Wednesday, September 2, 2009

Kitchen sink, here we come!

It's been a busy couple of weeks. I've tried to encourage Nick to update this blog personally, but after he posts on his Facebook, he's lost his focus. So you all get my perspective.

Nick had an amazing time in Colorado. He drove for 7 1/2 hours and picked up his brand new kayak courtesy of Brad from First Descents (it's bright red and he has named it his little red Corvette; are you singing the Prince song now?). He drove for another 1 1/2 hours to Matt's place in Boulder. He didn't even unpack as they unloaded the kayak first and headed for the water. How he can squeeze his long legs into that kayak is a true mystery. Matt and Kelsey are part of the "Team Beyond Cancer", who took 5th place in their first triathlon. Kelsey and her boyfriend, Brooks Baldwin (a pro kayaker and videographer), also live in Boulder and took Nick kayaking during his visit, too. Nick caught up with Brad in Vail and they headed down the Shoshone river for some more kayaking. Nick said this was a level 3 rapids; perhaps a level 3+ compared to the rapids he went on in Montana. He went swimming a few times, including dropping my camera in the river (could still download a few picts - see below). Let's not forget another skydiving adventure with Brad (Brad's first). Nick said this was a little more scary than in San Diego because the plane dove at the same time they jumped and descended together. Plus he also wore shorts; made for a little chilly experience. Ahhh, good times, exactly what Nick needed to refresh his spirit. Gigantic thank you to Brad, Matt, Kelsey & Brooks - you have no idea what an amazing impact you have had on Nick. Your generosity of time, gifts and most of all friendship means so very much to Nick. You gave him him the opportunity to embrace life as a healthy 20-year-old having a great summer with his buddies.
Nick & Brad
Matt, Kelsey, Brooks & Nick
Kelsey & Nick
Just as Nick is getting the bunny fuzz on the top of his head - when you can't help but rub his head as he passes by - we met with Dr. Gouw today and Nick will start chemo next Wednesday at 10:30. He had a PET scan on Monday and the results are great. He also met with a cardiologist regarding his irregular heart beat; he has a slight sinus arrhythmia but they don't seem too concerned. He wore a heart monitor for 24 hours and we'll have the results next week. He will have a follow up echo done on the 21st. They don't expect any surprises, nor anything to worry about. LOVE that.

Nick's treatment will be 8 to 12 months. It is a very interesting protocol: week one is a one-day infusion of vincristine, dactinomycine and cyclophosphamide; week four is a daily infusion for five days of cyclophosphamide and topotecan; week seven is a daily infusion for ten days of temozolomide (pill) and irinotecan. Weeks following repeat this schedule. All outpatient - yay! We'll will have some home nursing visits for iv hydration, labs, etc. The only part we are anxious about is that they have decided Nick should have radiation during the first six weeks of treatment. We meet with Dr. Hitchcock on the 9th as well. Radiation is a rat bastard all on it's own but at least he'll get it out of the way at the beginning (so easy for me to say). Nick has had his body beat up extensively so we have to watch his counts closely. Cool thing to consider is that Nick is making medical history.

On a maternal note, I think this week has been tough on Nick as his friends have gone back to college, the rush from the Colorado visit behind him and a full year of chemo ahead of him. He bounced back finally yesterday when he found humor in making fun of my age. Seemed to propel him back up to speed. Also, he has an elk hunt and, hopefully, attending the big fight in Vegas - Mayweather vs. Marquez - in the next couple of weeks. The biggie we're trying to work through is a cruise with his dad in New Zealand the first of the year. Ya gotta see it to make it happen...

FYI - the 2nd annual charity softball tournament is being held on the 11th & 12th. Please contact me at if you have any questions about this event.

Please say an extra prayer for Zachary McCullough and his amazing family. Visit his website for some truly inspirational writing. The family's perspective and strength is unsurpassed by anything I've ever witnessed: .

Actually, please say an extra prayer for anyone you think is having a hard day. It matters and you do make a difference.

With loads of love and hope,



Chris Ulvin said...

Thanks mom!
Lori, I appreciate you updating Nick's blog as lots of prayer warriors check it daily. Nick is in my prayers each morning and I've recruited some other loving spirits to pray along with me via the Upper Room Daily Devotional. Makes one's head spin wondering how many times God will hear Nick's name spoken in the next 8 to 12 months. May God bless everyone touched by the Nick Raitt circle of family and friends. May God's spirit fill Nick and keep him hopeful. May God's grace heal Nick's earthly body completely. Amen.
Love, aunt Chris

akparamedic said...

Thanks for the update, mom.

A sinus arrhythmia is probably more common than not for a young person, and I've never heard of it being a problem for anyone, so I'm impressed by how thorough they are in taking care of Nick.

Glad to hear Nick had a great time in Colorado. I have a brother-in-law who, years ago, started up the Colorado River Surfing Association
Maybe one of these days Nick will use his snowboarding talents to take on a river?

As always, Nick, YOU DA MAN!!!