Sunday, July 29, 2007

Round 5 Complete!

What a week - we are all exhausted! I know this site is for Nick, but I really need to express the chaos involved in just making it through this week.

Nick was admitted on Monday, a relatively easy day of packing, doctor's appointments, grocery shopping and laundry. We were up Tuesday morning at 5:30 a.m. so the girls and I could leave by 6:00 a.m. to be on time for pre-game warm up at 7:00 a.m. for the first game (of two) of Carly's "Xtreme" softball team participation in the World Series (this is why they play softball). Fast forward: Kelsey also had a tournament beginning on Wedensday - all in all, there were a combined 14 games throughout the week - some in Park City (making wake-up time 5:00 a.m.); some in Kaysville and some in Salt Lake City. Lee and Todd were both out of town Wednesday and Thursday and Carly was understandably uncomfortable driving by herself. I was enormously grateful Nick was in the hospital being well taken care of and had visitors to keep him company. Softball results: Carly's team took 6th in the International Bracket - best place ever for Xtreme. Kelsey's team, Bukoos, made their last game competitive, however losing 4-6 (this too is fabulous as it was their first tournament in a 12 & under placement). Nick had a lot of softball players trafficking in and out of the hospital as we met up for rides, lunch, etc. Crazy.

Ok, back to Nick... He had a surprise guest:

Who could've brought in this pesky visitor? Rob?

Nick's silly godmother's?

No! It was Makelle and friends!

This special guest scared the life out of many nurses and aides as they came into Nick's room late at night to take his vitals. Very, very funny. Nurse Mary finally took "Ivy" from Nick's room and put her on a stool outside with a plastic bag attached to her stating "The buck stops here!" and people kept putting money in the bag - Nick made $11.

The clowns were a huge success! Nick's oncologist, Dr. Chen, had her mother-in-law admitted to the hospital just 2 rooms down from Nick. She was so delighted, she brought her mother-in-law to visit them and then later brought her husband. Nurse Mary, of course, made the most of it and brought in patients to enjoy, too.

The prayer quilt was used by several visitors, including Nick's aunt & uncle, Pam & Wally. It was very cool and everyone enjoyed saying prayers and tying the knots.

I was wrong about the "Red Devil"; I thought he would only get one dose of it - he actually got 4 (I usually ask for a copy of the written orders but I forgot to this week...). He seems to be doing ok; we got home Friday night but he had a tough time waking up Saturday and we didn't get back to the hospital for his Neulasta shot until late in the afternoon. The nurse suggested he get a couple bags of hydration before leaving - which he did and it did make him feel better. He is still eating Top Ramen! Now we're just watching his temp, currently at 100...

Ok, that's it for now. Thanks for checking up on Nick!

With love,


Monday, July 23, 2007

Red Devil

What a weekend! Nick is feeling pretty great these days... he used very little of the feeding tube and relied on real, solid, tasty food and yes, Jamba Juice!

We attended an awareness walk for Team Sarcoma at Jordanelle Reservoir on Saturday. July is National Sarcoma Month and there are awareness walks and fundraisers being held around the world. I found out about this walk a few weeks ago, but forgot all about it until last Wednesday (Nick would attribute my memory issues from being too close to his radiation and chemo treatments). I quickly sent out an email and we actually had about 22 friends and family members attend proudly wearing "Cowboy Up - NWR" tee shirts, compliments of Jerry & Denise's neighbors, Bob & Joyce Stacey (way to go - Denise was on the phone in minutes of receiving my email and the Stacey's generously donated the tee shirts - all done within 2 days!) We had our local Channel 2 news shooting video and Nick and various supporters were later shown on the news Sunday night. The walk was actually a stroll so that everyone (over 100 individuals), including patients, could make the distance - took about 15 minutes. The need for awareness is that sarcoma only receives about 1% of all monies raised for cancer research, with prostate and breast cancer in the forefront. If anyone is interested on supporting sarcoma research, please make sure you specifically request the donation go directly to sarcoma.

