Monday, December 7, 2009


Nick and I met with Dr. Gouw and his entourage this morning and he graciously accepted Nick's decision to stop any further chemo treatments. He is delighted in the results of Nick's scans, as are we! He did, however, encourage Nick to consider Ariad's clinical trial (AP23573) for maintenance chemo, which Nick did qualify for, after verifying the exact specifications. He was clear to point out that this trial is not curative, only slows down recurrence as Nick's risk is still very high. Nick will take one pill a day, 5 days a week. If he really receives the drug and not the placebo, the side affects should be minimum. Nick said the deal breaker would be if he could grow his hair back or not, and they assured him he would. Basically, since Nick is being carefully observed anyway, why not participate in the trial? He can back out at any time. The only difference is that he'll get scans every two months instead of three. The sobering statement was said when Nick asked how long he is to take the pill and the response was, "until your disease progresses." Oh. He will begin this trial in a couple of weeks and he gets his port out on the 16th - he will be one happy kid!

We acknowledge your power of prayer, yet again, in humble gratitude. Answered prayers of healing, prayers of strength, prayers of comfort and prayers of faith. We've been very blessed by His grace and light, and blessed by the enormous support of our friends and family.

As Nick embraces his second miracle of health, we would like to extend our prayers for:
Joella Elizabeth Childress Carlyon -;
Lisa Buechler -
Zachary McCulloch -
Ashton Miller -

It was Ashton's mom who posed the question, "How do you balance the reality of this disease with hope?" when a very wise man, whose own wife lost her battle with rhabdo responded, "It is impossible to balance what you know about this disease with hope. Forget balance. There can only be hope. Period." I love that answer and he changed my perspective back to where it needs to be. Some might think it is easier to do when we can't find any cancer growing in Nick, but let me assure you, it isn't. We may have to adjust what we hope for, but we must never, never lose hope.

Thank you all,



Anonymous said...

I'm very pleased that the doctors respected Nick's choice. The clinical trial sounds fine and dandy and again, should Nick's side effects be too much, he has the option to cancel. Looking forward to seeing lots of hair. Looking forward to a long time of positive thinking and belief. So.. now its time to live, laugh and enjoy a little normality. Daily prayers of healing and strength will continue. Love you guys -
GM Jennie xx

Mark Larson said...

Nick, glad to see you can finally kick chemo to the curb. After all you've been through you can still come out on top in fashion. Now it's time to get ready for some late night parties at the library next semester. O ya, and we can't forget about our upcoming trip this January...

Mark Larson

Anonymous said...

Beth here. I don't seem to be able to figure out how to get "on" as a regular person to make comments, but I am SO glad to learn that you continue to manifest miracles in terms of good news and defying odds. Your journey is an inspiration about the power of right thinking, a connection with the Divine, making choices, and still having goals and plans when I am sure at times it would be easier to lay down and give up.

Chris Ulvin said...

Dear Nick,
I will post as I read AP23573. First thought that comes to mind is I must continually pray for you, for family, for friends, for strangers as death is 100% certain and none should be lost. As I continued to read I stopped at "until your disease progresses" and thought - Nick could take this pill for years. Isn't that like faith - one needs to embrace it daily for the rest of their lives. And lastly, hope is assured by faith which is assured by the word of God in the Bible, which is assured by life experiences. Nick, you have experienced miracles in your past 20 years of life. May faith guide you in your future years. Love, aunt Chris

Trixie Rogge said...

I am so glad to here about your great news!! Thank You for sharing your story. I will continue to keep you and your family in my prayers.
Trixie Rogge from Sioux City, Ia

Anonymous said...

"We know what happens to people who stay in the middle of the road. They get run down."

good on you Nick for making your decision. may you check out both sides of the road and live life. LC