Friday, December 31, 2010

...and a happy new year!

Christmas was pure magic! We all enjoyed a wonderful Christmas Eve dinner at home, played card games through the night and was serenaded by Carly on her guitar and Kelsey with vocals. It took nagging of super-human strength for Kelsey & Carly to get Nick out of bed Christmas morning, but once up, the morning was terrific.

It has been a rough week for Nick - he hasn't felt too well but only had to drain his tummy once since Christmas Eve. Looks like the chemo is kicking in. His counts were near zero on Monday, 27th. Both Lee and I caught monster colds and how Nick didn't catch it is miraculous. Grandma & Grandpa arrived on Wednesday ready to help us ring in the new year. Aunt Chris & Uncle Stan (with cousins Jessica & Kris) zipped in for a super quick visit, too.

On Thursday, 30th, twenty of us WACKY warriors arrived at ABC's studio to support Nick's win of the Les Schwab, "Do the Right Thing" grand prize award. I had told Nick I didn't think he was going to be on tv, other than when they pan the studio audience, but I was wrong - way wrong. Mortified, Nick was quickly set up with a microphone and promptly placed next to the show's hosts for a live interview with a representative of Les Schwab. Afterwards, he glared at me, swearing I set him up and moaned, "I would've worn my Penguins hat, a different shirt and...." The highlight of the event was when Les Schwab went above and beyond the gift of the grand prize (a $1,000 gift certificate towards tires at Les Schwab) but a surprise donation to Nick's foundation with a check for $2,500!!!!!! Wow! Very, very cool! Here is the link if you would like to watch the clip of Nick:

Please remember a prayer for two very special Rhabdo Angels. Allen Bowman passed away on Tuesday - and Aiden Binkley - Also, I'm following two particularly cute little ones that could also use some support - Vinny DiGerolamo - and Jordan Gourley - We are all in this together and thanks to Les Schwab, we will help make a difference in the future of children and young adults with cancer.

Nick is on the mend and will have the next 10 days to enjoy before chemo starts again on the 10th. Blessings to all for a healthy and happy new year. Thank you for your continued support, prayers and warm wishes!

With love,


Thursday, December 23, 2010

All I wish for Christmas is ...

... a drain.

Yesterday, Nick was scheduled for another paracentisis to drain off more fluid in his tummy. But he thought maybe he was doing pretty good and asked our nurse, Katie, to cancel the appointment. Last night he decided he was wrong.

This morning, because there were no appointments available, he realized he was in for another fun-filled visit to the ER. As he wrestled with his bed for a couple of hours, our nurse Katie was able to schedule a "procedure" for Nick to get a drain put directly into his abdomen, based on Dr. Gouw's recommendation (I think...) We knew this might be a possibility if the fluid continued to come back at such a fast rate. By the time we got to Huntsman (no ER - hooray!), Nick was more than ready to have the drain put in; extremely uncomfortable and waddled like a 9-month pregnant woman. We got home 6 hours later, drain in place, Nick feeling much lighter and happy that he finally had room to eat. He told his nurse, "I'm going to be feeling so GOOD for Christmas now!"

We also got a surprise email today - it reads:

"Hi Lori,

Congratulations, your nomination for the Les Schwab "Do the Right Thing" contest, Nick Raitt, has been selected as the Grand Prize winner. We are going to make the announcement on-air next Thursday, December 30th during the taping of "Good Things Utah." We would love to have Nick present and any supporters who would like to join him. Nick is an amazing young man, a role model to other cancer patients and a perfect example of "doing the right thing."

Please e-mail or call me at your earliest convenience and again congratulations to Nick. I hope he is doing well.


Barbara Syphus
Account Executive/KTVX - ABC4"

So, all those that would like to join us on the 30th, please email and let me know! ( l I didn't even realize there was still a contest on for the "Grand Prize" and I forgot to ask even what the prize is... ABC has also asked for some WACKY pictures to air on TV - it'll be a blast!

Merry Christmas, everyone! Thank you all so much for your continued support, love and prayers. Our entire family is very humbled and grateful.

With love,

Monday, December 20, 2010


What a weekend! Nick was invited to attend the concert in Salt Lake City to see the Mormon Tabernacle Choir (affectionately referred to as the "Mo Tabs") perform with David Archuleta Friday night. He was a little concerned, not sure if he would appreciate the talent but as he strolled through the door later that night, he declared, "I gotta admit, the guy can sing." He thoroughly enjoyed the entire evening: the music, the singing, the Christmas decorations and the company. He was fairly uncomfortable with his tummy already filling with fluid, tho.

Saturday night Nick attended the Raitt family Christmas party and had a great time.

By Sunday morning, he asked if I would take him to ER to have his tummy drained (paracentesis), knowing he would be incredibly uncomfortable if he had to wait until Tuesday. We chose the U of U because they are connected to Huntsman, both logistically and shared files. We got there about noon; a fairly slow day. Nick was clear to state he had cancer in his abdomen and needed to have a paracentesis to drain the ascites. Took a couple of hours and 3 attempts to draw blood for ER to determine they would do the procedure. Around 3:30 they drained 3.5 liters. They originally brought in only two 1 liter bottles and Nick said "You are going to need more of those." When the doctor was done, she admitted she thought Nick had been exaggerating and complimented him on hiding all that fluid so well. However, they felt it was necessary to send off the specimen collected to make sure he didn't have a bacterial infection in his abdomen. 7:30 p.m. it was determined Nick has cancer in his abdomen and the fluid is called ascites. On the bright side, our doctor was extremely nice, we were able to watch every single NFL highlight on TV and Nick felt enormously better.

