Saturday, August 22, 2009

Card Fairy

Beth Holt, aka "The Card Fairy" is a close friend of ours from Colorado. When she hears of someone not feeling so well, she will send them a card once or twice a week to cheer them up. She has been doing this for Nick since he was diagnosed in 2007 and picked right up again when he relapsed. Nick has received well over a hundred cards from her, never duplicated, always full of hope, encouragement and laughter. She has made a difference with her own form of treatment; Nick thinks she's pretty "cool" and I, of course, am extremely touched by her thoughtfulness.

I wanted to share her latest card to Nick:

"The most beautiful stones have been tossed by the wind and washed by the water and polished to brilliance by life's strongest storms." She said he is a 22 carat diamond now.

Thank you, Card Fairy. We love you.


Sunday, August 16, 2009

Taking flying to another level

Nick here,

My dad just recently met a man who owns an acrobatic airplane. His name is Mike Royall, who was a navy pilot who later became a commercial pilot, and now a retired man who spends his days flying his kit airplane which took him 6 years to build!!
Anyways, my dad and Mike were cool enough to line up a flight in his sweet plane which took place just yesterday. We did some crazy rolls, flips, loops, and even a hammer head stall (I believe thats what he called it) which you seen performed in the red bull commercial. I believe 4 g's was the most I experienced in the plane, but let me assure you its more than it sounds! We also did some low altitude terrain flight at over 200 mph which was pretty sweet. But the coolest part of all was when he let me do an "aileron roll" on my own, going both right and left. It was nuts!!
Lastly, another cool thing, which totally caught me off guard was that Mike looks VERY similar to my Grandfather (Dad's Dad) Bill Raitt, who was also a pilot in the military. Even though my Grandfather passed away when I was young, I still knew exactly who he looked like, and it was cool to go flying with Mike.
So anyways here are some pictures.... And Mike if your reading this, THANKS MAN!!!!

Wednesday, August 12, 2009

Dr. Grier is an alright guy, too...

Our duck tour driver and host had a super hero name of "Super Size"; every mile or so he's shout out, "Super Size!" and the entire load of passengers would enthusiastically shout, "QUACK QUACK!" as only proper tourists should.

Nick and Kelsey got to take a turn driving the duck in the Charles River.

View from the top of the Prudential Building - Boston is really quite beautiful.

Boston has been a fun trip so far; we took a duck tour yesterday and quacked up all over the city. We have tickets to tonight's Sox game so we'll take it easy today. My goodness, Boston loves their Sox! (addendum post - Sox beat Detroit 8-2; we took the "T" out to Fenway but walked back to the hotel - quicker.)

Our appointment took the entire morning. Dana Farber is an amazing hospital but the Jimmy Fund floor for pediatrics is very difficult for the tender hearted. So many children, so very sick. Some are as tall as Nick; some came in a stroller. Some can barely walk with assistance; some run as fast as they can to play with the toys. Some are crying; some politely tell their nurse "thank you" for their stickers.

Dr. Grier asked Nick what he thought his own prognosis is and what his expectations from him are for his treatment. Nick expressed his prognosis to be anywhere from 10 to 40%; Dr. Grier felt 40% was being generous. Nick hopes Dr. Grier will establish a treatment plan for his recurrence; Dr. Grier honestly admitted they don't know what to do. That being said, he discussed three different chemo combo options to choose from, all outpatient, all with similar toxicity levels (substantially less difficult that Nick's previous 16 rounds). After drawing on the paper liner used for the exam table, he and his PA decided to go ahead and throw in the kitchen sink, do all three options. In other words, let's attack the microscopic residual cells with all artillery we have left now, because if he relapses again on any one option, any additional treatment would be ineffective.

We discussed radiation again and although we still haven't confirmed anything with a radiation oncologist, Dr. Grier simply stated chemo will only prolong relapse, while radiation is Nick's only chance for a cure (remission). Well, when you say it like that...

Dr. Grier will be working with Dr. Gouw in setting up the specifics (this will involve EIGHT different chemos along with radiation thrown in there somewhere) for approximately eight to twelve months. All chemos, with the exception of vincristine, will be on the regular one week on, two weeks off schedule (he will receive vincristine once a week for four weeks straight).

