Sunday, December 30, 2007

PET Scan Results

Nick had his PET scan done on Friday afternoon - took 3 hours to complete. The radiation department stayed late to help me get 2 sets of cd's made and I was able to get a copy of the scan to both NY & Boston hospitals via Fed X. I received the report and here is how I read the results (this is similar to reading ancient Hebrew):

There is an increase in activity in the original tumor site. When diagnosed in April, the activity level was 10.7 (critical); in August, it went down to 1.6; Friday it is 5.2. I wasn't able to tell what the size of the tumor is, tho. Good news is that the lymph node activity dropped from 3 in August to 2.5 and there are no other traces in his body - YAY!

I have a call into his oncologist here in SLC so she can really tell me what the scan results really mean. I'm assuming we will have surgery. I don't think I'll hear back from NY & Boston until later in the week.

More to follow.

Lori (Mom)

Friday, December 28, 2007

3rd Opinion Results

Nick, Lee & I took off in the afternoon of the 26th; plane late due to snow in SLC and we finally arrived in our hotel room at 2:00 a.m. The hotel wasn't too bad - it is specifically designed to accommodate families visiting the medical neighborhood. Nick's bed was particularly funny; he unfolded the couch and mattress, however, the mattress didn't quite unfold, curling at the top and bottom. He had to sleep diagonally to fit.

We met Dr. Wexler at Sloan-Kettering at 11:30 (our appt time was 9:30). The pediatric floor is amazing - a giant colorful see-through room filled with any toy or game one could possibly think of. A kitchen with a stocked pantry for families, an extremely large waiting room (completely full) with couches and computers. So many children with cancer - infants, toddlers, tweens, young adults - all of them there, with various stages of ongoing treatment.

Dr. Wexler is a highly educated and experienced doctor. He knows rhabdo! He is very caring, yet has a different style of presence. The meeting was actually quite brutal. I have only cried once in a doctors office, when Nick was confirmed to have a malignancy and even then, it wasn't in front of Nick. This meeting made it twice.

Bottom line: Nick absolutely has healthy rhabdo cells in his original tumor site. These cells are showing to be resistant to radiation and chemo. The only way to get rid of them, is surgery. If he doesn't have surgery, the cancer will do what the surgery would do anyway, except with fatal results. There is a possibility the surgeons will not do the surgery if they feel they cannot get all the cancer (clean margins).

Decisions will be made upon the results of Nick's PET scan today (the scan at Huntsman wasn't working last week and we had to postpone). If the scan indicates no or local activity, he recommends surgery, with chemo to battle the invisible cells. If the scan indicates activity outside his original tumor site, there is no need for surgery, as Nick's probability of succumbing to this monster is "astronomically high".

We caught the 5:00 p.m. flight home - exhausted, to say the least.

So the Boston & NY hospitals differ on their recommendation for surgery, however, the Boston drs have not had a chance to review the pathology slides yet, which may be the tipping point (they should have reviewed by end of today). All drs and surgeons will review today's PET scans and regroup to consult and give an official opinion, hopefully by end of next week.

Should we decide on surgery, Nick is leaning towards having it done in Boston. Although the news is very difficult to absorb, we really appreciate the honesty and directness.

We'll keep updated as we are.


Thursday, December 20, 2007

Time adds knowledge

Yesterday, we met with an ENT surgeon from Children's Hospital of Boston and Dr's Albritton and Grier from Dana Farber to obtain a 2nd opinion. All 3 doctors strongly agreed that we should NOT have the surgery. Here is what they explained to us:

1. The number of viable cells were few in number based upon the last pathology report done after Nick's surgery in September. They are not convinced the latest MRI shows tumor progression. Everyone has a mass left after treatment, cured or not.

2. Surgery is going to determine 2 things - one - that there is no cancer in his upper jaw (so why have all this extensive restructure and prosthesis unnecessarily?) or two - there is tumor progression but surgery will not cure Nick. Usually, when a tumor is removed, the surgeon tries to remove a portion around the tumor, including the normal cells around the edges, giving what is called "clean margins". This is almost impossible to do in the head and neck area. If there is new tumor growth, the cancer is considered "systemic" and Nick will be in big trouble. They still feel surgery would not be appropriate now, but would consider alternative chemotherapy concoctions, clinical trials, etc. for treatment.

3. If we still felt surgery was in Nick's best interest, the surgeon would not do nearly as much reconstruction as suggested by our SLC doctors, but an aggressive biopsy; he'd still keep his teeth, the roof of his mouth, etc.

4. Their recommendation is to simply wait a few weeks and then have scans done again. Nick is already scheduled to have another PET tomorrow, which will show any hot spots if there is new cancer growth. We'll then have another MRI/CT done mid-January to compare against both the scans done in Sept and Nov.

The doctors were honest, blunt and very informative. All 3 re-arranged their schedule to accommodate our flight. Sometimes, we have to read between the lines with our SLC doctors, so we very much appreciated the directness. Dana Farber is a fantastic hospital. Where most oncologists may never see a rhabdo case in their entire career, this hospital, as well as the one in New York, has doctors dedicated especially to this childhood disease.

We still will be visiting Sloan-Kettering on the 27th to meet with Dr. Wexler. Not only do we want his opinion, too, but develop a possible relationship with him as he is a rhabdo expert when it comes to alternative chemo treatment, should Nick need it. Dr. Wexler, Dr. Albritton, Dr. Grier and Dr. Chen all are working TOGETHER in Nick's best interest and we could not ask for anything more!

So, there you go! Trip very much worthwhile and extremely informative. For now, no more chemo or surgery, just enjoy life for a few more weeks without worry. Thanks again for all the prayers; obviously we were guided from above to search out alternatives for Nick.

