Friday, December 31, 2010

...and a happy new year!

Christmas was pure magic! We all enjoyed a wonderful Christmas Eve dinner at home, played card games through the night and was serenaded by Carly on her guitar and Kelsey with vocals. It took nagging of super-human strength for Kelsey & Carly to get Nick out of bed Christmas morning, but once up, the morning was terrific.

It has been a rough week for Nick - he hasn't felt too well but only had to drain his tummy once since Christmas Eve. Looks like the chemo is kicking in. His counts were near zero on Monday, 27th. Both Lee and I caught monster colds and how Nick didn't catch it is miraculous. Grandma & Grandpa arrived on Wednesday ready to help us ring in the new year. Aunt Chris & Uncle Stan (with cousins Jessica & Kris) zipped in for a super quick visit, too.

On Thursday, 30th, twenty of us WACKY warriors arrived at ABC's studio to support Nick's win of the Les Schwab, "Do the Right Thing" grand prize award. I had told Nick I didn't think he was going to be on tv, other than when they pan the studio audience, but I was wrong - way wrong. Mortified, Nick was quickly set up with a microphone and promptly placed next to the show's hosts for a live interview with a representative of Les Schwab. Afterwards, he glared at me, swearing I set him up and moaned, "I would've worn my Penguins hat, a different shirt and...." The highlight of the event was when Les Schwab went above and beyond the gift of the grand prize (a $1,000 gift certificate towards tires at Les Schwab) but a surprise donation to Nick's foundation with a check for $2,500!!!!!! Wow! Very, very cool! Here is the link if you would like to watch the clip of Nick:

Please remember a prayer for two very special Rhabdo Angels. Allen Bowman passed away on Tuesday - and Aiden Binkley - Also, I'm following two particularly cute little ones that could also use some support - Vinny DiGerolamo - and Jordan Gourley - We are all in this together and thanks to Les Schwab, we will help make a difference in the future of children and young adults with cancer.

Nick is on the mend and will have the next 10 days to enjoy before chemo starts again on the 10th. Blessings to all for a healthy and happy new year. Thank you for your continued support, prayers and warm wishes!

With love,


Thursday, December 23, 2010

All I wish for Christmas is ...

... a drain.

Yesterday, Nick was scheduled for another paracentisis to drain off more fluid in his tummy. But he thought maybe he was doing pretty good and asked our nurse, Katie, to cancel the appointment. Last night he decided he was wrong.

This morning, because there were no appointments available, he realized he was in for another fun-filled visit to the ER. As he wrestled with his bed for a couple of hours, our nurse Katie was able to schedule a "procedure" for Nick to get a drain put directly into his abdomen, based on Dr. Gouw's recommendation (I think...) We knew this might be a possibility if the fluid continued to come back at such a fast rate. By the time we got to Huntsman (no ER - hooray!), Nick was more than ready to have the drain put in; extremely uncomfortable and waddled like a 9-month pregnant woman. We got home 6 hours later, drain in place, Nick feeling much lighter and happy that he finally had room to eat. He told his nurse, "I'm going to be feeling so GOOD for Christmas now!"

We also got a surprise email today - it reads:

"Hi Lori,

Congratulations, your nomination for the Les Schwab "Do the Right Thing" contest, Nick Raitt, has been selected as the Grand Prize winner. We are going to make the announcement on-air next Thursday, December 30th during the taping of "Good Things Utah." We would love to have Nick present and any supporters who would like to join him. Nick is an amazing young man, a role model to other cancer patients and a perfect example of "doing the right thing."

Please e-mail or call me at your earliest convenience and again congratulations to Nick. I hope he is doing well.


Barbara Syphus
Account Executive/KTVX - ABC4"

So, all those that would like to join us on the 30th, please email and let me know! ( l I didn't even realize there was still a contest on for the "Grand Prize" and I forgot to ask even what the prize is... ABC has also asked for some WACKY pictures to air on TV - it'll be a blast!

