Saturday, June 9, 2007

Nick is going to be his own statistic

Dad here....
I wanted to first thank family and friends for your words of encouragement and prayer. The chemo Nick received two weeks ago kicked his butt! Nick has lost over 25 lbs in the last 3 weeks and although he will tell you he's starving he is unalbe to eat anything substantial. The biggest reason is due to the radiation which has killed his saliva gland and is causing mucus build-up in his mouth. Any food or liquid he tries to eat gets covered with this mucus causing him to gag and makes it almost impossible to swallow. Nick is able to drink an 8 oz of a energy drink twice a day and consumes a small amount of tomato soup. Lori read that over 40% of Cancer patients die from poor nutrition and she is currently working with a nutritionist for solutions. I am supprised by the limited amout of information on nutrition and cancer.
Nick will be returning to the hospital on Sunday, June 10th for his third cycle of chemo (five days of treatment) which consists of Vincristine, Ifosfamide and Etoposide. After his forth cycle of chemo the Etoposide will be replaced by Adriamycin for the next four cycles. Adriamycin could not be used while Nick was receiving radiation. I believe this could be the hardest week for Nick because he is so thin and tired sleeping 14-16 hours each day. My hope is that after he completes the radiation on June 14th that we will begin to see Nick eating more and gaining strength and weight.
We met with Dr. Hitchcock (radiation) on Wednesday, June 6th to go over the recent CT and MRI scans and confirmed that the tumor has been responding well to the chemo and radiation. From the scans I would conservatively estimate that the tumor is 20-25% smaller from when we had the first scans performed. My concerns at the moment are Nick's weight loss, risk of infection and the chance that that this tumor could become resistant to treatment. If the tumor becomes resistant then surgery would be performed now rather then later and because of its location would be difficult. My wish is that after the eight cycles of chemo the tumor will be to a more manageable size that would allow for surgery to remove most if not all of the remaining tumor followed by additional chemo to kill any remaining microscopic deposits. The best case would be to completly kill the tumor with chemo and that surgery would not be required. I would like to see Nick off chemo as soon as possible. If anyone has success stories on Alveolar Rhabdomyosarcomas I would love to hear them.


Chris Ulvin said...

Dear Nick
I always knew you were "One of a Kind". I need to know more about your philosophy behind the slogan "Cowboy Up" as I want your cousin Nicelle to draw a characterization of your ideas! Sierra Towing is going to field a team for the American Cancer Walk-a-thon in September and I want everyone to wear a "Cowboy Up" T-shirt - featuring Nicelle's drawing and your positive attitude. In this coming week may you find more inner strength and regain an ability to eat and enjoy food. We love you Nick - The Ulvins

Mike said...


Our Family and the Lakeview ward want you to know how much you are in our thoughts and prayers...We feel a small piece of your struggles and more importantly your strengths as you work through the trials...

In the Old Testament, Book of Joshua, it says: Be Strong and of a Good Courage....that's you...Thanks for your example and know that we Love you.

Makelles Dad

jennie said...

Hello Nick - Great news that your tunor has shrunk - crappy news that you're not feeling so good. Unfortunately when you can't eat it leaves you weak and tired. I'm sure your doctors will come up with an idea to get some nutrition into you and then you will regain some of your strength back. In the meantime hang in there, "cowboy up" and know that everyone who knows you are sending you healing, love and light - Love Jennie x

Anonymous said...

Nick, my wife Karen and I know Lee well and we always ask about you and we pray for you regularly.

In 1972, Karen's mother was diagnosed with rhabdomyosarcomas. Our wedding was hastily put together and on August 27 of that year Karen and I were married.

Karen's mother is still with us and we see her often.

In spite of rushing the wedding was great! It's all worked out well.

Jim Milonas

The Traudt Family said...

Dear Nick,
Kelsey sent me the link to your blog. We want you to know that you are in our thoughts and our prayers. I have sent your story to many of my friends who are also praying for you. We were happy to hear that your tumor is getting smaller. Congrats on graduation!! It is hard to believe how fast you and Ashley grew up.
Love always,
Lori, Shawn, Ashley and Ryan

Anonymous said...

Hey Nicki -
Just wanted to let you know I'm thinking about you. Not sure what to say other than I keep you in my prayers. I was so happy to see you at Graduation!!! AND at the Bash, dude maybe you over-did-it? Slow down and let all the prayers and miracles take over. Graduation was awesome, I was very excited that Courtney graduated, but waiting for your name was intense! And, yea baby, I was one of the people standing to cheer!!!! YOU CAN DO THIS!!!


(Courtney and I have been in NY since the Bash, we've been checking on your BLOG)