Tuesday, April 28, 2009

We did it!

Ok, pull up a chair, get a cup of tea and settle in for a story.

Lee, Kelsey and I took off to drive the running route and instead of reassuring us, it intimidated us. Lots of hills. Lots of miles. Lots of Advil. We met up with Jennie & Dean for a bite to eat; however the wait was over 90 minutes and we had to take off to airport to pick up Carly. Jerry & Denise took our spots in line. After we grabbed Carly, who was dealing with the onset of a wicked cold, we went back to hotel to pick up Natalie, who needed a cat nap. Together we all headed to the convention center to pick up our registration packets and do a little shopping. Lee was able to pick up Nick's registration/running number even though he wasn't there. I purchased photo frames for each "warrior" attending our meet & greet later and the manager gave me a discount after I explained what they were for. She said she lost both her parents to cancer and then proceeded to give me 25 Country Music Marathon magnets to hand out, too. We saw lots of funny tee shirts: "If found on road, please drag across finish line".

We arrived late to our own meet & greet dinner but Debbie, Barbara & Barry had everything under control and gift bags ready to hand out. Also attending were Jennie, Dean, Jerry, Denise, Alane, Makelle, Kailey, Michael, Tony & Sandy.

Lee shared an intimate insight to his observation of Nick's courage in facing cancer - by being in motion. We also took a moment to present a brilliant red cape with Nick's logo on it, given to Dean, as his fund raising efforts are surely due to his superhuman capabilities. We all know every superhero has an accomplice, and then a bracelet was awarded to his wife, Jennie, affectionately known as the "Extortionist", which was lovingly inscribed on the bracelet. (FYI - Jennie is one of Nick's fairy godmothers and the cape was designed and handmade by his other fairy godmother, Denise.) Off to an early bed for us all.

Saturday morning, we were to all meet in the lobby ready to board the bus by 4:45 a.m. as our hotel was about 30 miles from downtown Nashville. Not only did our family not make it in time, but neither did the bus. With quick minds and car rentals, we car pooled to the finish line at the Titan stadium and caught a shuttle bus to the starting line, just in time! The gun went off at 7:00 a.m. with 1 to 3 minute interval starts for "corrals". Lee, running a full marathon, was in corral #21 and had a 7:45 a.m. start (ish) and the rest of us were in #32 - dead last corral, running a 1/2 marathon, with an 8:00 a.m. start.

Kelsey and I broke away after the first mile because she wanted to jog a bit, and that is really about all we jogged, too. Jennie and Dean found a group of 40 or so women with pink hoola hoops, "Hoops for Hope," that were walking while hoola-hooping. Dean had found his inspiration and walked right smack in the middle of them. Jerry, Denise, Carly & Natalie kept pace just in front of the hoopers, which was at a fairly quick pace (quick for us...). Debbie, Makelle & Kailey were serious about this and were no where to be seen until after the race was over. Michael was with 4 other friends, all wearing Nick's Warriors shirts and then there was Tony.

Tony's sister, Joella, has been battling her own cancer for the past 3 1/2 years and was hoping to be here with Tony in the run. He even had a wheelchair all ready to go, but she just wasn't up to the trip this year. Determined to represent her, he still brought the wheelchair and proudly displayed a posterboard with pictures of Joella and her family. To add even more motivation, he pinned Nick's runner's number on the wheelchair, including Nick's electronic chip so Nick actually posted a time, a split second faster than Tony. He did terrific!

As Kelsey and I were along mile # 6 or so, I saw a very distinguished gentleman, in a distinguished neighborhood, sitting ever so dignified in his front yard. I had to stop and take his picture:

He asked me to join him, but I just sighed, smiled wistfully and started to jog again.

There was tremendous support along the entire route - bands playing, people with signs, cheerleaders, neighbors with sprinklers (some even with cinnamon rolls) and watering stations. Funny tee shirt on a very large woman that read, "Does this shirt make me look fast?" I noticed a runner with a "Cure Childhood Cancer" tee shirt on and when I asked her what she was running for, she said for her 9 year-old daughter who was fighting cancer for the 3rd time. I asked what kind of cancer and she said "Rhabdo". "I'm a rhabdo mom!" I said. Kinda cool to have a kindred spirit amongst the 35,000 runners.