Merry Christmas, everyone!


PS: Nick's email address is:

NY Pictures

M & M World in Times Square
Toy Soldier at Rockefeller Center
Famous Tree
Nick schoolin' his family!
So close! Sid the Kid and Nick only separated by a wall of plastic!
Santa's helpers!

Tuesday, December 18, 2007

Travel Log

Mom here - we got back late last night from a family trip (4 days) for fun to New York. The kids had never been there and with Nick having a break from chemo, I thought it would be a nice treat to see NY at Christmas time.

We went to see the NY Islanders play (our local Utah Grizzlies are the farm team for them)compliments of Adrian Denny from the Grizzlies; our seats were center ice and 8 rows up in the middle section, right behind the visiting team. I specifically wanted this game because none other than the Penguins, and yes, SID the KID Crosby, were there much to Nick's pure delight. It was fantastic to see him put the pieces together that the Penguins were playing. We saw Crosby score, the Penguins won and we saw a marriage proposal. We had a great time riding the subway and train, too.

Then we went and saw the Lion King on Broadway - spectacular! To top off our trip, we all went skating at Rockefeller Center, with the tree lit and Christmas music playing. We'll get some pictures posted soon.

Great time!

Now we are literally on our way to the airport to catch a flight to Boston. We have a meeting with an ENT surgeon at Children's Hospital of Boston at 7:30 a.m. (sheesh!) and then with Dr.'s Albritton and Grier at Dana Farber at 11:30. We fly home tomorrow night with our first official 2nd opinion.

Then, we finally can concentrate on Christmas shopping! Our next trip is back to NY on the 26th for a meeting with Dr. Wexler on the 27th for our second official 2nd opinion.

More to follow later!


Thursday, December 6, 2007

My Week

Nick here....

The past week I have had some fun. I went to a Jazz game with my neighbor, and that was a lot of fun. The Jazz won the Heat and it was a pretty close game. Shaq is huge! Also, I was given 2 tickets from my good friend Jennie, to a local Ultimate Fight held at the Energy Solutions Center. I didn't realize how good the tickets were untill my buddy Joey and I got there. They were VIP seats right next to the cage. It was insane! You could hear the leather smacking the guys face and you could just feel the pure power and force used in the sport. It was a great experience. Thank you Jennie!
Also my best friend Rob came to visit, who lives in Wyoming now because he makes big money working for the mine there. We had a lot of fun and had a lot to talk about. I might drive to visit him next week depending on the date of my PET Scan that I have to take for my visit to New York, where I will meet with a Rhabdomyosarcoma doctor who is supposedly the best out there. We are going to see what he has to say about treatments and surgery as a second oppinion. We will also be going to New York for vacation, where we will get to see the Islanders play (NHL) and a Broadway show. Hopefully we will also have time to go ice skating at the Rockafeller Center.
Well...... I think thats all for now. I hope I haven't left anything out. Ill post more for sure after my trip to Wyoming or my vacation to New York.
Much Love,

Tuesday, December 4, 2007


Many friends and family members have asked how they can donate to help with our (the world’s!) fight against cancer. Your generosity is overwhelming!

My first recommendation would be to support the Huntsman Cancer Institute. They offer several ways to donate, including the ability to designate your donation to support research, patient care or a specific cancer type. Click on the link below (or cut and paste) to view:

Next, I am reprinting excerpts from an email posted from the list co-owner of "Rhabdo-Kids”, Joan Darling. She provided an excellent collection of various entities to support, as well as discussing the overall issues in donating:

On Sun, 16 Sep 2007, a question was presented:
“How can each of us be more effective in raising funds for research and awareness of these diseases?”

Joan responded:
“In my opinion, we are more effective if we combine forces. Although a lot of people would like to focus on research for rhabdo specifically, and that is a good goal, it's a hard sell when only 400 Americans a year get the disease. And research into childhood cancers (and sarcomas) is interdependent to some extent - treatments for rhabdo may evolve from treatments for Ewings sarcoma; Gleevec was developed for a type of leukemia but is used for at least one sarcoma, I could go on.

However, government support for childhood cancer research and sarcoma research is being cut. I don't know that private contributions can come even close to making up the difference, so I would urge everyone to try to get government funding back up.”

Joan provided the following options.

For childhood cancer research:
CureSearch/COG (CureSearch has a research fund dedicated to rhabdo research that was started by Nick, whose mom is a member of this list.)
September is Childhood Cancer Awareness Month
Plan an event

Write to your congressperson asking them to support the Conquer Childhood Cancer Act

Candlelighters has awareness links

Sarcoma Research and Support:
Sarcoma Foundation of America

Sarcoma Alliance

Liddy Shriver Sarcoma Initiative

Rhabdomyosarcoma Researchers working on the underlying biology of rhabdo:
Dr. Frederick Barr
Dr. Timothy Triche
Dr. Timothy Cripe

As we are preparing to go to New York to obtain a second opinion, we also recognize the value of Ronald McDonald House Charities:

Another alternative would be to donate to the foundation we have established at work: The Empowered Wealth Foundation. I would personally make sure your donation would be appropriately applied towards one of the above mentioned charities.

If you have any questions, you are welcome to email me at: Thank you!


Wednesday, November 28, 2007

Good news and bad news...

Today we met with Dr. Sharma, Nick's surgeon. Nick will need to undergo a "partial maxillectomy" as it appears there is a tumor measuring approx 1/2" in the original tumor site and there is bone erosion up and above his last molar. A PET scan isn't going to be done because the suspicious tumor is too small - the results would be inconclusive. We can't do a biopsy because of where it is located. They can't confirm that it is cancerous but all the signs indicate it is.

