My War With Cancer

$23, 400!!!!!!!!!!!!

2011-07-07T14:04:00.006-06:00

Today I wrote two checks in the amount of $11,700 each - one to CureSearch and one to First Descents. This is the total amount of money donated in honor of Nick in the past six weeks. Emotions are overwhelming and gratitude is in abundance!

The past week in Denver was so much fun! However, on the long drive home, I could slowly feel my heart ache stronger and stronger, the closer we got to home. On the 4th of July, before I even got out of bed, I had a complete meltdown. With Scooter by my side, I stayed in my pajamas and watched about 37 episodes of Grey's Anatomy and cried through most of them. Sweet Lee gave me a kiss and off he went to release stress in his own style by taking a much needed bike ride that included visits to Nick's gravesite and then to several of his grandchildren. By about 4:00 p.m., I finally mustered up the courage to go to the grocery store, although uncertain if the tears had stopped and completely not sure I wouldn't cause anyone physical harm because I needed to smack someone. By the time the fireworks started, Lee and I sat on our back deck and watched the beautiful display, wondering if Nick was watching them, too. The peace in my heart has returned. I just wish I had a warning, like a soft bell letting me know I had about an hour before the emotions bust loose so I can let my family and friends know to lock me in my room, but to bring in candy every hour or so. Get the comfy pillows out, tissues nearby, remote firmly in hand and get Scooter, of course.

We are getting ready for the first annual CureSearch Walk in Salt Lake City on Saturday. There will be a little memorial ceremony for those that have passed, by releasing a balloon. I'm considering this my "soft bell" warning.

In Denver, we played at a park right next to the Columbine Memorial. We took some time to go and read all the lovely sayings, beautifully inscribed in stone. Here is one that brought a tremendous amount of joy to me:
Although we will be continuing on with WACKY events - the CureSearch Walk, the Leadville 100, the Sarcoma Walk, the charity softball tournament, etc., I have decided to stop writing on the blog after this entry. This blog has always been about Nick, his story. I feel any more writing from me ends up about it being my story, my feelings. It doesn't quite feel right as all those that knew Nick have been going through their own story in dealing with his death. Perhaps I need to have some closure in this chapter, too. We will continue to post various updates on Facebook (WACKY) and the website: www.wackywarriors.org.

On a final note, I just received a card that resonated immediately with me. It said,

"This is what passes for hope. Those we have lost invokes in us feelings of love that we didn't know we were capable of. These permanent changes are their legacies, their gifts to us. It is our task to transfer that love to those who still need us. In this way, we remain faithful to their memories."
Gordon Livingston, Too Soon Old, Too Late Smart

The waves of emotion are random and intense. The beautiful thing is that I have witnessed and continue to witness the wonderful acts of kindness that take my breath away. The generosity, the kindness, the empathy, the PURE love of all those that surround me, are gifts I would never have known without being Nick's mom. Not just for Nick, but for many others that are in need. Because of these acts, I will remain faithful to his memory. Because of Him, I am able to do so.

With love,

Lori

Wandering, wallowing & wondering

2011-06-24T18:03:00.004-06:00

Wandering through the house as I put things away, getting distracted by a card, thought, tv commercial or phone call. Wallowing in loneliness when I realize he isn't coming back from camp as his room has stayed clean for three solid weeks now. Wondering if Carly and Kelsey are doing all right, if Scooter is ever going to quit sleeping in the closet now, what is going to happen to Meridith & Dr. McDreamy, if tomorrow will be better day.

Tomorrow always brings a better day. I have a couple of pictures to share: first are a few of the colorful ribbon display that our neighbors did for us. Still trying to figure out how to post the video. That falls under "wondering"...

And Nick's initials on the helmets of each Bukoo softball player:
I finally took off the mother's ring Nick gave me for Mother's Day to go have it redone (there was some miscommunication with the jeweler but he agreed to make it right). It's a big correction - Nick's birthstone is to be the largest, but it isn't so it is important to me to get it done the way Nick wanted it. I wasn't willing to take it off while Nick was still with us, but yesterday I got it all repackaged, receipt in hand. I could only make it to the front door of the jewelry store. After "wandering" around in the parking lot for a good five minutes, I tearfully got back in my car and headed home. Just couldn't do it, couldn't talk to a stranger about my son, about what the ring means to me, about how heartbroken I am, about the other two birthstones that represent his sisters and how they are sad, too, about how could it be that my son, just 22 years old, is gone. So, I've asked Lee to do it for me. He'll at least make it to the counter.

For Father's Day/birthday, we gave Lee a bobble-head doll in his image, dressed in the outfit he wore when he ran the Ogden marathon, WACKY shoes and all. It had been Nick's idea to begin with so it had extra sentimental value, too. Kelsey likes to ask the doll questions, "Can Kelsey get a brand new car next year?" and make the head bobble, "YES!" Good one.

We are getting back into a routine again; Lee is coaching in Chicago next week; Kelsey and I are off to Denver for a softball tournament (Lee will join us mid-week); Carly is in Moab working for Colin at his hotel resort. She is enjoying being referred to as "Nick's little sister". That won't last long, though - she very much likes her own identity. She hopes to learn how to ride horses; I'm hoping she develops a cowboy work ethic.

We are looking forward to the CureSearch Walk (visit www.wackywarriors.org for more info). We are also having a big family party tomorrow to celebrate a late Father's Day and Lee's birthday. Having lots of children around will definitely be fun!

As of today, we have received over $20,000 in donations this month!!!!! I can't wait to write the checks to CureSearch and First Descents next week!!!!

With love,

Lori

CureSearch and First Descents

2011-06-16T11:27:00.002-06:00

The days are passing in a blur and I can't stay focused for very long. My laundry, however, is done - go figure. God bless my two daughters, who are now bonding in a very loving, yet silly way. Carly is convinced we have ghosts - not Nick, mind you, but others; add her very colorful imagination and flair for drama, she has decided she can't sleep alone and has coerced Kelsey out of a deep sleep to make her come and sleep in Carly's bed for the past week. Kelsey thinks we have ghosts too, she just doesn't mind them. A few days ago the girls came back from the store with a dance video game for the Wii. I laughed myself sick watching them together and darn near peed my pants when Lee and I gave it a try. I thought I was dancing like Michael Jackson, but apparently I am only sufficient at the potty dance. The laughing felt great!

I finally got a WACKY team registered for the upcoming CureSearch walk in Salt Lake City on July 9th. Since we will be donating 50% of all the money WACKY received these past few weeks, in memory of Nick, to CureSearch, this walk is strictly for awareness purposes. The committee that is planning this (which I'm supposed to be part of) has done a marvelous job in making this a really fun event to come and support. I am inviting all of our WACKY Warriors to visit http://tinyurl.com/44x687y and register to be a participant on our team. The cost is only $10. Of course, we are encouraging everyone to dress WACKY; there will be loads of children (many with cancer) and being WACKY will be a great treat. WE WILL FIND A CURE!

On a very sentimental note, Corey Nielsen from First Descents led a small group on a mountain climbing expedition on Mount Hood. He had asked me if he could have Nick's favorite pin - a gold star that he liked to wear with his cowboy gear - it said, "Sheriff Nick". Corey had a plan for it, so I gave it to him after Nick's funeral. On June 9th, I received the following email from Corey:

"Lori,

I just wanted to let you know that we reached the summit of Mt. Hood this morning at 7:20am. We hiked and climbed from midnight to dawn and it was an unbelievably beautiful sunrise as we came up the mountain and on the final pitch for my group, we looked back over our shoulders and saw the shadow of Mt. Hood on the ocean of clouds about four thousand feet below us with a perfect corona of sun around the peak shadow on the clouds. It was extraordinary and I was with a few really amazing campers and that made it so much more profound.

Anyway, because of safety and the nature of the climb we were the first up to the summit and the only campers for a while and so I ducked away for a little bit and looked off the north face of this amazing mountain at dawn and "saw" Nick as I remember him best and I know he was there ABSOLUTELY in spirit and his presence is our lives is so profound that I suspect he will be with all of us in our big moments from now on. I dug a hole in the snow and with some serious frozen tears, I placed his sheriff's pin in and buried it.

I just wanted you to know, that it was a pretty emotional week here and amongst all of our campers that knew Nick and I hope that you and your amazing family are finding some peace in Nick's "ripple effect."
Love and Light,
Corey"

He later sent me a link to view some of the pictures taken on the mountain: http://tinyurl.com/43f8r32
Impressive, touching and memorable. Thank you, Corey.

Today I received a lovely letter from the University of Utah, along with a Certificate of Academic Achievement in honor of Nick. Moments of surprise continue to surround me. Thank you, Nick.

Tears come at random times; I wish I had some sort of a warning system, though. Going in to his room and seeing all the pictures - his goofy smile peering back at me; going grocery shopping and still thinking about what might make him feel better; watching the last game of the hockey playoffs without him; wanting to say, "Hi, Nicholas!" and waiting to hear, "Hi, Mom!" as I walk past his bedroom - I really need him to say, "Hi, Mom" today. He needs to be careful, though - could scare poor Carly to tears. Smiles are random, too....

More WACKY events coming up through the summer. I hope to have Thank You cards mailed out soon. I have completed one. One. Geez. In the meantime, we are back to softball tournaments and Kelsey just celebrated her 15th birthday on the 10th. Yep, that means she got her driver's permit. Consider yourself warned.

With loads of love,
Lori

Is today Wednesday?

2011-06-08T12:35:00.003-06:00

That seems to be the question I have asked myself and countless others today. I finally have a few quiet moments so I can update the blog.

Planning Nick's funeral was done with enormous help from family and friends. Everyone we asked to speak accepted immediately; Alane Macrum graciously and without blinking an eye agreed to take care of the musical selections (I can't carry a tune in my pocket); Cindy Speters went above and beyond my wildest expectations and designed the floral arrangements; the staff at the funeral home proudly wore Nick's WACKY pins on their suits; food continued to be dropped off at our home; family and friends arrived from all over the country, ready to help and give their support. The weather had finally turned nice; it took Nick going to heaven for us to get some long awaited sunshine!

The visitation (a closed casket viewing, so to speak) was held on Sunday evening. The turnout was impressive. Kelsey's entire softball team showed up (it is such a treat to see them all in dresses with their hair down), giving her a hand-made quilt done in her team colors, with all the names of her teammates included - gorgeous! Carly, Lee, Todd and I were constantly and wonderfully surprised by those that come by with hugs to share. Makelle had made a DVD with pictures from his baby years all the way through to the pictures taken of him last month at her wedding. It was amazing.

We were able to place Nick's cowboy hat, kayaking paddle and a hockey puck (given to us from one of his high school hockey teammates) in with him, feeling the three items represented his passions in life.

Finally, around 9:00 p.m., Lee and I were able to head back home, exhausted. As we drove down the highway and prepared to turn into our neighborhood, we noticed there were many ribbons tied to trees, bushes, mailboxes, sign posts, etc. in bright yellow, red, blue, purple, orange and green ribbons. "Aw..." I said, "someone graduated!" Then we turned left towards our home and the ribbons continued, on both sides of the street. A hundred yards further, we saw Kelsey walking on the sidewalk waving to us; we pulled over and she jumped in and said, "Oh, wait till you see the rest - keep going!" We turned right on to the street we live on, and the the ribbons continued. As we pulled into our driveway, there were 6 brightly colored flags, matching the ribbons, placed in our front yard. Behind the flags were a few family members grinning from ear to ear with a camera in hand. Although I had held it together extremely well during the visitation, there was no holding back the tears now. Turns out our ENTIRE neighborhood had gathered together and decorated streets they knew we would be driving by on our way home. The colors were done in the WACKY logo colors. There were countless volunteers that pitched in to make this happen, all spearheaded by Jamie Skinner - a very sweet and dear friend and neighbor. Jamie and her sisters joined us when we participated in Relay for Life and when Nick received the Les Schwab, "Do The Right Thing" award. We took a short video that Lee took but it really doesn't do it justice. We were pressed for time in getting to the church or we would've taken the time to drive the streets again with the camcorder. It is going to take someone smarter than me to figure out how to load it, but we will, soon! What a wonderful, touching, clever and creative way to express love for our family. Beautiful!

On Monday morning, the surprises continued. I was stunned and absolutely thrilled to see nurse Tauny, nurse Katie and Huntsman's #1 scheduler and clinical trial assistant, Kelsey. Clinic is always extremely hectic on Monday mornings, but for some reason (not because of Nick), Dr. Gouw didn't have clinic so they made arrangements to come.

Lee wore his WACKY shoes - the same ones he ran with in the Ogden marathon last year.

Under Bishop Davis' direction, Aunt Chris led our close circle of family and friends in a beautiful prayer. Alane's selection of piano music was perfect. Nick's entourage of cutie pies - Kelsey, Carly, Morgan, Caitlin, Kelli, Kailey & Makelle, sang a brand new song that they had been practicing under the careful tutelage of Kelli's mom, Angela, who knows her music. The song, but especially the girls, were pure joy.

Uncle Stan led in speaking; followed by Brad Ludden and Corey Nielsen from First Descents. Lee delivered his talk in flawless form as did the prior three speakers. Sara Krauss sang "Godspeed" by the Dixie Chicks and I think you could actually hear hearts break in the congregation; I know I heard mine. Mike Macrum offered his concluding thoughts; the messages of all the speakers were immeasurably touching. Makelle had offered the opening prayer and Jake offered the closing prayer. The congregation sang, "God Be With You Til We Meet Again". There is an audio recording of the service on Lindquist's website: http://www.meaningfulfunerals.net/fh/obituaries/obituary.cfm?o_id=1175852&fh_id=13348. I am (we are) so grateful for the power of the Holy Spirit and His grace as our speakers talked, friends and family prayed and the music played.

There was a short graveside dedication and then a luncheon held back at the church.

As of today, there has been a total of $14,805 in donations made since May 15th. This takes my breath away. This amount will be divided equally between First Descents and CureSearch by the end of this month.

Family and friends are filtering back home now. The ribbons have been taken down. We are still exhausted. I have much more to post but will just have to do it later. We cannot adequately express our sincere and genuine gratitude for the enormous outpouring of concern, love and prayers - we can FEEL it and it has helped us immensely. Even Scooter is doing a little better, but still spends the majority of his time underneath Nick's bed.

With love,
The Brower and Raitt Families

PS: We have been asked to be sure to watch "Good Things Utah" on ABC's channel 4 this Friday at 10:00 a.m.

Funeral Information

2011-06-02T16:16:00.002-06:00

There will be a visitation opportunity for family and friends on Sunday, June 5th from 6:00 to 8:00 p.m. at Lindquist Layton Mortuary - 1867 N. Fairfield Road, Layton, Utah.

On Monday, June 6th, there will be another visitation opportunity from 9:45 to 10:45 a.m. at the Northridge LDS Stake Center, 2375 E. 3225 N., Layton, Utah. The funeral will begin at 11:00 a.m.

I will post Nick's obituary tomorrow. For those that are interested, we are asking that in lieu of flowers, contributions can be made to Nick's WACKY Warriors by visiting www.wackywarriors.org.

Thank you all so much for your messages! The love is very healing. I'm missin' my boy.

Love, Lori

Nicholas William Raitt

2011-06-02T06:14:00.002-06:00

...born January 17th, 1989, earned his angel wings on June 2nd, 2011 at the age of 22.

