Effects of boredom

Nick here..

So lately I have had really boring days due to the fact all of my friends are at either school or work during the day. So I try to find stuff to do during the day to keep myself active and off the couch. I came up with this awesome/funny idea to take some pics of myself in my new kayak in an irrigation ditch near my dad's house in Eden. Ha my dad and I got a really good kick out of doing it. I did not hesitate to send this photo right away to my buddy Brad Ludden, who is the founder of First Descents and also a pro kayaker. Hopefully he thinks is as funny as I do.

Anyways just thought I would share the laughter (hopefully you all find this funny since I am kayaking in a irrigation ditch).

Odds & Ends

Received an email from our doctor; they are a little concerned with his latest CT scan in that his right hip is showing necrosis (blood supply is cut off due to chemo treatments and bone has some deterioration). We will be meeting with Dr. Randall on Monday - he is Huntsman's & Primary Children's renowned orthopedic surgeon. We have met Dr. Randall before; he heads up the annual Team Sarcoma Walk so we've seen him in shorts & sandals, not in scrubs and a stethoscope. Nick says, "So I'm having more chemo and radiation - what happens now?" Guess we'll find out Monday.

He had his first radiation treatment on Thursday. He asked Dr. Hitchcock if she needed to watch out for his hip (relatively close to his abdomen) and she said, no - we're concerned with your bone marrow. Hmm. Hadn't heard about that one either. We'll worry about that on Monday, too. Otherwise, Nick hasn't had any side effects from the radiation yet. Next week will be a different story; he has to go in for 2 different chemos Monday through Friday. We have to show up at 8:00 a.m. and the infusions will last about 5 hours each day. Don't forget the daily radiation, intermittent lab draws, and Dr. Randall just for fun. It's going to be a rough week. When Dr. Gouw confirmed Nick's treatment protocol with Dr. Grier in Boston, he told him, "We've got the big guns out for Nick." Dr. Grier replied, "No, we want to give him the GIANT guns." Fine.

Nick wasn't able to go to Southern Utah this weekend; apparently the elk are done bugling for the season. But I think he'll make the Utah football game this afternoon - always something fun. He went and had his friend give him a Mohawk (Cory, I'm telling your mom...). I asked Nick, "Don't you treasure every strand of hair on your head?" His hair will be falling out any day now (by chemo, not by me pulling it out). We are also enjoying the grandparents visit - always lots of good food.I've mentioned our friend, Lisa from Alaska, that we met a couple of weeks ago. She had 

major surgery on Tuesday and could probably use a prayer or two. Her website is: http://www.caringbridge.org/visit/ihavewhat.

We also found another young man with rhabdo - Brian Orgill - he is 18 and a local here in Utah. His website is: https://www.carepages.com/carepages/faithineveryfootstep. He has just recently started up battle #2 and his family could use the additional support, too.
Thank you, Nick's Warriors, for including Lisa and Brian in your thoughts and prayers. I think we can wait a few days for Nick - they need your prayers today.

With love and faith,
Lori

Counts ok

The wardens at Huntsman let Nick go home around noon on Saturday. Considered trying to still make the fight but we had flights to rebook, hotel to rebook, and hope the tickets to the fight hadn't been resold. Decided to stay home, order pay-per-view and Nick invited his entourage of 9 friends over to watch with him. I reminded Nick that I'm a big believer in that we are where we are supposed to be and being in the hospital may very well have saved him from a life-threatening infection. Don't think he's buying into that theory yet.

He also managed to go horseback riding with Melanie Davis as soon as he got home from hospital. Nick doesn't waste a second! His body is tired, however, and is taking some serious 4-hour power naps during the day. His next adventure will be visiting some friends in Logan (Utah State) later today and then in southern Utah this weekend elk hunting (elk watching, more likely) with some friends.

Grandparents arrive today. Nick has to have an echo today, too. He starts radiation on the 24th; needs to have 25 treatments so we anticipate him finishing up radiation on Oct 28th. I think there may be some changes in his treatment plan as we were all so surprised by his counts bottoming out. His body may not tolerate the plan they have in mind. One day at a time and today is a good one!