Kelsey and I started to ache around mile #9; whine about mile #10; vocally complain at mile #11; eyes glazed over at mile #12; and thought the last 1.1 miles to the finish line would never, EVER arrive ("Are we even going the right way?"). Kelsey sprinted the last 100 yards to make sure she had a good picture; I walked. Carly prodded Natalie every time she saw a camera and made her pick up the pace while striking a pose. The girl is a natural. Jerry, Denise, Jenny & Dean came in just in front of the hoola hoopers - we all made it under 4 hours! We found Barbara, Barry, Debbie, Alane, Makelle, Kailey and Tony and made our way to the marathon finish line and after about 30 minutes, we were there to cheer Lee in as he crossed! We subsequently collapsed after that.

The following times are:

Rusty Hosea - 2:05
Lori Hosea - 2:32
Debra DiSimone - 2:19
Michael Barron - 2:16
Kelly Santangelo - 2:08
Tony Childress - 3:08
Nick Raitt - 3:08
Debbie Bruton - 2:34
Carly Raitt - 3:56
Natalie Brower - 3:56
Kelsey Raitt - 3:45
Lori Brower - 3:46
Dean Magnesen - 3:59
Jennie Magnesen - 3:59
Jerry Gill - 3:59
Denise Cummins - 3:59
Makelle Macrum - 1:37*
Kailey Larsen - 1:37*
Lee Brower - 5:09 (full)
* Makelle & Kailey's official time was posted as 1:37; however they swear there is no way they ran that fast and their ipods are probably right with a time of 2:10.

We are all home now, sore and tired. We are also thrilled with our accomplishment in our efforts to support Nick, CureSearch and First Descents. As of yesterday morning, we cleared $13,000! I will post all the pictures soon once I collect copies from everyone's cameras, both on this website and Nick's http://www.nickswarriors.org/ site.

Nick thinks he'll be losing his hair in the next few days but he is feeling so much better. He takes off to Moab on Thursday for a few days of hanging with the guys before his next round of chemo on May 6th.

Thanks to everyone for your miles, donations and prayers. You are all a true testament to what strength can be drawn from when we work together.

With loads of love and gratitude,


Friday, April 24, 2009

We are here!

It took us over 15 hours from front door of our home to the lobby of the hotel, but we finally made it. Due to plane complications, we weren't able to make our connecting flight on time, so we were re-routed through Cincinnati, through Charolotte then to Nashville by midnight.

We are off to do some site seeing and shopping before coming back for our team dinner tonight!

I checked in with Nick and his counts are "in the gutter" at 1.1 white blood cell count and platelets are only 80. We are very grateful he is at home resting.

More to follow soon...


Tuesday, April 21, 2009

Let us not forget...

Nick came home late Sunday afternoon, cowboy hat firmly on his head as he waved goodbye to the nurses, stating "See you on May 6th!" As of this morning, he isn't feeling too well. He has a sore throat (mouth sores are kicking in), his mucusitis is back, didn't sleep well and has a tummy ache. He was able to spend an hour or so at his little sister's softball game last night so he could watch her inaugural start as a pitcher - weather was perfect and so was his sister, pitching a no-hitter. True to form, Nick made arrangements to have his friends meet him in Moab, Utah to spend three days with our friend, Colin Fryer, at his lodge, the weekend before his next round. Nick definitely makes the most of his time when he is feeling well.

We are so blessed that Nick has the will, desire and opportunity to forge ahead, regardless of his situation. What I want to bring attention to are the hundreds of others that are facing adversity as well: Please remember Bella, age 6 1/2, who relapsed with a tumor to the brain last week; remember Robyn's son, who is in his early 20's, who just received confirmation of a mass in his abdomen after being in remission for over 2 years; for Robert, another young man in his early 20's, that has relapsed AGAIN, battling for over 3 years; for Zach, a young teenager who recently relapsed and is going through treatment; for Ryan, who is making the most of each precious moment he has with his family; for Ty-Michael who has been in remission since 2000 yet just relapsed with spindle cell carcinoma; and for the others that I have not included.