It will be a 4 hour surgery; Dr. Sharma will make an incision along the line of his nose down to his lip. He will remove 5 teeth (beginning with his eye tooth), 40% of the roof of his mouth, his upper jaw bone and cheek bone. He will also remove some of the inside if his cheek and replace it with skin grafted from his thigh. He will be in the hospital for 3-4 days and will need to be on a feeding tube for a week. The dental specialist will insert a prosthetic that will work just like having dentures (we meet with him on Monday)

Because of the extensive complications, Nick has decided to wait until Jan 3rd to do the surgery. Both his oncologist and surgeon said there is no problem at all in waiting (his counts don't even come up until Dec 10th). Now he has a whole month to get his body strong for the surgery, put on some more weight and get hairy!

The good news? There is absolutely NO indication of the cancer ANYWHERE else, other than the original tumor site and his eye is completely safe.

The fight is long and we have many more treatment choices depending upon the pathology report done on the bone and tissue they will remove. One fight at a time, however, and until Jan 3rd, we are going to enjoy life and the spirit of Christmas.

With gratitude,


Monday, November 26, 2007

2 steps forward, 1 step back

Nick here..

Today some unfortunate news came from my doctors. Based on the scans I had done before my last chemo, they see what looks like to be probable tumor regrowth in my right sinus again. I will have to undergoe some serious surgery soon, which will also require some facial reconstructive surgery.
It really sucks that I have to do this with only one chemo left, thinking I would be done by this Christmas, but hopefully this will just be a little speed bump in my fight and I will be in remission soon. Also, because the surgery will delay my treatments I will not be able to attend the U of U for this coming semester. I guess in a way it will just give me more time to goof off (right mom).
I meet with my surgeon this Wednesday (Nov. 28th) and will know a lot more then about the surgery, how serious, how many more chemos, etc. I then will meet with the reconstructive surgeon on the following Monday. After that I hope to drive up to Wyoming for a couple days and visit my best friend to relax for a while.
Again, I will post more info on Wednesday and am thankful for all that I do have and all the love that everyone has shown through this fight.
Much Love,

p.s. I saw a bald eagle today on my way to my dad's house. It was awesome! I have never seen one in my entire life. So it was kinda cool to see on this unfortunate day.

Friday, November 23, 2007


We began our Thanksgiving a week early and it was scrumptious. However, it started off with an appointment at the urgent care center at the Moran Eye Institute (per Huntsman's recommendation - it is attached to the U of U Hospital) in the morning as Nick had an infection in his right eye. After several tests, it was decided to start back up on 2 different antibiotics and keep a close look on his eye since we were going in for an MRI and CT scan on the following Monday, as well as an appointment with his oncologist. Seemed to work - he responded quite well and his eye was 100% better by Friday morning.

On Monday morning, Nick had both scans done, lab work, appointment with Dr. Chen (who was not worried about his eye) and then nabbed the last bed available at Huntsman. Whew! We received the CT scan results later in evening and it was a little concerning to me.

Tuesday afternoon, we received the MRI results; also concerning. I spoke to Dr. Chen and she told me not to worry, probably post-surgery or radiation change. She had sent the results to Dr. Sharma (Nick's surgeon) for his assessment and will also present to the tumor board next Monday. I sent an email out to the "rhabdo kids" group and heard back from 2 other moms that stated sinus/orbit rhabdo often have positive scans with no cancer - could be anything from residual treatment to snot. Then later that night, Nick's godmothers arrived with Chinese food and a surprise - they came in his room dressed as grapes singing, "I Heard It Through the Grapevine", but with their own lyrics written by Denise herself (a songwriter, who knew?).

Sample of the lyrics:
"Livin your life is what you'd rather do
Now all of the choices are up to you
Courage, strength and lots of prayers
Family and friends are always there.
It's your time to live loud and strong
With your own team to cheer you on
We're so proud that we...
Heard it through the grapevine..."

They also visited Harrison down the hall to the west and Jason (new 19 year old with a rare form of cancer) down the other hall to the east. Nick stayed and visited with Jason and his mom for about a half an hour as they had lots of questions for him. Nice way to end the evening!

Wednesday morning I stopped by Dr. Sharma's office to personally add maternal pressure for him to look at the reports asap. When I returned to the hospital, I received another phone call from Dr. Chen; she had spoken with the radiologist and has decided there is some urgency to the scans after all. She asked if I would get a cd burned of the scans and have them delivered to Dr. Sharma for his review and schedule an appointment with him December 3rd, when Nick's counts have recovered. She still said not to worry yet - still could be nothing, but may need surgery. I personally picked up the scans and hand delivered them to Dr. Sharma's office; due to the holiday, we won't hear from him until Monday, which makes sense anyway since they have to present to the tumor board. This news cast a shadow for the rest of the day. This is a strange space to be in - we don't want to worry yet until we know, but...

Thanksgiving was quiet. We brought up Marie Calendar's turkey feast and watched a football game or two - well, I did, everyone else took a nap.

Just checked Nick out tonight! He is pretty pooped but glad to be home. He needs to get two shots tomorrow - one for his white blood cells and a new one for the red blood cells (I guess they were feeling left out).

We are thankful for so much! We hope everyone's family was blessed this Thanksgiving holiday. I will post again once we hear back from the doctors next week.


Sunday, November 18, 2007

The man, my boy, amazes me...

This may embarrass Nick but that is my maternal right. I want to post a note to acknowledge what a fine, young man Nick has become. It is Sunday night and I'm in awe of what he has accomplished in the past 48 hours. A recap:

Friday night, he attended the Layton High state championship game with friends. Layton lost but what a thrill it was to root for his school.

