My home away from home

So after the fishing trip at Strawberry Reservoir, I felt I hadn't quite had enough fun yet before my next round started (it started yesterday) so my Dad and I headed down to Moab. My home away from home.
It was great to see Colin again and get back into my wranglers and boots. The weather was descent and we didn't hesitate to begin the first day with some scenic jeeping to "Top of the World". The jeeping took a lot more out of me than I thought it would so after we got back it was definitely nap time. After a couple of hours of sleep it was off to the corrals to catch up on my team roping skills. We roped two days in a row and I loved every moment of it. I ended the second day of roping with the best roping sequence I have ever done. I roped the head of the steer and then turned him so that Colin could heel both of the hind feet, and he did just that. If we would have done that in a rodeo we would have gotten a score. Not a great score but a score non the less. I have never done that before, and neither did anyone else in those two days of roping. It also began to rain really hard just after we did that and I felt like it was God's way of saying.... "Nick I think you should end on that one." So we did. Ha
So I left Moab grateful to have had a weekend full of cowboyin', nappin', jeepin', eatin', and healin'.

Here are some good pics from the weekend:

A weekend of fishin'

Nick here...

So, as most of you may know.... I started up the chemo grind yet again a couple weeks ago. As always, I felt pretty drained for the past week or so and have spent a lot of time on the couch catching up on my tv shows and not eating as much as I should be. Fortunately I have an awesome support system that likes to get me up and going again. My "fairy godmother", Jennie, and her husband Dean arranged a fishing trip at Strawberry Reservoir this past weekend with a bunch of friends: Colin, Monica, Howard, Doug, and even Mateo and Buttons (First Descents participants) who drove out from Denver.

The weekend began with Lee and I driving out to the lake to meet everyone. We didn't hesitate to begin fishing late that afternoon even though Mateo and Buttons had not arrived yet. Unfortunately, I did not catch anything that night..... actually I didn't catch anything that weekend. Dean did let me reel in fish he hooked on Saturday night so that was cool. I guess I was not cut out to be a fisherman.... I will stick to ropin' steers in Moab.
What I did get out of the fishing trip though was some good laughs at dinner and regained stamina and appetite that I needed. Mateo and Buttons also brought a couple gifts that I did not expect..... One being some awesome sunglasses (I love sunglasses) and a certificate to get my Kayaking Instruction Certification, which would be awesome to do next spring because then I could get paid to do the thing I love.... KAYAK. So lastly I want to thank Lee, Jennie and Dean for getting me off the couch to come experience and awesome weekend fishing, surrounded by the people I love. Can't do much better than that.

I am now off to Moab with my Dad to do some more healing by enjoying good company and spectacular scenery. Oh.... and rope some steers!

With love,
(Nickname) Raitt

Doing some rolls - a bit harder when fatigued... gotta little help from my friends.

PS from Mom: we buzzed his head last night - the calico kitten look for hair is now gone.Nick will be getting his port put in this Friday and chemo starts again on Monday, the 27th, for five days, outpatient, 2 chemo combo - assuming he comes back from Moab :)

3rd Annual Charity Softball Tournament - Update

While I'm gathering all the pictures from various photographers, I thought I'd go ahead and post about the event now. Friday afternoon started off with just one hiccup, but once we worked through it (I dried my eyes and picked up my chin), the pool games were on at both Valley and Cottonwood softball complexes by 4:00 p.m. We all headed over to Cottonwood after 7:00 p.m. to begin the skills contest! This is our favorite because the music is blasting and all the players get their groove on. The 10 year-olds are the cutest because it is their first time learning how to participate and their enthusiasm is off the charts. Just look at this little one's intensity!

Spirit ribbons were provided to all the teams to represent support for Nick; all the teams and their parents were encouraged to wear them. One team in particular, the Rebels, tied the ribbons to their jerseys, which were worn backwards, topped off with their hats also on backwards to show they were WACKY! The UC Strikers painted their hair bright florescent colors, also promoting the WACKY theme. Note both these teams are 10u - too cute.

We were priveleged to have Shelby Abeyta join Nick in handing out the prizes. Shelby is also a cancer survivor and a softball player, as well. Many of the players know Shelby and there were lots of hugs and congratulations to see her look so good! The chaos was paramount but the excitement uncontained. Nick and Carly were able to have their slow-pitch face-off game. Carly had hoped to stack her team with her friends from the SLCC softball team (their coach caught wind of it and said "No way!") so Carly had to scramble to make a team. She didn't have much fun at first, striking out her first 4 times at bat. The umpire of the game was kind and said to her as she dragged her bat behind her, walking to the plate, "Aw, c'mon kid, 8th time is a charm! Get in there and hit it!" So she promptly hit a triple, redeemed herself as a ball player and gave props to the ump as she rounded 2nd base. Her team still got creamed but the smiles never left their faces - well except Carly when she was up to bat again.Saturday morning teams continued to play, eventually ending up back at Cottonwood to play the championship games. We were thrilled to have Corey & Lisa Nielsen from First Descents join us, driving from Colorado to be with Nick, who came to watch the final games later that evening. Nick's aunt Chris & uncle Stan also flew over from California and his grandparents flew in from Washington to participate in all the fun.