Because Nick's spleen has been removed (the spleen is the bacteria filter for the body), if he EVER has a fever of 101 or higher, he has to go to ER for a blood culture and antibiotics immediately. We are all encouraged to get flu vaccinations. Although Nick is unhappy with the length of treatment, it should not stop him from having somewhat of a "normal" lifestyle, maybe including going back to school. It'll all depend upon how the chemo will make him feel.

Nick also has an irregular heartbeat; something we need to check up on when back in Utah (probable side effect from the "red devil"). I don't think he'll start up with treatment until the first week of September so he has a couple of weeks to have fun and enjoy his baby fine hair on his head (Dr. Grier paid him a quarter so he could rub his head - way funny!).

So that's it. The guessing game is continuing but it's a plan. We have asked Nick to rely on his own instinct as well, to listen closely to what his body tells him, and to consider looking at alternative and complimentary ideas, too.

We'll be home tomorrow night. Loads of gratitude to all for checking in on Nick!

With love,


Sunday, August 9, 2009

Petersen Golf Tournament

Nick here....

Steve Petersen, who is a good friend and client of Lee, hosts a charity golf tournament every year. They give out donation money raised to many families in need as well as charities established by survivors of many different battles. It was a cool experience to see all of the other people come up and talk about their story, and then see them get their big donation check as I did and see their faces light up with gratitude. Thanks Steve and Polly for the love and support, as well as the entire Petersen Incorporated crew who made the tournament happen. Super Cool!!!

Also, this weekend I was able to head up into the mountains with some buddies and do some camping. It did get a little bit cold (below freezing at night) but it was worth it due to the horses we brought with us. It was fun to take them through the mountains and see a lot of country the old fashioned way. No motors or wheels, just men and their horses. Ha.

The fam and I are off to Boston so there will be some big postings coming soon.
Love Nick

Wednesday, August 5, 2009

Dr. Gouw is an alright guy...

We scheduled a meeting today with Dr. Gouw (Dr. Chen's replacement) to review his opinion of Nick's new chemo and/or radiation treatment upcoming in a few of weeks. Dr. Grier is still the lead, but Dr. Gouw is at the core of Nick's treatment, obtaining data, resources, discussions at length with Dr. Grier, Dr. Albritton and Dr. Chen (she is on top of a mountain but promised to be available if necessary - she is heavily vested in Nick's care, regardless of her sabbatical - what a great doctor!)

He came in talking 100 miles a minute; a little excited, a little nervous with a lot of care in his voice and eyes. Beginning conversations with Dr. Grier, Nick's prognosis was "dismal" - relapse alveolar, etc. After further conversations, Dr. Gouw now thinks Nick's 10% chance is up to 50% due to several factors; i.e. the complete eradication of the original tumor, Nick's response to chemo, his age, etc. Dr. Chen is the biggest advocate in aggressively attacking this rat bastard, rhabdo, because she thinks Nick can beat it again. They wouldn't be aggressive if they didn't think they could do it in order to maintain a quality of life for Nick. There was optimism all around the room, with a little hope, too. Let's make that LOTS of hope!

The tentative plan, which we will confirm next week when we meet with Dr. Grier in Boston, is to have 3 chemos - vincristine (which he has had all along), actinomycin-D and cytoxan, aka VAC. This concoction is usually for pediatric patients. Vincristine will be given once a week for 12 weeks and the other two will be administered on a a regular cycle of one week on, two weeks off for four cycles - all outpatient. Interesting, as the outpatient section of Huntsman is the only area we haven't been to yet - now we're complete.

We're still waiting to hear the full argument for radiation, but we don't have to worry about it yet until chemo is done. He'll still lose his hair but the chemo won't be nearly as brutal as his last 16 rounds. He is finally starting to feel better, but gets tummy aches after he eats. His pancreas is still trying to produce enzymes while trying to heal at the same time. He has gained 3 lbs so he really is on the mend.

On the drive home from this appointment, Nick said, "Now I can listen to anything Dr. Grier has to say! 50%, I can do 50%!"

Nick is a special guest for Petersen's Golf Tournament this Friday and will be presented a check for Nick's Warriors and his two charities. Amazing! Lee will be going with him while Carly, Kelsey and I head south for a big softball tournament in Spanish Fork, games beginning tomorrow morning. We all leave for Boston on Monday morning with our appt with Dr. Grier one week from today. Nick also had a chest ct done today but we aren't expecting any surprises, just follow-up.