Tuesday didn't start out well for Nick as he took a tumble trying to walk from his bed to the bathroom. Gave himself a bloody nose and gave us quite a scare, but he promised to ask for help when needing to walk somewhere. By Tuesday afternoon, he was on his cell phone talking to one of his buddies, "Just waiting for dinner, so if you come over, come hungry!" I was cooking spaghetti and he could smell it. Turns out he invited a few of his friends over to watch the NBA playoffs. He was mostly confused and sleepy but contributed to the manly conversation of statistics and athletic skill sporadically throughout the game. He would look at his cell phone often with a curious gaze, not sure what that contraption was supposed to do. How he actually made phone calls is beyond me. He declined eating anything and started to drink less and less water. He was so alert at some points, I kissed the top of his head and told him he looked down right healthy. He'd respond, "I know!"

By bedtime Tuesday, I told him I may or may not sleep in his room, but if he needed help, he was to call for me. He said, "Ok, I'll call for you, or... (lowers his voice softly) whisper for you if you are sleeping next to me." He ended up needing help often - we were up four times for restroom runs. Then about 4:00 a.m., he began throwing up - a lot! We finally just got up at 6:00 a.m. and moved to the couch and he said he was having severe pain in his left shoulder. Hospice came over Wednesday morning around 9:30 a.m. His vitals were just barely beginning to drop and we gave him some liquid morphine for the pain. And then he took quite the nap.

I sat by him all morning and afternoon, as did Lee, Todd & Carly. By 8:00 p.m., his breathing became a little labored and I couldn't get him to respond to me if he was in any pain. I became upset and called for the hospice nurse again. His vitals had dropped significantly and she advised us we had anywhere from now until 72 hours left with him. Lee gently carried him back into his own bedroom so he could be comfortable. Lee was able to have a special conversation with Nick while I consoled the girls. Then Lee, Carly, Kelsey and myself all went into his room and had a family prayer. Just as we said "Amen", Nick opened his eyes and said, "Hey, what is going on in here?", just like he had walked into an intervention. We smiled and said, "We are praying," and he said, "Oh, ok."

Todd came back and we all sat in Nick's room, recalling various stories while holding his hand or touching his arm. One particularly sweet moment happened while we were trying to scooch Nick up closer to the headboard so his long legs would fit on the bed. Todd was on the side of the bed and I was behind Nick on the bed. Todd was trying to lift Nick and put his arms around his body, while Nick draped his arms around Todd's neck. Then all of a sudden, Nick said, "Oh, hug..." and embraced Todd. Todd was so surprised as Nick never likes to hug and embraced him back. Nick didn't want to let go. It was such a touching gift Nick gave his dad. It is amazing how blessed we all were to have our own special one-on-one moments with Nick.

By midnight, we were all pretty tired and decided to take turns. Todd took the first shift and we all went to our own beds. At 2:19, Todd called for me and I came into Nick's room just as he had taken his last breath. Todd said it was very peaceful. We woke the rest of the family and called hospice again.

Nick's dog, Scooter, is so sad. He sat by Nick's spot on the couch, placed his face between his paws and just looked towards Nick's bedroom with the saddest eyes. He stayed in Nick's room when we were all in there together and he came out just after Nick passed looking for some love. This is unusual because he is such a teenager when it comes to sleeping - he needs about 12 hours a day.

I know our angels are still here as when my hatred of cancer comes boiling over for taking Nick away, the rage dissipates immediately and I only have an overwhelming feeling of love for my sweet boy. There are so many more stories but will keep them with our family for now.

So much to do... Funeral information will be decided later today. Thank you all so much for your love.

With enormous gratitude,

Lori, Lee, Carly, Kelsey and Todd
and Scooter, too

CureSearch

2011-05-30T13:10:00.003-06:00

Nick's WACKY Warriors donates 100% of donations received to both First Descents and CureSearch (50/50). We write often of First Descents because Nick has been a camper and counselor and the friendships with other campers and counselors we have formed are priceless. I can't possibly express the positive impact FD has had on Nick, emotionally, physically and spiritually.

But today, I want to write about CureSearch. This foundation is totally dedicated to childhood cancer research, including clinical trials like the one Nick was just enrolled in. Once I'm able to focus, I will post more information on this blog, the WACKY website (http://www.wackywarriors.org/) and Wacky's Facebook page. Until then, I'd like to share a story:

Yesterday, Nick received a large envelope from the Salt Lake City CureSearch Committee (Nick and I are on the committee, too, to promote the first annual CureSearch walk in Salt Lake City on July 9th). Inside were precious handwritten notes from their own group of children (local CureSearch) - all with cancer - Nathanael, Cami, Skyler, Izzy, Millie, Ellie, Brinley, Carson, Jade, Kaidan and Koda. They colored sweet notes that said,

"Tank You!"

"Dear Nick, Thank U for caring for childhood cancer. It means a lot for everyone. Good job fighting hard and being tough. Thanks so, so much!"

"Dear Nick, thank you for helping cancer kids. We love you. Bye. XOXO" (each letter written in a different color crayon.)

One mother showed her 3 1/2 year old daughter with cancer a picture from Nick's blog and that he had cancer, too - what would she like to tell him. She said, "Tell him I love him!"

Another note said, "nIck, I (heart) u" with a dollar enclosed.

This was one of the most tender thank-you packages we have ever received. How beautiful is a message from a four-year old thanking Nick for helping fight cancer? You can bet we will have a team of WACKY participants out on July 9th!

Also, if you visit Wacky's facebook page, you will see pictures of Larry Linne participating at the Ironhorse bike race with Nick's picture pinned to his glove for constant inspiration. Larry is gearing up for the Leadville 100 in Colorado on August 13th. You can bet we'll be there, too!

Finally, Nick is pretty sleepy all the time and gets confused between dream world and real world. He'll ask me randomly about chocolate (atta boy!) or my Ebay bid coming through (never been on Ebay). But then he will answer a question someone in the room will ask ("How old is that athlete? or "What is the prize money for winning the game show?") and he'll know the correct answer, all with his eyes closed. We ordered take-out from Wingers last night, although Nick requested his favorite meal from Chili's. When it arrived, Nick was the first one to wobble over to the kitchen counter to sit down, oblivious he hasn't eaten a thing in the past two days. I said, "Nick, are you hungry?" and he replied, "Well, isn't this what we are supposed to do?" So we all sat down by him, blessed the food and dug in. He ate one teeny, tiny piece of chicken and closed his eyes while the rest of us finished up. Too cute.

He had a rough night last night. This morning as I lead him from his bed to the couch, I teased him that his pajama shorts were inside out. "Aw, dang it, how can you tell?" he said sleepily. "Well, your pockets are on the outside." "Geez, I even looked for that..., will you help me change them back?" I said, "Don't worry about it." But he said, "No, I don't want to be talking in my sleep with my pockets inside-out. Too much." We changed them back.

More later,
Love, Lori

Spirit Ribbons

2011-05-29T11:02:00.003-06:00

I have to say, Friday and Saturday were hard days for Nick. He was pretty sick and I called in the nurse. She gave him some different meds to keep his stomach calm (it worked) and we increased his pain meds again (it worked). He slept on and off most of the time on the couch, always wanting to be nearby everyone in the center of the house.

As Nick gets weaker, my emotions grow stronger, right out there on my sleeve, next to the tissues. Nick has asked me to help him write a few letters of gratitude to those he has special connections with. We did it, although he was in and out of sleep (thank goodness, so he couldn't see my tears as he spoke and I typed). Some of the emails we have received are so amazingly eloquent and I'm not sure my wavering voice does them justice as I read them aloud to Nick.

Kelsey had her first tournament with her comp team, the Bukoos, this weekend. There are two teammates that now play with another team - Avalanche - this year, but we remain close to the players and parents, regardless of their uniform color. The Bukoos have been integral in our annual charity softball tournaments, with an obvious emotional connection with Kelsey and Nick. At the last charity tournament, one of the mom's handed out "Spirit Ribbons" for each player, parent, umpire, etc. to wear throughout the tournament in support of Nick. Todd and I have been taking turns going to Kelsey's games this weekend (along with Lee, Carly and grandparents). When I arrived to Saturday's game, the entire Avalanche team, including coaches and parents, were wearing the same "Spirit Ribbons", again showing support for Nick's journey. Where is that tissue?

We still have connections, too, with Carly's old comp team, Xtreme. They always volunteer at the charity tournaments - couldn't do it without them. Carly has been our personal angel here at home, bringing out comedy videos, running errands, joining Nick in scolding me on my parenting skills with Kelsey, "I believe our curfew was 9:00!!!!" or just hanging out on the couch with Nick. Sweet girl. Tissue?

Makelle left this morning and my parents leave early this afternoon. Just bring me the box...

Nick is doing well this morning, so I'm doing well this morning. Please keep those prayers coming - they are working miracles in our home!

Love Lori

Water for Elephants

2011-05-26T17:56:00.002-06:00

Nick has been doing quite well these past few days, despite having to slowly increase his pain medication and his tummy isn't looking so good. He is sleeping well at night and yesterday, he actually talked Lee & Carly into taking him to go see "Water for Elephants" and loved it. It was quite an adventure getting off the couch and doing something "normal" for a few hours. Kelsey and I had to attend her end-of-season high school softball barbecue - she received her high school letter as a freshman, so it was a big deal for her.

Makelle surprised him yesterday by flying in from Philadelphia; he was really happy to see her. The entire entourage of cutie pies descended upon our couch last night, rooting on the American Idol finalists. Also, Grandma & Grandpa arrive yesterday, too, visiting for a couple of days. Add the two dogs and we have a full house.

But today, he isn't feeling too well and wasn't up to having any visitors. Regardless, his spirits are in fine fettle as Carly, Nick and I watched Michael Jackson's "This Is It" DVD; I was in the middle with Nick and Carly singing along. It was a great time for me and still makes me smile.

We have been inundated with emails, texts and postings - THANK YOU all so much! It is wonderful to have such a whirlwind of prayerful energy surround our home and hearts. Our house must be glowing. Although surreal, it is good. Nick and I are working through things slowly, but tenderly. Mostly I just sit by him on the couch and rub his feet, hands or his head. He has enough hair now to get bed head. Cute.

With love,

Lori

And hospice begins...

2011-05-23T20:57:00.002-06:00

On Friday, we began to feel better once we got home. I don't know how to explain this very well, but we believe our house is FULL of angels. The strong feeling here is calm, peaceful and comforting.

While Todd called Carly in St. Louis, Lee and I took Kelsey aside and told her the news. Both girls took it as well as can be expected and thankfully surrounded by loving family members. We left it up to Carly to decide if she wanted to come home early ( she is scheduled to come home tonight), but she felt she was in good, supportive hands with her extended family. She was able to have some late night, all night conversations, and prayerful, thoughtful discussions. She is comforted. Kelsey chose to forge ahead and went to be with her softball family for practice. Her coach let her teammates know of the situation by reading them the latest blog entry. Though emotional for all, she is comforted, too.

Saturday morning, Nick and I had a short conversation about hospice. He simply said, "well, chemo is just going to prolong things and make me sicker than I already am - how much time do I have?" I could not believe I was having this discussion with my son. I can think of a MILLION things to say, except "two weeks." We met with the hospice nurse for about 30 minutes and got everything in order, although we don't need any services yet. I'm still able to convince Nick to hit the showers on a fairly regular basis and his pain is still under control.

After Kelsey finished up practice, Lee offered to take her over to the Ogden Marathon, where Todd and his girlfriend, Leigh, were running the full marathon. Kelsey was able to surprise her dad a few blocks from the finish line and ran with him to finish, metal cleats and all. It was a very sweet and much needed emotional gift she gave him and very sweet of Lee to get her there.

Nick had a full house most of the day with friends coming to just hang out for awhile. I ordered pizza and sliced up some fresh watermelon (odd combo, I know) and he finally booted the last two friends out at 9:00 p.m. We had a few more visitors on Sunday and today. He had to bump up his meds today as his pain is starting to creep up and his tummy is getting a little fuller. He is eating a little and drinking a lot. He knows the status of both the basketball and hockey playoffs, which is good for me, because I can't remember anything. He even helped Kelsey solve the surface area of a cone for math a few days ago, too.

He is beginning to decline visitors and phone calls now, though, embracing his emotional and physical privacy. He is taking some time to write a few things down and we are able to have some open conversations about our feelings. We have so much more to say.

Please be sure to call first (801-554-5505) before coming over, as Nick may not feel up to receiving company. If you would like to send Nick a note, our physical addrress is: 2777 N. 2175 E., Layton, UT 84040; and my email address is: lorib@quadrantliving.com.

Thank you, everyone, for the prayerful words of encouragement and love - the emails, texts, Facebook posts, cards and blog posts. The prayers are being answered, evidenced by the amazing Spirit that has surrounded our home and hearts.

With love,

Lori

It's a sad day...

2011-05-20T14:18:00.003-06:00

The doctors came in today with the ct scan results: the cancer has spread everywhere in Nick's abdomen. He is officially off the clinical trial. Due to his severe state of malnutrition, chemo is not recommended because his body cannot tolerate it. The cancer is affecting his ability to eat and digest food (through the intestines), so it doesn't make sense to have a feeding tube.

So.... the recommendation is to obtain the services of hospice as soon as possible. Here is the most difficult part - they anticipate Nick's remaining time here on earth to be about two weeks. They discharged him this afternoon and we are now at home. Nick still wants this weekend to decide his next steps; doctors will continue chemo if he wants them to. Dr. Gouw will call us tomorrow to finalize Nick's plans.

We are devastated, to say the least. When Nick asked me how I was going to tell the girls, I just cried and said I don't know. I asked him how he was handling all of this and he said, "I'm ok, really." We have a lot more talking, crying and praying to do this weekend as we prepare for his next journey.

Please call first if you would like to come and visit Nick - 801-554-5505.

Just to keep the tradition of bringing in a ray of light, here is a quick story: Nick's room was at the very end of the hall at Huntsman, right smack next to the construction where Huntsman is adding on another multi-million dollar facility. We have heard some very interesting and colorful conversations the past 24 hours; some construction workers can actually look into his room from the outside. One of Nick's medical personnel said, "Oh, Nick, you should really have some fun with this..." to which Nick responded immediately, "Should I fake a seizure for them?"

And for now, here is a picture of Nick and Makelle on her wedding day - this makes us all smile!
With love,

Lori

If I Die Young

2011-05-19T09:16:00.002-06:00

Nick has a new favorite song - "If I Die Young" by The Band Perry. The lyrics will follow at end of this post.

This past week hasn't been easy, although he has slept through most of it. His eating has not improved, pain in lungs has returned and his fatigue is off the charts. We came in yesterday to meet with the Pain Clinic. Basically, they are setting Nick up on palliative care, getting a baseline on his pain so that should anything change, increasing or changing his pain medication is simplified and expedited. Our appointment was at 1:00 and poor Nick could barely keep his eyes open. During the physical exam, he lifted up his shirt to the doctor could feel his tummy and we all noticed the area near his belly button towards where his prior permanent drain was: it was red again (it had almost disappeared last week). He has only been off his antibiotics since Monday.

After a visit from Katie, Grace & Dr. Gouw, they decided Nick needed to have another paracentisis (his tummy is pretty firm again) and then culture the fluid to see if the infection is back. It took some time, but he was wheeled in around 6:00 p.m. to get his tummy drained. After about an hour, the radiologist came to talk to me. Uh oh, this can't be good. He said there was not any fluid in Nick's abdomen; it was all filled with a gelatin substance and they were only able to withdraw 2 mls. He wasn't sure if it was enough to culture so they may have to draw blood to test for infection; also not sure if there was enough to biopsy as he is suspicious it is all malignant. I was right, this isn't good. They wheeled Nick back into the room with me so I could help him get dressed. Nick asked me, "Did he tell you it was malignant?" I started to cry. He then asked, "Is that a bad thing?" I said, "It sounds like it." and I apologized as I dried my eyes.