Love to all,

Lori

Well, crap...

Ok. So Nick had labs drawn Thursday morning. Earlier in the week, his white cell count was 13 - WAY healthy! By 2:00 Thursday afternoon, it had dropped to .6 and his ANC was ZERO! He stopped by the house to pick up his antibiotics and head out to the Dew Tour with his buddies anyway. He only got as far as Salt Lake City and decided to head back home. He called to tell me he didn't feel too well and didn't want to risk getting an infection before the big trip to Las Vegas on Friday. By 5:00 p.m. he called to let me know he had a low-grade fever - 100.4. Anything above 100.3 is automatic trip to hospital (neutropenic fever is dangerous, let alone not having a spleen). I called Nurse Katie and she said to wait it out a bit and anything over 100.6 with Tylenol or 101.0 without Tylenol should merit a trip to the hospital. At 9:00 p.m. his fever steadily climbed to 101.0. We made the call to Huntsman and the oncologist on-call got a bed ready at our familiar 4th floor second home. While we were packing, commercials aired on tv for the Mayweather vs. Marquez fight in Las Vegas. That knife twisted in the heart for sure.

As we dinked around for the next half hour, his fever dropped to 100.3. Nick decided he would wait it out at home through the night on his own, monitoring his own temp. He called the oncologist at Huntsman, who promptly chuckled at the mere folly of this idea and "highly discourage you from staying at home tonight". The doctor is right, of course - without any white cells to help fight off any infection, Nick could be come ill with a virus that could turn lethal in a very short amount of time. We made it to Huntsman by 11:30 p.m. Thursday night. I swear, as soon as our feet hit the Huntsman property, Nick's fever vanished.

Fast forward 12 hours and Nick is on iv antibiotics; fever is still gone, however his counts are still critical. We got up early in the hospital and he had his regularly scheduled ct scan of his abdomen done. We met with his surgeon, Dr. Mulvihill, who declared Nick's abdomen nice and healthy, ready for radiation treatment next week. He also had to have a chest xray and ekg to rule out pneumonia and heart damage (heart is the first to get weak when an infection shows up). 4th Floor entourage of docs have locked Nick to the hospital and won't even consider letting him go until his counts come up, hopefully by tomorrow morning. Nick is enormously disappointed.

He rebounded fast, though, and I left him a couple of hours ago with him eating pizza with Mark & Ty. His sister Carly and fairy godmother Jennie also visited today.

Before signing off, here are a couple of stories I'd like to share about Nick.

About a month ago, Lee and I were talking to Nick about a workshop exercise where people would take their troubles and deposit them into the middle of the room. They could then come up and pick up someone else's troubles and leave their own behind. Result of exercise is that most people end up picking their own troubles again because they always seem workable when compared to others. Nick commented quickly that he would leave his behind in a heartbeat. He thought it through for a couple more minutes, then he said, "But that would mean someone would have to take mine...I wouldn't want that." This was a proud maternal moment, I have to say.

The second story happened on Monday when he had to get his tummy mapped for radiation. He had to strip from the waist up, lay on a table with his hands over his head and they would place a drop of ink on his tummy where they wanted to pinpoint the radiation beam and pierce his skin with a needle - yep, a radiation tattoo. However, when they were checking out their accuracy and Nick was under the machine from waist up, the young female assistant delicately came over to Nick's side and said, "Nick, sorry but we are going to have to take your pants off." Remember Nick has his hands up over his head with his body in a machine and can't see what is going on. He just replied, "Oh, this is so going in my blog..." The young assistant just giggled and she unbuttoned his pants (undies still on, thank you very much). Nick would holler at her, "Awkward!" Nick told me, "It wasn't good for the self-esteem, Mom, when she giggled." We had to go up to Clinic E and he couldn't wait to talk to his nurse buddies - Vanessa & Kelsey. He asked them, "Hey, is that normal protocol?" and they both vehemently shook their heads, "No, Nick, they aren't supposed to do that!" and then laugh themselves sick, especially when Nick concluded, "I think that girl owes me money!" My goodness...

