Maddie wins SBO at Skyline!

Maddie is the new Publicity Chair for Skyline High next year! We are so proud of her for putting herself out there and trying something new. Chase served on Publicity two years ago so it's a nice precedent he set. Maddie will be producing all the assembly videos with the help of 3 other Publicity members. I can't believe it's her Senior Year coming up! Thanks to Chase for helping her attain this great accomplishment and special thanks to her cousin Matthew for starring in her tryout video. I'd love to show it on here if I can...

It's Been A Year...

Well, it's been a year since the diagnosis. I'm glad to say Craig is still doing amazingly well and even hiked Millcreek canyon again just like we did last year. Here he is with Scout and Ruby. For fun I've inserted a video of Scout with his friend Bruce and the ball. This is a never-ending routine these two love to play. Craig doesn't really want to commemorate the anniversary as it isn't really anything to celebrate but I think it is because last year at this time we didn't know where we'd be right now. I'm just glad to say we're all still here and we're doing the things we love to do.

Craig and Dr. Jones

On April 6 we had a visit with Dr. Jones. She was amazed at how well Craig is doing. His liver function is perfect. His weight is good and healthy. He really is doing much better than we ever thought he would at this point. She wants him to do a scan in May but other than that she feels he's good to wait until hopefully this fall when he'd be willing to try another round of chemo. We still are waiting to hear on the chemo pill, Sutent, but so far insurance hasn't totally turned us down. Our intervention radiologist, Dr. Carlisle, has left Huntsman so we really don't have a doctor to use for chemo at the moment anyway. We feel really lucky to have Craig in such good health right now. Thanks for everyone's prayers and good vibes.

Spring Break in St. George

We went to St. George for spring break with 3 teenage girls, Maddie, Shelby and Emilie. We had a great time but wished the weather was a little warmer. Here we are at Olive Garden for Easter dinner! Chase was in Zions with Andrea and Jenn for a UofU class "biking through Zions". They had a fun time for 12 hours in the broken down Suburban on the freeway on the way down. Somehow it worked out and they got to their ride and we got to drive the Suburban home after a new fuel pump in Kanosh on Monday.

2nd Opinion

Last week we had an appointment with Dr. Scott Samuelson, an oncologist at Salt Lake Clinic with Utah Cancer. We decided to go for a 2nd opinion to make sure there isn't a treatment out there we're missing out on. Dr. Samuelson was great and spent a lot of time with us and basically confirmed that what we are doing is the best treatment for Craig's cancer. He did suggest the same drug, Sutent, that Dr. Jones wants Craig to try. We haven't heard back from our insurance on that appeal yet so there still is a possibility Craig could try it.

We have had some success in getting insurance issues resolved between the U Hospital, IHC and the Huntsman financial person. Lots of hours on the phone and refiguring out-of-pocket costs and the deductible. Just a few items hanging out there now that I'm hoping will resolve soon.

Loving the warmer days lately. Looking forward to spring break in St. George in a few weeks.

Skiing and "stable?" tumors

Craig's been skiing 4 times in the last few weeks! He's been going to Alta on the "ski free after 3" for just 1.5 hours but it's great for him to get out and be in the mountains and take a few runs. His good buddy Jason Thomas and son Jake have been his skiing buddies 3 of the times and Maddie and I went with them last Saturday. We're planning on going again today. It's amazing to think he can ski when 6 months ago he was barely walking. This is what Craig wants, just to enjoy life and not concentrate on the cancer all the time.

Speaking of cancer...I just can't stay off the subject. After our last appointment and Dr. Jones called the tumors "stable", we read the radiologists' report and the actual report isn't quite as rosy. The largest tumor in the right liver lobe has grown from 18.1 cm x 11.3 cm to 21.1 cm x 12.9 cm. This is just one of many tumors. We read this after the last appointment so I called Dr. Jones and asked how this is stable? She said anything under 20% growth is considered stable so at the appointment we are told "it's stable" to allay our fears? Or is it the easiest thing to say? It's made us question things and do some more of our own research. We are having a 2nd opinion this week from a Dr. (one of only two our insurance covers) in SLC who also treats pancreatic neuroendocrine tumors. We need to see if we have any other options besides chemo which Craig will not do again. The chemo provides no quality of life and is not proven to do much for the cancer either. There is a drug called Sutent that is an oral chemo that Dr. Jones would like him to try but our insurance will not pay for it. It's shown great results in actually keeping the tumors stable for up to 6 months longer than regular chemo and has the benefit of stopping taking the pill if it makes him too sick where the chemoembolization is put in his body and doesn't wear off for months. We are now appealing insurance to approve this drug for the 3rd time. And speaking of insurance, the first chemo on July 8, 2009 which cost $27,000 has now been denied even though we have an explanation of benefits in August 2009 saying they approved it. So if you don't think we need a health care overhaul in this country, just call me and I'll give you an earful! Huntsman is trying to work out the insurance problem for us. IHC insurance is calling the procedure "experimental". I asked the person on the phone "if this is experimental, what do you suggest we do for pancreatic cancer?" She was a little taken back by my comment. I know it's not her problem but this is ridiculous. We would love to have a treatment for cancer that isn't experimental...it all is!

Craig says "thank heaven"

Seriously, that's what Craig said when Dr. Jones came in with the CT scan report and said the tumors are stable. Hip Hip Hooray!! No chemo for a few more months! We really didn't know what to expect today but we were both cautious going to the appointment and preparing ourselves for what we might have to hear/think/do. But now we don't have to worry about a chemo embolization in the next few months and that is great news.

Thanks for all your prayers. Craig still isn't quite sure about the whole prayer thing but he's got to believe!! As our good friend Shelly Moss told me, the collective power of prayers is making a difference! Thankful pixie dust to all who read this and believe!