This morning, Carly joined Nick and I as we took off to be at the hospital by 9:00 a.m. Nick's port was acting up - neither side was working so the nurses had to draw blood the old fashioned way. By 11:00, they still couldn't get it to work so they gave him something in the lines that helps clear the port. By 12:30, both lines were working again but his urine labs came back with a problem so he had to have iv fluids for a couple of hours before chemo could start. By 3:30, his labs were still low but was given the go-ahead to get chemo anyway. We are thinking having his tummy drained yesterday messed up his counts. By 5:30 p.m., he had three different chemos infused and was sent home with mesna and hydrating fluids in a to-go bag. Another long day at the hospital but it didn't seem too bad - Fairy godmother Denise came to visit in the morning and Nick's dad came in the afternoon. Carly & Nick chit chatted and laughed most of the day with various visitors from other hospital friends.

His tummy is already filling up. We are hoping the chemo kicks in right away like last time but will plan on having another paracentesis later in the week. Back to the hospital tomorrow for his neulasta shot and to get his port de-accessed. Hopefully it will take less than an hour!

We are now getting ready for the rest of the week, one day at a time.

Blessings to all for a very Merry Christmas!


Wednesday, December 15, 2010

Update, Part II, III, IV ...

So then...

Yesterday morning on our way to the hospital to get Nick's tummy procedure done, Dr. Lambert called again. She asked Nick to call her assistant to give her the insurance info so he can get pre-approval, etc., getting all our little ducks in order. So he did.

The procedure was a breeze, again I did not watch. They only drained 3 litres this time and he felt immediately better. We dropped off coconut bread to all of our favorite nurses on the 2nd floor with everyone wishing Nick good luck in surgery. After a much deserved late breakfast, he was back home in bed sleeping like a baby as I was finally able to go back to work for a few hours.

On my way home, again at 4:45 p.m., Dr. Lambert called. This time she said she was still having concerns with the surgery, even after hearing back from Dr. A, and now wanted to talk to Dr. Gouw, Nick's oncologist. She feels the surgery may be just palliative, not giving Nick enough benefit to offset such a huge surgery. She asked if I would coordinate a phone call between her and Dr. Gouw and I said sure. I also said we are all guessing at this point. She said if we are all equally guessing, she is up to the surgery if Nick is. I called Dr. Gouw's nurse, Katie, and she would arrange the call. But as I walked in the house, Nick called for me from his bedroom and dropped a bomb - he found another lump in his abdomen. He thinks he could feel it now that his tummy had been drained. I felt it, too. He asked me to set up a scan, and off I went to call Katie again. Because Nick is allergic to CT contrast, he has to be premedicated 13 hours in advance. We went ahead and had him start taking his premeds at midnight, being optimistic in getting a CT scheduled for noon Wednesday. Dr. Lambert called again at 7:00 p.m. (9:00 p.m. her time) asking if Dr. Gouw was going to call her. I said he was going to call tomorrow and she said that was unfortunate as she would be in a 20 hour surgery Wednesday. 20 hours? But she said he could give her a call on her cell and when she took a break, she'd call him. Hmm. Respect for her growing by the minute.

Sure enough, Nick was scheduled for CT scan at noon today, but we had to be in at 10:30 for him to start the oral contrast. Meeting with Dr. Gouw scheduled for 2:30 to review results which actually turned into 3:30. Lee, Nick and I met with Dr. Gouw and Katie - and I quote Dr. Gouw's words, "The cancer has come back with a vengeance." Dr. Gouw spoke to Dr. Lambert and the surgery is officially canceled and will not be reconsidered, with an exception of emergency complications. Within just 2 weeks, those nasty little "peppercorns" have been growing like crazy throughout his entire abdomen. The good news is that none of his organs, including his lungs, have been infiltrated.

Nick will begin chemo on Monday - the first round taking about 6 hours, out-patient, with 3 different chemos. He'll have his second round Jan 10th with 2 completely different chemos - just like last August & September. Dr. Gouw is also researching a couple of clinical trials to coincide with Nick's treatment.

Shell shocked again, yet so very thankful we'll be home for Christmas and Nick should be feeling ok until the week after Christmas. Nick's biggest concern is not knowing if he'll be able to be a camp director for First Descents this summer. Now he is back trying to make arrangements to ride a bull before Monday's chemo. I'm going to watch "Elf" again. And so to end on a humorous note, here is the cartoon we saw in the radiation waiting room today that Nick thought was hilarious:

Good night, everyone.
Love Lori

Monday, December 13, 2010

Update, Part I

Finally, at 4:45 p.m. after another 2 batches of coconut bread, 5 loads of laundry, dishes, dusting, working with the plumber, going to the store and decorating the tree, we finally heard from Dr. Lambert! She apologized for the delay in calling, as she had hoped to talk to Dr. Andtbacka one more time before he left for the other side of the world - she didn't. She is unclear about the remaining tumor left on Nick's small intestine, fearing it is intertwined, making her unable to resect the tumor. She explained there are many blood vessels there, etc., and that you can't live without that part of your small intestine, therefore didn't feel the surgery would be beneficial for Nick. She wanted Dr. A's opinion on the appearance of the tumor.