Stay tuned - pay per view, it looks like. Thank you for the effort, Michael Rouse, you're a great friend! Hope you guys have a blast!
Lori

2nd Annual Cancer Charity Tournament

Whew! What a weekend! It wouldn't be fun unless we had some last-minute snags: a team backing out at last minute (had to redo bracket); dj cancelled day before (our in-house hero, Jon, filled in beautifully); coke trailer not confirmed until noon day of games (city of Roy generously gave us the one assigned to the high school football game). It all worked out!
Friday night games started at 6:30 and 8:00 on 3 fields. Wes White did a great job of joining the teams together to remind them what the tournament represented and introduced Nick. These games are of a little different mindset as the umpires call anything close at home as "safe" - because that is how the players earn money - by pledges based on runs scored by their own team. Fairy godmother, Jennie, came early to help me stock the trailer, set up registration and man the concessions. I remembered to bring softballs this year, but forgot score book paper for our scorekeepers. Nick had a full day of chemo on Wednesday so wasn't feeling too well Friday night, but he was there for a few hours regardless. Didn't stop Carly from asking him to go get her a pizza while she and her friends ran the scoreboards up in the booth. We all went home smelling like dirt and excited for the next day.

Syd, Cali, Kelsey (Nick's sister), McKell & Rae

We were supposed to wake up at 6:00 a.m. to be back at the fields at 7:00; woke up at 6:35. Made it there by 7:05, not pretty, but there. Kelsey's team, Bukoos, lost their first 2 games early but it turned out to be a blessing in disguise for me. The team filled in to be scoreboard operators, concession stand volunteers and miscellaneous errand runners. We also had several volunteers from Bonneville High's Decca group, thanks to the leadership of Ralph Andersen - one of the umpires who has been raising awareness for Nick's Warriors since last spring. Nick's buddies came to help - Ty, Mark, Kyler & Kory, Carly, Becky, TJ, Colton, Chris, fairy godmother Denise and her husband Jerry, Camille Thornley, Jon & Bernadette McGowan, Wes White, Ren Parkin, Sheri & Heather Stuki and of course, Nick's dad Todd and stepdad Lee.

The skills contest was a blast. Just when everyone is hot, tired and hungry, the music starts to play and pretty soon, everyone is singing along to the songs and getting excited about the competition. Wes hosted the activities and it went fairly smooth with lots of happy faces. Winners had their picture taken with Nick and prizes were handed out. I was a little worried about a couple of the teams, maybe they were wondering why they signed up for such an unconventional tournament. But when I asked the coaches and players if they had fun, they enthusiastically responded "YES!", grinning from ear-to-ear.
Kelsey, Nick & Cali

Play resumed after the skills contest and one-by-one, teams were eliminated. As teams lost, tee shirts would be handed out and we took the opportunity to thank the coaches and players. Lee and Wes did a great job but at one point, they were busy and I had to hand them out to a newly eliminated team. As I stood there with the shirts, I asked the girls if they had a good time. And then I promptly burst into tears, thanking them for coming and the impact they each have given to fight childhood cancer - you know, in that girl voice with about 7 different octaves. The coach also wiped away tears while the girls just looked at me, silently saying, "Ok, I'm uncomfortable now..." Not at all what I wanted to convey. I went looking for Lee and told him he had to do the rest of the teams, but when I looked at him, he was emotional and said he didn't do any better than I did. We doubled over in laughter at that point.

Actually, Lee was terrific in his talk with the teams. He would ask them if they had fun, if they worked hard, if they were tired and was it worth it? He then explained children their own age have cancer and they work harder, every day, and always come back to keep fighting. He reminded them where the money was going from the tournament (Nick doesn't keep a dime) and he humbly thanked them for being such wonderful and true warriors. Sorry, Sliders - that was really what I wanted to say to you...