Saturday morning, 7:30 a.m., he was dressed in full military attire to attend the weekend drill for the Utah National Guard. He came home exhausted having participated in the fitness exercises, with bruises on his back from doing 30 something sit ups on a hard floor and 30 something push ups (chemo memory can't remember the exact count). He did sit out the 10 minute run, but went through everything else. Note: Nick set his own pace - the Guard totally encouraged him to only do what he could and just let them know when he needed to take a break.

Saturday evening, off to watch the Utah Grizzlies play, compliments of Adrian Denny, the Grizzlies PR guy. They won in fantastic effort! Home by 1:00 a.m. - happy, sore and tired but managed to shine his boots for Guards the next morning.

Sunday morning, 7:30 a.m. again off to the weekend drill. At 4:30 p.m., he barely made it through the door before collapsing on the couch with a moan. He was sore from head to toe! He made it through the entire day, only sitting out another long run. The highlight was receiving accolades from his Sergeant Major in front of all the other participants commending him for his heart and effort. He made it and it was very important to him to be there this weekend. Pretty impressive for a healthy man, let alone a man in the midst of a battle with cancer.

I am a little worried he may have overdone it as he has a big day tomorrow - MRI, 2 CT scans, appointment with Dr. Chen and then being admitted into the hospital for another week-long round of chemo. But then I realize his internal fortitude will support his physical strength and he will be just fine. I also realize his internal fortitude has been blessed to him through his faith and his love as well as the unbelievable support from the prayers and positive energy being sent in his behalf. Thank you!


Tuesday, November 6, 2007

Halloween in the hospital

Nick here...

So my 8th round of chemo took place during Halloween and I had a fun time with it. Many friends and family were there on Halloween to give me some company. All of my friends were dressed up and it was fun to dress up with them and have some fun in the hospital.
I am so anxious to be done with my treatments and cant wait to finish 2 more chemos. I am also eager to finally have my Hickman port removed, which is the tube that goes in my chest and is used like an IV, and be able to swim again or at least get completely wet. Also, I start school at the University of Utah in the beginning of January and I cannot wait. I know all of this is just around the corner but time seems to be going by so slowly now that I am so close. Life never goes slower then when you are sick!
I want to thank my friends, Mom, and Grandma for the company during the holiday and the good time.
The "Brokeback Mountain" theme was a little too much for Rob & Joey!
Nick & Savanna
Jay, the nurse had a great costume! The whole gang!
My fairy godmother was from "Happy Feet", complete with tap shoes!

Sunday, October 28, 2007

Man with a cause

Nick here...

I received and email just recently from Dan, who is my cousin, and he sent me a picture of a motorcyle with a "Get Well! Nick+Amy" sticker on it. It turns out the guy riding the bike was racing in the Grand National Finals in GA (WERA national championship). Amy and I (our names) are making it around the country. The guy racing with the sticker on his bike is Dave Rosnot ( and Dan says he is a really good guy. He must be if has my name on it! ha ha. No I can really tell he is a good guy because he races to fight childhood cancer and it is obvious he is doing the most to help out with beating cancer.

I have a cool picture too!

Thanks Dave!

Pink in the Rink

Tonight was my third day straight of awesome memories! Me and about 20 other friends and family attended a Utah Grizzlies hockey game tonight which honored people with breast cancer and raised money to go to the Huntsman Cancer Institute where I will receive chemo tomorrow. Tonights game was called "Pink in the Rink" because the ice is pink to represent breast cancer. The players also wear pink jerseys with ribbons on them, which was pretty cool.

We had dinner with everyone at Chilis before the game, where mostly everyone was wearing the "N.W.R. Cowboy Up" shirts that were made for the cancer walk I did awhile ago.

We then went to the game where we had front row seats right on the glass, which is always fun because you can bang on the glass and yell at the players. And you dont have anyone in front of you blocking your vision. It was cool seeing the players up close, especially since I had met all of them the day before. The guys and I did a lot of trash talking to the other team, which I believe led the Grizzlies to their wonderful win in a shootout. I am so glad I got to see a shootout! I love shootouts!

During the 2nd period intermission, I told my friends I had to go use the restroom and would be back in a second. 5 minutes later they were shocked to see me waving at them from the other side of the glass, because I was riding on the zamboni! They were all jealous and everyone just went wild. The zamboni ride was really cool and I liked showing off my jersey that I have with my name and high school number on it. I also have a pin that says "cancer sucks" that I wore too so hopefully people were able to see that.

It was nice doing some amazing things before I have to go back into the hospital tomorrow for my 8th round of chemo. I want to thank again my Mom for getting all the tickets and people to come to the game. Also for arranging the zamboni ride and meeting with the team. I also want to thank everyone who came to the game and supported me and the Huntsman. Lastly I want to thank the Grizzlies for being really cool guys and playing the best game alive!

Oh yah...... here are some pics

Friday, October 26, 2007

Utah Grizzlies Rock!

Nick here...

So today I drove down with my Grandparents and Mom to the E center where we met up with my good friend Joey (who I played hockey with) and my step-dad Lee. We got there around 10 a.m. and we met with Adrian who is the PR guy. He was really cool and was able to take us into the locker room and show us around to see what its like to be a Grizzlie hockey player. He also told us a story about the whole team going on The Price Is Right show in California, where my favorite player, Eddie Cambell (who no longer plays for the Grizzlies), won the entire showcase.