This is real. This is scary. Please, please remember and pray for them all.

There is a project that I have been following hosted by Bruce Shriver (Liddy Shriver Sarcoma Initiative) and would like to share:

"During February, people who have been affected by sarcoma were invited to share a moment in the "Moments in Sarcoma" project. More than 140 submissions from around the world were received. It is hard not to be touched by the experiences of joy, laughter, love, grief, hope and determination they contain.

One of these special moments will be published every day from April 6 through August 6, 2009 at
http://is.gd/qYXW. I invite you to share in this daily journey by subscribing to the e-mail updates (http://is.gd/qYYn) or the news feed (http://is.gd/qYZ9)."

The short stories/essays are quite touching.

Some good news to close on - we have raised almost $11,000 as of today for the marathon! We WILL make a difference.

Blessings to you all,


Monday, April 20, 2009

Salt Lake City Marathon

On Saturday, Lee and I had the privilege of waiting at the finish line for Dave Sheffield, our long-time friend and controller at work. Because he couldn't join us in Nashville, Dave chose to run in the SLC Marathon, representing Nick's Warriors and raising a significant amount of money, as well. He has trained extremely hard and hates running as much as I do (I KNOW, that is huge!). It is with extreme pride and humble gratitude to post the following pictures and message from Dave:

"Finished Race – 4:46:03

I am really glad that the race is over and that I finished the race. The last 3 miles were really hard… but I did it for Nick. Running for Nick’s Warriors was worth it. Knowing that Nick was going through a lot more pain and anguish then I was, kept me going. If Nick can fight cancer head-on, I can endure the pains of a marathon.

The day was great… weather wise, and I had the support of my wife and two daughters the whole time. They met me at the 5 mile mark, the 23 mile mark, and at the finish line. Lee and Lori were also at the finish line… which was really nice. Having support is very important. I also had the support of other family members and friends at the 12, 18, and 20 mile mark. Knowing they were there helped keep me going. People were cheering and clapping throughout the whole route… and there were bands and individuals playing music on the route, as well.

Thanks Nick… for letting me run for you.
Dave Sheffield"

Friday, April 17, 2009

Militant Blessings

The fairy godmothers stormed Nick's room last night at about 19:30 hours.

In tune, they sang:
"The rhabdo's back but it doesn't know
Nick and his warriors are ready to go.
He'll keep the fight going on and on
Until the rhabdo's finally gone.

Love and faith for Nick abound
the nasty rhabdo won't stay around.
We know right now life's full of strife
but soon you'll be living a normal life.

BOO-YA! Cancer Sucks!"

They came with gifts (an appropriate tee shirt) and dog tags that said, "Nick's Warriors" and "Conquer Cancer".

Also visiting Nick last night were his sisters, Carly & Kelsey;

his friends Cory, Kira, Eric, Kristen & Emily;

and Lee & Mike.

With all 12 of us in the room, Lee, Mike & Cory gave Nick a spiritual blessing which was very moving and touching for all of us in attendence, especially Nick. We closed down the cafeteria afterwards. It was a terrific night. Kudos and thank you's to the godmothers for another creative and highly entertaining show of support - you two are awesome.

Nick is starting to lose his sense of taste, "Hey Mom, this water tastes gross, you try it!" Uh, no thank you. He tried again, "Hey Mom, would you like a sip of water?" I did and it was fine. He said, "Hmmm. Could be maybe the trail mix I ate earlier is just fine, too?" But his hair is cute and curly and his cheeks are rosy pink from the "red devil". So far, so good.

More later. Love Lori

Wednesday, April 15, 2009

And here we go...

Nick had his port put in yesterday up at the U of U rather than at Huntsman - big bummer. Poor guy literally waited for 4 hours in a hospital bed before being wheeled in at 4:00 p.m. (originally scheduled for 10:00 a.m.). But, not much we could do about it; surgeon was great, nurses were great, post-op staff were great; and he was home by 7:00 p.m. with pain meds so he was feeling great.

