Monday, August 25, 2008


So my first day as a freshman and the University of Utah was today and boy was it a long day. I only had 3 classes but they were spaced out and I rode my bike everywhere. I started off the day with Digital Photo which was cool. Then headed back home and had some lunch. I then rode my bike back to school where I had Calc and Chemistry. Both of them intimidated me for both proffesors said that half of the class will not pass the class. Crap! My chemistry class has over 200 kids in it so that made everyone freak out. But I am still ready for school and happy with my desicion to push myself. Besides I'm not paying for it... ha just kidding Mom and Dad.
Alright I am going to study now.... SIKE

Oh Canada

Nick here..

Last monday I just got back from my first trip out of the country (other than a cruise) to Canada. I landed in Toronto but stayed like 3 hours north in a beautiful place called Owen Sound. I stayed with friends of the family. The Paterson family, who welcomed me with open arms, couldn't wait to get me out on the water. The three cottages that they own are right on the water of Lake Huron. The water was crystal clear and perfect for water skiing, kayaking, fishing, and showering. I did them all!
Other than hanging out by the water all day, there was a folk festival in town called Summerfolk which was all weekend and we had a fun time hanging out there listening to good music and meeting lots of locals.

It was fun meeting everyone and having a blast in the water. I got a lot better on a single ski and give props to the guys who can ski a slalom course.
I came home so tired and so sore from paddling in the kayak so much. I also had gained weight from eating so much delicious food in big portions. ha.
I would like to thank Jay and Ann for the invite and the great time the gave me. Hopefully I will be back again next year and will have just as much fun as I did this year. Thanks!
So long Canada!

Good news!

Katie, Dr. Chen's nurse, called today. Dr. Chen presented Nick's scans to the tumor board this morning and then again to the radiation department. It was stated the bone erosion is most likely due to radiation damage. Dr. Chen is very excited and not too concerned with the MRI. She'll plan on seeing Nick in October for his next set of scans.

As we try not to get to upset with possible "worrisome" news, we also don't get too excited about "probable..." good news. We are still waiting to hear from Boston, although we are breathing much easier and the wait is bearable. Regardless, today is a good day!


Sunday, August 24, 2008

Surgeon out of town

Well, crap. On Friday, we heard from Dr. Albritton (young adult oncologist at Dana Farber in Boston) and she said Dr. Rahbar (Nick's surgeon at Children's Hospital Boston) is out of town until Sept 3rd. She may still meet with his fill-in and her radiologist; she'll discuss with Dr. Chen this week. In all probability, we won't hear anything until after the 3rd. She also suggested we try to see Dr. Sharma (Nick's ENT here in SLC) so he could just peek up in his sinuses and see what's going on, but Dr. Sharma is booked solid until Sept 3rd. Fine.

In the meantime, Nick was my co-host for Kelsey's end-of-season softball party, with over 40 people attending. It was a huge success, especially when they viewed the video Nick helped edit highlighting their season with pictures and music. Nick later said he caught himself grinning ear to ear as he watched the girls cheer in pure delight embracing the memories.

We also have our first annual charity softball tournament confirmed for Sept 13th. As soon as I can figure out how to do it, I will post an information sheet and pledge form to help raise money for the 2 charities Nick has selected. We have a lot of work to do so that will help pass the time as we wait.

School starts tomorrow for Nick (freshman in college), Carly (senior in high school) and Kelsey (first year in junior high). Nick is a little under the weather with a cold but he is excited.

Have a great week, everyone!


Wednesday, August 20, 2008

Results, Part 2

Nick had a CT scan done yesterday - poor kid - the contrast they gave him made him pretty sick. Thank goodness the scan only took about 15 minutes.

We met with Dr. Chen this morning and the scan indicates bone erosion in his right maxillary sinus area. Dr. Chen has requested that a copy of this scan be sent to Dr. Rhabar, Nick's surgeon in Boston. She would like him to look at the CT done yesterday as well as the MRI done last week. We're hoping the bone erosion was always there or was a result of the surgery - Dr. Rhabar will be able to determine. I have sent a copy of the scans to Dr. Albritton, the oncologist at Dana Farber, asking her to coordinate with Dr. Rhabar and review his condition. More waiting, unfortunately.

We've bumped up his scan dates to Oct 3rd (meeting with Dr. Chen on Oct 6th). Slight possibility of needing another biopsy (Nick said, NO - he's sick of people sticking things up his nose). Nick also has caught a cold and his chest is congested. I'm sure I'll be calling him hourly to ask him how he's feeling. Until then...he still has to do his own laundry.

Nick will be posting later about his trip to Canada - he came back saying, "eh?" and "aboowt". School starts on MONDAY!

Thanks for checking in!