His new favorite song played on the radio as we drove to the appointment and I had a tough time keeping my emotions in check then. On our drive home, it played again. As he said, "Aw, I LOVE this song!", I couldn't hold the tears back any longer. He softly said, "We can change the channel..." but I said no, I needed to release some pressure. As soon as that song was over, the next song was, "Calling All Angels" by Train. I smiled as I dried my tears, again, that this was a perfect follow-up song, especially with the lyrics, "You don't give up, I don't give up..."

Once home, we found out that Nick's favorite song was sung by one of the American Idol contestants on the show last night. Seriously? Then Nick asked Kelsey to come and sit by him so he could give her some of his positive energy. So she did. He then asked her to put her arm around him as he did her. So she did. Then told her it was ok if she wanted to swing her leg over the top of his, both if she wanted. So she did. Then took her other hand and held it in his and said, "See, isn't that nice?" Too freakin cute! Lee, Kelsey, Nick and I were all on the one tiny end of our couch.

Today we had to come back to Huntsman (at 7:30 a.m. for crying out loud!) to have labs drawn for the trial. Grace was able to pull Dr. Gouw out of a meeting and we talked about yesterday's problems. He suggested that Nick drop the trial and go back on chemo (probably cycle 3 which is a two week cycle). Before Nick makes that decision, Dr. Gouw wants to have a ct scan done immediately. To expedite everything, he had Nick admitted to the 4th floor as inpatient. We can get the ct scan done today, decide on chemo, monitor his nutritional intake, keep an eye on possible return of staph infection and his pulse, which was at 130 today. And that is where we are right now, room 4625.

I will post more later once we get the results back. We are all a little shaken and very worried. BUT, we are with a floor full of staff that love Nick and will care for him tenderly, as if he were their own son. Love and hope are very much in abundance.

Here are the lyrics to Nick's new favorite song:

THE BAND PERRY LYRICS

"If I Die Young"

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song

Uh oh, uh oh

Lord make me a rainbow, I'll shine down on my mother
She'll know I'm safe with you when she stands under my colors, oh and
Life ain't always what you think it ought to be, no
Ain't even grey, but she buries her baby

The sharp knife of a short life, well
I've had, just enough time

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song

The sharp knife of a short life, well
I've had, just enough time

And I'll be wearing white, when I come into your kingdom
I'm as green as the ring on my little, cold finger, I've
Never known the lovin' of a man
But it sure felt nice when he was holding my hand, there's a
Boy here in town who says he'll love me forever,
Who would have thought forever could be severed by
The sharp knife of a short life, well,
I've had, just enough time

So put on your best boys and I'll wear my pearls
What I never did is done

A penny for my thoughts, oh no, I'll sell them for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin'

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song

Uh oh (uh, oh)
The ballad of a dove (uh, oh)
Go with peace and love
Gather up your tears, keep 'em in your pocket
Save them for a time when you're really gonna need them, oh

The sharp knife of a short life, well
I've had, just enough time

So put on your best boys and I'll wear my pearls

Love Lori

Cycle 1, Day 8 - Update

2011-05-13T13:08:00.003-06:00

Sorry for the delay in posting; Blogspot had to do some maintenance...

It has been a long week. This past weekend, Nick was very sick - throwing up, not eating and extremely fatigued and weak. We still aren't sure if it is the trial pills, antibiotics, fentynal patch or cancer. He got better throughout the week, eating very sporadically (strawberries, cantaloupe, etc.)

Thursday was our 10 hour hospital visit. His EKG still indicates an abnormal t-wave; doctors don't consider it a problem, but will keep an eye on it. His blood work indicates a slight elevation in a couple of of areas relating to inflammation. We are consulting with the infectious disease doctor to make sure the staph infection isn't getting any crazy ideas. Good news: the pain in his ribs is gone! Yay! Bad news: he lost 7 lbs in a week. Boo. He is now on a prescription (one that Cheech and Chong would highly approve) to help stimulate his appetite, lower anxiety and control nausea. The prescription bottle states it is used for anorexia - Nick said, "I knew it! That's what I have!"

Nick also got his temporary drain taken out Thursday, in between lab draws. Unfortunately, it was done without ANY pain medication (myriad of reasons) and it was almost more than he could bear. He came back in a wheelchair, all color drained from his gaunt face and he couldn't speak for awhile. I placed my hand on his arm, asked him if he was ok, but all he could do was shake his head, squeeze the top part of his nose to ward off any tears that may sneak out, and place his Penguins hat over his eyes. That was a tough moment for us both.

Good moments, though, happened earlier in the week. He asked if I was going in to work and I said, "No, I'm going to hang out with you, if that's ok." He said, "I'm LOVING it!" Later when I asked him if he was ready for a cup of tea, he said, "only if it is made with extra love..." And one night when I was getting him all settled in bed, he waved me over with both hands and said, "hug..." So we did.

Nick & Kelsey enjoyed spending time with Todd and extended family and our trip to Spokane was pure comfort for me to be with my family and I loved being with Lee & Carly. Nick got me a beautiful figurine of a mother and son as well as a mother's ring (Lee was the co-conspirator) for Mother's Day. Nothing sweeter than those two men in my life! Well, except for my daughters... Speaking of, Kelsey made 2nd team, all region in softball (wahoo!!!!) - high school ball is now officially over for her and she is anxiously waiting for her comp team to start practice soon. Carly is off again next week to St. Louis with her aunt Chris and entourage for a wedding and fun.

That's it for now - no doctors or hospitals until Wednesday and Thursday next week and they are short visits. Til then, here is another picture of Nick - always been a cowboy at heart.

With love,

Lori

There's hope!

2011-05-05T16:29:00.002-06:00

An interesting week, to say the least. Monday began with a slight temp, concerning EKG, a leaking drain, high pulse rate and generally feeling very poorly. This was BEFORE he was given the trial drug. Tuesday was not much better, but he did get a new temporary drain and some relief of abdominal fluid. Yesterday was great; he slept well, managing his breakthrough pain better, and eating a bit more. Today, they redid the EKG and determined Monday's was probably off a bit due to pain, staph infection and pressure on the abdominal wall. They will do another EKG next Thursday and we will discuss concerns at that time, if any. Nick is feeling fairly well today.

The really good news came from the clinical trial. There are 3 parts to this trial - part one is for a patient (one over at Primary Children's Hospital) that is receiving 50 mg; part two is for a patient (Nick) that will receive 100 mg and the third is for a patient (tbd) that will receive 150 mg or for patients from part one and two that are progressing nicely without serious side effects. Today we were told that the patient in part one just had his first set of scans after 21 days and there is a definite reduction in tumor! He has a different cancer than Nick, but the two have the same abnormal ALK gene.

Nick is hospital-free until next Thursday, when we will spend all day there again to redo all the tests (blood, EKG, urine, etc.) He also has to check in with his drain doctor; he will have to have a permanent drain put back in sometime soon, probably after he is off iv antibiotics on May 16th. Nick and Kelsey (who is still nursing a gimpy knee) will go up to Todd's for the weekend. Their aunt Chris,uncle Stan and cousins Jessica & Kris are coming out to visit; I'm sure they will have a great time while keeping it low key.

Lee, Carly & I are headed up to Spokane, Washington to attend a surprise 80th birthday party for my aunt Mary Lee (don't worry, she doesn't read this blog). We will re-connect with cousins I haven't seen for years!

Thank you all for the continued prayers. Faith has sustained our hearts to set aside worry and embrace hope once again. I like hope - it's a good thing.

With love,

Lori

The sun finally came out!

2011-05-01T22:32:00.003-06:00

Thursday and Friday were a bit difficult for Nick and he was in bed most of the time. He was not up to attending the pre-wedding dinner and dance Friday night, but he did manage to complete a dvd for Makelle & Austin, which played at the dinner. It was an adorable compilation of the two growing up through the years. I wasn't sure he was going to make it to the wedding on Saturday.

Kelsey was able to tape up her ankle to play again on Friday - a record setting day of miserable weather - a whopping high of 42 degrees. She was involved in a play, calling to catch a foul ball, colliding with the third baseman. Her metal cleat stuck soundly in the ground, while her knee continued to turn, hyper extending it. Good news is she caught the ball and got the out. Bad news is she really is not going to be playing ball for at least a week.

Saturday came and Nick called me in to help him get ready. By 1:45 p.m. we had him dressed in his tux, with his drain and iv antibiotic securely hidden within the suit. He took with him a vial of saline, antiseptic wipes, a new iv to replace at 3:00, bottled water and a Coke. He looked terrific!

The rest of us arrived at 7:00 p.m. for the reception and we stood in line waiting to congratulate the bride and groom. In front of us stood Makelle's grandma and she filled us in on the temple wedding. She said it was freezing outside but Nick was a trouper. Everyone's emotions remained in tact until the photographer took pictures of just Makelle and Nick. Both Makelle's mom and dad couldn't help but let the tears flow at such a tender moment. Her grandma teared up just recalling the memory to Lee and I, which made Lee and I tear up, leading Carly to say in exasperation, "Geez, can we not take you two anywhere?" Nick is very close to the Macrum family and they have been so good to him ever since our families have met. I am very, very grateful for our friendship. Makelle was an absolutely beautiful bride and her husband Austin is a gem, too. I hope to post some pictures soon. The sun finally broke through in the afternoon - it has been a long, cold spring so the sunshine was an extremely welcome sign!

I had thought Nick would be ready to go home as soon as we arrived, but he stayed for the entire reception, including having a dance with Makelle. He finally came home around 10:30, announcing he would be needing some help to get out of his clothes, asked for his pain pills, an Ambien and was headed for bed. We visited for about 15 minutes to fill me in on a few highlights of the night. Austin's mom had made Nick some cowboy pj bottoms for a groomsman's gift and he is still wearing them tonight. They are perfect.

We are to be at the hospital by 8:00 a.m. tomorrow. They will give Nick one dose of the new drug and monitor his heart and blood work throughout the day. We will be there for about 8 hours. On Tuesday & Wednesday, he will just be there for an hour or two for blood work and then Thursday will be the official Day 1 of Cycle 1 and will take the new drug (pill) twice a day for the next 21 days. He will need to go in once or twice a week for lab work and on the 21st day, he'll have another PET scan. If Nick's cancer seems to progress, there is still a possibility he will go back on chemo.

Nick seems to be feeling better tonight and we watched the first disk of "Modern Family" - there was a lot of laughter in our home. The sunshine worked.

As always, we are all very thankful for the support given to our family.

With love,

Lori

Rough day for the entire family...

2011-04-29T08:10:00.002-06:00

Nick had his PET scan Wednesday afternoon and was thoroughly exhausted and in pain by the time we came home 5 hours later. We were able to get him a fentanyl patch and his pain seemed to ease by evening, though he slept little.

I was able to get a copy of the results faxed to me by noon yesterday. It was frightening, to say the least, but placed a call to Dr. Gouw before giving in to panic. Katie called later in the afternoon and confirmed the concern Dr. Gouw has after reading the scan results. It appears Nick has two new cancerous areas in his lungs, his entire abdomen is blanketed with a layer of cancer over an inch thick and a lone gland that has metabolic activity (still have to Google that one...). Dr. Gouw debated putting Nick back on chemo, but decided to go with the clinical trial, which starts on Monday. We all have a tremendous amount of hope riding on it now. At least we now know why Nick is in so much pain, and we are taking extra measures to keep it manageable.

Carly lost her job as a supervisor at a call center yesterday. Obviously not her dream job, but did have her summer plans and college based around this job. She drove home to be with us to help her sooth her wounded pride as we watched Kelsey play in her high school softball game. Another daughter, Natalie, is also facing a very difficult journey in her life starting today, with little for us to do but pray for her emotional strength and express our unconditional love. Fast forward to the junior varsity game - Kelsey was pitching and took a line drive to her right ankle, laying her out flat. School trainer told us to go get it xrayed. As I'm packing up my chair and Kelsey's ball bag, I'm thinking, "wow, we are really having a bad day..."

With all of that being said, Nick is going to be a groomsman for the bride - Makelle - in her wedding tomorrow. He will be looking mighty handsome in a tuxedo and will be able to hide his portable iv and drain tube. Carly brought up the first season of "Modern Family" so we can all get the laughter rolling. Kelsey's ankle is just badly bruised and it got her out of doing any more pitching. Lee is in town for awhile, increasing my strength tenfold while Todd, with all of us, stay close to Nick, Carly & Kelsey.

I will be posting more later about some amazing news with CureSeach, First Descents and all of our upcoming WACKY events. There doesn't seem to be anything better when facing fear than to be proactive in fighting this despicable disease.

Please pray for Nick's immediate and successful response to the clinical trial.

With love,

Lori

What a difference a doctor makes...

2011-04-25T12:46:00.003-06:00

Boy, was I a crab yesterday! I think my whole family was (is?) afraid of me. But then...

Docs came in this morning (infectious disease doctor, interventional radiologist and floor oncologists) and gave Nick the go ahead to be released today. His drain will remain in for now (although Nick is certain it isn't working) and will have continuous iv antibiotic 24/7 through May 16th. Next came in Dr. Gouw (oh, thank goodness!), with Katie, Grace and Spencer, the clinical trial guy. Trial is ready to take Nick and he signed the consent forms. We are working on pre-testing schedule as I type and Nick will begin treatment next week! I also asked Dr. Gouw what he thought "scalloping of the liver" meant. He smiled and said, "I don't know, I was going to call the radiologist to see what was really on the ct scan. I'll go call right now." He came back 5 minutes later explaining that something is pushing on Nick's liver, making a dent and causing pain, coincidentally where Nick is experiencing in his back right ribs. We all said a collective "ah....." since that appears to be the culprit behind his pain. This is cancer related, not infection related, so will keep a close eye on his pain level. Not sure what it is, but I understand Dr. Gouw so much better; maybe its because he really cares for Nick personally, as well as professionally.

So, I'm off to pack up Nick's room. We should be out of here shortly where Nick can finally be in his own comfy bed. I'll be trying to think of what nice to make for dinner as I try to make amends with my family and genuinely thank them for all their help through this week.

A special thank you to all of those offering prayers and support for Nick's well-being, including the particularly heart-felt prayer for Nick to have beautiful nurses while in the hospital (and he did, as a matter of fact).

With love,
Lori

Still here...

2011-04-24T16:06:00.004-06:00

The ct scan was done without incident and the floor oncologist finally came 5 hours later (after our nurse paged him) and informed us the new temporary drain didn't appear to be working (we know) and the tumor and acsites were noted. WHAT???? He read the look on our faces, scratched his head and said, "Do you have any questions?" Yes, you idiot, what tumor? After some clarification on my part, he acknowledged there isn't an actual tumor, per se, but the abdomen and liver appear to have active cancer throughout. He scratched his head again, smiled meekly and left.

This morning, one of the doctors on rounds came in to check up on Nick. I told him about the scan results that sent us reeling but didn't have any explanation. He walked towards me and kindly explained that the doc wasn't familiar with Nick's history and probably felt uncomfortable in discussing this case. Then sweet as pie, asked "So, do you have any questions?" Idiot #2. We want Dr Gouw, wah! We patiently waited for the doctors on rounds, #2 idiot in tow. They are stumped about the drain; since it isn't working, they want to take it out tomorrow (no going home this Easter). Conversation went something like this: Dr: There isn't much fluid in his abdomen so we will take out the drain. Me: If there isn't much fluid, why is his tummy distended? Dr: Because he has fluid in his abdomen, although in pockets too small to drain from. We know that! Also, the tissue that makes up the pockets are permanent. So how do we get the fluid out? They don't know - Nick will just have to keep having the paracentisis procedure weekly for now. Me: What does it mean when the ct report says, "scalloping on the liver capsule? The doctor replied by giving me a 5 minute explanation of how the abdomen wall, liver and other internal organs are protected, blah, blah, blah. Me: What I'm asking is if there is cancer in his liver. Dr: No. But the small cells are everywhere in his abdomen. We know that! I'm getting ticked off. No indication if this is bad, good or indifferent, although we all knew it wasn't unexpected, especially being off chemo for a month.