I told her that when Dr. A came to talk to us while Nick was still in recovery after his laproscopy, he described the tumor as "loose". Dr. Lambert said that if this is the case, this is good news (a loose tumor is resectable) and now considers the surgery beneficial, especially now that Nick has ascites again. She will shoot him an email tonight and if he confirms, she'll go ahead and schedule the surgery. She'll call me tomorrow.

She said to plan on coming out a couple days before surgery, sometime after the first of the year, to meet the surgical team, blood tests, current ct, etc. After we hung up, she called back again saying she will rearrange her schedule and can schedule Nick for Dec 21st. We'll discuss details and make flight arrangements after she calls tomorrow.

So, after all this information, making plans still depend on another phone call. But I'm a much calmer person now and tomorrow doesn't seem that far away. Neither does the 21st. Nick is just anxious for tomorrow as his tummy is getting pretty bloated and he is uncomfortable. We are to be at the hospital by 8:00 a.m.

Thanks, everyone - more tomorrow...

Love Lori

Friday, December 10, 2010

STILL no word!

Regardless of my phone messages left throughout the week (and there were many!), along with short, consoling conversations with the staff at Huntsman and UMass, tears, cursing and full-on adult temper tantrums, we still don't have any definitive answers - even if the surgery is still on, let alone when. A very, very frustrating and long day. The surgeons have talked to each other, but not to us. Last call I got was from Dr. A's physician's assistant, Melissa, to let me know Dr. A had been in surgery all day, had two more to go then would call me later tonight. It's now 10:00 p.m. - doesn't look good. Dr. A is an oncology surgeon so I know he was a busy man saving lives today. But still...

Nick was to have met with Dr. A on Tuesday to see how the healing was coming along from his laproscopy procedure, but Dr. A was on call at the VA so we met with Melissa, and she is quite competent. Confirmed cancer is active and Nick is now getting fluid built up in his abdomen again. He isn't uncomfortable yet, but you can see the swelling and his tummy is still tender. Melissa set up an appointment to have his tummy drained again next Tuesday, which can be canceled should we need to go to UMass next week.

I'm crabby. So I baked all day long, watched "Elf" again for the 5th time this season and topped the night off going to a neighborhood Christmas party, which included a performance by a beautiful and brilliant pianist. Still crabby. But Nick isn't.

We'll be getting a Christmas tree tomorrow and that will definitely pick me up. Probably. Maybe not. We'll see.

With love, regardless of the self-pity, self-absorbed and selfish attitude I am projecting tonight. I'm sure the patients that were on the receiving end of Dr. Andtbacka's and Dr. Lambert's extraordinary surgical gifts are extremely grateful tonight and I am able to give a smile and a prayer for their complete recoveries.


Monday, December 6, 2010

No news yet, but we have pictures!

Still waiting for biopsy results so I thought I'd update on our trip...

Wednesday was beautiful and we spent some time on the beach. My favorite part is walking behind Nick, Carly & Kelsey, observing how well they all get along. The three of them together, laughing and teasing, which carried over to the room they all shared, as giggles continued on through the night.

We did some shopping, went to movies, experimented with local dining and explored the facilities at the Marriott. We saved our energy for the much anticipated trip to Disneyland on Friday. Much to Carly's enormous disappointment, she caught a flu bug and Nick had complications from his procedure so we only lasted 5 hours at the park. We did manage to go on our favorite rides and view the spectacular Christmas decorations, with Carly and I wearing our Minnie Mouse ears the entire day. Nick and Carly were in their respective beds by 5:00 p.m. while Lee and I brought back chinese food for everyone. The giggles continued.

Saturday we took off to Las Vegas. While Nick & Carly continued to recouperate, Lee and I took Kelsey to the Stratosphere as she boasted to have nerves of steel, stating the "Big Shot" wasn't going to be that big of a deal. So she and Lee took off while I nervously stayed on the observation deck, hugging the inner wall and turning green watching the ride where people dangle precariously over the edge to the right of me and people (idiots, perhaps?) jumping off a controlled free fall platform to the left of me. Lee & Kelsey came back in, Lee grinning ear to ear and Kelsey walked with wobbly legs, breathlessly telling me about how the camera on their side wasn't working, but they offered her to go again for free (no lines); she declined. She wobbled for the next few hours.

We met up with fairy godmother, Jennie and her husband, Dean - and James, Elizabeth, Melissa and George for an outside dinner at Mon Ami - right across the street from the Bellagio so the kids could see the water show throughout dinner. Delightful! We excused Nick to exercise his poker skills while Lee and I walked the girls across the street to see the lobby and gardens at the Bellagio. The decorations were spectacular!
Lee flew home early Sunday to catch his flight to Chicago. Nick stayed as he is going to the rodeo on Monday and the girls and I headed home with a pit stop in Cedar City to visit some family. Turns out Lee's flight was delayed 4 hours due to fog but he made it. Nick will be coming home tomorrow; Carly is back at school scrambling to study for finals next week and Kelsey is back catching up on her homework, with volleyball starting this week. Ahhhhh, normalcy!
Love Lori

Tuesday, November 30, 2010

Laproscopy done!