Tuesday, August 12, 2008

Scan Update

Nick had an MRI done yesterday at noon and we followed up with an appointment with Dr. Chen at 4:00. We were all prepared to hear the results after waiting for 1 1/2 hours when we were told the results weren't ready and would have to call tomorrow. I'd forgotten how annoying these appointments can be. It was nice to watch Dr Chen - she would just grin when she looked at Nick.

I called this morning with no results and finally I drove up to radiology anyway and my pal, Ron, went ahead and gave me the preliminary report (not officially signed off by an md). Looks like there is new growth which they consider "worrisome". This is very similar to what they said back January. We are assuming this is scar tissue and Nick will have a CT scan next week to confirm it. Dr. Chen isn't too worried, though, and said regardless, the only thing she will do differently is to move up his next set of scheduled scans from November to October.

So for now, we're back in the perpetual world of gray and waiting. To help speed up time, Nick is off to Canada tomorrow morning until Monday. He'll have a blast! The rest of us are scrambling to put together our charity softball tournament on Sept 13th. Much more info to follow.

Til then...


Tuesday, August 5, 2008

Official Team Sarcoma Update

Reposted from an email received 8/4/08 from the founder of "Team Sarcoma - The Liddy Shriver Sarcoma Initiative"

You may be interested in the following press release which was made available on the web early this morning:

8,000 People Join the Team Sarcoma Initiative to Fight a Rare Cancer

"From its humble beginnings in 2003, when seven people who called themselves "Team Sarcoma" biked 200 miles in Louisiana, the Team Sarcoma Initiative has become an international movement. More than 8,000 people worldwide participated in this year's Initiative, surpassing the 3,400 who participated last year. Events in 14 countries were hosted by individuals, advocacy groups and medical centers seeking to raise awareness of sarcoma, a cancer that affects hundreds of thousands of people worldwide." ...

For the complete press release, see . You may know some of the patients, survivors, caregivers and physicians that are quoted in it.

For the list of all the organizations involved, see

For a list of all the events that took place, see

You might also be interested in two earlier press releases that give additional perspectives on this effort both of which also contain quotations from a number of patients, survivors, caregivers and physicians.

1. Medical Centers and Concerned Groups Unite in the International Team Sarcoma Initiative:

2. Patients, Survivors, and Caregivers Worldwide Band Together to Fight a Rare Cancer:

If you are interested in forming a team in the 2009 Team Sarcoma Initiative (July 18-26, 2009) and being a part of this international effort, please contact me at

Best regards,


Sunday, August 3, 2008

Summer Update

Mom here... I've been bugging Nick to update his blog but my nagging skills have seemed to dissapate a bit. So, I've taken it upon myself to update those that are interested in our boy, Nick.

The Team Sarcoma Walk went well, considering just a handful attended in Nick's behalf. Lee and I were out of town, dang it! From what I can wrangle out of Nick was that Dr. Chen was there with her husband and she thoroughly enjoyed introducing Nick to EVERYONE as her trophy patient. Pretty cute! Also, Nick's dad brought out the boat for some extra fun. Here are a couple picts:

Jerry, Denise (one of the fairy godmothers), Nick, Kelsey, Jake, Lynn, Todd & Dr. Chen
Jake & Nick getting ready to roll!

Nick and his dad's side of the family just returned from Nebraska for a family reunion (may I say, lonnnnnggggg ride); ready to start college on Aug 25th; trip planned to Canada to visit Jay & Anne Paterson on Aug 13th; and the biggie - Nick moved out with 3 other young men close to the Univ of Utah today! Scooter, his loyal golden retriever will miss him the most. Lee, Kelsey & I helped Nick move and got to check out the new pad (rental house). All I can say is the 3 second rule DOES NOT apply here. If any food falls on the floor, THROW IT AWAY! Other than that, I hope he enjoys his independence and freedom in the 3 weeks before school starts and the pressure of school, work, money, food, laundry.... get the best of him. I forgot - girls! He'll be just fine.

His next MRI is on Aug 11th - my birthday! Kelsey told me the other day, "Hey Mom, I know what you want for your birthday." "What's that?" I asked. She said, "You want Nick's scans to be clean, don't you?" I said, "I sure do!" She then asked, "Can that be from all of us?" Little stinker.

Turns out Primary Children's Hospital won't let Nick volunteer until he has one year remission under his belt. So, what we have decided to do is kick off our first annual charitable softball tournament to raise money for First Descents and rhabdo research. Since our family has loads of experience and connections with softball, we thought we may very well be successful in a long-term effort in giving back through this venue. We had a meeting of some influential local people and are in the works to see if we can pull it off in the month of September - National Childhood Cancer Month. I'll keep everyone posted.
That's it for now! Many thanks to everyone with their continued prayers and support!