Monday, July 14, 2008

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

Sunday, June 8, 2008

My Mom is mad!

So now that I have hair I think its so fun to do the craziest stuff with it. A few days ago I went to a salon and said, "I want a killer mohawk!". They said that would be no problem. I then went home and my parents weren't surprised that I had gotten one. But they weren't happy. I loved it! And then today I decided it was necessary to take my hair to another level. I wanted something that not many people have and something that grabs your attention and says, "Hey I mean business!". HA. So I had my buddy buzz a design in my head. I told him I wanted a "shooting star". He just laughed and said, "Lets do this!". After it was done I was all smiles because I knew my parents wouldn't be thrilled and that the guys would love it. I was surprised when I went upstairs however and all my mom did was sigh and say, "Eh, its alright". I think its pretty good for doing it ourselves and will definitely be showing it off wherever I go. Here are some pics though. You make your own decision on another moment in my crazy life. I will not be offended by any criticism that is posted. Ha
p.s. Jay will Canada accept this hairstyle?!

Thursday, June 5, 2008

Well, we tried...

With full intentions to go to San Diego to attend the Optimum Health Institute (OHI) for a full week (the minimum stay of a 3-week course), Nick and I lasted 36 hours. I'm torn between feelings of being an utter failure, a quitter, a spoiled brat and a baby to making the right decision that was best for both Nick and I.

We arrived Sunday afternoon with our positive attitudes ready for the vegan adventure necessary to cleanse and detox our bodies. We had a tour of the nice facility and then checked into our townhouse, which had a very peculiar smell to it. Hmm. No worries, went back outside to enjoy the fabulous weather. We picked up our new daytimers and water bottles and skipped off to our first orientation. Their philosophies make sense and we looked forward to our classes. First - dinner at 5:15. The dining room had a very peculiar smell to it. Hmm. Dinner consisted of a small salad with mostly sprouts; salsa, dried seed crackers, seed spread that looked similar to Dijon mustard, and my personal favorite, sauerkraut. Not cooked, however, just fermented. We tried a bite of everything. Ate only the salad. Cringed a little when one return participant informed us this was going to be our best meal of our stay.

Class later that evening was informative. We walked back to our room, sat on the couch, looked at each other and laughed. Room still smelled but we were pooped so off to bed by 9:00. I talked to Lee that night; he and Natalie were off to dinner and a movie. This was enough to bring me to tears. He tried valiantly to cheer me up, "Look at your schedule - don't you have have tons of stuff lined up?" But that made me cry harder because what was lined up was enema training with wheat grass implants (yes, this means what you think...), wheat grass juicing and colonics that we had signed up for earlier today.

Next morning, we went to join the exercise class - nice and easy. Then a beautiful treat of fresh watermelon for breakfast and we even drank the shot of watermelon rind that accompanied the fruit. Not too bad. Enema training followed; not too bad. Wheat grass juicing; not too bad - didn't come back up. Gosh, lunch already? Similar to dinner, including the smell. I ate the salad. Another interesting class; promises that our palate would change and the taste would get better. Continued emphasis of combining our mind, body & spirit to heal our bodies. Ok. We went to the store and bought our enema kits determined to do this. Dinner? Hallelujah! No, wait... the smell, the sauerkraut, the barely being able to eat the sprouts - all brought tears again. The raging headache, Nick looking at me as he held his stomach saying he couldn't do this anymore. I went to the night class as Nick tried out his new purchase and put the training to work. Back in our rooms, we listened to probably one of the best playoff hockey games in history through my computer. Nick and I shared stories - he proclaimed he will NEVER try the enema again and I tried to not hurl with the smell of our room and the sprouts in my stomach not agreeing. What we had to look forward to was the 3 day juice fast; no fruit juice mind you, simply the meals we've been throwing away, except run through a juicer. My mind, body & spirit was screaming to get out, NOW!

Again, I spoke to Lee and the tears poured. Even if he thinks I'm a baby, he still said we should come home. I just kept repeating, "This is terrible. It's just terrible!" Nick and I both slept fitfully. I came into his room about 7:00 a.m. Tuesday morning and I said, "Let's ditch this joint" and he was thrilled! It took us over an hour to pack as we both broke out in cold sweats, and fatigue so strong we had to keep lying back down to rest. We checked out, called a cab and when he said, "where to?", we said, "it doesn't matter!". We went straight to a restaurant and had a giant glass of orange juice. Once able to hold our heads up and speak, we made arrangements to stay at the Hyatt by SeaWorld and off we went to spend the day with Shamu.