Nick and I arrived at Huntsman a good 30 minutes late - thank goodness they didn't start without him! The fine medical staff still managed to get him wheeled in by 9:30 a.m. - right on time. The procedure took about an hour and they only needed to make 2 tiny incisions. Dr. Andtbacka met with us (the two fairy godmothers were with me in the waiting room) afterwards. All went well, as expected; they found about 100 seeds throughout his abdomen wall and lower intestines (about the size of peppercorns). He took a few of them to be biopsied to determine if they are alive and well or just dead pieces of cancerous scar tissue. There are also a couple of pockets of fluid again up near his liver, but not significant in size yet. The entire procedure was captured on video and will be fed x'd to Dr. Lambert in Massachusetts. We should have the biopsy results and Dr. Lambert's opinion by Friday.

If Dr. Lambert wants to go ahead with surgery, we'll schedule a conference call immediately. I couldn't get a read on if this a probability or not although Dr. A said it would happen sooner than later, definitely before Christmas. Hmm.

Soooooo, until then, Nick and I will catch a flight to Long Beach tonight. Lee is already in Newport Beach with Carly & Kelsey waiting for us to catch up. We will have some of nature's healing with the ocean, and Disneyland, of course. The plan is to drop off Nick in Las Vegas as we drive home on Sunday, so he can go with his cowboy buddies and attend the national rodeo finals Monday night. Thank goodness we have an awesome dog sitter (aka house sitter) to keep things on the homefront humming along.

I get many compliments on my ability to stay calm through this storm, managing it all with a wave of a hand, a smile on my face. So not true. Let me give you a glimpse of my reality; I have Lee scheduled to be in Chicago coaching on Dec 13th, 14th, & 15th. No worries, we have a whole WEEK to prepare. Lee received some questioning emails regarding his coaching classes on Dec 6th, 7th & 8th. What? Someone must've made a mistake. Hmm. My bad. I handle all of Lee's calendar and travel, etc. - so it's an obvious error on my part. I was up late last night rebooking his flights and hotel, rearranging how he will have to fly from Vegas to Salt Lake with enough time to race home, repack then go back to the airport to catch the last flight out of Salt Lake on Sunday night. Looks like the girls and I will be driving back home together. Catastrophe averted but I can't help but smile as Carly & Kelsey have Lee wrapped around their little fingers, dragging him to Universal Studios today with no lines, so they can go on each ride as many times as they want (just spoke to Lee and he is green, dripping in sweat, vowing not to let the girls know his nauseous predicament). Now there is a Prince Charming.

Also, one of Nick's fairy godmother's - Denise and her Prince Charming and best friend of 26 years, Jerry, finally made it official and got married yesterday. Congratulations, Denise & Jerry, we love you!

I'll post again once we get the results and opinion of surgery. Oh how I wish I had a picture of Lee at Universal Studios!!!!

With love,


Sunday, November 21, 2010

Prayers for a local

Nick here....

As most of you know, the support I get from the people following my blog is amazing. Which is why i am posting tonight to ask for some prayers to be said for Christy Barnard. She is a local high school teacher who is deeply loved by her students and past students (a few good friends of mine say she was their favorite). She was recently diagnosed with terminal cancer and I was hoping we could all say a big prayer for her and her family, which consists of her husband and two children.
I did not know Christy myself because I went to a different high school but I have only heard great things about her and thought posting this on my blog was the least I could do to help out a fellow cancer fighter. It is yet another reminder of how many families are affected by cancer in this world.

On a positive note I wanted to wish everyone a happy Thanksgiving this week. I plan on eating as much food as I can take and drinking as much cider as I can!

Friday, November 19, 2010

Peace, Hope and Faith

I'm completely off the cancer topic and I'm not writing about Nick today, but this week has been impactful.

Starting with last Saturday when Lee, Nick and I attended the funeral for Rex Andersen, age 20. The hardest part for me was looking into the tear-filled eyes of Ralph, Rex's father, who was balancing precariously between the monumental sadness of having to say goodbye to his son and the joyful relief in knowing his son was free of his fragile human body to with his Heavenly Father. The wonderful part for me was when we told Ralph of Nick's latest amazing news, Ralph let his tears flow as he embraced Nick with a great big bear hug. The service had many special messages and I was grateful we were there to hear them.

On Monday morning, another young man - Blake Stromberg, age 22 - also passed away due to a form of leukemia. Blake's father, Mark, is a business associate and friend to Lee and I. Mark and I have shared hospital stories and followed our son's respective paths. The funeral is today and I am trying to find my perspective.

Tuesday, my cousin Rhiannon, gave birth to her 2nd son, Cole Daniel.
Thursday, our son, Bo and his wife Becky, welcomed their 2nd daughter, Saylor.
Both moms and both babies are perfectly healthy!

I completely believe that children bring with them knowledge from heaven, having a personal story about Carly to validate this belief for me. So I was wondering, did Cole & Saylor greet Rex & Blake, high-fiving them for the splendid work done and welcome them home? Did Rex & Blake share with Cole & Saylor the peace, hope and faith they brought with them from earth, so as little ones, they could continue to pass it on when they arrived? A spiritual tag team of sorts?

Rex, Blake, Cole & Saylor are all at home, surrounded by love, delivered with peace, hope and faith.

Today, I found my perspective. My faith is strengthened, my hope restored and I am comforted with peace.