Two championship games went into extra games; fortunately, the weather was incredibly perfect and the evening was quite nice. In the 16u bracket, Crush took first and Lady Freakz took second; 12u bracket, Hot Shotz took first and Surge took second; 10u bracket, UC Strikers took first and Surge took second.

Many people shared with us their own stories of how cancer has invaded their lives. Many admired Nick's perseverence to be at the tournament when he wasn't feeling very well, but insisted on handing out the tropies. Many shed tears but everyone had a great time for a great cause. I'd like to share one of several emails I received:

"Dear Lori,

I want to thank-you and your son for putting on such a great softball tournament this last weekend. My daughter plays for The Lady Freakz and she was honored when your son handed over the trophy for winning 2nd place for the16U. At first, she was upset for not winning 1st place and then your son put life in prospective – Every team that played and raised money for the WACKY tournament did win 1st place.

I pray that your son gets well soon.

Thanks again!

Jennifer Beavers"

This tournament would not have taken place without an extraordinary team of supporters. I would like to thank the following:

Liza Goodman, SL County Parks & Rec - for donating the parks and staff (especially her field crew chief, Shannon, who did a phenomenal job)

Bridgette Bertagnolli - for the design and ordering of the pj bottoms and slogan tee shirts and miscellaneous items donated for prizes

MSG Brad Wilkinson - for donating items from the National Guard

First Descents - for sending amazing reps to support the tournament and providing miscellenous FD materials

CureSearch - for sending Denise Bayles over to support the tournament

Jennifer Stahle - for input during our planning meetings and ordering the WACKY pins

Matt Thornley - for input during our planning meetings and donating items

Joyce Stacey - for the tee shirts given to the teams particpating this year

Brandon Newby - for the design of the tee shirts

Brian Clark, Ringor Sports - for providing the skills contest prizes

Devon Anderson - for organizing the volunteer assignments at Cottonwood

All the volunteers at Cottonwood, especially the entire Anderson family, for all their hard work

Ralph Anderson (no relation) - for organizing the umpires, who ALL donated games to the cause

Travis Sutherland - for preparing the brackets

Jerry Coleman - for waiving the sanctioning fees and providing the softballs

Tanya & Rae Gall (and Jayden) - for donating items to the snack cart, providing a canopy and volunteering for the concessions

Todd Raitt, Carly Raitt, Leigh Corbin and Whitney - for volunteering

Jenn Reynolds - for providing the spirit ribbons and volunteering as a scorekeeper

Jennie Magnesen, Denise Cummins, Jerry Gill, John & Ginger Balcom - for being floater volunteers wherever needed throughout the entire tournament (which was everywhere and often)

Ty, Bo & Andrew - for volunteering as scorekeepers

Chris & Parker Hall, Terri Thompson and Alane Macrum - for volunteering

Wes White & Ren Parkin - for organizing and running the skills contest

Nannette White & Craig Cummings - for photography

Jon McGowan - for providing the music

Chris & Stan Ulvin - for registering a "Team of Angels" and the Angels Rally Monkey

For all the players and coaches who came to fields with strong hearts, competitive spirits and unwaivering positive attitudes to make a difference in the lives of those affected by cancer.

And a special thank you to Lee, my husband, for encouraging me to keep going, not to quit and the amazing help he had in the overall operations at Cottonwood. This tournament would truly not have happened without him.

Blessings to all of those that participated and demonstrated patience as a softball mom tried to put together a tournament that would be fun, while raising money and awareness for childhood cancer. Your love and support for Nick has been overwhelming and quite humbling. We hope to see you again next year. Pledges are being collected now through the end of September and I will keep the blog updated with progress.

With extreme gratitude,

Lori Brower

Quick Update

It's Sunday night and we are totally, completely pooped! The tournament was a success, at least in my opinion. Pictures and stories to follow soon.

Thursday, I took Nick to get his labs done and by Thursday afternoon, I received a phone call that Nick's counts have critically plummeted to zero. His counts dropped on day 7 rather than day 10; obviously his bone marrow is struggling. I told Nick he was grounded and the arguing began. He started out by stating he HAD TO GO to the softball tournament, at least the skills contest, our personal favorite. He has been hospitalized twice for severe neutropenic fevers the last two times he has had this particular type of chemo treatment.