After checking out the locker room we stood in the team bench on the ice where we watched the team practice. They are so much faster when you watch them in person and it is cool to see how skilled they are. One of the players, Ian Forbes, is 6 feet 7 inches without skates and was a giant on the ice. I would be terrified if I saw him bearing down on me while I was playing hockey.

The team took a break half way through their practice and they sat in the locker room, where the coach who they called "Smurf", gave me a really cool introduction to the team. The entire team clapped and it was a really cool feeling. They then all shook my hand and told me their names (even though I do not remember most of them). Most of the players had humongous hands that made me feel like a little boy again but it was still an honor. The team captain, Travis Rycroft (who is now my favorite player), was a really nice guy and talked to me a little bit. He isn't a big guy like most hockey players but he can sure play the game. They guys gave me an authentic jersey with their signatures on it and I will be wearing it at the game to represent my "awesomeness".

After the awesome moment in the locker room we watched them finish up their practice. While they were finishing up, Joey and I did a lot of talking with the two goalies who were both funny guys. One was from Boston and did a little dance when Joey mentioned the Red Sox. Ha! I then tried to get Adrian to let me and Joey take our skates and goof around a little bit on the ice. But unfortunately the ice needed a lot of work for the game tonight so we weren't able to. However, he said I can come back anytime for another practice and get a little ice time. I will definitely be back soon. So it was a great day and I cant wait for tomorrow night where 26 of us will be going to the "Pink in the Rink" game at the E center. All of our tickets go to the Huntsman and help out with the research and care that goes on there. It will be cool.

Lastly, I want to thank my mom for setting this up, and Adrian for being so cool and making everything happen. It was a really cool experience. I told Adrian I want a job when I am done with treatments.

Well here are some pics.....

Thursday, October 25, 2007

Private Raitt goes flying!

Nick here..

If you didn't already know, I joined the Utah Army National Guard as soon as I turned 18. Unfortunately because of my cancer I was not able to go to boot camp as planned in August. Hopefully I will be able to go this coming summer and be an official soldier in the Army. I cant wait to have a real uniform and be able to work on the Apache helicopter.

Luckily, I have some really cool Sergeants who were able to pull some strings and arrange a helicopter flight in a Blackhawk. They told me anytime I was feeling good enough there would be a chopper waiting for me. So finally the date was set and today I was able to sit in the Blackhawk as would a Crewchief would. It was one of the coolest things I have ever done and cannot wait for my next flight, whenever it might be (since I WILL be a helicopter pilot one day).

The 2 hour training flight started off with some pre-takeoff checks on the chopper, then we flew over to another little Army station and picked up a load that we carried underneath the chopper with a rope and chain to practice maneuvering with a load. The pilots did really good and I was amazed with their skill and precision. We then did some landings on mountain tops and ridges to practice landing with different winds and terrain. But the best part of the whole flight was the open terrain flying, because it involved pretty good speeds and I could not believe the degree of bank in a turn that the Blackhawk was able to do. It was awesome! We would fly pretty low through canyons and it was the coolest feeling. We happened to fly over this cowboy guy who was riding his horse, which I thought to be weird cause I believe we were still over government property, and we tried not to fly directly over him but he still decided to give us the finger. If only there was a 50 caliber mounted in front of me like there can be, I would have made him put his finger away real quick. HA just kidding. He was just jealous.

Well.. I would just like to lastly say that I had one of the coolest days today. And I would like thank Sergeant Sanchez, Sergeant Wilkinson and Captain Fontineau (sp?) for getting the flight arranged for me. It was a day I will never forget. Also, my pilots Scott and Kent who I think have me convinced that becoming a Warrant Officer is the way to go, and Sergeant Haywood (I believe that was his name, if not, I blame the chemo for memory loss) who was the Crewchief and got me all set up for flight. Last but not least, I want to thank my Mom and especially my Grandma for getting this whole thing started. I felt like a KING up there. Those pilots have it made!

Thursday, October 11, 2007

Lend some love!

Nick here...

My 7th round is over and I felt sick mostly yesterday (not sick enough to keep me from riding my dirt bike at my dads house) and have been eating pretty good. I also rode a peddle bike for three and half miles with my dad, (it included to hills!)which in the end I had to sacrifice to lots of water intake and nap. HA. Baby steps should be taken I guess.
The main reason I wanted to post something tonight is because of a man name Harrison Matthews. I just met him recently in the hospital, while I was getting my chemo and so was he. He was recently diagnosed with Acute Lymphoblastic Leukemia and has already spent a MONTH in the hospital and had 2 chemo treatments. He would come over to my room once in a while and we would play video games or just talk about life fighting cancer. I enjoyed being able to talk to him and let him know what to expect and what he can do to prevent or reduce chemo side-effects. Anyways, I recomended that he too start a blog, so that people can see how he is doing and give support without having to call him or his parents all the time. His blog address is:
Take a look at his blog and please post comments on his like you have mine for support, or if you are a cancer fighter/survivor with some advice. It really helps.
Thanks everyone!

Monday, October 8, 2007

Home Sweet Home

Nick was checked out last night and finally back in his own bed. He had a resident doctor try to send him home on Saturday, but fortunately, Nick knows his chemo regimen and debated his treatment. The doctor went to double check and the nurse came back stating, "Ok, the guy is an idiot and you are staying until Sunday, like you said."

One of Nick's fairy godmothers was out of town this round, so one had to carry the load - didn't she do a great job? She came bearing lots of treats and giggles.

His hair looks pretty good - soft, baby hair and he finally shaved his mustache (only grew on one side) and his chinny-chin-chin - BIG DAY! Food is tasting kinda odd to him again but still eating good. He has gained some weight - took his shirt off, flexed, patted his tummy and said, "MOM, aren't I looking GOOD?" Yep!