With love,


Friday, November 12, 2010

Calling All Angels

As you all know, our family is very close to our softball community. The support we have received with Nick's battle has been phenomenal, especially with our annual charity softball tournaments. One umpire in particular has been extremely generous with his time and energy in making our tournaments a success - Ralph Andersen. It was Ralph, in fact, that organized all the umpires for our last tournament (Ralph is on the right).

He is a teacher at Bonneville High School and has also brought along his students from DECA to help volunteer and design and donate bottled water for the concession stands. Ralph has been amazingly supportive of Nick's efforts and it wasn't until this fall, we learned that Ralph's own 20-year old son, Rex, had his own life-long battle raging in his body with cystic fibrosis.

Rex was just approved last month to have a double lung and liver transplant done in St. Louis. Plane tickets were purchased and they were all ready to fly out this Sunday. I just received a phone call from Ralph this afternoon to tell me that God asked Rex to fly home to heaven instead this past Tuesday morning.

Here is a link to a recent newspaper article written about Rex:

He also has a Facebook page - "T-Rex Andersen" that has information as well.

Please say a prayer for the Andersen family - Ralph, his wife Carol and his son, James - whose broken hearts are finding comfort that their sweet boy can breathe again. We will be attending the funeral tomorrow in West Point. I am so, so sad.

Because of Ralph's efforts, I just mailed off checks to CureSearch and First Descents for $3,100 each, representing the funds raised at our 3rd annual charity softball tournament. Ralph epitomizes kindness, courage, strength, faith and friendship. We are all better for having him be part of our lives. I'm sure his son, Rex, was very proud of his dad, as Ralph was of his son. May blessings of comfort and peace find the Andersen family and that unconditional love from extended family and friends surround them always.


Wednesday, November 10, 2010

Not so fast...

We met with Dr. Andtbacka this afternoon. He was grinning as he told us when he received the good news about Nick last week - it was in the middle of the night (in Australia) and he jumped out of bed to view the scans himself. He said they, as doctors, rarely see something so remarkable.

Nick has a nasty cold right now and having just come off 3 rounds of chemo, Dr. A. thought Nick might want to consider taking some time for his body to get stronger and postpone the laproscopy until the 30th - go ahead and enjoy Thanksgiving. Nick thought it sounded like a good idea.

If the laproscopy finds any tumor left, Dr. A. will snatch a bit to have biopsied, which will take a few days to get the results. At that time, Dr. A. will discuss the results with Dr. Lambert and determine what is the next step sometime in the first week of December. So basically, Nick has the next 2 1/2 weeks off for some R & R and we'll figure out the rest later.

Thanksgiving at home after all!!!!!! Sounds terrific!!!!!!!!!!!

With love,


Wednesday, November 3, 2010


"There is no measurable disease to be found in Nick." said Dr. Gouw. "The radiologist and I are stunned." This is what we heard after Nick's ct, mri and chest xray were done this morning. This news changes everything, to say the least, in a very good way. Dr. Gouw is off to an international conference in Paris - he'll be gone the rest of this week and next. Dr. Andtabacka is gone until next week. In-between, the doctors will try to determine a couple of things:

1. Will Nick still have the "shake & bake" chemo treatment? Probably, just won't be the 10 hour, open the entire abdomen, stay in hospital for 2 weeks surgery - but a much less invasive version where they will wash out the abdomen through small incisions.
2. When will this surgery take place? Nick will still have the laproscopy on Nov 15th. Dr. A will coordinate with Dr. Lambert at UMass to get all the ducks in order for our meeting on Nov 10th. Anticipate still going week of 15th.

We are still in shock with the good news. I cried most of the way home making Nick very uncomfortable, mainly because I tried to remind him to give thanks to the Big Guy upstairs, for it is because of Him, "all things are possible". He said it reminded him of the time I threw his hat at him one Sunday morning and yelled, "Get your ass out of bed - you are going to church and be grateful for God and all those that have prayed for you!!" He went. I've got some personal work to do, I see that...

We are still very cautious as Nick said "I've been told this before..." I think we are pretty good at this roller coaster ride and quietly rejoice with the good news and reject despair with the bad news. Whatever, today is a great day!

Thank you all for the prayers, thoughts, encouragement, meals, humor, patience, guidance, advice, ears and love. More news to follow one week from today.

With love,
Lori and Nick

Monday, October 25, 2010

I love October!!! November, however...

October is my favorite month - hockey and basketball are underway, football is almost halfway through, the world series has begun and Kelsey's fall league softball games are played in beautiful weather with the gorgeous fall colors surrounding our mountains! It is also breast cancer awareness month. I personally am getting a little sick of the color pink this month but am thrilled that cancer awareness is everywhere.

A couple of weeks ago, a few of the ladies from our church came over to our house bearing a gift - they had sewn a beautiful pink and black quilt, with quotes of inspiration on various squares throughout the front of the quilt. They asked if I would please give it to someone they thought would benefit from the comfort it could offer, made with love. I happily accepted it knowing how much comfort our friend Lisa found in the prayer blanket made by Nick's aunt and the prayer blanket and quilt Nick received, also from his aunt and from family friends.

Today we were inspired to meet a new friend, Joann, who is also undergoing treatment at Huntsman. Our nurse, Katie, introduced us and as we handed Joann the quilt, tears streamed in surprise and thankfulness. I admitted I had nothing to do with making the quilt, I can barely sew on a button - I was just the happy messenger. It was a good day for all of us.