Merry Christmas, everyone! Thank you all so much for your continued support, love and prayers. Our entire family is very humbled and grateful.

With love,

Monday, December 20, 2010


What a weekend! Nick was invited to attend the concert in Salt Lake City to see the Mormon Tabernacle Choir (affectionately referred to as the "Mo Tabs") perform with David Archuleta Friday night. He was a little concerned, not sure if he would appreciate the talent but as he strolled through the door later that night, he declared, "I gotta admit, the guy can sing." He thoroughly enjoyed the entire evening: the music, the singing, the Christmas decorations and the company. He was fairly uncomfortable with his tummy already filling with fluid, tho.

Saturday night Nick attended the Raitt family Christmas party and had a great time.

By Sunday morning, he asked if I would take him to ER to have his tummy drained (paracentesis), knowing he would be incredibly uncomfortable if he had to wait until Tuesday. We chose the U of U because they are connected to Huntsman, both logistically and shared files. We got there about noon; a fairly slow day. Nick was clear to state he had cancer in his abdomen and needed to have a paracentesis to drain the ascites. Took a couple of hours and 3 attempts to draw blood for ER to determine they would do the procedure. Around 3:30 they drained 3.5 liters. They originally brought in only two 1 liter bottles and Nick said "You are going to need more of those." When the doctor was done, she admitted she thought Nick had been exaggerating and complimented him on hiding all that fluid so well. However, they felt it was necessary to send off the specimen collected to make sure he didn't have a bacterial infection in his abdomen. 7:30 p.m. it was determined Nick has cancer in his abdomen and the fluid is called ascites. On the bright side, our doctor was extremely nice, we were able to watch every single NFL highlight on TV and Nick felt enormously better.

This morning, Carly joined Nick and I as we took off to be at the hospital by 9:00 a.m. Nick's port was acting up - neither side was working so the nurses had to draw blood the old fashioned way. By 11:00, they still couldn't get it to work so they gave him something in the lines that helps clear the port. By 12:30, both lines were working again but his urine labs came back with a problem so he had to have iv fluids for a couple of hours before chemo could start. By 3:30, his labs were still low but was given the go-ahead to get chemo anyway. We are thinking having his tummy drained yesterday messed up his counts. By 5:30 p.m., he had three different chemos infused and was sent home with mesna and hydrating fluids in a to-go bag. Another long day at the hospital but it didn't seem too bad - Fairy godmother Denise came to visit in the morning and Nick's dad came in the afternoon. Carly & Nick chit chatted and laughed most of the day with various visitors from other hospital friends.

His tummy is already filling up. We are hoping the chemo kicks in right away like last time but will plan on having another paracentesis later in the week. Back to the hospital tomorrow for his neulasta shot and to get his port de-accessed. Hopefully it will take less than an hour!

We are now getting ready for the rest of the week, one day at a time.

Blessings to all for a very Merry Christmas!


Wednesday, December 15, 2010

Update, Part II, III, IV ...

So then...

Yesterday morning on our way to the hospital to get Nick's tummy procedure done, Dr. Lambert called again. She asked Nick to call her assistant to give her the insurance info so he can get pre-approval, etc., getting all our little ducks in order. So he did.

The procedure was a breeze, again I did not watch. They only drained 3 litres this time and he felt immediately better. We dropped off coconut bread to all of our favorite nurses on the 2nd floor with everyone wishing Nick good luck in surgery. After a much deserved late breakfast, he was back home in bed sleeping like a baby as I was finally able to go back to work for a few hours.