Lee took Carly & Kelsey to church this morning, while his dad, Leigh, Jennie and I kept Nick company. After the doctors left, I went off home to gather up a picnic and Easter basket for Nick and we all came back and had a very nice lunch together. Carly made Easter sugar cookies, Kelsey decorated eggs and we all pitched in to bring the true spirit of Easter back in to room 4506. His room looks quite nice today with balloons, daffodils, cards and an awesome stuffed Buzz Lightyear.

New plan is they are changing antibiotic again and if he remain stable (fever free, etc) he can go home tomorrow. His white cells jumped back up to 25, but they are pretty sure it is because of the prednisone he had yesterday for his scans. Nick is still liking Ambien and is getting his sleep. Other than the stinking cancer attacking, Nick is doing great.

Hopefully, Nick remains stable, drain tube removed (again!) and we go home. He will be on iv antibiotics for 4 weeks. We still plan on meeting with Dr. Gouw tomorrow at 10 to sign consent forms and we can get moving on this clinical trial.

Nick & Elliott

Happy Easter to everyone!

With love,
Lori

Well, not so fast...

2011-04-22T22:01:00.002-06:00

Minutes after I posted yesterday, things changed. First, switched back to original antibiotic, Vancomycin. Next, after waiting for four hours, radiology tried to drain Nick's tummy, but his abdomen was filled with tiny pockets of fluid, rather than one large pocket so they couldn't drain anything - sort of like honeycomb. Then by later in afternoon, he got a slight fever. His potassium levels were low so he got an extra iv to replenish it. He was tired and uncomfortable. They suggested he take an Ambien for bedtime; combine that with pain meds and he finally slept like a baby.

Next morning, we got a visit from the infectious disease doctor. Nick has MSSA, which is better than MRSA, and is very responsive to Vancomycin. Because he had a fever yesterday, they are suspicious the pockets of fluid are protected and not being affected by the antibiotics so they did a procedure on him this afternoon (another four hour wait, which meant no food or drink after midnight last night because of sedation). They place a needle/tube into his abdomen and try to break up the little pockets, mix it up a little, and hopefully get more fluid to drain and allow the antibiotics to work. Turns out the procedure didn't drain much of anything, so he has a temporary drain and bag in for now. As Nick said, he looks like a little "chub chub." Then came in entourage of floor oncs and announced Nick will now get a ct scan done as they are concerned with the pain still in his lungs and a possible abscess. Hey, didn't we just talk about this on Wednesday, which was scheduled and then cancelled?

CT scan scheduled for tomorrow at noon. Not sure if he will be released or not... The Easter Bunny may be hopping on over to Huntsman. Nick has been walking and riding the exercise bike, getting lots of visitors and taking lots of naps. His blood counts continue to improve, he is off oxygen for longer periods of time, but his pulse is still around 120. Looks like this is going to be a slow recovery. Good news is that this isn't interfering with the clinical trial and will sign consent forms on Monday.

One funny story before closing: Lee and I went to see him tonight around 7:00 p.m. along with his friend, Kailey. He had just been given a dose of Dilaudin (sp?) and he was very, very sleepy, but was trying to finish reading a text on his phone. We were talking to him, but as hard as he tried, he could only raise his eyebrows, not his eyelids. We all bust up giggling, but he kept on trying, finally using his fingers to literally pry open his eyes. It was one of the funniest things I had seen in a long time.

Good night, all.
Love,
Lori

It's Staph!

2011-04-21T13:17:00.002-06:00

Things change hourly around here, but bottom line is that the bacteria culture finally grew results that confirmed staph. They will be putting him on a more appropriate antibiotic today. If he remains fever-free with stable blood counts for the next 24 hours, he can come home tomorrow. He still runs a teeny temp of 99, his oxygen levels are still low and his pulse around 112-117. They think his oxyg levels are low because of the pain in his lung and not being able to take a deep breath, due to probable blood clot. They will be draining his tummy later today (he is looking pregnant again), so they have to hold off on his blood thinning shots. To help with all of this, Nick is on a stationery bike for 30 minutes a day and taking walks in the hospital. They also think his pulse will begin to drop as the infection subsides and the body isn't working so hard to fight it.

He still isn't sleeping well and is so tired. It will be good to get him in his own comfy bed. For the first time ever, no one spent the night with him (Lee and Todd still both out of town) and I needed to be home for Kelsey and the dogs (Kelsey hit a stand up double with an RBI last night, FYI...) It was very traumatic for me though Nick was probably pleased. He refused to let me write my name and phone number on the whiteboard in his room, in case of an emergency. Fine. I'll just give it to each nurse, aide, receptionist, scheduler, technician and housekeeper I see on my way out.

More later, thanks all!
Love, Lori

Heart of a lion, beating like a hummingbird

2011-04-19T22:30:00.002-06:00

Interesting day... We both slept better and by noon, his temp was down, pulse down (well, to 109), and pain subsiding. Docs on rounds said bacteria not as bad as they thought and since he is responding well, they'll stay the course. White cell count up again to 25, but they said that is normal, should start to see a decline in a day or two. So off to home I go for a nap then to Kelsey's softball game - we actually had sunshine today.

I'm barely home when I get a text from Nick saying the pain in his lung is getting intense and went to get an X-ray, which didn't find anything. Also, his red cell count still low so they gave him a blood transfusion. Then, his oxygen level kept dropping off and on, as low as 79, so he is now on oxygen; his pulse jumped up to 130 a few times, hovering now around 120; and to top it off, his fever is back, although not too high.

Fairy godmothers came through today - Jennie bringing him his favorite egg mcmuffin this morning and Denise bringing his favorite clam chowder from Market Street. I made arrangements for Kelsey to stay at a friends house and I'm back up here with Nick tonight.

The good news is that his tummy doesn't hurt too much and he showered. Also, my other good news is that Kelsey had an RBI, got on base 3 times and was a brick wall as catcher. Gotta take it when you find it!

Nick is a very kind patient: he always says thank you to the nurses, aids and doctors, smiles when they come in or out, never appears to get irritated when being woken for yet another set of vitals, iv bag or shot and often inquires about their personal life. He's a terrific young man.

On that note, I'm off to say a prayer for a peaceful and healing night.
With love,
Lori

Drains, Bacteria & Clinical Trials

2011-04-18T18:50:00.003-06:00

Let's start with the drain... Nick went down to radiology so they could see what that rascal drain was up to. Turned out it was clogged near the cap so they just snipped it off and added a new cap. Tah dah! Two liters were promptly drained and a portion sent off to see if it had bacteria in it. Regardless of where the infection started, they will pull the drain from his stomach if the fluid has bacteria. Nick's body is already flippin out trying to kill the whopper infection he has going on and the big, long, plastic foreign object is upsetting to his body and the bacteria thinks it is a great place to lodge on to, so out it goes. Yes, turns out it had bacteria in it so Nick is getting it removed as I type, properly medicated, of course! Actually, testing positive to bacteria means that it is an infection, not tumor growth, so it's a good thing!

Nick's pain is still intense and they have agreed to up his pain medication. They are pretty sure the pain is due to the bacterial infection. They are giving him whopper antibiotics to help tackle it (white blood cell count now up to 23). He still has a fever hovering around 101 and his pulse remains at 120. He hasn't been able to sleep more than a few minutes at a time and he is exhausted.

Dr. Gouw, Katie & Grace came to check on Nick and to discuss the clinical trial. The trial has two parts; the first one starts by giving the patient three increased doses of the drug while monitoring the effect. The second part starts where the first one ended, giving only the highest dosage deemed safe by the prior test. Dr. Gouw said Nick's tumor sample not only tested positive to the test drug, but SCREAMED positive. This is really encouraging to Dr. Gouw. That being said, he wants to hold off on starting Nick on the trial for a couple of weeks and since his scans and blood counts indicate infection vs. tumor growth, he thinks it will be ok. We still have the NY study and possibly chemo for alternative options.

So right now, we are focusing on Nick's battle against this raging infection. I'm home now to shower (the hospital staff will thank me), have dinner with Lee & Kelsey then back to spend the night with Nick. Carly drove up from Provo to go visit him tonight. He isn't quite up to visitors yet, but will feel better when his fever breaks.

Thank you so much that have already reached out to Nick (both spoken and unspoken) and offered up your prayers and support. Today turned out to be a good day.

With love, Lori

Concerning Issues

2011-04-18T08:54:00.004-06:00

Nick called Thurs afternoon to let us know he was on way home saying he was tired. I was attending our CureSearch kickoff party but more than anxious to get home to see him. He said he drained a liter and it was full of tissue. Eeeeew. He had terrible abdominal pain, not cramps, but like doing 500 crunches (well, like 5 for me). Two oxycodone later, he slept through the night. He felt better Friday, moving from bed to couch, thirsty and drinking a lot, but little food. Saturday was the same, hockey playoffs keeping him occupied. I served him dinner in bed, which he couldn't keep down. Eeeeew. A boatload of buddies came by and really lifted his spirits.

By Sunday, his pain began increasing again. He tried to drain his tummy, but it seemed to be completely clogged. By Sunday night, he said, "let's go". I called the oncologist on-call, who recommended going to ER - our favorite! Nick was in a lot of pain and feeling nauseous. I packed our usual bags, blankets and pillows and we piled in the car with Nick holding a plastic bag, just in case. He had "the look" and I asked him if he was going to get sick and he nodded. I yelled, "then get out!!". We were still in our garage, I was hoping he could make a run for it. Nope. Eeeeew.

The ER nurse asked him what his symptoms were: fever of 101.5, vomiting, severe abdominal pain, distended tummy, high pulse rate and the new one where he had pain in his right shoulder, similar to when he had a blood clot. They drew a ton of blood, X-ray and CT scan - results came back stable and we were sent to Huntsman, 4th floor at 4:00 a.m., loaded with fluids, antibiotics and pain meds. Nick's room number is 4506 and his direct phone number is 801-587-4506 (his cell doesnt work well here.)

So now we are waiting to see how they are going to fix his drain, ought to be interesting. We were supposed to meet with Dr Gouw at 10:30 but not sure how this will affect the clinical trial. He still has a fever with what is probably a bacterial infection in his abdomen (white blood cell count at 17). It is common with acites and fairly easy to treat, but will need a fluid sample to confirm. He doesn't have a large enough pocket of fluid built up yet (so why is his tummy distended?) so not sure what they are going to do yet.

What I do find amazing is that Nick made it home just in time, after enjoying every last second with First Descents group in Moab. As soon as the last of the campers headed home, his body told him it needed some rest. And he listened.

More later,
With love,
Lori

Of Mice and Men

2011-04-12T21:31:00.002-06:00

I have spoken to Nick a few times and he is having a great time in Moab with his rock climbing campers. I am excited to see the pictures and hear the stories!

Because he was neutropenic, he had to have labs done last Monday. His platelets were very low so he got to take a break in his blood thinning shots. Nothing like rock climbing when you have to be careful about bruising and not being able to have blood that clots and potentially face internal bleeding. Ok, that's a total "mom" comment. He had to have labs done again on Thursday (he was able to go to Moab Hospital and they faxed results to Huntsman). Platelets are back up a bit but confirmed his hemoglobin has been steadily dropping over the past couple of months. This is the part of the red blood cells that carry oxygen to the body from the lungs. He is very anemic, feeling pretty fatigued. He might get a blood transfusion next week when he goes in for his dr appointment next week just to give him a boost. This is also indicative that his bone marrow isn't bouncing back like it used to because of how long he has been on chemo. Frankly, we are all surprised he has been able to tolerate the chemo this long.

So, since NY still isn't ready to enroll patients for their clinical trial, Nick will enroll in the Salt Lake trial LDK378, developed by Novartis. It was designed for anaplastic lymphoma kinase (ALK) but doctors determined that the rhabdo cell has similar characteristics and have agreed to accept rhabdo patients, too. We will learn more on the 18th, but all I know so far is that it is an oral pill. Nick said he is only concerned about the side effects, but I need to remind him that is why it is a phase one trial - they are using HIM to find out what the side affects are! It has never been tested on humans before. The good news, in a weird and disturbing way, is that this new drug slows down cancer growth in mice. It's the dosage they have to fine tune. Nick is in for a barrage of tests: EKG, PET, CT, MRI, labs, labs and more labs.

That's it for now, we will post more about camp and clinical trial details next week. Blessings to all!

Lori

First Descents Ball

2011-04-04T11:36:00.004-06:00

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

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

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

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

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

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

With love,

Lori

We're going to sleep well tonight!

2011-03-28T15:34:00.004-06:00

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

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

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

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

Leadville, Packers & Scans

2011-03-25T16:53:00.003-06:00

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

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

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

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

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

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

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

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

AND THEN...

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

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

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

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

Lori & Nick

Rounds 2, 3 & 28

2011-03-21T11:42:00.004-06:00

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

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

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

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

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

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

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

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

Love to all - thank you for checking in!

Lori

A good week!

2011-03-14T14:31:00.002-06:00

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

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

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

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

Lori

Home again, home again, lickety split!

2011-03-06T15:46:00.002-07:00

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

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

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

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

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

With blessings,

Lori

Oh, so stinkin' close!

2011-03-04T18:18:00.002-07:00

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

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

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

More later as blood results come in. With love,

Lori

A picture is worth a thousand words...

2011-02-23T11:55:00.003-07:00

My first question to Dr. Gouw this morning was "just how much has the cancer decreased?" He answered by showing us the scans from December side by side with yesterday's scans. One one on the right appeared to have mostly solid gray, though you could see the spine. The other was full of several spots of white, black and various shades of grey. We all assumed the one on the right was the good one, nice and clear. Nope! The grey meant the cancer was everywhere! So being able to see all his organs, contrast, etc. is fantastic! I'm very, very thankful we didn't see December's scans earlier - it would've scared the life out of me!

We then talked about Nick's upcoming calendar, with the NCAA tournament in March and First Descent camps in April. Dr. Gouw worked it out so Nick will have a full dose today of cycle #1 for 1 day (which is particularly brutal), then off for four weeks. Cycle #2 isn't until March 21st for 5 days, then off for another four weeks then cycle #3 for 10 days on April 18th. So Nick will have a great couple of months!

Still no results on either clinical trial, although Dr. Gouw said it is very likely that Nick will test positive to the Sloan Kettering #09-090 trial as about 90% rhabdo cells do, while the local ALK trial has only just begun to test on sarcoma cells. And yes, the trial at Sloan Kettering will be treated in NYC.

That's it for now! Keep the prayers coming for Nick this week - he is going to be one sick fella. Blessings to all,

Love, Lori

Prelim is in...

2011-02-22T14:23:00.002-07:00

"...decrease in peritoneal metastatic disease..." and "...previously demonstrated right retrovesical heterogeneous mass is not visualized on this exam..."

Translation - Nick is still responding to treatment.

Nice.

More tomorrow after doctor's appointment.

Love Lori

Let's have some fun!

2011-02-15T11:35:00.002-07:00

With the tummy rumblings settling down, Nick jumped on the opportunity to go to Moab today (thank you so much, Fairy Godmother, Jennie and Colin) to spend some time with Colin. He will help trailer down horses to Colin's new property in Arizona, where Nick will hone his cowboy skills, topped with a brand new cowboy hat he has been saving for such an occasion. We first had to stop by Huntsman this morning to have his labs checked and 30 minutes later, Katie confirmed he was fine to go. His white blood cell count was 50,000! Normal counts are around 12,000. This means his blood marrow is working very, very well, although helped along by his Neulasta shot, which promotes white cell production. Nick will be flying home on Sunday. This trip is better for him than any chemo treatment out there.