We had one umpire get hit with a bat in his forearm and had to go get xrays (turned out to be a deep bruise, thankfully), but this meant the head of ASA umpires - Jerry Coleman - had to come out to the park after already calling 4 games in the morning and leave the comfort of his couch with football on tv. He called two more games and was ready to leave when Lee and I approached him. He said, "Oh no, there aren't more games, are there?" We explained the other two games going on were running behind and we needed him to call the 12u championship game. He looked at the ground, looked at the field on the left, the field on the right, sighed heavily then said, "Ok, I'll START this one, but as soon as the other game is over, the other ump needs to come over." Aw...nice guy! I want to give a special thank you to the umps - they donated at least one game each, took crap from parents and coaches that would occasionally forget this was a charity tournament and worked non-stop in the heat. A couple of the umps gave up an opportunity to call college games to be with us, one of course, was Ralph Andersen. Ralph also donated 6 cases of water with "Nick's Warriors" on the label for us to sell and for the championship game, he changed into a fresh, clean uniform - shoes, too - because he wanted Nick's tournament to be first class. Ralph and Scott were there from 7:30 a.m. until 10:30 p.m.

Hot Shotz won first place in the 12u and Predators took the 14u. Congratulations to both teams! Check out Nick's website, http://www.nickswarriors.org/, to see all the pictures. I'll have the final numbers in a couple of weeks after we collect all the pledges.

Nick fared well, including going home to have labs drawn. We were all exhausted but ready to do it again next year.

Nick & Caden

A special thank you to Travis Flint and the city of Roy - they donated the fields, crew and the coke trailer. That is HUGE! Also to all the volunteers - without you, the tournament wouldn't have made it. It was hot and chaotic, but you all sailed through the day and helped make it a success! Thank you, Jennifer Stahle, for the prizes you donated; Tanya Gall for making the raffle a success; Coach Poll for the donated bat; Jen Reynolds for not letting me cancel the tournament; Joyce Stacey for donating the tee shirts; Brandon Newby for the art design; Jarrett Anderson for the enormous amount of time you donated to the concession stand; all the coaches that donated the extra $100 per team when the registration fee was lowered; the several moms who tore out extra scorekeeping pages from their personal books; and to all those that I have mentioned in the above story - THANK YOU!

Nick only represents one story but all of you helped make many stories have some happiness through the research success of CureSearch and the opportunity of adventure through First Descents. As Tanya Gall said, this is our own community coming together for a greater cause. The human spirit is amazing and I'm very proud of our softball family.

Blessings to you all,

Lori

What a schedule!

Nick and I were at Huntsman on Wednesday from 10:00 a.m. to 6:30 p.m. He got his first dose of the new treatment - 3 different chemos - and the schedule is incredible. He still has to have home health services for additional hydration (iv in a backpack), lab work and his neulasta shot. He gets to take his own vitals every 4 hours - that isn't working out so well; he's taken them once.

He'll get another dose of vincristine the next two consecutive Wednesdays. It really gets fun on the 28th when he goes in Mon, Tues, Wed, Thurs & Fri for 6 hours each day to receive 2 different chemos. They asked him to consider inpatient, but he said he wants to come home at night. I kinda like the outpatient wing - lots of chatting in a really busy room. We finally got to meet our new friend, Lisa, who is from Alaska. She has the exact presentation of cancer that Nick did but her tumor is on her left side. She is being treated by Dr. Gouw, too. She is alone here in Utah and facing a major surgery later this month. We hope our new friendship will help ease her fears as Nick has already gone through what she still has yet to face. She, too, is very courageous with deep faith.

Tonight our charity softball tournament begins - we have 19 teams playing this year, ages 9 through 15. We've encountered numerous setbacks but it all seems to work out regardless. I hardly cried or swore yesterday so it's going to be all right. I love the energy the young girls bring to the field and to my heart. Batter up!

Love to all,

Lori

Kitchen sink, here we come!