On my way home, again at 4:45 p.m., Dr. Lambert called. This time she said she was still having concerns with the surgery, even after hearing back from Dr. A, and now wanted to talk to Dr. Gouw, Nick's oncologist. She feels the surgery may be just palliative, not giving Nick enough benefit to offset such a huge surgery. She asked if I would coordinate a phone call between her and Dr. Gouw and I said sure. I also said we are all guessing at this point. She said if we are all equally guessing, she is up to the surgery if Nick is. I called Dr. Gouw's nurse, Katie, and she would arrange the call. But as I walked in the house, Nick called for me from his bedroom and dropped a bomb - he found another lump in his abdomen. He thinks he could feel it now that his tummy had been drained. I felt it, too. He asked me to set up a scan, and off I went to call Katie again. Because Nick is allergic to CT contrast, he has to be premedicated 13 hours in advance. We went ahead and had him start taking his premeds at midnight, being optimistic in getting a CT scheduled for noon Wednesday. Dr. Lambert called again at 7:00 p.m. (9:00 p.m. her time) asking if Dr. Gouw was going to call her. I said he was going to call tomorrow and she said that was unfortunate as she would be in a 20 hour surgery Wednesday. 20 hours? But she said he could give her a call on her cell and when she took a break, she'd call him. Hmm. Respect for her growing by the minute.

Sure enough, Nick was scheduled for CT scan at noon today, but we had to be in at 10:30 for him to start the oral contrast. Meeting with Dr. Gouw scheduled for 2:30 to review results which actually turned into 3:30. Lee, Nick and I met with Dr. Gouw and Katie - and I quote Dr. Gouw's words, "The cancer has come back with a vengeance." Dr. Gouw spoke to Dr. Lambert and the surgery is officially canceled and will not be reconsidered, with an exception of emergency complications. Within just 2 weeks, those nasty little "peppercorns" have been growing like crazy throughout his entire abdomen. The good news is that none of his organs, including his lungs, have been infiltrated.

Nick will begin chemo on Monday - the first round taking about 6 hours, out-patient, with 3 different chemos. He'll have his second round Jan 10th with 2 completely different chemos - just like last August & September. Dr. Gouw is also researching a couple of clinical trials to coincide with Nick's treatment.

Shell shocked again, yet so very thankful we'll be home for Christmas and Nick should be feeling ok until the week after Christmas. Nick's biggest concern is not knowing if he'll be able to be a camp director for First Descents this summer. Now he is back trying to make arrangements to ride a bull before Monday's chemo. I'm going to watch "Elf" again. And so to end on a humorous note, here is the cartoon we saw in the radiation waiting room today that Nick thought was hilarious:

Good night, everyone.
Love Lori

Monday, December 13, 2010

Update, Part I

Finally, at 4:45 p.m. after another 2 batches of coconut bread, 5 loads of laundry, dishes, dusting, working with the plumber, going to the store and decorating the tree, we finally heard from Dr. Lambert! She apologized for the delay in calling, as she had hoped to talk to Dr. Andtbacka one more time before he left for the other side of the world - she didn't. She is unclear about the remaining tumor left on Nick's small intestine, fearing it is intertwined, making her unable to resect the tumor. She explained there are many blood vessels there, etc., and that you can't live without that part of your small intestine, therefore didn't feel the surgery would be beneficial for Nick. She wanted Dr. A's opinion on the appearance of the tumor.

I told her that when Dr. A came to talk to us while Nick was still in recovery after his laproscopy, he described the tumor as "loose". Dr. Lambert said that if this is the case, this is good news (a loose tumor is resectable) and now considers the surgery beneficial, especially now that Nick has ascites again. She will shoot him an email tonight and if he confirms, she'll go ahead and schedule the surgery. She'll call me tomorrow.

She said to plan on coming out a couple days before surgery, sometime after the first of the year, to meet the surgical team, blood tests, current ct, etc. After we hung up, she called back again saying she will rearrange her schedule and can schedule Nick for Dec 21st. We'll discuss details and make flight arrangements after she calls tomorrow.

So, after all this information, making plans still depend on another phone call. But I'm a much calmer person now and tomorrow doesn't seem that far away. Neither does the 21st. Nick is just anxious for tomorrow as his tummy is getting pretty bloated and he is uncomfortable. We are to be at the hospital by 8:00 a.m.

Thanks, everyone - more tomorrow...

Love Lori

Friday, December 10, 2010

STILL no word!