I took advantage of Nick's schedule and booked a weekend trip for Lee and I to Las Vegas. Kelsey will hang out with her dad, as she is free of any sporting tournaments. The whole family will have some much needed r & r so we can be mentally and physically prepared for next week: scans on the 22nd and an aggressive round of chemo on the 23rd (this one wipes Nick out).

Lee is out of town and Carly is down at school, so Nick took Kelsey and I out for a nice Valentine's Day dinner. It was delicious and I thoroughly enjoyed watching the kind-hearted banter between the two siblings (our waitress did, too). This is a great week.

May everyone have a great week, too! Blessings and love,

Lori

Is this the Twighlight Zone?

2011-02-09T20:28:00.003-07:00

Nick survived the long morning on Monday. It took awhile getting his chemo going, waiting for his labs to return - all levels good (except his pulse is high again at 103). A 2 hour visit turned into a 4 hour visit, but that's ok. Off to grab a bite at his favorite place for some delicious clam chowder; did I mention he gained 3 more pounds? While we were eating, we got a call from a doctor in New York (Sloan Kettering) who is leading up the phase one clinical trial, Intraperitoneal Radioimmunotherapy. The treatment involves an antibody or protein that binds with certain tumor cells, similar to rhabdo cells. Radioactive iodine is bound in the antibody, subsequently killing the tumor cells when injected into the lining of the abdomen. The doctor was asking for Nick's consent to test a portion of Nick's frozen tumor tissue sample to see if the antibody will work. Well, sure! Our hearts skip a beat, a smile breaks out and hope is off and running. Targeted therapy is showing up everywhere, with the best part being that only cancer cells are killed, not the healthy ones. Off we race home to fax the consent forms back asap!

Then we read the fine print. Phase one trials aren't very fun - not much of a step from experimenting on mice to experimenting on humans. So experimental, in fact, that only 24 participants are being accepted into this trial. Apparently what they are trying to determine is just how much radioactivity is safe for treatment. Nick and I both have visions of him glowing in the dark, with the doctor saying, "Whoops, my bad. Let's dial that back a bit." We have many questions, including how long it will take to test the tissue, if the treatment will be in New York, etc.

The cool thing is that Nick is totally open to it, saying that he is willing to keep looking for that ever evasive curative treatment, knowing that he could be the one it works for. Although optimistic, as a mom, I'd rather they practice on someone else first. But Hope, ever present and ever strong, remains thriving in our hearts.

And the learning continues...

Nick is feeling fairly well today, but having stomach cramps off and on. His trip to Moab and Arizona is set for next week, and that is the best treatment he could have! The cowboy life with horses, fresh air and great friends is extremely healing.

Thanks to all for checking in and for the prayers -

Lori

Way to go, Packers!

2011-02-06T20:56:00.003-07:00

Nick had a long week and has one more week of chemo to go. He isn't feeling so well this weekend and watched the big game in his room, with Lee camped out, too, keeping him company. He is trying to arrange a trip to Moab and Arizona later in the month before he has his scans on the 22nd. He'll have to play that one day-to-day.

In the meantime, here is a wonderful cartoon drawn by our close friend from Canada - Jay Paterson - for Nick. Made us smile! Nick said, "Hey, it looks just like me! How did he do that? Those are MY knees!"

G'night, all...

Love Lori

Outpatient!

2011-01-31T18:26:00.004-07:00

When insurance declined temozolomide (aka temodor), Dr. Gouw showed them by replacing it with decarbazine, which is similar. So, yay, another new chemo Nick hasn't had yet. Good news is that it can be given via iv through outpatient, vs. temodor via iv through inpatient (only way insurance would approve it). Nick will be on the new stuff for five days this week, along with irinotecan for five days this week and five days next week.

Poor Dr. Gouw broke his ankle last week, so he is now zipping around the hospital on a scooter. He has also been busy learning about other phase 1 trials; one at Sloan Kettering and another locally. Interesting stuff. I'm very glad he is investigating everything; there is so much up and coming in new treatment. Next set of scans are February 22nd with round #27 starting on the 23rd.

One interesting observation: there was a patient sitting next to Nick - a man in his early 30's, waiting to get a bag of platelets. The nurse was trying (and succeeding)to be compassionate, listening to his problems - and there were a lot - mentally, physically, financially. Yes, he has troubles of biblical proportion, but he also has a negative attitude to match. Finally, he just shut down and quit talking. His energy was palpable and we were all silently glad he didn't have anything more to say. Yet, three chairs down on the other side was one of our favorite patients - all of us love this guy! Same age as the first man, same insurmountable obstacle with the monster of cancer, but he can get the entire medical staff roaring with laughter regaling his tales of naughty behaviour in the xray room, or handing out candy and visiting one-on-one with EACH patient in the waiting room - actually making eye contact and sincerely interested in everyone he talks to, while waiting for his next appointment. He was there today visiting someone else getting treatment, while he dragged his iv pole along behind him with his own chemo bags hanging. Everyone on the entire floor knows his name; everyone asks about him; everyone prays for him.

I once had a friend who posed a question to her pastor about God's mercy and his reply was, "Mercy is for those who need it, not always for those we feel deserve it." I thought of this quote as I realized the first man sitting next to Nick really needed our mercy to help his troubled soul, while the second man, although his own mortality is questionable too, has a very strong and blessed soul. For me, it isn't always easy to pray for someone with impactful, negative energy, but perhaps it is the most important prayer to offer. I also think the second man's outpouring towards others is what made a difference in his attitude and strength. So, I have two special prayers to say tonight.

Hmm, must be in a philosophical mood today. Nick is doing quite well, by the way - gained 3 lbs since last round.

That's it for now... we're looking forward to the Super Bowl game - go Packers!
Thanks to all for the prayers, it makes such a difference!

Love Lori

Kind of quiet...

2011-01-26T11:49:00.003-07:00

This week and last have been quiet - nice! Nick is either snuggled up in his bed reading the "Hunger Games" trilogy or out the door to Wendover with the guys, Logan with the girls and now in Vegas with his dad. His blood counts remained good and he tried to drain more of his tummy, but 1/2 liter - so chemo is still working.

Next week he starts another round, but we are having trouble getting one of the chemo treatments approved. Conversations went as follows: "It's approved and will be mailed today"... "Oops, we have to get pre-authorization first"... "Denied." Insurance has denied the pill form for out-patient but will approve it for in-patient, through an iv. Cost saving at it's finest hour. Our master of cutting through the red tape nurse, Katie, is on the warpath (in a nice way, of course). She is creative so we'll see what happens.

We got a new scanner at home and I've been going through old photo albums and can't help but post these pictures of Nick - they make me smile.

I'll update more next week. Thanks for checking in...

Lori

Happy 22nd Birthday, Nick!!!!!

2011-01-17T09:03:00.004-07:00

Today is a great day!

Last week, Nick sailed through the rest of his treatment with his blood pressure and pulse maintaining a "picture of perfect health", says Nick. He celebrated his final day of treatment (for this round, anyway) on Friday by attending the Kevin Hart performance (he is a comedian) with Kelsey, his friend from Huntsman. Other than getting his car locked in the parking garage ("what sign?), they had a fantastic time.

Saturday was the postponed Brower family holiday party; there is something about being surrounded by children that brings a smile to every one's face, especially Nick. His fatigue started to really kick in yesterday, but didn't stop him from wearing his new cowboy boots his dad bought him for his birthday.

I suspect tonight will be a low-key birthday celebration as his appetite and energy have disappeared. But you know Nick - he has a trip planned for Vegas before he starts his next round in a couple of weeks. We are crossing our fingers that his counts don't drop too low, especially his platelets, which could be worrisome now that he is on blood thinner shots.

Happy birthday, Nick - the last year was memorable in so many ways. You are an amazing young man and we are all very proud of you!

Love Mom

PS: I'm very grateful for a few inspiring people who have touched the lives of some special children. Please visit the websites for their stories:

http://sports.espn.go.com/new-york/nfl/news/story?id=5991920
Mark Sanchez obviously had an angel on his shoulders on Sunday! Go Jets! (yes, spoken from a heartbroken Seahawks fan)

http://www.caringbridge.org/visit/vinnydigerolamo/journal
Visit journal posting dated 1/12/11

http://www.carepages.com/carepages/princessella/updates/
Nick thought this little one was a lucky duck!

You may have to sign in as a guest on the CaringBridge and CarePages sites but worth the effort to read the postings. People really do make a difference!

2011-01-10T11:54:00.003-07:00

Nick started round 25 today, a little concerned with his heart rate again - currently at 100. Looks like the clinical trial we've had our eye on with NCI is a no-go but may have some other options out of Sloan Kettering down the road.

In the meantime, I wanted to share something about Nick. He was asked to write a little story about his trials and "happy endings" for his friend, Makelle, who was giving a talk in church. She included other stories, too. We all went to hear her talk and she delivered it flawlessly. With Nick's permission, here is his portion of her talk:

"Once upon a time, I was a young 18-year-old kid ready to graduate high school when I was was suddenly diagnosed with a rare type of cancer. A cancer that I knew nothing about, and yet it was living inside of me, trying to take my life. A cancer that has forced me to spend three of the past four years of my life in and out of the hospital getting treatments. A total of 24 rounds of chemo, 58 days of radiation, 3 surgeries, and a countless number of nights at the hospital. Through my many visits to the hospital, I was able to see first hand how cancer affects so many people and their families. It soon became clear that I not only wanted to make changes in my life but I also wanted to help others in my situation get through their trials.

My happy ending is not that I have beaten the cancer that I am still fighting to this day. My happy ending is the gratitude and happiness that I get every year when I get to send a check through my foundation to charities of my choice. My happy ending is the emotional and spiritual peace I have found through years of summer camps with other young adults also fighting cancer. My happy ending is that I know I have made a difference and will continue to do so. There is no doubt in my mind that I would not be the same person I am today if it had not been for the trials in my life. They continue to affect me physically, emotionally, and spiritually everyday. "

Amen.

Love Lori & Nick

Home!

2011-01-06T16:34:00.003-07:00

What a crazy 27 hours! Last night, the floor oncologist said Nick would be hooked up to a heart monitor to keep an eye on his heart rate. He also said they would be scanning his legs for more clots, possibly having another "procedure" placing a screen/filter in his legs to stop any clots from passing. I was gone during this conversation.

But by this morning, the heart monitor was never brought in and the scan on his legs was canceled. However, they did schedule an echo for his heart as two different lab result levels came back as high, possibly indicative of heart damage/stress. "I'm sorry, what?" No worries, echo came back just fine and levels were adjusting nicely. We're thinking Nick's heart was busy beating the crap out of the clot, swearing it to never return.

After informing Nick of the complications that he may encounter with the blood thinner (too disgusting to post here), Nick was released by 3:00 p.m. this afternoon, armed with 50 Lovonox injections to continue with on at home, twice a day.

Short stay but he still had quite a few guests stopping by to visit. He is feeling pretty good, eating well and looking forward to watching season two of "The OC" with his best girlfriends tonight.

Thanks, everyone - your prayers kicked in once again and Nick survived a potentially dangerous medical situation. We are all blessed beyond measure and are very humbled.

With love,

Lori & Nick

A new complication

2011-01-05T13:45:00.003-07:00

Monday night, Nick was having significant pain in his back and left shoulder, affecting his left arm, whenever he took a deep a breath or moved in certain positions. Yesterday morning, I sent an email to Nurse Katie letting her know, in case Dr. Gouw wanted to see Nick when we came in for labs. She made arrangements to have Nick seen in Urgent Care instead. Dr. Dunson was great and really took his time, being very thorough. His blood pressure was very low and he was light headed so they juiced him up with a liter of fluids to help with his dehydration. Dr. Dunson thought the back pain was due to the drain tube, which has a tendency to wind itself up behind the diaphragm. However, the pain in the shoulder was confusing, indicative of a blood clot. They do not want to take the drain out as they expect the ascites to return so a CTA (ct scan with angiography) was ordered to check out his blood vessels. Due to his being allergic to ct contrast, scan was ordered for today at 10:00 a.m. and he could get premedicated 13 hours prior.

Sure enough, a blood clot was found in his lower left lung, about in the middle of his two painful areas. He was admitted to our long lost second home on the fourth floor. He will have two blood thinning shots a day in his tummy to ward off any further clots, which could be life threatening. Not sure where the clot came from but apparently this is common with cancer patients. He should only be in hospital for a couple of days. Bad news is that because his cancer is active, he will be on blood thinner shots (Lovanox) while he is on treatment. He will learn to give them to himself by the time he is checked out. He isn't happy about this, the shots sting pretty badly and he will need two a day for awhile.

Another learning opportunity. The nice part is that Dr. Dunson and his nurses were fantastic, very personable and caring. Also we have seen some familiar faces here on the fourth floor, all who care for Nick personally, too.

Lee, Grandma and Grandpa all left this morning before the scan. Carly started school today back in Orem. Todd (Nick's dad) will spend the night with him tonight. Kelsey and I will bring dinner and all his usual overnight stuff - favorite blanket, computer, toothbrush... Nick's cell phone doesn't have reception but the direct line to his room is 801-587-4521. He is pain free but very fatigued; his heart rate is 130. He's bummin that he is feeling so crappy during his "good week".

Stinking cancer...

Lori

...and a happy new year!

2010-12-31T14:26:00.003-07:00

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: http://tiny.cc/r41xd.

Please remember a prayer for two very special Rhabdo Angels. Allen Bowman passed away on Tuesday - www.caringbridge.org/visit/allenbowman and Aiden Binkley - www.caringbridge.org/visit/aidenbinkley. Also, I'm following two particularly cute little ones that could also use some support - Vinny DiGerolamo - http://www.caringbridge.org/visit/vinnydigerolamo and Jordan Gourley - http://www.carepages.com/carepages/JordynGourley/updates. 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,

Lori

All I wish for Christmas is ...

2010-12-23T19:23:00.003-07:00

... 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.

Thanks-

Barbara Syphus
Account Executive/KTVX - ABC4"

So, all those that would like to join us on the 30th, please email and let me know! (lorib@quadrantliving.com). 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,
Lori

Geez...

2010-12-20T20:45:00.003-07:00

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!

Lori

Update, Part II, III, IV ...

2010-12-15T17:33:00.003-07:00

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

Update, Part I

2010-12-13T17:22:00.002-07:00

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

STILL no word!

2010-12-10T21:29:00.002-07:00

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.

Lori

No news yet, but we have pictures!

2010-12-06T12:44:00.006-07:00

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

Laproscopy done!

2010-11-30T14:58:00.002-07:00

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,

Lori

Prayers for a local

2010-11-21T20:56:00.002-07:00

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!

Peace, Hope and Faith

2010-11-19T09:43:00.005-07:00

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,

Lori

Calling All Angels

2010-11-12T15:36:00.003-07:00

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:
http://www.standard.net/topics/organ-transplants/2010/10/14/triple-transplant-needed-20-year-old

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.

Lori

Not so fast...

2010-11-10T16:45:00.002-07:00

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,

Lori

WAHOOOOOOOOOOOOO!

2010-11-03T15:15:00.002-06:00

"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

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

2010-10-25T20:02:00.004-06:00

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!

Lori

In the streets of Philadelphia

2010-10-18T15:08:00.010-06:00

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.

Before...

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!

A few things

2010-10-12T08:06:00.004-06:00

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: http://www.youtube.com/watch?v=zrNzKEMD2Zc). 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!

Another Round Done!

