/mayavoladri - reminding us of why we continue to support childhood cancer research. Please say a prayer for their families.

As always, we are all so thankful for the powerful support we continue to get from those walking beside us in Nick's journey. Your prayers for Nick have been heard as he continues to conquer battle after battle. He remains strong in spirit and faith, as do I.

With blessings,

Lori

Oh, so stinkin' close!

Last night, Nick was finally eating a bit, laughing, being bossy from the couch and feeling pretty good. He called me today at work around 12:00, saying he just wasn't feeling so well. This is after a week of mouth sores, extreme fatigue and loss of appetite. He took his temp and it was 100.0. Hmm. We knew his counts were low; on Wednesday, his white cell count was a whopping .8 and his ANC count was .3 - so.... anything over 100.5 means hospital. I came home around 2:30 and temp now up to 100.7. Hmm. His body ached from head to toe, his gums hurt, headache and was freezing. I called the doctor when it reached 101.7 an hour later. Fast forward four hours and Nick is in room 4508 up at Huntsman, doing the neutropenic fever drill. Good news is he is already feeling better and fever dropped to 100.0 again without anything but water, but he has lost 7 lbs in 10 days. The extra hydration he'll get here will be good for him.

His legs are aching a bit so that means his neulasta shot to boost his white cells is kicking in. We are hoping the infection isn't from his drain tube or port. We shall see.

We brought plenty to keep us busy and he has family and friends on the way to visit. I'll stay over tonight, planning to whoop him at a game of dice. If you want to call Nick's room, his number is 801-587-4508 . The usual hospital time is about 2 days, having to be fever-free for 24 hours.

More later as blood results come in. With love,

Lori