He had an echo done this morning; met with Dr. Chen next and finally walked down the old familiar halls of the 4th floor. Nick's return had been the topic of the morning with the nurses and we had one after the other come in to say they were so sorry to see him again (with a hospital bracelet). They'd rub his hair as many hadn't seen him with hair before and tell him how good he looks. He has the full admiration of all the clinic nurses and aides as well as the 4th floor staff. Even the housekeeper gave us a big smile and an enthusiastic "Hola!"

He had a pic line put in this afternoon so he can get chemo started today (port should be healed for a few more days). His dad will be with him tonight, although Nick said we don't have to spend the night unless it makes us feel better. I think we'll decide night by night. Aw, who am I kidding: it does make me feel better.

Our area is having a huge snow storm this week so softball has been cancelled for both girls. This is nice so I can focus on packing the rest of Nick's necessities for his stay (cards, Playstation, etc.) We will all bombard him tomorrow with the whole family and lots of friends.

We plan on him being released on Sunday. Nick will have more pictures to post on his skydive jump - looks so fun! He's a little tired today but his spirits are good. He was bossing me in the car when I was parking at the hospital, "there's a truck backing out, Mom", "Look out for that post", until I had some fun with him as I was backing up and stomped on the brakes and I gasped. His hair stood on end and his eyes were huge; I started laughing and fessed up that I was just messing with him. He smiled and said, "That's not funny, Mom, my heart stopped beating. You are going to pay, you are going to pay..." He's wrong - it is STILL funny. It's the little things, ya know?

More to come soon. Thanks to all for your prayers and faith; it makes our journey a little easier.

Love Lori

Monday, April 13, 2009

Sky Dive

I was scheduled to sky dive with a retired Navy SEAL Saturday (the 11th) but because of cloudy weather we were not able to do it. Fortunately Nix (the SEAL) was cool enough to try and do it Sunday morning which was Easter.
I woke up Sunday morning to blue skies and little wind. Perfect weather. So Lee and I ate breakfast, checked out of the hotel, and jumped into the rental car and headed to the jump zone.
The first thing I had to do once I got there was sign a bunch of papers saying I couldn't sue them if I died or whatever. Then, Nix gave me like a 5 minute pre-jump explanation of what I was going to do once we got in the air. He basically just said we are going to jump out of the plane.... Not a big deal. Ha. Then I got put in my jump suit and harness that attached me to the front of Nix when we jumped out of the airplane. After being geared up and waiting for the plane to arrive and pick us up, I asked Nix, "So can we do any flips?". Without hesitation he replied, "Do you want to do front flips or back flips?". Now realizing that I had choices I decided front flip was the way to go. So he told me a few minor adjustments to do to my jump procedure to allow us to do a front flip. I was super excited. Finally the plane landed and about 10 of us walked out to the plane and boarded. The pilot was a young kid in flip flops, and he began take-off as soon as the last person was in the plane. (Not even sitting or buckled in yet). As soon as the wheels of the plane left the ground I could see that Nix was smiling at me. I asked him why he was smiling, and he said to me, "You cant go back now!!". I thought to myself right then.... "Whats that supposed to mean". Finally we got to our destination of 13,000 ft where people began to jump out of the airplane. I wasn't nervous at all until we started walking to the open door. Then I thought of the words my grandpa said to me, "Your jumping out of a perfectly good airplane!". So I was squatting right in front of the open door with the camera guy looking at me hanging from the wing. Luckily Nix is not the kinda guy who would ask you if your ready. It was just 1. 2. 3. and now we are doing front flips at over 100 mph. I think we did like 2 front flips and then the rotation stopped. However, the rotation stopped as our backs were toward the ground and I was watching the plane get smaller and smaller. This was the only time in the jump that I thought... "Uh oh". But I just stayed tucked and a few seconds later we flipped back around and free fell for about 30-40 more seconds. Nix pulled the chute at 5,500 ft where I thought the complete rush of the jump was over. Little did I know that these parachutes are capable of doing hairpin turns that feel like your pulling 100 G's. I felt more out of control in the hairpin turns (where you and your chute are horizontal from each other) than I did in the free fall. But we had an awesome landing and it was the coolest thing ever. Definitely will be doing it again sometime. I highly recommend it to anyone who is seeking something totally different and extreme at the same time.
I will have video in a couple days of the free fall. But I will put some pics up of the pre-jump and post-jump pictures that Lee took.
I will post something soon since I go in for my port surgery tomorrow and I begin treatment on wednesday.

