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

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

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

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?

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

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

...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

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

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

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...

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...

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

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

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!

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!

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...

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...

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...

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...

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!

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

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

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

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

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

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

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

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

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

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

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

With love,

Lori

We're going to sleep well tonight!

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

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

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

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

Leadville, Packers & Scans

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

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

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

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

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

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

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

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

AND THEN...

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

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

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

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

Lori & Nick

Rounds 2, 3 & 28

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

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

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

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

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

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

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

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

Love to all - thank you for checking in!

Lori

A good week!

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

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

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

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

Lori

Home again, home again, lickety split!

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

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

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

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

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

With blessings,

Lori