We arrived back home last night feeling much, much better. I still believe very much in what OHI's philosophies; however, I need to research a much gentler approach for those of us that are weak in physical endurance. I would like to extend to Lee and Natalie that Nick and I have a much greater appreciation and admiration for them completing TWO weeks at OHI. Seriously, that is amazing and I stand in awe!

Here's a few pictures of our great escape:



Sunday, May 25, 2008

Another intense race!

So I entered another dirt bike race and ended up getting 9th. I will take top ten any day for now so I was very pleased. I am slowly progressing and am faster every race. 
I didn't get hurt at all in this race like I did last race. (I messed up my hand pretty good last race). This time in my first heat another racer hit a jump right next to me and his front tire ended up landing on my shoulder, then hitting my hand. We both stayed on our bikes which is crazy, and all I had was some scratches on my hand. Didn't even really hurt me. It was weird and scary at the same time. But when this happened during the race, I thought to myself at first, "Did that really just happen?!". Then my competitive attitude kicked in instantly and I thought to myself, "Game on! Go Nick go!" Ha it was fun. After the race I asked my Mom and Lee if they saw me almost get smashed, and they said they didn't. What were they watching?! I am the only racer with a tail light, and its dark! But my friends family saw it and they gave me sympathy so it was all good.
Well until next race!

-Nick

Friday, May 23, 2008

Country Music Marathon - Set Your Calendars!

Nick's step-dad, Lee Brower, is an entrepreneurial coach with Strategic Coach out of Chicago and Salt Lake City. His groups have all been following Nick's journey and have been extraordinarily supportive. In fact, a few participants (Barry & Barbara Bumgarner & Phil Cavender) have proposed the following idea and formed it into a reality.

On Saturday, April 25th, 2009, the Country Music marathon and 1/2 marathon is being held in Nashville, Tennessee. (Please click on this link for more information - http://www.cmmarathon.com/home.html). It is our intent to participate in this event in order to raise money and awareness for childhood cancer under the banner of "Nick's Warriors". We are inviting every single person we know.

Registration information (t-shirts, too!), charity selection, fund raising strategies, etc. will follow shortly. This posting is just to ask you to save the date. We have 11 months to train! To keep this in perspective, I would rather be slowly tortured and face death than consider running a marathon; I don't think I would even ride a bike for 26 miles let alone run 26 miles. My daughters whole-heartedly support this viewpoint. In reflection, Nick has faced death and endured torture so I guess it's time to suck it up and run. At least I will have Carly & Kelsey to whine with me.

Also, Nick and I are going to be visiting Optimum Health in San Diego for a week beginning June 1st. Basically, it is to detox his body of any remaining chemo so all the nutrition we are pumping into his body can be absorbed at "optimum" levels. Never in 1,000,000 years did I think Nick would take me up on my offer to go with him as a supportive mother. Dang it! We start off with a 3-day juice fast followed up with a vegan diet for the rest of the week. Let's not forget the colonics! Joy. I do believe my days of donuts and coffee are gone (or will be gone - I still have until May 31st...).

Next posting I'll include a current picture of Nick with HAIR!

Love Lori

Thursday, May 22, 2008

Please say a prayer for...

To those of you who have prayed for Nick, would you be willing to continue your prayers for our extended "rhabdo" family? The past few weeks have been particularly devestating for three families: Kiersten, age 23, Joshua, age 21 and Jordan, age 26 have all passed on to be with our Heavenly Father. The families are incredibly strong in their faith, yet their hearts are broken. I have witnessed the power of prayer from all of you and it would be a personal blessing to me if you would include these families in your prayers for peace and comfort.

Thank you,

Lori

Tuesday, May 13, 2008

I'ts ok to say "REMISSION"!

Hi everyone:

Nick had his first post-op MRI done last Friday - they are normal! We also had a follow-up appointment with Dr. Chen and she is thrilled with Nick's response to treatment. She was down-right giddy.

In the world of rhabdo, we are hesitant to use the word "remission" as the term implies the cancer is eradicated, when in reality, we really only can confirm the cancer is gone from the original tumor site. The term "no evidence of disease" implies a more accurate status. However, Dr. Chen said to go right ahead and say "REMISSION". So, ok... remission it is! My goodness that sounds delightful!

I recently wrote an article about childhood cancer and shared it with our company, Quadrant Living Exerience, LLC. They were kind enough to allow me to use it in their May newsletter. If you would be interested, here is the link:
http://quadrantliving.com/documents/Newsletter0805.pdf

Again, the support has been amazing and unbelievably powerful.

With love,

Lori