Thursday, April 9, 2009

Final Results

It's confirmed; it's rhabdo again.

We met with Dr. Chen this afternoon. She thinks the rhabdo has been there all along, sitting dormant until the pancreatitis flare up. Kinda like what came first, the chicken or the egg; not sure what prompted what. She doesn't think there are any other tumors nor any cancer in his bone marrow or lungs.

Because Nick responded so well to his last treatment, she'll put him on the same protocol again. He had labs drawn today; will have a port put in on Tuesday (small surgical procedure to put the quarter-sized port under his skin near his heart. Last time he had to have a hickman port which just hung out of his body and he couldn't take a shower without covering it up - so this will be much easier); an echocardiogram on Wednesday morning (he'll be having more of the "red devil" and they need to make sure his heart can take it); and finally he'll check in to the hospital Wednesday around noon for his first round of chemo in this second battle of cancer.

When we realized what we may be facing a few days ago, Nick asked to have a special gift given to him be put forth into motion. A colleague of Lee's (Steve Rosetta) purchased a tandem skydiving jump with a Navy Seal in San Diego at a fundraising event (Lee was the guest speaker) last September for his son. His son, however, said, "Oh, I don't think so..." so Steve sent the gift certificate to Nick. We've been waiting for the weather, school, etc. before scheduling but yesterday I was able to book Lee & Nick their flight, hotel and car. They will leave tomorrow and return Easter Sunday. The Navy Seal who has offered to take Nick up will keep the entire day open in case of weather issues and promises to give Nick a great weekend. Nick's doctor wanted to have Nick's port put in tomorrow but when I said we were going to thrown him out of a plane instead, she worked it in for next week. They need the port to heal for 5 days before starting chemo but they'll go ahead and use an iv for this round and Nick can have fun now.

Nick, unfortunately, will not be able to go to Nashville for the marathon, even as a bystander. His blood counts probably won't be too good so he'll have to trust his warriors to make him proud. In the meantime, he and his dad will get Nick moved back home. He will also be talking to his professors to see how he can work out the rest of this semester.

Dr. Chen plans on Nick having 2 rounds of chemo (one week in hospital, two weeks to recover) then check on progress with an MRI. He'll probably have another 2 rounds and if all goes well, he may have surgery to remove the residual tumor, assuming they can get clean margins. We'll see.

When I first read the results of his PET scan and absorbed the words "mass" and "metastatic disease", I immediately spouted my five favorite four-lettered curse words, turret style. then I thought it was time to have five favorite four-lettered peace words. It wasn't easy, but I came up with - love, pray, hope, care and live. So that's what I'm going to do now.

A big, fat thank you to Ryan Salmons (dad, Brad) - he is Nick's age, has the same cancer, also played high school hockey, also worked at Discount Tires, also has the same inspiring faith and courage - he included Nick on his website to ask for prayers and support. I would like to reciprocate and ask our regular visitors to check in on Ryan at www.teamsalmons.com. Very cool young man with a very cool family and just like Nick, could use your words of encouragement.

Ironically, Nick starts chemo EXACTLY one year to the day he was pronouned to be in remission. Thank you all for walking this journey with Nick and our family - you have helped make it bearable. The last battle and victory are a testament to the power of our prayers, together.

Here we go...

Love Lori

Monday, April 6, 2009

Results Part 3

Nick had an endoscopy today and they were able to retrieve 3 core biopsy samples. Dr. Adler said the tumor was "impressive". It is solid and intertwined with the splenetic artery with several suspicious pancreatic nodules too small to biopsy. The pathologists that read the initial slides would not confirm any diagnosis, however, they think it is rhabdo relapse. They retrieved enough tissue to stain and send out for further testing and confirmation of cancer. They have to say "5 business days" for results, but pretty sure we'll hear by end of week, including a plan of attack. They provided us with pictures from the ultrasound - could've been looking for a baby for all I know... I suspect Dr. Chen will want a bone marrow biopsy, too, but we probably won't meet with her until results are confirmed.