2010-10-05T07:13:00.005-06:00

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,

Lori

My home away from home

2010-09-28T14:53:00.004-06:00

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'

2010-09-20T19:03:00.007-06:00

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

2010-09-15T14:01:00.008-06:00

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

2010-09-12T21:22:00.002-06:00

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

2010-09-09T15:33:00.006-06:00

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

2010-09-06T09:44:00.002-06:00

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

2010-09-04T21:35:00.002-06:00

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...

2010-09-04T07:13:00.003-06:00

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...

2010-09-02T18:41:00.002-06:00

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

The Plan

2010-08-30T12:08:00.002-06:00

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,

Lori

We had fun...

2010-08-28T18:50:00.005-06:00

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,

Lori

Good Things Utah

2010-08-26T09:31:00.002-06:00

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.

Congratulations!"

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 - lorib@quadrantliving.com. 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

We wait... and we live...

2010-08-25T07:42:00.002-06:00

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

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

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

Lori

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

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

PET Scheduled

2010-08-20T14:52:00.004-06:00

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

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

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

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

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

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

With love,

Lori

Dropping "F" Bombs!

2010-08-18T14:09:00.002-06:00

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

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

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

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

Lori

Uh oh...

2010-08-17T12:42:00.005-06:00

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

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

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

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

Until then, we wait...

Lori

3rd Annual Charity Softball Tournament

2010-07-08T09:59:00.003-06:00

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

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

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

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

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

Nick is still doing terrific! Love to all,

Lori

Donations Made Today!

2010-06-22T14:47:00.004-06:00

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

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

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

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

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

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

Love to all,

Lori

We'll miss you, Coach Wooden

2010-06-07T14:32:00.003-06:00

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

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

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

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

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

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

Lori

Ogden Marathon - a ton of fun!

2010-05-19T17:24:00.011-06:00

Oakley, our #1 Wacky!

Cami, Morgan & Kelsey (Kelsey couldn't participte in the 5k due to a softball tournament commitment).

We kicked off the event by attending a spaghetti dinner at the Davis Conference Center in Layton on Friday. Many had to fight with horrendous traffic, including the additional time it took to pick up the participant packets at the race expo in Ogden. With 70 family and friends in attendance, Nick welcomed all by announcing his latest set of scans proved the cancer is still not active (that we can see)! He then presented a video of a 30-minute documentary on four cancer survivors attending a First Descents camp. It elegently portrayed why First Descents is so important to young adult cancer survivors - very impactful. Tee shirts were handed out and we all got excited for the upcoming race.

Saturday morning, the marathoners and half marathoners boarded their assigned busses at 4:45 a.m. The rest of us slackers - 5k participants - boarded our very own rented school bus at a more reasonable hour of 6:00 a.m. Nick had us rolling with laughter as he donned his Buzz Lightyear costume - "To infinity and beyond!"

We all had our silly hats, costumes and very cool looking WACKY tee shirts on, ready to begin our 3.1 mile trek. Please visit http://www.nickswarriors.org/ to view all the pictures and a short video on Nick coming out of the starting gates.

Congrats to:

Marathon:

Ashley Sorenson

Paul Anderson

Ann Leoni

Carlos

Todd Raitt

Heather VanTassell

Lee Brower

Dave Sheffield

Sylvia Do

Pat Do

Half Marathon:

Jill Frey

David Vynerib

Jessica Peterson/Leigh Corbin

5k:

Ginger Balcom

Becky (with Oakley) Brower

Bo Brower

Lori Brower

Denise Cummins

Jerry Gill

Melanie Davis

Cami Griffiths

Deanna Hadley

Beth Holt

Kailey Larsen

Steve Larsen

Cory Love

Alane Macrum

Makelle Macrum

Mason Macrum

Mike Macrum

Morgan Macrum

Jennie Magnesen

Bernadette McGowan

Jon McGowan

Kelly Meacham

Brandon Newby

Carly Raitt

Nick Raitt

Erin Wilkes

We had a few that were genuinely sick with colds, a few under-trained and a few that ran with serious injuries. The weather, however, was perfect. Nick had a few kids that would look at each other when he passed and would say, "Do you know who that is!!!!" One person asked Nick why he didn't finish first, having super powers and all (he sprinted out of the starting gate, only to get a massive side-ache 50 yards later and had to walk the remaining way). Nick responded that his battery pack died. Cory Love (age 21) used Nick's grandpa's bib and as he approached the finish line, the announcer said, "And here comes 68 year-old John Balcom!" Nick's dad, Todd, finished very respectfully in his first marathon - quite a feat! And Nick's stepdad, Lee, despite suffering a dislocated shoulder, partially torn achilles and broken forearm during the past 9 months in training, finished running on a torn labrum in his hip.

I'm still working on the numbers as the pledges keep coming in, but we have raised over $20,000 between both running events! I'm stunned and enormously grateful. Our support system remains to be strong and generous!

While Nick remains to be blessed with no evidence of disease, I am reminded again about the seriousness of our cause. On Friday, a received a phone call from a mother whose son is fighting rhabdo (Nick's age). She is feeling utterly overwhelmed and frightened, not knowing where to turn next. We also are praying with a personal friend - he raised a significant amount of money for Nick's Warriors - whose wife is waiting for final results on a potentially very serious cancer diagnosis. And also on the same day, received another phone call from another personal friend of the family needing the name of a neurosurgeon from Huntsman Cancer Institute. Three new situations and all so deserving of our prayers. Thank you all for joining us, being part of a bigger family, to fight this horrible disease.

Blessings of health to everyone! We have already had our initial meeting for our next event - the WACKY Annual Charity Softball Tournament, on September 10th & 11th, 2010. And here we go!!!!!

With loads of love,

Lori

2010-05-10T17:04:00.004-06:00

2010 Ogden Marathon – Half Marathon – 5K

The time is nearing! Are you ready? Things to remember:

FRIDAY – May 14th

1. Be sure to pick up your race packet at the Runners Expo at Union Station – Wall & 25th Street – between 10:00 a.m. and 8:00 p.m. This will have your bib and timing chip!
2. 5:00 p.m. to 7:00 p.m. – dinner at the Davis Conference Center for Nick’s Warriors at the Davis Conference Center, 1651 N. 700 W. in Layton (adjacent to the Hilton Garden Inn). Nick will give a short presentation on First Descents (30 minute movie). We will hand out the WACKY tee shirts.

SATURDAY – May 15th

1. 5k’ers ONLY! I have made arrangements for a school bus to pick us up at 6:00 a.m. at the Davis Conference Center to take us up to the 5k starting place – Timbermine Restaurant. The bus will also be available to take us from the finish line (downtown Ogden) back to Davis Conference Center later in the morning (time to be determined based on popular demand). We will have juice and bagels for the ride up.
2. Everyone participating in race – please be sure to visit www.ogdenmarathon.com to review the details of the race. There are different starting places for marathoners and half marathoners, but all racers start at 7:00 a.m. sharp!
3. Don’t forget – DRESS WACKY! We will be giving a prize for best WACKY runner and best WACKY supporter!
4. Later in the afternoon, Nick’s dad, Todd, is hosting a barbeque for the Raitt side of the family in Huntsville and the Brower’s will be hosting a barbeque for the out-of-town guests, family and friends at their home in Layton. Very informal and casual – invitation open to everyone.

Forecast indicates beautiful weather!

Please feel free to call me if you have any questions at 801-554-5505 or email lorib@quadrantliving.com.

With love and gratitude,
Lori Brower

Broad Street Run - Stories & Pictures

2010-05-04T11:30:00.008-06:00

Our inagural WACKY event was inspiring and fun! Here's how it began:

Nick and I flew out to Philly Friday morning, after he took his economics final (studied until 4:00 a.m.). When we arrived, we were whisked off for a wonderful dinner at Osteria, hosted by Michael Rouse. Michaels parents, John & Choppy Rouse, came along with Dr. Karen Pape, Michael's sister - Christine, a dear friend of the Rouse family, General Steele, and of course, Lee - who had flown in the day before.

The next morning, we were invited to participate in ESF's TLC event. Nick and I were priveleged to hear several guest speakers, including Lee and General Steele. We also got a glimpse of the amazing energy the top team camp leaders exude in preparing for the upcoming camp season. Off to another dinner for those WACKY runners and cheerleaders from ESF, including a few other friends from Strategic Coach. Nick was presented a giant check for $3,700!!!! representing the money raised for his foundation. A big, fat THANK YOU to Michael Rouse and Dani Mezzino for their hard work organizing this effort and to Michael Barron for his significant fundraising!

Mrs. Rouse is agreeing to participate in next years' event!

Sunday morning, the WACKY's gathered for a big send off and pictures and then to RUN!
Our next WACKY recruit - Batman!

Tony, Lori, Nick, Karen, Dani, Melissa, Austin, Lee & Michael

Michael Rouse - 1:34:17
Karen Fox - 1:39:25
Pet McHale - 1:34:27
Melissa Williams - 1:28:06
Mike Trachtenberg - 2:02:10
Ross Trachtenberg - 1:35:14
Lori Trachtenberg - 1:53:23
Jocylen Trachtenberg -
Bridget -
Lisa Caesar - 2:07:58
Ryan Carney - 1:03:52
Meghan Baker - 1:08:41
Lyndsey Horan - 2:01:03
Lee Brower - 1:35:45
Nicholas Pulos - 1:34:01
Jonathan Trenkle - 1:54:32
Shane Hostetter - 1:41:28
Gina Feliciani - 1:43:28
Elizabeth Becker - 2:25:00
Dani Mezzino - 2:07:32
Polly Medved - 2:36:05
Kristen Medved - 2:36:05
Jen Standen - 2:36:07
Josh Standen - 2:36:07
Tony Childress - 2:08:16
Dan Mcdermott - 1:30:28
Kathryn Mcdermott - 1:20:30
Michael Barron - 1:39:39

WAY TO GO RUNNERS!!!!! We will post the winner of the most WACKY runner and WACKY cheerleader soon!
Lee, Melissa, Austin, Dani & Michael

Unfortunately, Nick got a monster headache and wasn't feeling well at all so we headed to Four Seasons to recoupe with some Tylenol, fruit, gin rummy (he slaughtered me - headache, my foot!) and a nap.

Michael and Lee joined us after the race and by then, Nick was feeling much better and the three guys enjoyed the marvelous brunch offered by the hotel. We were all in slow motion and we barely caught our flight home. The highlight was watching Nick grin ear to ear as he held the giant check in his arms, going through the airport.

Thank you, our WACKY warriors! You have made a difference, truly, and our gratitude and love are forever yours.

Lori

Lee wrote the following story, capturing his experience of the race. Here it is:

Soles versus Souls

Today, May 3rd, was a marvelous day!

So much is thrown at us as we swim through this journey of life. Based upon what we read in the newspapers, hear on the radio, see on the television and discuss around the water cooler, you would have to think that we are swimming in the cesspool of life.

It’s not true. There are those negative, stinky clumps of …well you know… yucky stuff… that do float by. But there is so much that is pure, pristine and downright healthy that we can bathe in every day if we so choose. This is not to say we should do something about the crud. But it is to say that we can be inspired, encouraged and empowered by the unseen good that is always around us.

Yesterday, Lori, Nick and I attended the Broad Street Run in Philadelphia. This is a ten mile run with 30,000 participants. AND, it was also our inaugural WACKY event. Warriors Against Cancer in Kids & Young-adults. Thank you to Michael Rouse and Dani Mezzino--plus all of those amazing WACKY’s from ESF--we couldn’t have done it without you! Also, thank you to my WACKY friends from Strategic Coach- Michael Barron, Tony Childress and Joe Zimmerman. Your support is making a very important difference.

What makes WACKY’s different? They follow the WACKY guidelines:
1) pay it forward through service to others.
2) always have something exciting to look forward to.
3) and have fun!

Tony Childress is an example of a true WACKY. A year ago we ran our first ever marathon/half marathon at the Country Music Marathon in Nashville. It was our first attempt to raise money and awareness for research for young adults living with cancer. Tony fully intended to run the half marathon with his sister, Joella, who was in remission at that time. However, as we moved closer to the marathon date, her sister relapsed and the cancer was becoming more aggressive. At first, she said she couldn’t run, but that she would be there and Tony would push her in a wheel chair. When her doctors told her she couldn’t fly, she and Tony agreed that he would push the wheel chair with a picture of her and he would take a video camera of the run so she could experience it.

Well, Tony showed up with a wheel chair. He hadn’t really trained for the 13.1 mile event. He is a tennis and basketball player—not a runner. He didn’t even have running gear. The night before the run, Tony purchased his first set of running gear. As we stood together prior to the race, Tony told me that maybe he wasn’t prepared physically—however, he was prepared mentally and spiritually. We then prayed together and off we went. Since Tony was running the half and I the full, we only saw each other once on the course. Tony was pushing forward relentlessly. Other runners would come along and ask if they could help. Tony politely refused all such offers, even though his back felt like it was going to break. Tony told me later that he had divided memories of Joella into 13 time-lines and with each new mile, he focused on a different segment of her life. He told me afterward that it was though he had help from above. (The next day, however, he did have to ask two young girls to help him load the wheel chair into his car.)

Fast forward to yesterday - one year later - the hottest, most humid day in the history of the Broad Street Run. About three miles into the race, I saw someone pushing a young lady in a racing wheel chair up a hill. You have seen this kind of chair - they sit very low to the ground. As I neared this pair, I could not believe my eyes. It was Tony!

Déjà vu! Apparently, the young lady had a flat tire and Tony approached her and asked if she needed help. She, at first, said it was too late because she was too far behind the other wheel chair competitors and the runners had overtaken the course. Tony could see her disappointment and told her he would do his best to get her back in the race. Close by was a gas station with a “pay” air pump. With the help of a couple of good Samaritans, Tony got the four quarters needed, filled the tire, patched the valve with chewing gum and they were back in the race in less than five minutes.

It was obvious with a less than fully inflated tire, going up the hills was an extra struggle and there was Tony hunched over running up the hill. I thought he was going to collapse. His face was bright red, veins bulging and obviously exhausted. Several people had passed him offering words of encouragement obviously believing they were a pair. For several miles he had been encouraging her and pushing her along as needed. Michael Rouse quickly took over for him and I stayed with Tony to make sure he was all right. As I accompanied Tony to the water, he whispered that the young woman in the wheel chair was the reason God wanted him to be here.

I later caught up with Michael and he, along with a couple of other racers, accompanied this young lady to the finish. Tony finished the race in a fairly good time. Considering the conditions and the weather, this was an amazing accomplishment.

Thank you, Tony and Michael. Thank you for being aware. Thank you for your courage. Thank you for being present. Thank you for not passing up opportunities to “give forward”. Thank you for inspiring me to focus more on the present and the opportunities around me. Thank you for in some small way making others better—including me. Thank you for being WACKY!

Lee Brower

And the Philly Wackys are off and running!

2010-04-29T22:00:00.002-06:00

Well, almost - reposted email dated today:

Hello WACKY friends!

I hope this finds everyone well and SUPER excited for the race this weekend! It is amazing how quick time goes and I know that we are ALL ready to go! The email below contains A LOT of information, please review and print so you have all you need for race day and for the WACKY TEAM!! It’s been an honor getting to know all of you and being on this team! Nick arrives on Saturday and looks forward to meeting everyone too!

Race Packets:
Please make sure to pick up your race packets on Friday or Saturday. It is suppose to be BONKERS so get there early. Those of you that I am picking up I will be going at 11am tomorrow! Don’t forget to have safety pins to pin your BIB number on your front that morning. The shoe chip gets put around your laces (for first time runners!)