3 more rounds to go... As always, our hearts are filled with gratitude with the support you all have offered as Nick continues to fight.


Thursday, October 4, 2007

Chemo sucks! It really, really sucks!

Nick here..

I am currently on my 7th round of chemotherapy and will have 3 more cycles after this. I am still eating quite well and weigh about 135.. give or take 2 pounds, depending on the scale.
This round I came prepared for boredom and have my playstation 2 hooked up, video games on my computer, books, ipod, and videos. I invited this new patient down the hall that is 22 and just recently diagnosed with leukemia to come down to my room and we will play some video games or talk about whatever since he seems like he wants to ask me questions on what to expect with the chemo.
Something very unexpected and awesome happened today around 3 p.m. My Mom somehow contacted Utah's semi-pro hockey team, The Grizzlies, and arranged for the mascot, Grizzbee, to stop by my room and say hi. It was crazy! After meeting him and taking pictures we walked around together and visited other patients. Grizbee was making all the nurses laugh and actually made the room service lady quite mad because he had stolen a hamburger of the tray she was delivering to a patient. He was just trying to be funny but she must of had a bad day or something cause she wasn't happy.
Well thats all for now.
Anyone is welcome to visit anytime.

Nurse Mary getting a bear hug!

Tuesday, September 25, 2007

My new bike

Nick here..

I just got back from the road trip to Vegas with my Dad where we met up with my cousin Stuart and picked up my new bike. Boy did it look good! I am so excited to ride it this weekend with my buddies.
Here are some pictures:

September - Childhood Cancer Awareness Month

In order to try to continually learn about Nick's cancer, I subscribe to a listserve comprised of others that have (or had) a child, spouse, grandchild, sibling and friend with rhabdomyosarcoma. This listserve has tremendous value with the immediate sharing capability for anything from general questions, specific concerns, information on clinical trials, helpful hints, platform to vent, advise or comfort and share a unified effort to bring awareness (which brings funding) to this devestating cancer. Sometimes, the emails I receive are simply too much; too heartbreaking, too frustrating, too confusing - I cannot even conceive what some of the children, and parents, are suffering through. Rhabdo is usually diagnosed in young children. It really makes me count my blessings with Nick's response, his attitude, our support, our faith, our love.

There is another listserve that is dedicated to ALL childhood cancers and they have put together a promotional video to support the Conquer Childhood Cancer Act of 2007. I hesitated to post this clip as we try to keep everything very positive on this blog. However, I also feel we have a responsibility to do what we can to raise awareness in every opportunity we encounter. This being said, if you would be willing, please take a few minutes to watch this video.

I'll post more later on how to support funding once I've verified a few more things.


Monday, September 24, 2007

Upcoming Events

Nick came back from California all smiles. He is thoroughly happy with his new motorcycle and has gone to Las Vegas with his dad to meet his cousin (halfway point) so he can pick up his motorcycle and bring it back home tomorrow. He went riding with a couple of his buddies (borrowed a motorcycle) last weekend and he struggled a bit. He thinks the chemo has impaired his balance as he continued to tip the bike over several times. Although he has regained 6 pounds, his 130 lb frame couldn't lift the weight of the bike - a little frustrating.

We went to see Dr. Chen on Thursday and she isn't worried about the residual cancer cells, but Nick will go through an additional 4 rounds of chemo (rather than 2) beginning Oct 1st. He should be finished up the first week in December so he'll be feeling pretty good by Christmas!

Something fun..... I have purchased 20 tickets to the Utah Grizzlies hockey game for Oct 27th. It is the "Pink in the Rink" theme as they will donate 50% of their ticket sales to the Huntsman Cancer Institute. They worked with me and guaranteed that 100% of the proceeds for my tickets purchased will be donated to Huntsman, and also reserved us awesome seats. Nick may or may not be able to attend as he gets out of the hospital on the 26th (I really think he'll make it). It will be fun to don the "Cowboy Up" tee shirts again and go as a group to support Nick and the fight against cancer. Please contact me if you want to go-

Nick is looking fantastic! His eyebrow is growing back ("we'll take care of that!", said Dr. Chen) and he is eating anything he can get his hands on. This has been a great week! Thank you everyone for the continued prayers - it's like watching a miracle before our very eyes.


Friday, September 14, 2007

Lancaster, California

I am having a great time already with my family in the west coast. I am also eating very well and gaining some weight! I have only been here a day and a half and I have already gone to a Dodger game, driven an '08 Nissan Altima (SWEET CAR), played some sweet video games, heard some great stories, bought a motor cycle and gear, and ended the day with a Jamba Juice and a great dinner. It rocks!

Tomorrow I will attend a cancer walk where I hope to share stories with other cancer survivors and fighters. It always helps to hear that others are going through this just as you are. My Aunt Chris bought me a sweet costume for the walk tomorrow to help represent my theme, "Cowboy Up", and I hope it gets a kick out of everyone.

Here are some pictures:

Wednesday, September 12, 2007

Pathology Results

Mom here: Well, we met with the surgeon today and Nick finally got the gauze taken out of his nose - much, much better. However, the pathology report indicates findings of "viable activity" in the tissue removed from Nick last week. The surgeon went on to say Nick will resume at least 2 more rounds of chemo in about 3 weeks. "Any questions?" he asks us. Upon asking him what this means in layman's terms, he responded by saying there are still active cancer cells in the original tumor site. "I realize this, but what does this mean?" The answer is one I think we'll be hearing alot - "I don't know". The tests can determine the tumor to have completely dead tissue, completely active tissue or somewhere in between. Nick is somewhere in between. There is no indication of how many of the cells are cancerous, but obviously not too many as it wasn't picked up on his scans.

