The Plan

Nick, Todd, Lee and I met with Dr. Gouw this morning. It appears the cancer is seeded throughout his entire abdominal cavity, with the largest mass - 3" x 2" in his lower left abdomen. The ascites (pockets of malignant fluid) are growing in size so that Nick is obviously bloated and uncomfortable. Dr. Gouw reluctantly told us we are no longer looking for a cure, but a way to slow down the cancer's growth. Our options are:

1. Start up again on the 3 different concoctions of chemo that Nick was on last fall.
2. Consider surgery down the road to remove the larger mass, as well as any other lesions the surgeon can find, with an option to have chemo applied directly into the abdominal cavity.
3. Consider a phase 1 trial, also down the road.

Nick and Dr. Gouw decided to go ahead and start chemo again on Thursday. This particular cycle is done over a six-hour period and then he'll be off for the next 3 weeks. The subsequent cycle will be a 5-day out-patient treatment beginning on Sept 27th. If all goes well, Nick will be assessed after the third cycle - probably around mid-October - to see how he is responding to the chemo. Of course, they will monitor him closely as things may change very quickly. But for now, this is how we will proceed. Dr. Gouw also gave him a diuretic to help him literally pee out the ascites.

We are all a little overwhelmed, a little shell-shocked and really, really sad. We've been bringing out the comedy dvd's, board games, and our beloved dice game again. Nick is going to see John Mayer tomorrow night and our Univ of Utah plays Pittsburgh on Thursday. Nick and his dad will be taking off for Moab this weekend to enjoy the holiday weekend. It will be good for them both.

I pray God's grace blesses our family as we prepare for our most difficult journey yet. My faith has not wavered and I rely on the prayers of all those that love us to bring strength, healing, acceptance and comfort to our family.

Thank you all for being there - it really makes a difference.

With gratitude,

Lori

We had fun...

We met up at the studios, met the producer then were escorted to the "studio audience" portion of the set. As you can see by the picture, we WERE the studio audience.

Back row: Deanna, Terri, Jennie, Chris & Jamie

Front row: Lori, Nick, Makelle, Kelli & Alane

The "Good Things Utah" hostesses chatted live for a few minutes and then read a bit about Nick and his accomplishments with Nick's Warriors. He officially won the Les Schwab "Do The Right Thing" award for August and was handed a gift box loaded with goodies. We giggled as the rest of show went on to demonstrate how to make home-made gnocci, sew an apron using ruffles and watched as they introduced a new product - soda pop you can make at home.
We took pictures, giggled some more and off we went to California Pizza for a fun lunch. The highlight was Kelli, who took pictures of everything in the studio - totally in awe. Thanks to all the ladies, young and old, who went -

On a more serious note, I did get a copy of Nick's scans. The tumor in his lower left abdomen is significant; the rest of the information could either mean, "oh, crap" or "hmm, not as bad as we thought". Nick just looked at it and said, "Ah, I'll worry about this on Monday." My kinda guy.

Have a terrific weekend and we'll post soon.

With love,

Lori

Good Things Utah

I received the following email yesterday:

"Hi Lori,

I am pleased to let you know that Nick Raitt is the monthly winner of the Les Schwab "Do the Right Thing" Award. The courage he demonstated when facing adveristy was extremely inspirational. We will anounce his name and tell his story on "Good Things Utah" this Friday, Aug. 27th. If he would like to be in the studio audience please respond back by e-mail or phone and I can help you make the necessary arrangements.

Congratulations!"

I'm currently gathering names of those that would like to join us at the studio tomorrow morning and watch the show live while they announce his name. Email me if you'd like to go - lorib@quadrantliving.com. Nick, however, will not attend, claiming he would be extremely uncomfortable with a studio filled with older women. Chicken.

We are loving to have something fun to do while we wait - scans at 1:30 today with results to be discussed on Monday (of course, I will get a copy of the report before the ink even dries late this afternoon or tomorrow morning. It's just trying to figure out what it all means that stumps me).

More later,

Love Lori

We wait... and we live...

It's a strange time when waiting for this upcoming scan. No point in "bringing tomorrow's clouds over to today" as Lee likes to say, so we salvage the everyday gifts. Kelsey started school on Monday, while immersing herself in volleyball and softball practices. Carly moved down to Provo and her first class is today at Utah Valley University. We go through the motions at the office and at home, as Nick - aka Goldilocks - decided our bed is the comfiest in the house, watched Lonesome Dove.

Then Rob, Shaylynn and Trent came by last night and coaxed Nick out on the basketball court. Lee and I finally went to bed at 10:30 p.m. and as we listened to the sounds of laughter, the bouncing basketball, the hoop snapping back upright and the banter between buddies, tears streamed onto my pillow. So thankful for this everyday gift, found right in our own backyard.

Scan is tomorrow; meeting with doctors Monday at 9:30 a.m. Until then, thank you all for your words of encouragement, your warm thoughts and prayers and genuine support.