Dinner Saturday NIGHT:
We will be having our pasta dinner at Primavera’s Pizza Kitchen Saturday, May 1st at 630pm. If you have not RSVP’ed, please let me know.
Primavera Pizza Kitchen
www.primaverapk.com
7 East Lancaster Avenue
Ardmore - (610) 642-8000

Meeting Place for START and FINISH:
Getting to the start and back from the finish is up to each of us. It will not be easy but the Broad Street Recommends the following:
Due to the limited amount of parking in the start area, we recommend that runners park their cars for free near the finish area (at the Stadium Complex at Broad & Pattison) and take the Broad Street Line to the start.
To get to the starting line, ride SEPTA for free. ALL RUNNERS CAN RIDE SEPTA'S BROAD STREET SUBWAY LINE FOR FREE by displaying your official race number to the cashier at any Broad Street Line stop. You must be wearing the number on the front of your shirt. Shuttle buses will return you from the finish area back to the parking areas.
It is in your best interest to board the train before 6:30 AM (This should get you to the start area at approximately 7:45 AM). Please allow yourself extra time for any unfortunate delays. The race will begin promptly at 8:30 AM. Schedule times may vary. It takes approximately 35 minutes to reach the SEPTA Broad & Olney Transportation Center, which is a few blocks above the start. SEPTA will also be providing express trains on the morning of the race.
Karen and I scoped out the race the other day and we will meeting at the following places. At the start we will have Brightly Colored balloons and meet at 745AM! We will not have cell phones. At the end, you are welcomed to cheer people on as they come in…however we will also be meeting to celebrate with each other at the statue below. It will also be a good point for family and friends to find you. If you finish early and want to head out that is fine too. We would love to get a final end race picture though! Hopefully they’ll be someone to take a start one too!

We’ll all try to run on the RIGHT side of BROAD ST. (GOING DOWN) if you want to pass on to friends and family of where to stand when cheering. At the beginning, City Hall, and at the End are the best points. Make sure they know to look for the WACKY logo!!

Starting Point 7:45AM:
15th and Somerville Ave (right in front of Girls High Football field)
Look for ESF “A” frame with balloons brightly colored
On the RIGHT if you are looking DOWN Somerville at 15th. One block off of Broad and Up from Olney

End Point (as everyone comes in):
4700 South Broad (in Naval Yard complex) ADDRESS ON BUILDING
Meet in front of Melville Statue ON RIGHT which is directly next to a HUGE naval ship

Shirts:
Shirts….look great and will deliver LATE tomorrow at the ESF Headquarters. They can be picked up here late in the day, at TLC on Saturday, or at the dinner on Saturday night. I will NOT have shirts on Sunday with me! Don’t forget to bring your WACKY attire too…the crazier the better! Wigs, crazy socks, hats, you name it…you can wear it!

Donations:
We are doing Great! ESF has agreed to match all that has been donated by end of day today, so make sure to let Karen know if you are bringing it to TLC or the dinner. We’ll want to include it in our total amount. We’ll present the check that night at the dinner. Her email, is Kfox@esfcamps.com she’ll add you in if you email her by 5 with the amount! Remember we asked for $20 to run on our team and then if you chose to raise or put in more.

WACKY Runners: Some chickened out but the rest remain…Drum Roll….
Michael Rouse Mary Franco Ross T. Maureen Fox
Karen Fox Melissa Williams Jocylen T. Ryan Carney
Pete McHale Mike T. Lisa Caesar Meghan Baker
Lyndsey Horan Lori T. Dani Mezzino Tony Childress
Lee Brower Bridget Polly Medved Dan Mcdermott
Nicholas Pulos Mike Morris Kristen Medved Kathryn Mcdermott
Jonathan Trenkle Gina Feliciani Jen Stayden Michael Barron
Shane Hostetter Elizabeth Becker Josh Stayden Joe Zimmerman

Last Minute:
Don’t forget to hydrate ALL day on Saturday and up to 2 hours before the race! See Hal Higdon site for nutritional and hydration tips.

http://www.halhigdon.com/Articles/Diet.htm

My cell is 610-496-4994 for any last minute questions!

Good Luck! I am so exciting to be on this team and this journey with all of you!

Smiles and a HUGE good luck HUG,
Dani 

Danielle Mezzino
ESF Dream Camp Philadelphia
750 E. Haverford Rd.
Bryn Mawr, PA 19010
610-581-0100, ext. 215
610-496-4994 (Cell)
dmezzino@esfdreamcamp.org

What is Rhabdomyosarcoma?

2010-04-27T12:45:00.002-06:00

We have had a few newbies join the rhabdo-list (online support group) and this question has come up. One of the supporters, James Atkinson, is particularly knowledgable and explained it as follows:

Alveolar Rhabdomyosarcoma exhibits genetic translocations either between t(2;13)(q35;q14) or t(1;13)(p36;q14).

The former generates the fusion gene PAX3 -FOX01, which account for around 60% of ARMS cases.

The latter generates the fusion gene PAX7 - FOXO1, which account for around 20% of ARMS cases.

The protein generated by these fusion genes is unique in the body and might end up providing a target for future vaccine therapies.

Embryonal Rhabdomyosarcoma does not have recurrent structural chromosome rearrangements, but rather has frequent chromosome gains and losses. In addition, ERMS has a much higher frequency of loss of one of the two alleles of many chromosome 11 loci, particularly in the 11p15.5 region.

source: http://atlasgeneticsoncology.org/Tumors/rhab5004.html

These genetic abnormalities occur in the cells themselves, presumably in immature muscle cells -- rhabdomyoblasts -- that have not yet matured into 'real' muscle cells. Under the microscope, rhabdomyosarcoma cells can resemble fetal muscle cells.

These genetic abnormalities are *not* part of the genome and cannot (so far as we know) be passed from parent to offspring. Children likely are not born with a predisposition to rhabdomyosarcoma unless they have some other genetic condition, like P53 knockout, that can lead to tumor development.
Rhabdo genetic errors very likely are just accidents.

I note in passing that the rhabdomyoblast theory does not account for adults like my wife who acquired rhabdomyosarcoma in adulthood, when presumably all rhabdomyoblasts have matured. There is a school of research that suggests that mature muscle cells can revert to immature blasts under as-yet-unknown conditions.

If researchers can figure out that precise mechanism, we should understand RMS genesis for most patients much better...and be able to craft new treatments to leverage that new understanding.

When prompted to restate in a manner that an 87-year old grandfather could understand, James posted again with:

Twitter version: Two genes get transposed in muscle cells. Bad things happen.

As I've mentioned before, alveolar rhabdo (ARMS) is more agressive than embryonal (ERMS).

And there ya go.

Lori

Fundraising

2010-04-23T10:45:00.003-06:00

As we are in full swing preparing for the Philly Broad Street Run on May 2nd and the Ogden Marathon on May 15th, I feel it is important to emphasize as to WHY we are raising money. The following link - http://bit.ly/dhAwjF was written by Mary Sorens about funding for childhood cancers and advocating sarcoma-specific research and services. This is very informative and validates our efforts in support of CureSearch.

On another note,the following editorial -
http://www.svherald.com/content/pat-wick/2010/02/26/easier-said-done-relay-life-crawls-along
- discusses some startling facts about the American Cancer Society. I am very disappointed in the facts stated here, however Relay for Life was one of the best experiences I have had relating to ALL cancers. Last year we did not raise money for the event itself, with the exception of the luminary bags. I would partipate again based soley on the luminary ceremony - a very tender, emotional tribute to EVERYONE associated with cancer in EVERY situation - those that have passed, those newly diagnosed, those still fighting, those who are caregivers, those that support.

We dedicate our fundraisers specifically for CureSearch and First Descents, but I feel the Relay for Life allows me to embrace the emotional bond we all have with cancer. Someday, maybe we can incorporate our own event combining all intentions. Someday, maybe cancer will be eradicated and fundraising won't be necessary.

Love Lori

Wacky

2010-04-08T15:29:00.014-06:00

It's time to get ! Nick's Warriors are out in full force in two major events:

We believe this event has already sold out. There is a team hosted by ESF Dream Camp out of Bryn Mawr, PA. They are actively training and raising money through pledges (go to http://www.nickswarriors.org/documents/2010BroadStreetRunDonationForm.pdf.) If you have any questions or would like to come and support their effort, please contact Dani Mezzino at ESF Dream Camp, 610-581-0100, ext 215 or email her at dmezzino@esfdreamcamp.org. Lee Brower will be running with the ESF team with Lori Brower and Nick Raitt there to support the effort!

Please go here (http://www.nickswarriors.org/documents/2010_OgdenMarathonRoster.pdf) for the current roster of those participating in the Ogden Marathon, Half Marathon and 5k. There is a column for registering with the Ogden event and another for registering with Nick's Warriors. Donating $30 and registering with Nick's Warriors includes participation in the pre-event dinner on Friday, May 14th from 5:00 p.m. to 7:00 p.m. The dinner will be held at the Hilton Garden Inn (Davis Conference Center) - 762 W. Heritage Park Blvd (1651 N. 700 W.) We will enjoy a carb-filled dinner, show a short movie from First Descents, hand out tee shirts and embrace the reason we are all participating in this event. Please confirm your attendance to the pre-event dinner, if you haven't already, and go here for the Nick's Warriors registration link (http://www.leebrower.com/warriorsregistration/. The marathon and half marathon are sold out; however, there is still room for 5k runners (please go here for Ogden 5K registration link - http://www.getoutandlive.org/index.php/ogden-marathon.

There is still plenty of time to get pledges for donations (go here for pledge form - http://www.nickswarriors.org/documents/2010_OgdenMarathonDonationForm.pdf). Tim Kvech from Maryland has already raised over $5,000!

We are also having a contest for both races to whoever has the ist costume/hat while running! Please be sure to take a picture of your favorite runner and we'll vote after the race!

For those that are interested, the Hilton Garden Inn located in Layton, Utah, has affordable rooms ($79/night) and is centrally located for shopping and restaurants. I have reserved a few rooms under “Empowered Wealth Foundation”, but you'll need to call 801-416-8899 and make your reservations by April 30th. Also, since the majority of us are in the 5K and the starting time is 7:00 a.m., we have made arrangements to have a bus pick us up at the Hilton Garden Inn at 6:00 a.m. We'll provide juice, bagels, etc. for the ride up. We can have the bus take those that want to go back early return to the hotel (time to be determined). Many may wish to go have breakfast near the finish line while we wait for our marathoners to run in!

Ascorbic Acid

2010-04-06T11:08:00.004-06:00

We have done some extensive research on ascorbic acid via iv therapy (massive doses of vitamin c) and Nick has chosen to proceed with this treatment. To quote from a PNAS paper dated September 20, 2005, Vol 102, No. 38 - "Our data show that ascorbic acid selectively killed cancer but not normal cells, using concentrations that could only be achieved by iv administration and conditions that reflect potential clinical use. Ascorbate administered iv is likely to be safe in most patients, with virtually no toxicity compared to most currently available cancer chemotherapy agents." - communicated by J.E. Rall, National Institutes of health, Bethesda, MD, August 2, 2005. Obviously, the written research is extensive, but this gives you the nutshell version. We are fortunate to have a clinic near us that can administer the ascorbate and Nick had his first treatment yesterday. We sat down with the doctor and she review Nick's blood results (before treatment):

Nick is just a little bit low in his red and white cell count; that's ok and expected after the brutal chemo treatment he went through. What she has never seen before is that he has ZERO candida antibodies; usually candida is rampant in patients having undergone chemo and radiation. In addition, his heart is in excellent shape (so the red devil, aka doxorubicin, didn't affect his heart) and there is no indication WHATSOEVER of any hidden inflamation (cancers cells busy munching away at his healthy cells). His albumin levels are perfect (albumin is the protein that covers the cell walls and low levels may indicate cancerous activity). She feels there are no indicators of cancerous activity in Nick's body. He is a healthy, normal 21-year old young man. Had she seen his file and not know his background, she wouldn't have known he ever had cancer. His vitamin d levels are low but he is boosting his body with supplement drops. Between the ascorbic acid (adminstered once a week) and vitamin d drops, he is ramping up his immune system so his own body can keep the cancer cells at bay. She did some other tests and we have a very clear and concise baseline to watch and compare. Now we should be able to spot cancer activity in the very beginning of cell malfunction rather than have to wait for a tumor to be found on a scan.

I am extremely grateful for his decision to be proactive in maintaining his health. Within the past 4 weeks, four rhabdo warriors have earned their angel wings - all young adults! We also lost our dear friend, Lisa, last month. It has been a heartbreaking month to say the least. With this in mind, Nick's Warriors are out in force and will be participating in both the Philadelphia Broad Street Run on May 1st and the Ogden Marathon on May 15th. An annoucement with details will be posted tomorrow.

Please pray for another rhabdo warrior - David Buck (his mom's name is Lori, too). He is also 21 and he and his family could use your support. www.carepages.com/carepages/DavidBuckUpdates/updates

Thank you, everyone! I'm truly on bended knees giving thanks for Nick's miraculous health. Please join Nick's Warriors in our efforts to eradicate cancer and empower young adult cancer survivors!

Lori

Moab and Vail

2010-03-29T13:18:00.004-06:00

Nick here.....

So this past week has been CRAZY. I arrived in Moab Tuesday night and woke up Wednesday morning to clear skies and warm weather. I love that place. I spent the next two days riding horses up the canyon to fix washed out trails and learning how to rope like the real cowboys do. It was a great time and always is when I go there. Its a good thing when you leave Moab walking like an 90 year old man.

My Dad met me in Moab on Friday and we left together on Saturday morning for the First Descents Ball in Vail. FD has this ball once a year to raise money for the program and its their biggest source of income for it. Since it was a hat party I was sure to wear my cowboy hat with my rodeo shirt, boots, jeans, and belt buckle! The Ball took place at the Ritz Carlton in Vail and it sure did live up to the name. It was the nicest ballroom I have ever seen with a GREAT band playing. I was told that last year there were around 250 people who came to the ball, but they were expecting close to 450 this year! So FD is officially starting to take off. The first camp in 2001 only had 15 campers..... they expect to have 1,000 in one year for 2015. Awesome!

So I spent most of the time talking to past counselors that I know well but did not see one fellow camper that I have gone to camp with, which I was surprised. I expected to see a few of them. But I did meet a lot of awesome people that have been to some of the other camps in other locations. All of them with great stories of survival and how FD has changed their lives. Anyways the dinner was great, the auction was great, the people were great, the music was great, it was just all GREAT. I was sad when the party ended. But the good news is that they probably raised around $300,000 that night. One night!!!

I am also in the process of getting a movie premier together of the documentary film about FD which I will most likely be showing at the dinner before the Ogden Marathon as well as the marathon in Philadelphia. So if your going to be at any of those two events this May be prepared to see how amazing this camp really is.

Lastly, I just wanted to thank everyone who has donated to my foundation because I have been reminded yet again how much we really make a difference with our efforts. Also I want to thank Brad Ludden for all he does and for getting the whole FD program where it is today.

Thanks everyone!!

Love,

Nick (Nickname)

Going Great!

2010-03-24T12:20:00.007-06:00

Carly, Nick, Lee & Kelsey

Nick has had a great week! Last Wednesday, he went in to sign off on his clinical trial to discontinue treatment. Final results inlcuded a weight of 148.8 - a gain of almost 10 lbs in one month! His blood tests came back a little low - he is anemic - we can certainly work that out!

Grandma, Carly, Kelsey & Nick

We went to Spokane to watch the NCAA tournament and got to see the Maryland vs. Michigan State game - fantastic! We were only able to see the 1st half of the Purdue vs. Texas A&M game (which went into overtime) because we had to catch our flight home. We had some quality time with our extended family there, too.

He took off yesterday for Moab to have some cowboy time during his spring break, sporting his first pair of new cowboy boots. Then he's off to First Descents Ball on Saturday in Vail.