It's been a busy couple of weeks. I've tried to encourage Nick to update this blog personally, but after he posts on his Facebook, he's lost his focus. So you all get my perspective.

Nick had an amazing time in Colorado. He drove for 7 1/2 hours and picked up his brand new kayak courtesy of Brad from First Descents (it's bright red and he has named it his little red Corvette; are you singing the Prince song now?). He drove for another 1 1/2 hours to Matt's place in Boulder. He didn't even unpack as they unloaded the kayak first and headed for the water. How he can squeeze his long legs into that kayak is a true mystery. Matt and Kelsey are part of the "Team Beyond Cancer", who took 5th place in their first triathlon. Kelsey and her boyfriend, Brooks Baldwin (a pro kayaker and videographer), also live in Boulder and took Nick kayaking during his visit, too. Nick caught up with Brad in Vail and they headed down the Shoshone river for some more kayaking. Nick said this was a level 3 rapids; perhaps a level 3+ compared to the rapids he went on in Montana. He went swimming a few times, including dropping my camera in the river (could still download a few picts - see below). Let's not forget another skydiving adventure with Brad (Brad's first). Nick said this was a little more scary than in San Diego because the plane dove at the same time they jumped and descended together. Plus he also wore shorts; made for a little chilly experience. Ahhh, good times, exactly what Nick needed to refresh his spirit. Gigantic thank you to Brad, Matt, Kelsey & Brooks - you have no idea what an amazing impact you have had on Nick. Your generosity of time, gifts and most of all friendship means so very much to Nick. You gave him him the opportunity to embrace life as a healthy 20-year-old having a great summer with his buddies.

Nick & Brad

Matt, Kelsey, Brooks & Nick

Kelsey & Nick

Just as Nick is getting the bunny fuzz on the top of his head - when you can't help but rub his head as he passes by - we met with Dr. Gouw today and Nick will start chemo next Wednesday at 10:30. He had a PET scan on Monday and the results are great. He also met with a cardiologist regarding his irregular heart beat; he has a slight sinus arrhythmia but they don't seem too concerned. He wore a heart monitor for 24 hours and we'll have the results next week. He will have a follow up echo done on the 21st. They don't expect any surprises, nor anything to worry about. LOVE that.

Nick's treatment will be 8 to 12 months. It is a very interesting protocol: week one is a one-day infusion of vincristine, dactinomycine and cyclophosphamide; week four is a daily infusion for five days of cyclophosphamide and topotecan; week seven is a daily infusion for ten days of temozolomide (pill) and irinotecan. Weeks following repeat this schedule. All outpatient - yay! We'll will have some home nursing visits for iv hydration, labs, etc. The only part we are anxious about is that they have decided Nick should have radiation during the first six weeks of treatment. We meet with Dr. Hitchcock on the 9th as well. Radiation is a rat bastard all on it's own but at least he'll get it out of the way at the beginning (so easy for me to say). Nick has had his body beat up extensively so we have to watch his counts closely. Cool thing to consider is that Nick is making medical history.

On a maternal note, I think this week has been tough on Nick as his friends have gone back to college, the rush from the Colorado visit behind him and a full year of chemo ahead of him. He bounced back finally yesterday when he found humor in making fun of my age. Seemed to propel him back up to speed. Also, he has an elk hunt and, hopefully, attending the big fight in Vegas - Mayweather vs. Marquez - in the next couple of weeks. The biggie we're trying to work through is a cruise with his dad in New Zealand the first of the year. Ya gotta see it to make it happen...

FYI - the 2nd annual charity softball tournament is being held on the 11th & 12th. Please contact me at lorib@quadrantliving.com if you have any questions about this event.

Please say an extra prayer for Zachary McCullough and his amazing family. Visit his website for some truly inspirational writing. The family's perspective and strength is unsurpassed by anything I've ever witnessed: www.carepages.com/SublimeLBC .

Actually, please say an extra prayer for anyone you think is having a hard day. It matters and you do make a difference.

With loads of love and hope,

Lori