After the awareness walk/barbeque, Nick and entourage took off to the rodeo Saturday night, compliments of his Uncle Bill. He came home late that night a very happy, albeit tired, young man.

Sunday, he was up and at it again going boating with his dad, family and friends. He didn't mind too much being the driver as he thoroughly enjoyed his sister, Kelsey - age 11, totally soak his other sister, Carly - age 16, while on the water tubes by spraying her with carefully placed feet, serenaded by gales of uncontrollable laughter by Kelsey and serious whining by Carly.

Today we met with Dr. Chen and she informed us Nick will receive the chemo drug affectionately referred to as the "red devil"; aka adriamycin. This drug has a punch and he is to expect some possibly brutal mouth sores and mucusitis again. Now that his mouth is doing so well, the great medicines he has will help prevent too much irritation and will hopefully heal rather quickly. He received the "red devil" tonight and will only have one dose this week - a dose takes 24 hours to infuse (drip) into his system. When the nurse came in to give it to him (decked out in her mad scientist outfit to protect herself from getting even a drop of the chemo on her skin or clothing), the iv bag actually is covered in black plastic due to the sensitivity to light. Very ominous looking - I'm thinking, "you're going to put that into my baby?"

HE GOT HIS FEEDING TUBE OUT! He is checked in room 4519, accompanied by his prayer blanket sent to him by Aunt Chris. He already had one visitor, Jennie, and she said a prayer and tied a knot - so this week is off to a great start.

One last note - we have the new Harry Potter book and I've given Nick first dibs to read it. He has until my turn to spend the night on Wednesday to have started or he forfeits it back to me, cancer or no cancer - this is Harry Potter's final book for crying out loud!

Thanks, everyone, for checking in on Nick and especially the prayers. With love and a happy heart,

Lori (Mom)

Thursday, July 19, 2007

Back to normal

My stomach has been able to handle more food everyday and its wonderful. I have gained 4 pounds and hope to keep gaining. Last night was extra special because it was the first time I have left my house to hang out with friends. I went with my friend Rob, and my girlfriend Savanna to Target and looked at CD's. We then went to the mall and did the same thing, except we got some Jamba Juices. I got a protein boost in mine because im trying to become a body builder. HA just kidding. Later that night, me and three other guys went bowling. I could only bowl decently with an 8 pound ball but I still beat 2 out of my 3 friends. Ha i bet they felt dumb.
To answer Jay's question........ I could have gone through all the gears, but there just wasn't enough straight aways. I have a helicopter ride set up anytime I want so I think I will try and do that soon. Im also going boating this Sunday...... but of course I am the designated driver since I cant get in the water.

Monday, July 16, 2007

Mom's Perspective

It's true! He is eating! Not only Top Ramen, but yogurt, applesauce, ravioli, cereal and fettuccine alfredo. We've turned up the rate on his feeding tube so he can be off it during the night. He finished the iv fluids so he is totally on his own for hydration and is steadily increasing his intake daily - water, Crystal Light, Kool-Aid, yogurt smoothies and Coke, of course! He still is sensitive to cold so we can't take advantage of Jamba Juice yet. Emphasis on YET.

He is regaining his strength - we took a walk around the block Friday night - that's huge! Savanna was here Saturday and the gang stopped by for awhile. Nick's friend, Rob, has a new motorcycle and he stopped by to show Nick. After they came back in, Nick announced to his other friends he got to try out Rob's bike. After several blinks of my eyes and picking my jaw back up off the floor, I said, "I'm sorry, WHAT?" I really thought he was kidding until later that night I asked Nick, "Did you really?". He said, "Yeah, but I never got out of third gear, Mom." Oh. Well, that's different.

He is sleeping soundly at night,his speech is clear and his humor is back.

We are off to a fabulous week!


Sunday, July 15, 2007


Nick typing...