We are in full swing introducing WACKY - Warriors Against Cancer in Kids and Young-adults. This is the fun marketing side to Nick's Warriors. It is our intent to have WACKY represented at all of our fundraising events. The Broad Street Run in Philadelphia is our next event on May 2nd, followed by the Ogden Marathon on May 15th. I will be posting additional information within the next couple of weeks.

For all of those that continue to pray for Nick, please take a moment to acknowledge His grace in answering our prayers with blessing Nick with good health. Celebrate!

Love Lori

Sometimes it takes someone on the outside looking in...

2010-03-09T12:39:00.004-07:00

"No Evidence of Disease" is a funny space to live in. When you have an actual tumor or markers, you are actively and aggressively fighting cancer with various treatments. When there isn't anything to see or define active cancer in your body and treatment has stopped, you aren't technically in "remission" and can't consider your self "clear" until after 5 years of clean scans. So where do you fit in? What is going on in your body that you can't see? Why is the fatigue still so strong? What is normal?

I'm sure these are the feelings Nick has been experiencing this past month. I really can only be so empathetic as he is the only one really experiencing this journey. As his mom, I continue to encourage him to embrace whatever sense of normalcy he can, on whatever level. It wasn't until we had a visitor, Thomas, from back east, that gave us a brilliant perspective.

Thomas continued to dominate the dinner conversation his first evening here, when he stopped to look at Nick and proclaim, "The cancer card is over. Go get a job. Go apply for an internship. Do SOMETHING and start contributing to YOUR future!" Nick stumbled in his reply, stating his has BIG plans for the summer, all involving kayaking. But Thomas wouldn't let it go. "What else are you interested in? What classes are you taking in college?" He applauded Nick's commitment to First Descents and his being a counselor this summer. But what else? He gave Nick much to think about.

When we all came home from work the following evening, Nick announced he had an interview set up with the Utah Grizzlies (Salt Lake City's minor league hockey team) for an internship. Nick would be able to earn college credits and apply his efforts in his business major, if he was selected, in an area Nick loved - hockey! Nick's interview was yesterday afternoon. It last about 30 seconds since Nick is already on a first name basis with the director of PR. It consisted of, "So, Nick - what do you want to do and can you start Friday?"
Sometimes you need to hear "Get off the couch!" from someone other than Mom and Dad. Thank you, Thomas!

Upcoming events:
March 19th & 21st - NCAA men's basketball tournament in Spokane, WA
March 23rd - 26th - Moab, UT for spring break
March 27th - Vail, CO for First Descents Ball
April 16th - 18th - Moab, UT for weekend fun
May 2nd - Philadelphia, PA for the Broad Street 10 Mile Run
May 15th - Ogden, UT for the Ogden Marathon

I also received a phone call with excellent news! The Salt Lake County Parks & Recreation have committed to 8 (maybe 12) softball fields and field crew for our 3rd annual charity softball tournament on September 10th & 11th. Not only that, they will handle all the on-line registration as well!

Things are going great! We'll have more to follow!

With love,
Lori

Check it out!

2010-03-03T07:45:00.002-07:00

Latest press release - be patient, it takes a few minutes to download:

http://en.tackfilm.se/?id=1267589697987RA23

Enjoy!

Lori

Clear!

2010-02-17T16:05:00.003-07:00

"There is no evidence of local mass recurrence or metastatic disease in the abdomen." Are those the most beautiful words you have ever heard in your life? The report also used the word "normal" three times, "status" twice and "unremarkable" once. Truly brilliant!

It wouldn't be fun unless we added a "however..." Nick has lost another pound, was given a script for antibiotics for his nasty chest cough and has "a small amount of perinephric fluid" which translates to fluid near his kidney, which is near his pancreas - or where his pancreas used to be. Weird, but not worrisome. They'll keep an eye on it for comparison when they do the next set of scans ......... IN MAY!

Nick has opted to discontinue his participation in the clinical trial, and has his doctors blessings. They told him to get healthy and fat. He should start to feel better soon, since he stopped taking the maintenance chemo pills on Feb 5th. I think this is where his fatigue was coming from and now he can just focus on being 21!

Thank you, everyone, for the continued prayers, support and love. Go ahead and celebrate - we are!

Lori

And the hat is on!

2010-02-14T19:41:00.002-07:00

Nick will have scans on Tuesday and so my worry hat is firmly in place so when I flip out because we ran out of ketchup, no one will be surprised. Nick has settled into a routine of one day up and about and the next day completely wiped out. He is sporadic with the maintenance chemo because the mouth sores are very painful. He attends class only half the time, but is passing economics and acing computer and ceramics.

In other news, our dear friend Lisa Buechler has received some devastating news: her cancer has metasized into her bones throughout her body. She has some very hard decisions to make in the next few days. Jennie, Denise, Ruth and I have been spending all of our extra time at the hospital to help Lisa decifer the various scan results and physician opinions.

Please pray for Nick and Lisa this week. We meet with his doctor on Wednesday afternoon and I'll post again then.

Love to all of you!

Lori

No Worries

2010-01-29T12:36:00.004-07:00

Nick had his check-up last week and the docs determined his tummy aches are due to having a poorly functioning pancreas and no spleen. They gave him a prescription for enzymes to help the pancreas. His low blood counts and fatigue are due to the maintenance chemo - no surprises there. They didn't feel it was necessary to have scans until the regularly scheduled ones mid-February. He also gained ONE POUND!

The trip to Vegas was exciting and fun-filled for Nick and his buddies. Interestingly enough, he didn't give me any photos to post. Hmm. His birthday and Christmas presents finally came in - a kayak vest, skirt, rescue rope and paddle (booties are still on the way) - and he is thrilled. All of his gear has been in our living room for a week now, although I think he is sleeping with his paddle. C'mon spring!

Relay-for-Life kick-off meeting for Davis County is this weekend. Date of Relay is July 30th. I'm also starting to organize our next charity softball tournament to be held in September. So much to do...and looking forward to it all.

Nice little story of a miracle: www.carepages.com/carepages/princessella/updates. Amazing!

With loads of love and gratitude,

Lori

Party Picts

2010-01-18T21:21:00.003-07:00

We had a lovely dinner celebration for Nick's birthday. Here are a few pictures:
The cake was specially ordered from Mrs. Backer's Pastry Shop. I placed the order for a cowboy theme and when they asked me how old the birthday boy was, I laughed as I said, "Twenty-one!"

Jerry (FG Denise's husband), Jennie, Denise, Dean (FG Jennie's husband) and Colin (our favorite cowboy from Moab)

Mom & Nick dig in!

Nick, Carly & Kelsey

Carly is the true party girl!

Lee, Lori, Denise, Kelsey, Jennie, Nick, Colin, Dean, Carly & Jerry, in front.

It's a good time when you know family and friends are one in the same. I love our family!

With loads of love,

Lori

Happy 21st Birthday, Nick!

2010-01-17T08:05:00.002-07:00

Today is Nick's 21st birthday and we are all ready to celebrate! Family and a few close friends will take him out to dinner tonight - he's requested crab legs - that oughta put a few pounds on him (ok, on me).

He had a fantastic time in California although he came home feeling poorly with a headache and stomach ache. He plowed through his first week of being back to college; loving every minute while fighting through the waves of fatigue. He is absolutely thrilled to be back in the college environment; pretty girls, funny guys, books, the library, pizza, hanging out, all of it!

The maintenance chemo is beginning to have its side effects. He has his next appointment next Wednesday and I'm thankful as I'm worried, as mom's often do. I made about 4 different casserole recipes loaded with calories and froze them in individual servings to help Nick eat quickly and often.

He and his entourage leave on Friday for LAS VEGAS! And the celebration continues...

Happy birthday, my baby boy!

Love, Mom

Can't gain weight? What's up with that?

2010-01-05T15:28:00.003-07:00

Turkey, butter, mashed potatoes, butter, gravy, stuffing, butter, pie, whipping cream, whole milk, pot roast, rolls, butter, fresh cracked crab, butter, pancakes, butter, hash browns, bacon, toast, butter, cookies, ham, Hershey Kisses, marshmallow fudge, butter, carmel popcorn, Mountain Dew, butter, and the ever present Christmas tradition - coconut bread - all to which every member of our family gained a minimum of 5 lbs with the exception of Nick. He lost 3 lbs weighing in at 139. Where, I ask you, is the justice in this world?

I remember when I was pregnant with Nick and I couldn't gain weight for the first 5 months. My doctor finally threatened me with big words so I made a sacrifice and dived into a diet of chili-cheese fries and root beer floats. Apparently I am going to have to make this same sacrifice in order to put some pounds on, as Jay Paterson refers to, my skinny kid.

I recently took Kelsey and a friend of hers - Maddie, out for some Christmas shopping. When we stopped for lunch, Maddie had completely downed her entire Subway sandwich, chips and drink while we were still getting the paper off our straws. Kelsey and Maddie are, at the most, each 100 lbs soaking wet - rail thin. When I asked Maddie how she managed such a feat, she raised her right hand, index finger pointing up and proudly proclaimed, "Yes, I am the number one chub scout!" My New Year's resolution is to make Nick the number one chub scout - move over, Maddie, here comes Nick!

Nick believes he is receiving the real deal and not the placebo as he is experiencing some mouth soreness. He feels pretty dang good and has been doing some skiing, hockey playing and socializing. For whatever reason, his improved health hasn't affecting the cleanliness of his room or laundry capabilities. Obviously cooking for himself hasn't manifested, either.

He just received word today he can be a camp counselor for First Descents this summer! Wahoo! He is leaving for tomorrow to visit his cousin in California - nice escape from our winter wonderland here in Utah.

Happy New Year to one and all!

Lori

Zachary Donald McCulloch

2009-12-30T15:51:00.002-07:00

It is with mixed emotions to let everyone know that Zach McCulloch has been freed from the horror of cancer and has gracefully and lovingly earned his angel wings to fly home again. Please visit www.carepages/sublimelbc/updates to read a beautiful poem written by his father, Kevin. The McCulloch family has shown an amazing ability to love and learn through their journey and together have stayed strong in their love for each other and in their faith. My admiration and respect for them is immeasurable.

As for the family of Ashton Miller, they are touring the wonders of Paris; however, Ashton developed a fever and is experiencing the hospital facilities there, too - not part of their itinerary. Her site is: www.caringbridge.org/visit/ashtonm/journal.

As we celebrate Nick's current health while he is thoroughly enjoying whooping his friends in poker, raking in the quarters (practicing for the upcoming Vegas trip, perhaps?) and on his way to Park City to embrace winter in all her beauty, please take a moment to pray for the McCulloch and Miller families and all whose tender hearts and spirits may need an extra blessing today.

Lori

Clinical Trial Has Begun

2009-12-29T09:23:00.003-07:00

It was nice to have a couple of weeks off from visiting the Huntsman. We all had an especially nice Christmas and we are all enjoying being able to relax and absorb the good vibes all around. Grandpa came to visit for a week and the whole family is going to take to the slopes on New Years Day. Throw in a couple of trips to the movie theaters heaped on by boat loads of food and 2010 is off to a great start.

We visited Dr. Gouw yesterday and Nick was given his new prescription of maintenance chemo/or placebo pills. He'll take 4 pills per day for 5 days each week. It is very unsettling when we are instructed to use gloves when popping the pills out of the packet. He had a baseline EKG along with the numerous vials of blood draws. And here we go...

His hair is barely coming back in - it's that nice, fine baby hair that is so soft. I'm sure I annoy him because I love to rub his head now. He let me know that he is losing his sight in his right eye - very blurry. It is not unusual to get cataracts after radiation. This is not alarming (well, not now) and he'll eventually have to have surgery to remove the cataracts. But right now, he'd like to keep an arms length from having do go under the knife.

Plenty to keep us busy for the next couple of months. Nick will have about 3 more check-ins with the trial coordinator, giving up more blood, and will have an MRI mid-February. Until then, Happy New Year to you all. As always, your constant support and prayers are always so very much appreciated.

With love,

Lori

And it's outta here!

2009-12-16T19:36:00.006-07:00

Today at 1:00 p.m. Nick successfully had his port removed for the second time. However, even with two valium, he said it is one of the most uncomfortable, disgusting procedures you can imagine without being under sedation. Stitches look good, pain is minimal and he is good to go. We also met with Dr. Gouw and the clinical trial coordinator and Nick will begin his experimental daily maintenance chemo (or placebo) pill on Dec 28th. Interestingly enough, Nick just barely made it into the trial; it closed accepting any new entries on Friday.

He buzzed his head so he can begin the regrowth nice and neat. Last night, for whatever reason, Nick and his buddies were sitting just outside his bedroom on the floor in the hall - I guess sometimes you just gotta plop where you are and hang out. This was before the valium, too. Kory, Scooter, Kyler, Nick & Rob

On another note, the entourage of my friends descended upon Lisa last night to offer some Christmas cheer. Fairy godmothers Jennie & Denise along with Ruth and myself brought in dinner and loads of presents and spent a wonderful evening at Lisa's apartment. Lisa had it decorated so nicely, with candles burning - the atmosphere was perfect. We laughed and shared stories; I hope Lisa enjoyed the night as much as we all did. Her last radiation treatment is on Christmas Eve and then she'll gear up for 3 rounds of in-patient chemo. She is a true warrior! Here's her site again: http://www.caringbridge.org/visit/ihavewhat Ruth, Lori, Denise & Jennie

Also, for a great story of people reaching out to help someone, check in again on Ashton Miller's site, http://www.caringbridge.org/visit/ashtonm. She has recently made out her "bucket list" and through the generosity of others, she and her family are going on a dream vacation to France.

This week is going to be full of gatherings with family and friends. May you all be blessed with His spirit and grace as you enjoy this season of love.

Lori

AP23573

2009-12-07T14:29:00.002-07:00

Nick and I met with Dr. Gouw and his entourage this morning and he graciously accepted Nick's decision to stop any further chemo treatments. He is delighted in the results of Nick's scans, as are we! He did, however, encourage Nick to consider Ariad's clinical trial (AP23573) for maintenance chemo, which Nick did qualify for, after verifying the exact specifications. He was clear to point out that this trial is not curative, only slows down recurrence as Nick's risk is still very high. Nick will take one pill a day, 5 days a week. If he really receives the drug and not the placebo, the side affects should be minimum. Nick said the deal breaker would be if he could grow his hair back or not, and they assured him he would. Basically, since Nick is being carefully observed anyway, why not participate in the trial? He can back out at any time. The only difference is that he'll get scans every two months instead of three. The sobering statement was said when Nick asked how long he is to take the pill and the response was, "until your disease progresses." Oh. He will begin this trial in a couple of weeks and he gets his port out on the 16th - he will be one happy kid!

We acknowledge your power of prayer, yet again, in humble gratitude. Answered prayers of healing, prayers of strength, prayers of comfort and prayers of faith. We've been very blessed by His grace and light, and blessed by the enormous support of our friends and family.

As Nick embraces his second miracle of health, we would like to extend our prayers for:
Joella Elizabeth Childress Carlyon - http://www.caringbridge.org/nc/joella/;
Lisa Buechler - http://www.caringbridge.org/visit/ihavewhat
Zachary McCulloch - http://www.carepages.com/carepages/SublimeLBC/
Ashton Miller - http://www.caringbridge.org/visit/ashtonm

It was Ashton's mom who posed the question, "How do you balance the reality of this disease with hope?" when a very wise man, whose own wife lost her battle with rhabdo responded, "It is impossible to balance what you know about this disease with hope. Forget balance. There can only be hope. Period." I love that answer and he changed my perspective back to where it needs to be. Some might think it is easier to do when we can't find any cancer growing in Nick, but let me assure you, it isn't. We may have to adjust what we hope for, but we must never, never lose hope.

Thank you all,

Lori