Later in the day, he said said in a tone that only a mother understands, "Mom, I think I have a fever", knowing that if anything registering over 100.5 means an immediate trip to ER. I looked over at him with instant fear, as Nick slapped his knee, looking at his grandma, saying "Every time... every time... she falls for it." That little stunt worked two more times during the day. Occasionally, I'd look over at him and only his eyes could be seen peeking over the couch pillows, looking at me with a twinkle as I heard him chuckle. Brat.

He won the argument. He did attend the first day of the softball tournament for the skills contest and the challenge slow pitch game against his sister, Carly. I just winced as he hugged and shook hands, with his compromise bandana hanging loosely around his neck (vs. the mask I wanted him to wear). He did have a hand santizer in his pocket, in case his pocket was wary of any germs, I suppose). But, no regrets. He had a blast and so did everyone else. Details to follow soon but for now, we're hitting the hay.

With love,

Lori

46 Mommas

Tomorrow, on September 10th, you may already know there is a program airing on all the television stations - "Stand Up 2 Cancer". What you may not know is that there is an amazing group of women - mothers with children fighting cancer - that shaved their heads to raise awareness for childhood cancer. I think there are at least 3 moms in the following video whose child has rhabdo. This will also be part of the nationally televised event - please click on the link below:

http://www.youtube.com/watch?v=8PR2wIgFqLw

I'm incredibly proud of these amazing mommas! What a statment they make!

We hope to do our part through the charity softball tournament, also starting tomorrow afternoon. The weather is clearing up (it wouldn't DARE rain) and everything is starting to fall into place. I would love to fall into bed. We have 20 teams registered and ready to play!

Nick's counts came back - zero is pretty easy to read. He's grounded. His counts don't usually crash this quick - his bone marrow just doesn't bounce back like it used to. We are arguing as I type about him attending the event - we're at a draw right now. The good thing is that he has been on antibiotics all week due to the infection he had earlier. I got the carpets cleaned and dogs groomed just in time!

Grandma & Grandpa arrived last night and Corey and his wife, Lisa, arrive on Saturday (they are representatives from First Descents). Aunt Chris & Uncle Stan are coming out on Saturday, too. This weekend will be a blast!

Loads of love to all...

Lori

September - National Childhood Cancer Awareness Month

It's that time of year again - September is National Childhood Cancer Awareness Month. Nick supports CureSearch because 95 cents of every dollar actually goes to childhood cancer research (rhabdomyosarcoma is a childhood cancer). Each year in the U.S. there are approximately 12,400 children between the ages of birth and 19 years of age who are diagnosed with cancer. About one in 300 boys and one in 333 girls will develop cancer before their 20th birthday. In 1998, about 2500 died of cancer, thus making cancer the most common cause of death by disease for children and adolescents in America. We feel CureSearch is doing a terrific job and are grateful for their work.

He also supports First Descents as it targets the young-adult cancer survivors in their adventure camps. The following stats from "I'm Too Young For This" website, validate Nick's desire to bring awareness to the young-adult generation of cancer survivors:

STATS & FACTS

(1) Each year, nearly 70,000 young adults(YA), aged 15-39, are diagnosed with cancer and roughly 10,000 will die due to the disease..º

(2) Over the past 30 years, young adults (15-39) have seen the greatest increase in cancer incidence than any other age group.¹

(3) The 5-year survival rates in YA has not improved over the past 30 years on par with other age groups..¹

(4) Why? Three reasons: delayed diagnosis, access to clinical trials and age-appropriate peer support that contributes to quality of life.º (Note that none of these reasons have anything to do with cancer research so helping YA doesn't necessarily mean white labcoats.)

(5) The #1 social issue faced by YA is isolation.

(6) Psychosocial research (quality-of-life) is tantamount to biological (clinical) research and the notion of survivorship vs 'cure'.²

(7) The entire medical community and cancer continuum at large is grossly uneducated as to how to effectively communicate with, diagnose, treat, support and follow-up with YA.

(8) Actual cancer 'research' in YA (all cancers) is different than cancer research in children and older adults. Donating your money to 'cancer research' today does not mean it will help young adults unless it specifically says so or if you specifically ask. Only a very small handful of young adult cancer research projects currently exist.

MORE STATS

(1) 1 in 50 Americans is between 18 and 40.²
(2) 1 in 50 Americans (18-40) is a cancer survivor. (est.)
(3) There are approximately 16 million Americans in college.²
(4) 1 in 100 college students is a cancer survivor. (est.)