Thanks everyone for keeping up with this journey. We are grateful for the prayers and support.

Love Lori

Sunday, August 2, 2009

Relay for Life

We arrived at the Syracuse High School track at about 5:00 p.m. Friday afternoon. We unloaded coolers, snacks, posters, books, pins, etc. and set up our canopies (we had reserved two sites for a combined 30 team members). I was worried we would be left short of team members but it turned out we had about 40, with the majority staying the entire 15 hours.

Nick made it, although he was feeling poorly. Thankfully, his dad brought the motor home and he was able to take breaks when he was tired. His checkup appointment with Dr. Mulvihill earlier in the day left the surgeon a little concerned that Nick isn't bouncing back like he thought he should be. He offered to do a ct scan on his abdomen now or wait and do it when he has his chest ct scan done next Wed; Nick chose next Wed to give him some time to finish off the antibiotics. He is down to 142 lbs. Good news is that he was given the ok to go ahead and skydive again, by invitation of Brad Ludden (First Descents founder) at the end of the month.

By 6:00, each survivor announced their names and how long they have been a survivor (Nick was in motor home so we missed him announcing his name). He made it in time when the survivors took their victory lap in one direction, while the caregivers walked in the opposite direction, meeting halfway. Then we all walked together to complete the lap.

Following, was the introduction of each team; our two teams proudly held up a poster with Nick's logo. The main attraction was Fairy Godmother, Jennie, with her hospital gown revealing what honestly looks like her own bum peeking out. Carly donned the other hospital gown and joined Jennie in the team lap. That was enough for Carly, but Jennie wore the gown well into the wee hours of the morning, with cameras snapping periodically throughout the night, accompanied by finger pointing, gasps then peals of laughter.

Nick & Carly

Olive Garden provided dinner and the walking was official. The evening took on a tender, emotional moment at 10:00 when the lights were turned off and the candles in each luminary bag glowed. There were hundreds of bags lit and placed around the entire track, representing those that have fought or are still fighting cancer. We were asked to stand next to our personalized bag, and if we didn't have one, to stand next to a bag on the track so that no one was left alone. Our teams had 36 bags, lovingly decorated by three young women from our church. There was a moment of silence followed by a sweet song as we remembered our loved ones. It was a beautiful scene: the lights glowing in a collective circle, surrounded by love, support and faith.
Nick had many of his friends come, as well as Carly and her entourage. They were pure delight to watch - playing soccer, football and an impromptu dance off with Carly and Kyler. I think it was a draw. This was Nick & Lee's favorite part of the night. Mine was watching Carly and her friends sing karaoke at 3:00 a.m. We howled with laughter as those kids brought down the house. Well, at least the 30 or so people that stopped to watch, dance and sing along. Carly is definitely in her element with a microphone in her hand, her buds beside her and an audience.

Although we had sleeping bags, air mattresses and pillows, most of us didn't sleep a wink and walked and walked and walked. Fairy Godmother, Denise, made a killing in selling her "key-purse" accessories. I sold a whopping 2 cancer books and one childhood cancer pin. Apparently you need to be there to sell items. There was a "sheriff" on site and we could issue a warrant for arrest and our person of interest would be placed in jail for a mere .50 cents a minute. Both Carly (for moving out) and Melanie (for being too cute) were arrested. Carly was more ticked her friends didn't visit or bail her out than for being arrested.

Lee - out cold

Jennie took hundreds of pictures and I should be able to post them on Nick's website, in two weeks or so. Big, fat thanks to our team members:

Lee, Nick, Carly, Kelsey, Todd, Jennie, Denise, Jerry, Melanie, Brandon, Jamie, Julie, Emily, Cami, Lauren, Erin, Sue, Ty, Mark, Megan, Mike, Lisa, Steph, Sari, Cory, Eric, Andrew, Kyler, Tanner, Alex, Derrick, Scott, Gentry, Colton, Adam, Natalie & Jarod.

The event was wonderful and I'm so glad we participated. Cancer is everywhere and thankfully, so are the survivors, caregivers, prayers, acts of kindness, friends and unlimited love.