Nick, meanwhile, went through two types of chemo all of last week - one in pill form, the other by iv in the outpatient clinic. This week he is only one one - the iv - again daily through Friday. He seems to be doing very well, just fatigued. Next week on Nov 3rd, he will have a ct scan of his abdomen, mri of his head and neck and finish with a chest x-ray. The following week on Nov 10th, we will meet with Dr. Andtabacka to discuss the results and all the details of the surgery in Boston (he is the Huntsman surgeon coordinating with the other surgeon at UMass). We have a lot of questions.

On Monday, Nov 15th, Nick will have a laproscopy to see what an actual camera can pick up in that tummy of his... if the cancer hasn't gone crazy, we will head to Boston the next day or so. We should have an idea when we have the results from Nov 3rd so we'll have a little time to make some tentative travel arrangements.

This is why I'm not too crazy about November this year. The good thing is that Nick gets to take a break from chemo for awhile. Hopefully, we hope to be back home before Thanksgiving, take off to Newport Beach for some much needed r & r the week after and then Nick has plans to go to Vegas the first week in December for the national rodeo finals.

That's it for now! Thank you all for the love and prayers!


Monday, October 18, 2010

In the streets of Philadelphia

Nick here...

So as many of you know... I like to have things to look forward to after every round of chemo to help me stay positive and remind myself why I keep fighting cancer. Its because of the wonderful moments in life that that put a smile on your face.... at least thats what it is for me.

Anyways, during my previous round of chemo I realized that I didn't have anything planned for my good week which was this past week. I soon started to look up the Pittsburgh Penguins game schedule online and saw that they were playing the Philadelphia Flyers on the 16th, and I knew that my Mom and Lee have some connections out in Philadelphia. One is Michael Rouse and he has always been extremely nice to my family and I, as well as help out with Wacky Warriors when we came out to Philly last year and ran the Broad St Run. The other is Matt Rosenberg, who is also a great guy and friend of Lee's.

Soon after planting the seed in their heads that I wanted to go out and see my favorite professional sports team play out in Philly, I heard from a close friend of mine that they had arranged for a chance to ride a BULL if I still wanted to do it (it is something I have wanted to do for a while). I told them I sure did and wanted them to do it as well (4 of them). Unfortunately those plans fell through at the last minute, but it seems this was a good thing because my platelets were pretty low (I found this out the day after the scheduled bull ride).

Even though the bull ride didn't happen, my family and I did make it out to Philly to see the game. Lee, Mom, Kelsey, Carly and I all flew out Thursday night excited to see a good game of pro hockey on Saturday night. Matt made hotel arrangements and also provided us with tickets to the hockey game - CLUB SUITE!

Tour bus - notice Carly & Nick in the background...

In front of the Ben Franklin Museum Kelsey & Nick in a cockpit
We spent Friday doing bus tours and seeing the city which is full of history just like Boston. We then finished off the day at dinner with Michael. Did I say he is a great guy? We then woke up Saturday and were off to visit the Benjamin Franklin Museum, but not before we had a Philly Cheesesteak. The museum had a flight simulator, which I had to do. Carly decided to be my co-pilot which she found to be a little more than she expected. Everyone outside the simulator could here Carly's screams and my laughs but it was all smiles when the doors opened back up. People were laughing when we came out..... it was great.


And after...We then took off for the hockey game........ which was amazing. Why, you may ask? Well let me tell you:

1. The Penguins won 5-1
2. My favorite player had 3 pts (2 goals 1 assist)
3. I got to go in the Flyers locker room after the game. Now about #3..... I found out the night before from Michael that I would get to go in the locker room after the game. So I made sure I didn't wear Penguins clothing to the game. Anyways, just before the end of the game, the PR guy (Zack) for the Flyers grabbed us and took us to the locker room. My sisters and Mom never made it in till after the players had left due to a good chance of nudity... HA. However Lee and I did go and it was very easy to see the loss in all the players faces. They weren't happy at all. I was able to witness how the post game interviews work with all the press and journalists with the players. Chris Pronger (a soon to be Hall of Famer) had his interview last because he had to ice his knees. I was told that I would get to meet him, but expected it would happen after the interview. Oh no.... not with Pronger.

Pronger: He simply told the reporters to "MOVE" as he walked over to me and shook my hand. At 6'6" and 220 lbs, he towered over me. I honestly don't remember the words he said to me.... probably due to his intimidation factor (he is also known as one of the most "aggressive" players in the league) but he was a super nice guy and even took a couple pictures with me before talking to the press, which he called "vultures". He then waved and said "good luck" and was off to ice his knees some more I assume. Soon after, I took pictures with another player on the Flyers due to his ironic name.... Kimmo (Chemo) Timonen. He was a nice guy, too, but didn't say much. It was a great experience and I definitely won't forget it.... especially Pronger. Thank you, Lee, Michael & Matt for making this happen!

Hope you like the pictures!

