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