Big box cancer organizations do not currently fund YA cancer research or support the most basic of social services to the YA support community of organizations like this one. If these statistics make you want to puke and you truly want to start helping this new generation of cancer survivors, give to the groups without middlemen, where you know where your dollar goes and there is measured impact. Don't get lost in a sea of 10,000 people racing for cures.

Please join me in wearing your gold ribbon pin this month (gold is the color for childhood cancer); let me know if you don't have one and I'll send it to you.

I was finally able to focus yesterday and our brackets have been posted for the WACKY Charity Softball Tournament this weekend (thank you, big time, Coach Travis!!!!). Nick has been feeling a teensy bit better so we all feel better today.

With love,

Lori

Not feeling so well today

Nick had a tough time getting going this morning. I took his temperature and it was 100.5; not a big deal but still a concern. It creeped up until it hit 101 and that is when I made the call to Huntsman. His fever isn't too concerning as his counts haven't dropped yet (usually 10 days following chemo) so the onc on call gave us to go-ahead to take some Tylenol. Nick managed to get up from his bed to go to our bed (we have a tv and it is the first weekend for college football, after all). He's eaten very little and feels pretty cruddy. Biggest disappointment is not being able to go to Moab. "My mom won't let me" is what I have heard him say on the phone as he gives me a wicked grin.

We are also up to our elbows in alligators trying to get organized for the upcoming softball tournament next weekend. I'm having a terrible time trying to find the energy and focus to get organized. But I will, I will, I will... in a minute.

Till tomorrow,

Lori

No wonder he was uncomfortable...

Up at the U of U Hospital, Nick had his appointment to drain out some of the fluid in his tummy (his dad watched, I stayed in the safe waiting room). SIX litres! That's three large Coca Cola bottles! That's 13 pounds! Nick said the procedure wasn't painful (of course he had an ativan and pain pill before he arrived) and he has a new contender for having one of the nicest nurses ever helping him through it. She told him not to wait so long and she'll get him fixed up in a jiffy. He felt so much better and his appetite had returned.

We went back over to Huntsman and he got his picc line removed - that didn't hurt either; then got his neulasta shot - that did kinda hurt. Off we went to Rubios for him to order and eat two fish tacos. He kept rubbing his tummy, so glad it felt better.

Once we got home, he went straight to bed for a nice, long nap - actually in bed for the night - with no iv's, no changing bags of fluid every six hours and was comfortable. It was a red letter day.

Did we mention Utah beat Pitt in overtime? The nurses at Huntsman think it is because of Nick's red pants. Me too.

Nick is off to Moab today. In the meantime, we'll keep our fingers crossed his blood and urine cultures come back negative and that he stays fever free.

Have a wonderful weekend, everyone.

Love Lori

Chemo, Round 1,763,297...

or so it seems.

Before we even left the garage, Nick threw up - yup, in the garage. Lee, bless his gigantic heart, said he'd take care of it so we could be on our way. Nick and I arrived at 8:00 a.m. in the out-patient clinic at Huntsman, shortly followed by arrivals of his fairy godmothers, Denise & Jennie, and his dad. To start things off, Nick had to have a picc line inserted because one of the chemos (vincristine) can't be put directly into his veins. This wasn't a pleasant experience for Nick because his veins are so beat up and he has had a port on each side so it took a few tries to get it in place.

Then there were unexpected complications when both his urine and blood work came back positive for a bacterial infection. He also threw up again, nothing but fluid, which may actually be from the ascites; our medical angel, Grace, said it is hard to say. Fast-forward to 1:00 p.m. and the 3-chemo variation began. His spirits picked up as the afternoon wore on. He showed EVERYONE his bright red pants worn to support his Univ of Utah season-opening home football game vs. Pittsburgh tonight, topped off with his U of U cap. He showed off his memory skills to us by quoting various lines from "Dumb & Dumber", cracking us all up.

We were on our way home by 3:30 p.m. with a fun-filled package from Home Health - pumps to keep fluids going through him the next 24 hours and a 12 hour dose of Mesna to protect his internal organs from the chemo. Is it just me or is there some irony here? He also now has scripts for potassium, another diuretic and an antibiotic. We won't know for a day or two if the cultures reveal any particular strain of bacteria.

We will go back tomorrow for a procedure to have his tummy drained - he is pretty uncomfortable. He'll also get his picc line removed and a neulasta shot. He may consider getting another port put in, but he has a few weeks to think about it. Grace was a doll, walking us through all the different situations today, and even gave Nick her cell phone number offering to go with him to have his tummy procedure tomorrow if he needed her.

He will have to postpone his trip to Moab for a day and hopefully he'll feel up to going Saturday morning.

Now we're enjoying the football game, snuggled on the couch. Thanks to all for checking in and for the prayers...more to follow tomorrow.

With love,
Lori