Thursday, March 26, 2009

www.nickswarriors.org

Dave Sheffield, our amazing controller in our office, took upon the task of designing a website for Nick. We asked him to do this as we are getting more and more involved in various fundraising and awareness events and thought a website could post all the volumes of information in one spot. Please visit and learn more about:
  • Country Music Marathon
  • Team Beyond Cancer
  • Team Sarcoma
  • Relay for Life (link to view Nick's DVD)
  • Charity Softball Tournament
Thanks, Dave, for your hard work - it looks fantastic!

Nick is finally starting to feel a little bit better; I think he caught Kelsey's vicious cold virus and with his new normal white blood cell count of 4, it takes him twice as long to recover. Kelsey is still on the mend after week two. We took him to the doctor last week to see what was up with his extreme fatigue and they discovered a low glucose level. Could be from a poor diet or possibly his pancreas hasn't bounced back 100%, or a gazillion other things from having such brutal chemo and radiation treatments. His next scan is on April 1st so please keep him in your prayers. He's looking at ONE YEAR of remission!!!!!!

We all went up to Boise, Idaho to watch NCAA men's basketball games and we had a blast! The marathon training has been rough, to say the least. Lee is now the only family member that has stayed the course.

The fund raising has been incredibly successful due to the amazing network of friends of Jennie & Dean Magnesen, pulling in over $10,000!!!!! A special thank you to Colin Fryer, of Red Cliffs Lodge in Moab, Utah - he sponsored Nick and his teammates "Team Beyond Cancer" as well as an extremely generous gift for the marathon. Jennie and I still tear up when we talk about his generosity and the effect his gifts will have on the young adult cancer survivor community and childhood cancer research. Amazing.

I'll post after April 6th when we meet with Dr. Chen.

With love,

Lori

PS: Nick got an "A" on his last English paper!

Sunday, March 8, 2009

Relay for Life

As you may know I was asked to speak at the Relay for Life kic-off event this Saturday, and I am thrilled to say that I did not cry during my speach. I can feel myself getting better at sharing my story everytime I tell it.
After the event was over and people began to leave, Jaimie (who runs the davis country relay) came up to me and asked me if I wanted to be their poster boy. After talking a little more with her what a poster boy is, she explained to me that they would like to take some pictures of myself with a child and use it for their advertisements. I was happy to help... so looks like other than a public speaking career, a modeling career is now a choice. Ha just kidding.
But all in all the kick-off event was a success and I had a good time. Now I am off to school to write papers and stuff.

Thursday, February 26, 2009

Marathon, Relay for Life, Chicken Soup, etc.

So far, only Nick and Lee have been diligent about training (in our family, anyway). The girls and I are very sporadic. However, donations for the marathon are coming and it is getting exciting.

Nick has been invited to be a guest survivor speaker at the North Davis County Relay for Life kick-off event on March 7th. We are putting together a short video and working on his speech. We feel we've tapped out our family and friends with the marathon and softball tournament, but we will be putting together a team for the actual relay on July 31st & August 1st. Let us know if you want to be part of the team. I'll post more details about Relay for Life after we attend the kick-off event.

As Nick was honored to speak, I was honored by having my "Moments" essay published in the new "Chicken Soup for the Soul - the Cancer Book" which will be on sale in book stores March 3rd. I have been given permission to sell the books for fundraising purposes (without promotion, however). We will set up a booth/tent at the relay and all the proceeds from the book sales will be earmarked for childhood cancer through the American Cancer Society. This is awesome!

If anyone would like to purchase the book, email me (lorib@quadrantliving.com) - it costs us $7.50/book and we will re-sell for $15.00/book - 100% of the profit will go 50/50 to both CureSearch & First Descents. Is this promoting? Or if you have a special someone that would like it, I would be happy to send to them for free.

Another note of interest - Nick will be attending a Young Adult Survivors Conference in Missoula, Montana in May, hosted by Camp Mak-a-Dream. This is designed for individuals in their 20's & 30's to address issues of survivorship: health care system, advocacy, nutrition, relationships, employment, etc. He is also already signed up for his second trip with First Descents, this time in Wisconsin in July. I'm extremely proud of him embracing his new, stronger identity in making a difference for the future of many young adults. Now that he has stopped saying, "Ow, ow, ow, ow, ow, ow...." as he walked downstairs because his legs were so sore from running 11 miles, he is absolutely loving life. (I'm silently looking up to say, "thank you" again.)

Off to the gym I go...off to the couch is where I want to go...

Lori

Monday, February 23, 2009

11 miles..... and no sponsors

Nick here,

So friday I decided to go running since I have been slacking lately. Good on swimming and biking but little running. I ended up running 11 miles on Saturday, but ended up paying for it as I have been sore for the past two days. My cardio is there, its just my legs that need to get whipped into shape soon for the marathon in April and extreme triathalon events in May & July.

Also, I have been hitting up some businesses looking for sponsors or donations for the triathalons that I will be doing this summer. No luck. They all use the economy right now as an excuse not to donate. And the big corporations won't even talk to you.... they make you go online and do it that way. But online you can't really show them what you are about, but only check in boxes of what they will get out of it. So it has been a learning experience. So far we have one sponsor that will provide us gear for the triathalons, and one personal donor of a hundred dollars. So if anyone is interested in donating that would be WONDERFUL. You can watch our video if you go to: http://www.youtube.com/watch?v=gHDoWqCY-QQ. You can donate at http://www.active.com/donate/teambeyondcancer.