Usually, with rhabdo cancer, the surgeon will completely remove all the tumor and area surrounding the tumor. In Nick's case, he was not aggressive in order to preserve Nick's facial bone and muscle structure. There is a fine line he works with in trying to get as much cancerous tissue as possible without compromising Nick and hoping the next 2 chemo treatments finish off the remaining "viable" cells. Nick has been very responsive to the chemo so far so we remain cautiously optimistic. At the end of the next 2 rounds, he'll have scans done again to see if anything has changed. If the remaining cells are resistant to chemo, Nick will be facing some serious, aggressive surgery. If he continues to be responsive, he will have scans every 3 months for the next 2 years. Remission doesn't mean "cured"; it means "I don't know".

We're going to put a positive spin on "I don't know" and he is going to go ahead and enroll at the Univ of Utah for winter semester. There are some terrific cancer scholarships available to Nick, too. I don't know why he can't still go to college...

Enlisting in the Army National Guard and battling cancer isn't enough to worry me with so he has decided to get a motorcycle. He takes off to California tomorrow to spend some time with his Aunt Chris, Uncle Stan and his cousin Stuart where a new bike awaits him. I don't know why he can't go have some fun... He will have a fabulous time!

Eternal gratitude to everyone for their love! I don't know how we would have made it this far without you!


Thursday, September 6, 2007


Mom here...

We met with Nick's surgeon and radiologist yesterday. First, the surgeon discussed the scan results in detail and there is virtually no visible activity in his sinus area and minimal activity in his lymph node. Nick's original PET scan revealed an SUV of 10.5 in his sinus (measurement of cancer activity - i.e. anything over 5 is worrisome and anything over 10 is critical); his current PET revealed NOTHING! The lymph node had an original SUV of 3.8 and is now 3.1 - this could be from anything, like the low-grade fever he had last week. No worries there, either! The surgeon will simply remove as much dead tissue as possible going up through his gum line and removing a small square of cheekbone - this will not damage any nerves in his face or bone/muscle structure.

The radiologist is thrilled with the results and we were walked through viewing the scans side-by-side - truly amazing. She said the fact that his tumor even shrunk at all was incredible, let alone completely gone. We also found out that there have been 5 cases of rhabdomyosarcoma in the past 4 months up at Huntsman. Wow.

Nick's surgery is at 2:15 today at SL Regional. He will come home today and will recover quickly, however will have a pretty swollen face for 2 weeks or so as his cheek has been heavily treated. We still really shouldn't officially celebrate until we get the results back as negative from the tissue they recover. We have an appointment next Wednesday, 12th, to review with the surgeon.

It sounds like Nick won't begin his next round of chemo for another 3-4 weeks. He would just assume getting this over with asap, but we'll take this break to chub him up some more (he is now up to 133 lbs). He tries every day to do something active - we all played tennis a couple of nights ago and he did great! Bowling the night before last! I do believe he can now clean his room, too.

One funny story to share: Carly was groaning after dinner last night that she needed 3x5 cards to help her study for one of her classes and we didn't have any at the house. When we suggested she go to our local Wal-Mart 1/2 mile away to get some, she tried to recruit Kelsey to go with her so she could run in the store for her. Not a chance. Then Carly continued to complain she couldn't possibly go into the store as she was dressed in sweats and her hair was in a pony-tail ("You just don't know who you might run into!"). As she continued to lament about her appearance, Nick finally said, "CARLY! I have ONE eyebrow!" We all roared with laughter as Carly grinned, put on her shoes and quietly took off to the store. Ah, perspective...

We would like to express our sincere appreciation for all of your prayers for Nick's recovery. It is obviously a miracle he is doing so well and we couldn't have made it this far without your support. We're very humbled, indeed.

We'll post again soon,

Love, Lori

Thursday, August 30, 2007


Nick here..

Some of the best news has come to me today. According to both my surgeon (who I believe to be a brilliant man) and my chemo doctor agree that they see no visible tumor activity from both the PET scan and MRI scan that I took yesterday and today. This most likely means that the tumor is dead and is pretty much only scar tissue. So I will have outpatient surgery (procedure will take approximately 2 hours) done on the 6th of September, where they will go up through my gumline (so no visible scars will be on this pretty little face of mine) and take out what they can and send it off to a lab where they will determine under a microscope whether or not they tumor is truly dead or not. IT WILL BE, I KNOW IT. I should recover in 2 weeks and then start chemo again. Now, depending on the lab results, I will either do 2 more chemo rounds, or more if they find cancer activity in the tissue.

I am so happy today and cannot help but smile everywhere I go for no reason. It just goes to show you that if you believe enough you can do anything you want. The doctors told me at the beginning that they predicted a year of treatments.... and I told my dad, "watch, I will be done in 6 months." And if everything goes well it will be 6 months.

Tonight to celebrate I went out with my girlfriend, Rob, and Mandee to the new mall in Ogden. We did some golactic bowling, and just walked around. It was a lot of fun and I wanted to stay out longer, but by 10:30 I was beat and made sure we were home by 11. HA


Wednesday, August 29, 2007

Fun in the Sun

Nick typing...

I just got back from an awesome trip to Dana Point, California with my sisters and mom. It was not only to get out of the house, but Utah as well. I love California and was glad we were able to go. We had to delay the trip a day longer because my blood count was too low, but luckily it was high enough the next day to go. I had to wear a mask at the airport and on the plane just to be safe, even though I hate wearing it.