Tuesday, October 12, 2010

A few things

Last Tuesday, we received an email from our nurse, Katie, saying they received confirmation the surgeon in Boston has agreed to take Nick and perform surgery - the one where she will open up his tummy and apply chemo directly to his abdomen. Katie wanted to know if she could set up an appointment with the surgeon at Huntsman who is coordinating the surgery with the surgeon in Boston. He would explain all the details. But first, Nick would have to have a laproscopy, where they place a camera right in his tummy to take a peek at exactly what is in there. They would want to do that once he has completed his next upcoming round of chemo (two week treatment) starting on the 18th. This was much for us to take in. I forwarded on to Nick so he could decide if he wanted to go further (I, at least, wanted to get the details first before making a decision). Nick declined to discuss it, saying he'll think about it later.

By Thursday, we were up at Huntsman getting labs done. He asked to talk to Katie. I reminded him he doesn't have to do any treatment/surgery, especially when this is all experimental anyway. We told Katie we thought surgery was only an option if the chemo wasn't working, but she explained it was an option they were all waiting for - a very hopeful and preferred treatment. She also explained Nick will have to have a laproscopy, regardless if he has surgrey or not, probably another CT scan, too. Nick thought about it and said, "Well, I really like Boston..." so she'll go ahead and get some appointments set up so we can get all the information on the table and see if it is something he wants to pursue. If he decides to go with it, he could have surgery next month.

On Friday, Katie called to let know his white cell counts were at zero again, to which he promptly packed his bags, took off to his dads for the night and then drove to Wyoming to visit his best friend, Rob, and Rob's family. Well, just know where the closest hospital is and take a thermometer, I advise. Rob has a new baby, Paxton Nicholas, who is about 6 months old, bursting with cuteness. Rob also took Nick fishing and yes, after 21 years, Nick finally caught his first fish on his very own merit. It was a proud, manly moment.

Yesterday, Nick and I drove to go get labs done again and he played me his new theme song, by Rebelution - "Bright Side" (you can listen if you go to: Here are the lyrics...

Don’t trip you know I’m always by your side
You'll be fine for the ride just be calm
Take a breath and don't cry, look on the bright side

Rise up now make an impact
Now get your bags packed
Think about your life, the thrill
Don't you cry look on the bright side of life

Somebody told me everything is alright
That life's too short to be afraid
Which is leading up to what I want to say
Living should be giving in a way
Contemplating every single day
And learning so we educate and be positive, it is what it is
Come and set examples for the kids
I don't want to scare you no I don't
It's time you be a role model so open up

Don’t trip you know I’m always by your side
You'll be fine for the ride just be calm
Take a breath and don't cry, look on the bright side

Rise up now make an impact
Now get your bags packed
Think about your life, the thrill
Don't you cry look on the bright side

Be kind and keep a smile
Keep your head up and try to find a friend or a child
And encourage their life, look on the bright side

Rise up now make an impact
Now get your bags packed
Think about your life, the thrill
Don't you cry look on the bright side of life

Well done, Nick. Our family takes off on Thursday to Philadelphia to see the Flyers vs. Penguins game. We are all excited for the trip! We get home on Sunday and Nick will be back at Huntsman on Monday for chemo. Til then, we'll all look on the bright side of life!

Tuesday, October 5, 2010

Another Round Done!

The fishing and steer roping Nick experienced prior to last week's chemo helped him sail through feeling pretty good. Nick had two different chemos every day for 5 days last week; in the outpatient clinic from 8:00 to 12:00 daily. He had a lot of company - his fairy godmothers, Dean, Uncle Bill and Andrew. The fairy godmothers were in fine form, wearing stove top hats with smiley faces on them, matching Nick's pj bottoms. It is so cute to watch everyone in the outpatient clinic - patients, nurses, caregivers - all can't help but smile, too. The fairy godmothers really are magical.Nick felt good enough to go watch his buddies play on the Univ of Utah hockey team both Friday and Saturday night,earning two wins!

Nick invited us to watch a documentary on ESPN last night - about an amazing young man named Terry Fox, who ran across Canada to raise money for cancer. It was inspiring and emotional for us. Terry's pace was a marathon a day - all while running on one healthy leg and one prosthesis, losing his other leg to cancer. Terry pressed on as he knew it wasn't about him, it was about all of the young ones with cancer. His vision carried him through 3,300 miles in 143 days; his foundation has raised over $500 million.

I am always in awe when we have the courage to step outside our own situation and serve, how powerful our impact becomes, just as God promised. Nick has also been motivated to serve and his impact is starting to be felt. At Kelsey's softball game on Saturday, the commissioner of the ASA for our district saw me and said, "You are creating some problems for me." Why? "Because you don't have just a small tournament with a few teams getting together for charity anymore. You hosted a full-on tournament with a great reputation that should be on our calendar every year and we won't be able to waive the sanctioning fees anymore." I grinned from ear to ear - "Jerry, that is a terrific problem!!!!!"

On a more serious note, I should also take a moment to clarify a couple of things. First of all, we don't discuss prognosis because Nick hasn't initiated it. This isn't our question to ask, this is Nick's alone, although we are all going through this together. He has never been one to dwell on statistics and focuses only on living. He has weathered some interesting comments made to him about his prognosis and it made him uncomfortable. He said, "Mom, I know what the deal is, but I'm in for the fight and plan on being around for a long time." I'm with him 100%! I told him that the time he has here on earth is ONLY between him and God, we are just here to support his journey, to pray, to learn, to share, to love. There is tremendous power in living in the present. I have observed many, many children and young adults go through their battle with cancer and they ALL are in the here-and-now - let's go play! Their attitudes and perspectives are so different than adults, as it should be.