The past 3 days I have finally been able to keep food down. Its slowly getting better everyday and I am so happy to finally start eating again. It feels great and makes me feel better too. I have found that Top Ramen tastes really good so I eat that everyday. My spit still isn't normal but is still slowly getting better. Hopefully by the time I go back into the hospital for round 5 I will be able to take my feeding tube out. It will be so much easier when its out, because I will be able to go and hang out with friends when I am feeling good and all the little kids will stop staring at me when I walk past them. Ha, its not often they see someone with a tube sticking out of their nose.

Well keep in touch...


Sunday, July 8, 2007

The Latest

Nick here......
Im posting this to let everyone know my current condition.
I still have the frustrating mucus in my mouth that is preventing me from eating, and forcing me to continue using a feeding tube. I hate it cuase all I want to do is eat a meal without gagging and enjoy my food. Hopefully this mucus will be gone soon though.
I have to get another MRI sometime next week I believe, and it will show the progress of the tumor. I am eager to see how much smaller it is. I dont want to have to do more treatments after the next 4 mandatory ones, so hopefully it will all be dead by then.

Wednesday, July 4, 2007

Happy 4th of July

Which one do you think is the cancer patient?

Dad Here,
Nick continues to improve and it's wonderful to see him smile. I am so greatful to John Huntsman and the wonderful facility he built and continues to support. He is in the process of selling his business and plans to donate close to a billion dollars towards cancer research. Nick would like to invite everyone who hasn't already made plans to view the firworks from the Huntsman Center. It should cool down by 7:30 pm and the easiest way to get here is to head East on 100 South until you deadend at the top of the hill above the University. Go to the forth floor and we will be in room 4502 or on the patio. We look forward to seeing you!

Monday, July 2, 2007

Here we go! Round 4

This has been a very interesting week, so let's skip to the highlights. Savanna visited quite often and diligently watched episode after episode of LOST with Nick.
By Friday, Nick came with us to attend Carly's softball tournament (Todd brought his motor home) and he spent about 5 hours at the ball park, taking it easy in a lounge chair. It was a particularly beautiful evening with a spectacular yellow full moon.

Today, he had to have a mugga (sp?) scan to make sure his heart can withstand the new chemo he will be receiving July 23rd for round 5. Just typing that sentence seems very ridiculous. We then met with his oncologist and after she scolded the radiologist for the damage done to Nick's mouth and throat, she apologized to him for "overdoing it" with the last round of chemo. She is reducing his stay at the hospital this round from 5 days of chemo to 4 days because of the weight he has lost - Nick should be able to go home on Friday. She also took the time to show us the comparison of Nick's MRI's from April 12th vs. June 8th. She said his tumor has reduced to an 1/8th of its' original size after just 2 rounds of chemo. With this encouraging news, Nick went ahead and decided to go ahead and take on round 4 and was admitted this afternoon. The bonus is that the receptionist for Floor 4 saved the special suite/room for Nick - it is an awesome room with an adjoining separate room with a real foldout sleeper couch for guests (wahoo!) as well as an unbelieveable view of the city so the 4th of July celebration of the entire Salt Lake valley will be amazing from his room.

He is only able to drink very little water and Sprite but we are confident the additional hydrating fluids he will get this week will boost his saliva glands and we hope to get his feeding tube out by the time he is checked out to go home on Friday. His weight seems to be stable and he'll continue to try and eat different foods. His mouth sores have completely healed and he never did have any more pain medicine while at home. So watch out MUCUS, your days are numbered...

We also found out that the hospital allows patients to bring in their pets to visit. I laughed all the way home just thinking about bringing Scooter to the hospital. Nick just simply said, "no".

One last note: Nick has a second cousin, Amy, who also has cancer. I'm not sure of her specific situation - perhaps a relative could post a comment. He has another cousin, Dan, who races motorcycles and has dedicated his racing to both Nick and Amy, just to let them know they are on his mind. There are quite a few racers around the paddock that have these stickers on their bikes. Below are a couple of pictures of the artwork.

Thank you, the prayers are truly being felt. We wish everyone a wonderful July 4th holiday.

Lori (Mom)