We stayed at the Marriot which was right next to the ocean.. It was pretty nice! The weather couldn't have been nicer either, so we were constanly at the beach or sitting by the pool. I liked watching the surfers, and decided as soon as I am healthy again and have my port out, I would like to try surfing. I was a little bummed that I could only get my feet wet but knew I didnt have the strength to surf or swim anyways so it wasn't too bad. I read a lot of Harry Potter on the beach and by the pool while we were there. It was very relaxing.

The food was very good at the hotel and I tried to eat a banana split every night to put some weight on my skinny body. However, the last couple of days I had some mouth sores so I was not able to eat too well, and on the last day I had a small fever and didn't feel to well. So we got an earlier flight and left California around 1 instead of 5.

I think after college I wouldn't mind moving out to California and living there. It is a very nice place and I love the ocean. I hope to start college this January and the University of Utah and take a few classes. I am excited for what is coming and cannot wait. This month I may have surgery (which I think is a good sign for it will mean they don't see any activity), I will visit Newport Beach in the end of October, my mom also has 10 tickets front row, center ice, for the Utah Grizzlies game supporting Breast Cancer, and then last but not least I should be in remission sometime in October. CROSS OUR FINGERS

Kelsey & Carly got creamed! I think its WAY funny!

Saturday, August 18, 2007

Feeling good!

Mom here (I'll try to get Nick to post later)...

Nick was checked out of the hospital last night around 6:00 p.m. With the reduced chemo this round, he is feeling pretty good and has kept up his appetite. During this week, he had visitors from:

His swashbuckling, gift-bearing godmothers (they brought him a Marie Calendar chicken pot pie, a pirate hat, dreadlocks on a hat so he had hair on his head for awhile, pirate pj's and miscellenous pirate toys and tattoos!) One of the funniest gifts was a card that said on the front, "When someone asks you how you feel, I don't want you to say, 'Ok' or 'So, so' but... and when you opened the card, it was a recording of James Brown's scream... "Whaaaoooo! I feel good! with the music - it startled most people when they opened the card - brought lots of smiles and of course, Nurse Mary took to go show the doctors.

His mild mannered friend, Rob (who also took a turn spending the night at the hospital;

A few of the guys;

He had the regular entourage of Mom, Lee, his dad and Savanna visiting and bringing him breakfast, lunch & dinner (Nick no longer appreciates the fine dining of the hospital cafeteria). Just as the hair on his head is starting to come back in baby-fine fuzz, he's losing the hair on his legs and his eyebrows. Per Savanna, he only has 35 little hairs remaining on his left eyebrow (there were 36 until she blew on it). He is gaining a little weight and for the first time, didn't require additional fluids or a wheelchair when we went in today for his Neulasta shot! I think we are going to make the trip to California on Friday! His next round of chemo has been temporarily delayed until after Sept 5th - we'll see how the surgeon wants to proceed.

Today has been a great day!

With love,


Tuesday, August 14, 2007

Round 6........ Yeehah

Nick here....

Today is the 2nd day in the hospital for my 6th round of chemotherapy and it has been going good so far. I have been trying to eat as well as I can to prepare for the week after I am out of the hospital where it is hard for me to eat and drink. Last round I lost about 6 pounds in that week but gained back 4 in my good week. I think I am still gaining some now but it is hard to tell since I am on a ton of iv's which make me put on a ton of water weight that I lose as soon as I go home. But my doctor did reduce my chemo this round by 15% so that I hopefully wont lose as much weight and so that I will hopefully recover in time to be able to join my family in our trip to Dana Point, California. I love the beach so I am going to try my hardest to eat and take my meds so that I will be feeling good while I am there.
Just today when my nurse was listening to my heart and lungs (they do it all the time), she said she noticed a little murmor in the beating of my heart. The doctors came in and did the same thing and said it was very subtle and seemed to only slow down a little when I would breathe out. I believe it does this because of my new chemo which my chemo doctor said is harder on the heart than the one it replaced. So now I have all these wires hooked up to my chest and stomach that are held in place by these little sticky pads. I hate it because I have enough wires going into my body as it is. I look like Frankenstein now! The nurse said I should only have the heart monitor thing for a day or two. I personally don't even think it is necessary.
(Mom here for a second... Nick will have a PET scan done on the 29th and another MRI on the 30th. Both scans will be forwarded to Dr. Sharma, the surgeon, to determine whether he will go in and do a biopsy where Nick's tumor was to see if there are any cancer cells still active or if it is just dead tissue. Dr. Chen is going out of town on the 30th so Dr. Sharma will decide to either do a biopsy now or begin round 7 the week of Sept 3rd and not do a biopsy until round 8 is complete. We're a little up in the air for now. I have an appt scheduled with Nick's radiologist to help us read the results of the two scans on Sept 5th.)
The highlights of my good week that I just had are seeing Rush Hour 3, which was pretty good and made me laugh a lot. Also, my Dad took me out to the Larry H. Miller Raceway in Toole where we raced go-carts on an enourmous track outside. These weren't your ordinary go-carts either, for they went close to 40 mph. and could handle really tight corners at high speeds. My Dad and I had the track to ourselves. It should have been a close race between my Dad and I but he doesn't know how to follow instructions and took a wrong turn and had to turn around for it was a dead end. He eventually did catch back up but he couldn't pass me and wouldn't have been able to either. So technically...... I WON!

Wednesday, August 1, 2007

Liddy Shriver Sarcoma Initiative

Hi everyone! Here are a couple more photos taken at the Team Sarcoma Awareness Walk we participated in a couple of weeks ago. These photos were submitted to the international website hosted by the Liddy Shriver Sarcoma Initiative. I promise next year I'll give much more notice and we'll have an even greater presence!

Love, Lori