Lori

PS: My favorite quote (I've posted this before) is:

"Worry doesn't empty tomorrow of its sorrow, it empties today of its strength", Corrie ten Boom

PET Scheduled

There have been some questions about Nick's insurance. I'll try to explain - Nick was dropped by his dad's insurance because he wasn't a full-time student. He wasn't a full-time student because he has cancer. He subsequently went on Medicaid. In the meantime, there was a law passed, "Michelle's Law" that says you can't drop insurance on college kids if they are sick, effective 1/1/10. In the meantime, Medicaid declined getting a PET on Nick because they only authorize for initial diagnosis. Since he has relapsed, we have gone back to Medicaid asking them to approve for relapse staging purposes. In the meantime, part two, Nick's dad is able to get Nick back on his insurance effective the first day of college - Aug 23rd, since Nick was/is a full-time student since January of this year. In the meantime, part three, I gave Huntsman my credit card, saying, "Get the damned PET scheduled now and we'll argue with insurance later!" FYI - PET scan cost about $4,800.

Today's phone calls received today are as follows: 1) giving my credit card info; call #2) PET scheduled for Thurs, Aug 26th at 1:30 p.m.; call #3) Medicaid approved PET. Credit card info rescinded. Now was that really so hard?

So, PET on 26th and presentation to tumor board on 30th and meeting with doctors immediately following to determine treatment.

A few stories: Nick, Carly, Kelsey and I watched "Babies" - the documentary and once we got past the naked breasts with Nick and Carly's groans of embarassment, the movie was quite cute - just what we needed. Another story is when Nick and I were in the waiting room, still reeling from the news of relapse waiting to meet with the surgeon, there was a woman sitting near us reading a book, "A Hint of Witchcraft". Kind of a creepy book to read in the hospital, so I nudged Nick to take a peek and he said, "Hey, I'm in... I'll even hold the chicken!" Next, Nick and his friend Makelle decided to dye his hair - ah, the things that crack us up...

Finally, I had submitted an article for a local television show, "Good Things Utah" about people we know that do the right thing. This was about 3 weeks ago and I haven't heard a peep from the producers. Yesterday, I received an email from a friend saying something about watching Nick's story on Good Things Utah!!! I immediately sent an email that it might have been worth mentioning to me... and trying to get a link of the show so we can post it. Whatdya know..

All is well for now - I pick up Lee from the airport tonight and will have my balance back. Until the 30th, please keep the prayers coming!

With love,

Lori

Dropping "F" Bombs!

...and it's back. Nick had his CT done at 8:45 and we finally met with Dr. Voorhees at 11:00 who had the unfortunate task of letting us know the *!*?* cancer is back in Nick's abdominal wall, in multiple places. The good news is that his lungs are clear and his organs remain unaffected. Surgery is not an option because of there being multiple areas affected and radiation is also not an option because the risk of damaging his internal organs. Nick will have to undergo a PET scan as soon as possible (working through insurance b.s. as I type) to make sure there isn't cancer anywhere else. Nick's oncologist is out of town until the 30th. We hope to have PET done next week so doctors can present his case to the tumor board, also on the 30th. We also met with Dr. Andtbacka, a surgeon at Huntsman and associate of Dr. Mulvahill. He walked us through the results of the CT mentioned above. He also has an associate out at the Univ of Mass (Boston area) that specializes in cancer of the appendix. He is going to ask her to consider Nick's case, too. She hasn't worked with rhabdo before so the chances of her taking his case are slim.

Nick and I are doing ok, but there were many tears with several staff members at Huntsman and my heart broke telling Carly and Kelsey - we sat together and had a good cry. I told them it's times like these I wish I had great big boobs so I could snuggle them in to me close. They had to snuggle my shoulder bones and ribs, instead.

We're sad, scared and pissed off. So we'll all get in our jammies, watch some Chris Farley videos, pop some popcorn, make some Kool-aid and surround ourselves with our love.

With an enormous sad and grateful heart, I thank you all for praying for Nick and our family.

Lori

Uh oh...

Nick was in Vail last week as a counselor with First Descents - he had a marvelous time (he'll post soon with details and pictures). On Saturday, Aug 14th, he headed home and called us on the road. I asked him if he wanted to stop in Payson (an hour south of Salt Lake) and watch Kelsey play in a championship softball game. He said sure and added the dreaded words, "I'm not feeling so good." He found a lump in his left lower abdomen and has been having some digestive issues the past couple of weeks.

I was very upset until he arrived; then I could hug him, touch him, and look him in the eyes - I felt much better. He was already scheduled for a PET on Mon, 23rd - which was subsequently denied due to Medicaid guidelines. He is also scheduled for an MRI of his head and neck on Wed, 25th. I had already called Huntsman last week to try and change the MRI of his head to an MRI of his abdomen. We called again this Monday and asked for immediate help. He was scheduled for a CT on Thurs, 19th unless he couldn't wait; he couldn't wait so we went in this morning (unfortunately, Dr. Gouw is on vacation this week).

The doctor that saw Nick this morning ruled out infection (although he has been running a low-grade fever off and on) and anything with the upper abdomen. Dr found the lump Nick found, and a second one. He thinks it might be lymph nodes - Nick is having pain on both sides. Could be a blockage in his small intestine, could be complications from his pancreas not working properly, could be a million things. Labs looked good, however and his fatigue isn't too bad. Now we wait until he has his CT done tomorrow morning (Nick has reactions to the iv contrast so he has to pre-medicate 13 hours in advance of scan, which is why he couldn't have one done today.)

So, please pray for Nick - scan is at 8:45 a.m. with a doctors appointment at 11:00 to discuss results.

Until then, we wait...

Lori