Nick has lost 9 pounds since last Friday. He still can't eat food yet because the pancreas is the workhorse of the digestive system, getting the stomach and liver going, and he needs the pancreas to just chill for a little while longer after being poked with a needle. Kid is hungry!

Kelsey had a double header softball game tonight (she won both) so we had a bit of normalcy to an upsetting day. My wonderful girlfriends spent the entire day with me at the hospital, for which I am so grateful. I think Nick will feel better tomorrow once he has a full tummy and had a chance to let some of the reality set in. It's rough, especially when we don't know what he is up against yet.

More to come later this week.


Friday, April 3, 2009

Results Part 2

We met with the surgeon today - nice guy with bad news.  It appears Nick has a cancerous tumor, just not sure which kind of cancer.  He and Dr. Chen think it may be lymphoma caused by Nick's prior chemo and/or radiation treatment or the rhabdo is back - both are very fast growing and did not appear on the CT scan Nick had on 2/9/09.  Yes, there is a chance it is not cancer, but they don't think so.  They also don't think it is pancreatic cancer, which is a good thing, oddly enough.  Pancreatic cancer has markers you can pick up on a blood test, so Nick gave blood again for the 3rd day in a row.  Hopefully this time, they'll also remember to test the liver and pancreas levels.

Nick is scheduled to have an endoscopy guided by ultrasound Monday at 1:00 p.m.  He has to be there at 11:00 a.m. however, and the procedure will take about an hour.  He will have general anesthesia and the scope will have a camera as well as a needle to obtain the biopsy.  They will look at the pancreas as well as the celiac artery.  They decided against going in through the tummy to get a core biopsy because of the risk of spreading any cancerous cells in his abdomen.  They feel they can get enough info; I'm not so sure.  There are 20 or so different types of lymphoma, and rhabdo is persnickety - both cancers need more tissue to differentiate type.  But, I trust Dr. Chen and we'll see what happens.  

They don't anticipate doing surgery any time soon as the tumor is too close to the artery by the spleen and they can't get clean margins.  If it is lymphoma, they will do chemo; if it is rhabo, we'll go straight to radiation to reduce the tumor.  It is extremely ironic that it is almost 2 years to the day that we were in Salt Lake City Regional Hospital hoping and praying that Nick had lymphoma in his cheek instead of rhabdo.

We should have results by late Monday afternoon; Tuesday at the latest if Dr. Chen wants to consult with any other specialists or if they need to do more stains (pathology tests).  I have sent a package of information (all the scans) to Dr. Albritton in Boston to see what she thinks of all this news, too.  Dr. Chen & Dr. Mulvihill haven't seen anything like this before.  Nick is proud of that.

Speaking of, I'm very proud of Nick.  After listening to what the surgeon had to say, Nick simply said, "Ok, I'm ready, let's do it."  The rest of us aren't nearly ready yet (are we ever?) but he remains steadfast in his eternal optimism and resilience to face it all head on.  Impressive, to say the least.  I'm just numb.  Nothing else to do but "do it" - we'll start on Monday.  In the meantime, please join us and pray like crazy that it is lymphoma, or better yet, pray for healing.

With love,

Thursday, April 2, 2009

Scan results are... well.... interesting

Nick had a PET scan yesterday and the results were a little scary. His pancreas has a mass in it about 1 1/2 inch by 2 1/2 inches and activity is off the charts. There is a local lymph node also active but that is expected if the pancreas is under duress. HOWEVER, this could mean many different things. Before Dr. Chen would comment, he had another scan called an MRCP done today, which is a specialised MRI for the abdomen. Results of this scan told us nothing different than the PET scan. So, a biopsy is next. Looks like another cool scar is on the horizon. Dr. Chen is trying to get Nick in with a surgeon tomorrow but nothing is scheduled yet. I should confirm some kind of appointment tomorrow morning.

This isn't how we anticipated celebrating a year of remission and tucked away fears have come tumbling out of the firmly shut closet. We'll see if we can at least put up a temporary gate keeper to the dark door and take it one day at a time.

Until tomorrow, please say a prayer or two for Nick's tummy.

With love and gratitude,