Thanks Everyone!!!!! I'll stay in touch

-Nick

Monday, February 9, 2009

Tummy Ache

Nick has had a tummy ache for the past couple of weeks. We thought (hoped) it was just the flu that is going around. We finally went to the doctor's office last Friday and had some blood work done, as well as have a CT scan done of his abdomen this morning. Good news - it is NOT cancer! Bad news - it is acute pancreatitis. His lipase counts (for the pancreas) is 3,582 when normal range is anything below 300. The doctor told Nick, "You're either an alcoholic or you have had chemo." Hmmm. We'll probably go with chemo. He also said, "I've never seen anything present like this before. Usually when someone has this high of a lipase count, they are in ER and have to be hospitalized for 2-3 days with iv fluids, with nothing to eat or drink in order for the pancreas to chill for a few days. You sure you don't need any pain pills?" Nope.

Apparently alcohol can trigger an episode as the pancreas flips out when in a weakened state as it tries to convert the enzymes. I believe someone over-indulged when celebrating his 20th birthday party 3 weeks ago. More good news (as a mother, anyway) - Nick cannot consume any alcohol again; his body just can't tolerate it. Since his body's immune system is already severely compromised from his cancer and treatment, it is probably a good idea to completely avoid alcohol (got that, family and friends?). I told Nick sometimes God gives you a little extra incentive when it is difficult to make the right healthy choices. No fun when your own body tattles on what activities you have been up to...

He will need to be on a clear liquid diet for a couple of days and will have to sit out on marathon training this week. His oncologist doesn't seem to think there is any relation to cancer relapse so he should be just fine. He goes back at the end of the week to have his blood work done again.

What a crazy situation when you are thrilled with an acute pancreatitis diagnosis and I don't even have to threaten to beat him for drinking alcohol - his body will take care of the consequences for me.

That's it for now!

Lori

Friday, February 6, 2009

Training

Nick here....

Just wanted to inform everyone that I am doing well in my training. As of Wednesday I swam 900 meters so I was pretty excited about that. And yesterday was the hardest spin class that I have had yet. (I thought I was going to be sick!)

Ha thats about it though. Shortest blog entry ever I think. Oh well. I will write again soon.

-Nick

Tuesday, February 3, 2009

From Mom...

'Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light.'

Someone from our rhabdo support group shared this today and I loved it! Nick has truly been brilliant through his challenges as I watch him grow and learn from this mysterious teacher called cancer.

Nick was very brief when writing about his encounter with Lee's Strategic Coach class we visited last week. Here's my spin...Lee coaches hundreds of entrepreneurs, mainly out of Chicago, on a quarterly basis. Each one has personally followed Nick's journey and have expressed their heartfelt wishes of healing, prayers, words of encouragement, etc. But it is difficult for Lee to convey the magnitude of these messages to Nick of just how many people from all over the world are supporting him -just not the same as hearing it directly.

Lee was hosting a group of about 50 in Salt Lake City and invited Nick and I to stop in to say hi - Nick would have the opportunity to meet some of the people that have been rooting for him over the past 18 months. We snuck in as Lee was wrapping up before the lunch break. He announced that he had brought in his Positive Focus to share and asked Nick and I to come up front. I have met several of the participants and staff over the years, so everyone waved and said hi to me. Then Lee said to them, "And this young man here, is Nick..." The entire room stood up and gave Nick a full-on standing ovation! The compassion and warmth was overwhelming! Nick and I stood in between Lee as Lee tried to regain his emotions (applause still going). He smacked Nick on the side of the head, but still couldn't find the words to speak. He smacked him again, this time getting a worried look from Nick that silently stated, "Hey, get a grip before you hurt me!" Lee turned the time over to the group to go ahead and ask Nick anything they wanted.

The group continued to stand as one after another asked Nick questions and tearfully shared stories of their own journeys made easier by Nick's inspiration. Some questions were tough, "My friend is dying from cancer and has given up. What can I say to him?" to my personal favorite, "Are you cancer free?" Nick's answer of being in remission for 10 months brought out another round of applause. When they finally broke for lunch, several stayed to shake Nick's hand to offer congratulations. One friend of ours is a paraplegic. He told Nick, "You inspire me, man! Watch, I WILL walk again someday!" Nick 100% believes he will. Another friend had taken a Gratitude Rock with him when he had to have prostate cancer surgery. When the nurses asked him why he had the rock, our friend responded, "To remind me that this is nothing compared to what my buddy, Nick has gone through"

This was a very important afternoon for Nick. He got to personally witness the strength of just a few of those that have been in his corner helping his fight. But more importantly, he got to thank them. Very impactful and very beautiful. I am very thankful to Lee and Strategic Coach for sharing this amazing group of powerful individuals with our family.

On a lighter note, I'm training for the marathon and I truly hate it. I happen to hate cancer more, so I'll keep doing it. I'm going to try and take some pictures of our various family members in their misery (feel free to forward any picts you may have and I'd love to post them here, too). No pictures of me - that isn't funny.

With love,

Lori