Zachary Donald McCulloch

It is with mixed emotions to let everyone know that Zach McCulloch has been freed from the horror of cancer and has gracefully and lovingly earned his angel wings to fly home again. Please visit www.carepages/sublimelbc/updates to read a beautiful poem written by his father, Kevin. The McCulloch family has shown an amazing ability to love and learn through their journey and together have stayed strong in their love for each other and in their faith. My admiration and respect for them is immeasurable.

As for the family of Ashton Miller, they are touring the wonders of Paris; however, Ashton developed a fever and is experiencing the hospital facilities there, too - not part of their itinerary. Her site is: www.caringbridge.org/visit/ashtonm/journal.

As we celebrate Nick's current health while he is thoroughly enjoying whooping his friends in poker, raking in the quarters (practicing for the upcoming Vegas trip, perhaps?) and on his way to Park City to embrace winter in all her beauty, please take a moment to pray for the McCulloch and Miller families and all whose tender hearts and spirits may need an extra blessing today.

Lori

Clinical Trial Has Begun

It was nice to have a couple of weeks off from visiting the Huntsman. We all had an especially nice Christmas and we are all enjoying being able to relax and absorb the good vibes all around. Grandpa came to visit for a week and the whole family is going to take to the slopes on New Years Day. Throw in a couple of trips to the movie theaters heaped on by boat loads of food and 2010 is off to a great start.

We visited Dr. Gouw yesterday and Nick was given his new prescription of maintenance chemo/or placebo pills. He'll take 4 pills per day for 5 days each week. It is very unsettling when we are instructed to use gloves when popping the pills out of the packet. He had a baseline EKG along with the numerous vials of blood draws. And here we go...

His hair is barely coming back in - it's that nice, fine baby hair that is so soft. I'm sure I annoy him because I love to rub his head now. He let me know that he is losing his sight in his right eye - very blurry. It is not unusual to get cataracts after radiation. This is not alarming (well, not now) and he'll eventually have to have surgery to remove the cataracts. But right now, he'd like to keep an arms length from having do go under the knife.

Plenty to keep us busy for the next couple of months. Nick will have about 3 more check-ins with the trial coordinator, giving up more blood, and will have an MRI mid-February. Until then, Happy New Year to you all. As always, your constant support and prayers are always so very much appreciated.

With love,

Lori

And it's outta here!

Today at 1:00 p.m. Nick successfully had his port removed for the second time. However, even with two valium, he said it is one of the most uncomfortable, disgusting procedures you can imagine without being under sedation. Stitches look good, pain is minimal and he is good to go. We also met with Dr. Gouw and the clinical trial coordinator and Nick will begin his experimental daily maintenance chemo (or placebo) pill on Dec 28th. Interestingly enough, Nick just barely made it into the trial; it closed accepting any new entries on Friday.

He buzzed his head so he can begin the regrowth nice and neat. Last night, for whatever reason, Nick and his buddies were sitting just outside his bedroom on the floor in the hall - I guess sometimes you just gotta plop where you are and hang out. This was before the valium, too. Kory, Scooter, Kyler, Nick & Rob

On another note, the entourage of my friends descended upon Lisa last night to offer some Christmas cheer. Fairy godmothers Jennie & Denise along with Ruth and myself brought in dinner and loads of presents and spent a wonderful evening at Lisa's apartment. Lisa had it decorated so nicely, with candles burning - the atmosphere was perfect. We laughed and shared stories; I hope Lisa enjoyed the night as much as we all did. Her last radiation treatment is on Christmas Eve and then she'll gear up for 3 rounds of in-patient chemo. She is a true warrior! Here's her site again: http://www.caringbridge.org/visit/ihavewhat Ruth, Lori, Denise & Jennie

Also, for a great story of people reaching out to help someone, check in again on Ashton Miller's site, http://www.caringbridge.org/visit/ashtonm. She has recently made out her "bucket list" and through the generosity of others, she and her family are going on a dream vacation to France.

This week is going to be full of gatherings with family and friends. May you all be blessed with His spirit and grace as you enjoy this season of love.

Lori

AP23573

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 - http://www.caringbridge.org/nc/joella/;
Lisa Buechler - http://www.caringbridge.org/visit/ihavewhat
Zachary McCulloch - http://www.carepages.com/carepages/SublimeLBC/
Ashton Miller - http://www.caringbridge.org/visit/ashtonm

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,

Lori

All Clear!

Nick's scans (MRI of sinus, MRI of abdomen and CT of chest) all came back looking nice and healthy! Nick has declared, once again, that he does not want to have anymore chemo and has relayed on to his doctor. He is supposed to have 2 more rounds but he's had enough, which is totally fine. We will meet with docs on Monday morning for labs and to discuss latest scan results. Hopefully, he will be free from Huntsman for the next 3 months until next set of follow-up scans. Can it really be true?

Here's to having a fantastic Christmas with college to look forward to again in January. Here's to hair. Here's to gaining weight (Nick, not me, of course :) Here's to feeling like a human being. Here's to our network of supporters, for because of your prayers, faith and encouragement, the journey has been a little lighter.

Lori

PS: Here's to Logan in the U of U Radiology Dept - he was awesome in getting the results back to me so quickly. He likes my word (borrowed from the rhabdo-kid list) - "scanxiety" and now, I officially take off my hat!

Short Stay

Nick only had to stay over one night - doctors realize Nick has the drill down pat. He had labs drawn yesterday and his counts look great. Nick doesn't feel great, but what can ya do?

Health insurance for his age group remains to be a ridiculous exercise in rhetoric, patience and paperwork. Too confusing to go into detail (and I don't want to waste anymore energy getting pissed off), Nick was finally approved to get an MRI done on his sinus and pancreas area, along with a chest ct scan - all to be done this Thursday up at the U of U. Probably won't get results until Friday afternoon so consider this fair warning that my anxiety level will be sky high until we get the all clear.

He's off to Bear Lake this weekend with the guys so should have plenty of R & R.

Thanks to everyone with the continued support!

Lori