Regardless of my phone messages left throughout the week (and there were many!), along with short, consoling conversations with the staff at Huntsman and UMass, tears, cursing and full-on adult temper tantrums, we still don't have any definitive answers - even if the surgery is still on, let alone when. A very, very frustrating and long day. The surgeons have talked to each other, but not to us. Last call I got was from Dr. A's physician's assistant, Melissa, to let me know Dr. A had been in surgery all day, had two more to go then would call me later tonight. It's now 10:00 p.m. - doesn't look good. Dr. A is an oncology surgeon so I know he was a busy man saving lives today. But still...

Nick was to have met with Dr. A on Tuesday to see how the healing was coming along from his laproscopy procedure, but Dr. A was on call at the VA so we met with Melissa, and she is quite competent. Confirmed cancer is active and Nick is now getting fluid built up in his abdomen again. He isn't uncomfortable yet, but you can see the swelling and his tummy is still tender. Melissa set up an appointment to have his tummy drained again next Tuesday, which can be canceled should we need to go to UMass next week.

I'm crabby. So I baked all day long, watched "Elf" again for the 5th time this season and topped the night off going to a neighborhood Christmas party, which included a performance by a beautiful and brilliant pianist. Still crabby. But Nick isn't.

We'll be getting a Christmas tree tomorrow and that will definitely pick me up. Probably. Maybe not. We'll see.

With love, regardless of the self-pity, self-absorbed and selfish attitude I am projecting tonight. I'm sure the patients that were on the receiving end of Dr. Andtbacka's and Dr. Lambert's extraordinary surgical gifts are extremely grateful tonight and I am able to give a smile and a prayer for their complete recoveries.


Monday, December 6, 2010

No news yet, but we have pictures!

Still waiting for biopsy results so I thought I'd update on our trip...

Wednesday was beautiful and we spent some time on the beach. My favorite part is walking behind Nick, Carly & Kelsey, observing how well they all get along. The three of them together, laughing and teasing, which carried over to the room they all shared, as giggles continued on through the night.

We did some shopping, went to movies, experimented with local dining and explored the facilities at the Marriott. We saved our energy for the much anticipated trip to Disneyland on Friday. Much to Carly's enormous disappointment, she caught a flu bug and Nick had complications from his procedure so we only lasted 5 hours at the park. We did manage to go on our favorite rides and view the spectacular Christmas decorations, with Carly and I wearing our Minnie Mouse ears the entire day. Nick and Carly were in their respective beds by 5:00 p.m. while Lee and I brought back chinese food for everyone. The giggles continued.

Saturday we took off to Las Vegas. While Nick & Carly continued to recouperate, Lee and I took Kelsey to the Stratosphere as she boasted to have nerves of steel, stating the "Big Shot" wasn't going to be that big of a deal. So she and Lee took off while I nervously stayed on the observation deck, hugging the inner wall and turning green watching the ride where people dangle precariously over the edge to the right of me and people (idiots, perhaps?) jumping off a controlled free fall platform to the left of me. Lee & Kelsey came back in, Lee grinning ear to ear and Kelsey walked with wobbly legs, breathlessly telling me about how the camera on their side wasn't working, but they offered her to go again for free (no lines); she declined. She wobbled for the next few hours.

We met up with fairy godmother, Jennie and her husband, Dean - and James, Elizabeth, Melissa and George for an outside dinner at Mon Ami - right across the street from the Bellagio so the kids could see the water show throughout dinner. Delightful! We excused Nick to exercise his poker skills while Lee and I walked the girls across the street to see the lobby and gardens at the Bellagio. The decorations were spectacular!
Lee flew home early Sunday to catch his flight to Chicago. Nick stayed as he is going to the rodeo on Monday and the girls and I headed home with a pit stop in Cedar City to visit some family. Turns out Lee's flight was delayed 4 hours due to fog but he made it. Nick will be coming home tomorrow; Carly is back at school scrambling to study for finals next week and Kelsey is back catching up on her homework, with volleyball starting this week. Ahhhhh, normalcy!
Love Lori