Secondly, we appreciate the enormous amount of suggestions for alternative treatments. We also respect Nick's opinion and allow him to discern what sounds right intuitively. There are so many treatments, both mainstream and complimentary, that are showing amazing promise. We all wish these new studies would HURRY! I personally acknowledge Nick's own therapy - giving back, embracing a grateful and positive attitude and always having something to look forward to...

Speaking of, we are now booked to go to Philly next Thursday through Sunday so we can enjoy the Penguins vs. Flyers game. We know Nick will be feeling good and it'll be something we'll all enjoy before he begins chemo again on the 18th.

With humble gratitude,


Tuesday, September 28, 2010

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:

Monday, September 20, 2010

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 :)

Wednesday, September 15, 2010

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

Sunday, September 12, 2010

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,


Thursday, September 9, 2010

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:

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...


Monday, September 6, 2010

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:


(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.


(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,


Saturday, September 4, 2010

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,


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

Thursday, September 2, 2010

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,

Monday, August 30, 2010

The Plan

Nick, Todd, Lee and I met with Dr. Gouw this morning. It appears the cancer is seeded throughout his entire abdominal cavity, with the largest mass - 3" x 2" in his lower left abdomen. The ascites (pockets of malignant fluid) are growing in size so that Nick is obviously bloated and uncomfortable. Dr. Gouw reluctantly told us we are no longer looking for a cure, but a way to slow down the cancer's growth. Our options are:

1. Start up again on the 3 different concoctions of chemo that Nick was on last fall.
2. Consider surgery down the road to remove the larger mass, as well as any other lesions the surgeon can find, with an option to have chemo applied directly into the abdominal cavity.
3. Consider a phase 1 trial, also down the road.

Nick and Dr. Gouw decided to go ahead and start chemo again on Thursday. This particular cycle is done over a six-hour period and then he'll be off for the next 3 weeks. The subsequent cycle will be a 5-day out-patient treatment beginning on Sept 27th. If all goes well, Nick will be assessed after the third cycle - probably around mid-October - to see how he is responding to the chemo. Of course, they will monitor him closely as things may change very quickly. But for now, this is how we will proceed. Dr. Gouw also gave him a diuretic to help him literally pee out the ascites.

We are all a little overwhelmed, a little shell-shocked and really, really sad. We've been bringing out the comedy dvd's, board games, and our beloved dice game again. Nick is going to see John Mayer tomorrow night and our Univ of Utah plays Pittsburgh on Thursday. Nick and his dad will be taking off for Moab this weekend to enjoy the holiday weekend. It will be good for them both.

I pray God's grace blesses our family as we prepare for our most difficult journey yet. My faith has not wavered and I rely on the prayers of all those that love us to bring strength, healing, acceptance and comfort to our family.

Thank you all for being there - it really makes a difference.

With gratitude,


Saturday, August 28, 2010

We had fun...

We met up at the studios, met the producer then were escorted to the "studio audience" portion of the set. As you can see by the picture, we WERE the studio audience.
Back row: Deanna, Terri, Jennie, Chris & Jamie
Front row: Lori, Nick, Makelle, Kelli & Alane
The "Good Things Utah" hostesses chatted live for a few minutes and then read a bit about Nick and his accomplishments with Nick's Warriors. He officially won the Les Schwab "Do The Right Thing" award for August and was handed a gift box loaded with goodies. We giggled as the rest of show went on to demonstrate how to make home-made gnocci, sew an apron using ruffles and watched as they introduced a new product - soda pop you can make at home.
We took pictures, giggled some more and off we went to California Pizza for a fun lunch. The highlight was Kelli, who took pictures of everything in the studio - totally in awe. Thanks to all the ladies, young and old, who went -

On a more serious note, I did get a copy of Nick's scans. The tumor in his lower left abdomen is significant; the rest of the information could either mean, "oh, crap" or "hmm, not as bad as we thought". Nick just looked at it and said, "Ah, I'll worry about this on Monday." My kinda guy.

Have a terrific weekend and we'll post soon.

With love,


Thursday, August 26, 2010

Good Things Utah

I received the following email yesterday:

"Hi Lori,

I am pleased to let you know that Nick Raitt is the monthly winner of the Les Schwab "Do the Right Thing" Award. The courage he demonstated when facing adveristy was extremely inspirational. We will anounce his name and tell his story on "Good Things Utah" this Friday, Aug. 27th. If he would like to be in the studio audience please respond back by e-mail or phone and I can help you make the necessary arrangements.


I'm currently gathering names of those that would like to join us at the studio tomorrow morning and watch the show live while they announce his name. Email me if you'd like to go - Nick, however, will not attend, claiming he would be extremely uncomfortable with a studio filled with older women. Chicken.

We are loving to have something fun to do while we wait - scans at 1:30 today with results to be discussed on Monday (of course, I will get a copy of the report before the ink even dries late this afternoon or tomorrow morning. It's just trying to figure out what it all means that stumps me).

More later,

Love Lori

Wednesday, August 25, 2010

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.


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

Friday, August 20, 2010

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,


Wednesday, August 18, 2010

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.


Tuesday, August 17, 2010

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...


Thursday, July 8, 2010

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 or for flyers and registration information. Or, feel free to email me:

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,


Tuesday, June 22, 2010

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: and

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

Love to all,