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!

Lori/Mom

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!

Lori/MOM

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...


Lori

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 http://tinyurl.com/59e3fc . 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 http://tinyurl.com/4znxd8

For a list of all the events that took place, see http://tinyurl.com/6jc9nb

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: http://tinyurl.com/6jq4fs

2. Patients, Survivors, and Caregivers Worldwide Band Together to Fight a Rare Cancer: http://tinyurl.com/5hba9e

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 shriver@genesis2.com.

Best regards,

Bruce

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!

Lori

First Descents

July 4th I had the opportunity of going to a cancer survivor/fighter summer camp in Kalispell, Montana. It was a week long kayaking based getaway from the real world where I was able to get my bearings back and think about what I want to do with my future. It was one of the best trips I have ever had! I met a lot of new people and made some really good friends.
First Descents does a lot for cancer survivors/fighters that modern medicine cannot. I did not have to pay one penny for the week stay. My parents paid for the plane ticket but that was it. Even the plane ticket would have been paid for if money was an issue. First Descents is strictly funded by sponsors and donations. I agreed on being an ambassador for the camp by help raising money and maybe in the future even being a camp counselor. I hope this summer to have a softball game in which all the money raised will go to First Descents. Anyways, here is a summary of the days at camp:
I was picked up at the airport by two camp counselors who had the "nicknames" of Matteo and George. They told us everyone at camp would be givin a nickname at camp if they did not already have one from the year before. I was curious to see what would be givin to me. We picked up some more campers who were all talkative in the van. They were from all over the nation.
Finally we arrived at the cabin in which we would stay the next 6 nights having the time of our lives. At the cabin I met all the counselors and campers. Right away the counselors began asking me questions to help determine my nickname. As soon as I told them my name was Nick, they knew right away that my nickname was going to be "Nickname". Ha. So the entire camp I was called Nickname instead of Nick. I kinda liked it!
That night we were fitted for our dry suits (since the water temp was 45 degrees) and kayaks. I was really excited to get out on the river the next morning to try them out. The next morning we went out to Lake Macdonald where we learned paddle strokes and how to "wet exit" our kayaks if we ever flipped over. Because we had spray skirts on we were attached to the kayak skin tight so that water could not enter as we went through rapids. You had to learn how to stay calm and pull your spray skirt off. We then played a game of kayak polo which was fun. We then took off to the river where we learned how to enter and exit "eddies" which is where a section of non moving water is that is good for taking breaks and waiting for the rest of the group. It is really difficult going from moving water to non moving water. Your kayak has a tendency to want to flip over if you dont lean right. I admit I tipped over a couple times the first couple days.

The last day of kayaking I was able to pull of my first complete roll in moving water! I was so stoked! I had been working on it all week with the counselor's help but had never done it on my own in moving water. It is kinda hard at first to learn to keep your cool and get set up under water to use your paddle to roll yourself back upright. But I finally did it and I had the biggest smile when I did.  One of the counselors who I was closest with (Corey) was right next to me when I did it and he was so proud. It was good having him impressed when he was a pro kayaker and almost made the olympic team in his prime. He also coached the womens olympic kayak team in '96 which took a bronze. Anyways, after completing the roll and looking around I noticed that everyone had paddled on shore and were watching me. They all clapped and were happy for me since I was the only camper to do one. (I am not bragging I swear) Then the camera guys paddled over and told me to do it again for the camera. I was able to do it again on my first try and I am hoping that the footage makes it on the documentary that the guys are making of First Descents. I was also interviewed at the end of the day just like every camper was. The documentary is supposed to come out in the spring. It should be pretty neat.

So even though my roll was one of my highlights of the trip, it could not top the final night at camp where we had a closing prayer and shared stories with everyone. We started off by circling around a little kiddie pool with water in it, holding candles inside glass cups. It was pitch dark and we were told to say any prayer we felt nessesary and to put the candle in the water anytime we wanted. Most people were pretty emotional and took their time. We then sang songs for a while and then moved onto the fire pit. At the fire pit, one of the pro kayakers (Brad) told us about one of his trips to some foreign country where he was shooting a kayak video. He told us he was having some bad luck with his kayaking and that they were thinking of leaving without any footage. The local tribe there said they wanted to give Brad a blessing that would bring him luck. They tied on his wrist a blessed ribbon called a "Baci" ribbon that the cheif had blessed and tied on him. So we were all given a Baci ribbon that we were to tie on the person next to us while we said a prayer silently. It was really cool!

Finally saying goodbye was the hardest part. It was cool to see how close some people can get in just a week. One of the local kayakers that helped out, who's nickname was Burn Rubber told me that I should really try to get into paddling and if I did he would ship me one of his older kayaks for free. He said he had like 6 and would love to give me one. I felt really honored for him to tell me that, since I knew that all he did was kayak and loved his kayaks. I just recently found out there is a kayak park like 15 minutes away that I would like to try out. I am trying to convince a buddy to kayak with me since your supposed to paddle with others for safety reasons. I am still looking.

Anyways, to sum things up, First Descents is an awesome program that I plan on attending years to come. It was the best summer trip I have had in a long time and I cant wait to go back. I really hope they have a ski camp soon so that I could be a couselor or something. My paddling skills aren't good enough to be a counselor yet. If you are a cancer survivor or fighter I am telling you that you have to go next year. It is the most fun ever and it does a lot of help for the other campers as well as yourself. You learn a lot about yourself.

Alright here are some photos:

Team Sarcoma Utah Awareness Walk

Hi everyone!

The 3rd Annual Team Sarcoma Utah Awareness Walk is being held this Saturday, July 19th at Jordanelle State Park. As you may remember, last year we had quite a group supporting Nick, sporting "Cowboy Up" tee shirts. Well, our little group made the newsletter/flyer announcing this year's event. Please attend if you can (Lee and I, unfortunately will be out of town). We truly support this endeavor as research funding for childhood cancer is rapidly running out of money and many trials have been closed due to lack of funds. The Liddy Shriver Foundation does a fantastic job in raising awareness for sarcomas so for us participating with Nick, we raise both awareness for childhood cancer and sarcomas.

Here is the information from the flyer:

Celebrate
Sarcoma Awareness Week
July 12 - 20, 2008

Nicholas Raitt, (back row center) along with many loved ones and friends took part in the Team Sarcoma Utah event in 2007. They attended in support of Nicholas and wore T-shirts with COWBOY UP across the front, Nicholas’s favorite expression. They were a lively, fun, and caring group. We look forward to seeing them at the 2008 Sarcoma Awareness Week Walk.
Sarcoma patients, survivors, families, friends, and healthcare providers are invited to join the third annual Team Sarcoma Utah awareness walk and BBQ. The event will take place Saturday, July 19 from 2 to 6 p.m. at Jordanelle State Park on Highway 40, between I-80 and Heber City.
For questions about this event, please e-mail Susie Crabtree at
susie.crabtree@hci.utah.edu.
For more information about sarcoma, please visit the following websites:
www.huntsmancancer.org/sarcoma
www.hci.utah.edu/sarc
www.liddyshriversarcomainitiative.org
*Sarcoma Awareness Week is part of the Liddy Shriver Sarcoma Initiative