We'll Miss You Steve

Sept. 21, 2009

This morning, a wonderful man, friend, father, husband, son, brother, uncle, grandpa and cousin, Steve McDermott, passed away. Steve is our cousin through marriage to my cousin Becky Davis McDermott and is also Craig's little sister Lisa's brother-in-law. Steve was diagnosed 5 years ago with chondrosarcoma which is basically a tumor on his spine. He has been through 14+ surgeries to remove the tumor, radiation and a myriad of other procedures. We love his family so much and will miss Steve and his great sense of humor and zest for life. We love Becky, Melissa, James, Rosie, Thomas and Bree and especially little Deacon and Londyn who have blessed everyone's lives this past year. Steve is a one of a kind guy who has left an imprint on all of our hearts.

Merry Christmas!

This will serve as our Christmas card this year.

All of us on Christmas morning.

Wishing you and yours a very merry one.

Love the Doutré family.

November update

Well...it's been awhile and "no news is good news" until last week...
We are putting in a new driveway and Craig being the handy do-it-yourselfer that he is, figured out how to run the tubing underneath the cement to heat the hill of our driveway. After the concrete company came in and demolished the old driveway and prepared everything for the new driveway, Craig and Chase put down the reflective insulation and wire framework to attach the tubing to run the natural gas heater water through to create heat and melt the snow and ice. Last Tuesday, as they were bending rebar to hold down the tubing, Craig had his finger in the rebar cutting/bending machine when Chase pressed the handle down. The glove on his hand got caught in the machine and Craig pulled out his hand minus the tip of his third finger on his left hand which stayed in the glove! The glove wasn't even cut, his finger tip and entire nail were literally pulled off!

Sorry, it is rather gruesome. Chase rushed Craig to the ER and a plastic surgeon stitched his finger back together by shortening his finger slightly so he could close the remaining skin around the tip. He's done great the last 6 days and his pain level has been low from what we thought it might be. He was back on the driveway the next day finishing the job (with the help of his brothers and friend Jason, and Chase) with his left hand tied to his chest to keep it above his heart. Friday the concrete was laid and Saturday morning they covered it with blankets and by Sat. night it snowed! Lucky us!
The other obstacle to no postings on the blog the last 6 weeks has been having my right arm in a sling from shoulder surgery. This is the first week I've been able to use 2 hands on the keyboard! Not the most fun I've had...but I am healing and with physical therapy for a few more months I hope to get back to 100%. I also had a little squamous cell carcinoma removed from my face after years of not faithfully using sunscreen. I am duly admonished and have looked like an accident victim for weeks to rub it in! Maddie and I did get in a fun trip to San Francisco before all this and thanks to Nick and Kim for the great accomodations! Maddie got this great raccoon hat there...

Craig is still on the oral chemo, Sutent, and tolerating it rather well. Another Thanksgiving coming up and we're totally thankful to Pfizer for Sutent. If he was still having the chemo embolization to fight this cancer, Craig would not be here or barely holding on. This drug has made living with cancer a bearable endeavor.

Happy Thanksgiving everyone!! We all have a lot to be thankful for, I promise!

Chase is 20!!

It doesn't seem that long ago that I posted that Chase was 19. Now he's 20 and we couldn't be prouder. We celebrated once again at Cheesecake Factory with the family, Mason, Natalie and Hannah. Stuart's on his mission in St. Louis and we missed having him as part of the family but Natalie and Hannah were a nice addition. Happy 20th to my little boy!

Gratitude

Our feelings right now are of gratitude for what we have and how many blessings have been bestowed upon us right now and during our whole lives. I heard a talk today that reminded me to have "an attitude of gratitude". We can't just feel the gratitude but need to express the thankfulness we have in our hearts. So I want all of you to know how thankful I am for the continued love and support we are shown as we go through this journey. "To live with gratitude in our hearts is to touch heaven." We have experienced highs and lows over the last year and a half. But honestly, I really didn't think we'd be at such a good place right now. Last year at this time, it was bleak and Craig was at a low point I wondered if he'd ever recover from. He has recovered and he is strong and thriving! I do have faith that yours and our prayers have been answered and more time has been given to this man. We've gone along lately almost taking for granted how well Craig is doing but today I am reminded to show our gratitude to all those who have helped this day come. We are not worrying about the weight that is falling off and the energy level and appetite that is dwindling. We are so grateful for the 2 pull-ups Craig can now do and the 10 laps he swam in the pool in St. George last weekend. We are thankful for a Dr. that saw Craig on Thursday and could not believe his reduced liver size and good color in his handsome face. We are thankful for tumor markers that have dropped from 296,000 to 27,000. We are thankful for kids that are doing well in school and conducting themselves in a mature and positive manner. Kids who give their Dad a hug and ask him how he's doing on a daily basis. We are thankful for Scout, our dog, who gives Craig so much joy as he chases balls and enjoys his rub him down after a shower outside. We are thankful to be planning an upcoming vacation with the family. We are thankful for the peace that comes in knowing that if tomorrow never comes, we have everything we could ever need or want. We are thankful for our family and extended family which includes everyone who reads this blog, who waves when they drive by or helps anyone in need. Please take time to reflect on all you have. We are all so blessed.

Craig the Sutent King

Well, it's been 4 weeks this Wednesday that Craig's been on a full dose of Sutent. We went to Dr. Jones a week ago last Friday and his blood work was good, liver function good, nothing to be worried about so far. He had lost a little weight but he attributes that more to summer than anything. He told Dr. Jones that a few days before the appointment he thought he'd tell her he wants to drop down to 2/3 dose but now he was feeling pretty good and felt like he could tolerate the full dose. She said it's best to stay on it to do all we can do to fight the tumors. He'll have a scan in late Oct. to see what's going on inside but unless he feels differently, he'll be able to stay on the full dose for the near future. Dr. Jones thought he looked great and was tolerating the treatment very well. There are just two other patients she has on Sutent and it sounds like Craig is doing the best. We feel really lucky and hope it's actually doing something to the tumors. Craig actually feels at times that he forgets he has cancer. This treatment is bringing quality of life that he never had with the chemo embolization. Last year at this time he was looking much worse and we are so very thankful to have this time. Thanks for everyone thoughts and prayers.

Full dose

Craig jumped up to the full dose of Sutent last Wed. Aug. 18. It's been almost a week and he is tolerating it pretty well. He spends a little more time in the bathroom but that's been his norm since cancer. We will see Dr. Jones next week and do some blood work and see about a scan. Hopefully he won't see more symptoms as it builds up in his system. Now as I'm writing this he tells me the oxycodone isn't giving him as much relief from the pain as it usually does. He is being more active than he was so his body gets more tired as the day wears on (and he is 55, aren't all of us feeling a little more tired as the day wears on!). Thanks for thinking of us.

2/3 dose

Well, he's up to 2/3 dose by last Thursday, August 12 and it didn't make much difference. In fact, I think it's giving him renewed energy. He's pulled out the dead bushes in front of the house with the help of a truck, chain and his good friend, Jason Thomas...eaten at Cafe Rio and Cheesecake Factory...chipped out the tile in the basement (with Jason's help again) for new carpeting...all since taking the chemo pill! He wasn't wanting to do much of that stuff, manual labor or eating out over the past year and a half. If it wasn't Cowboy Grub's roast beef sandwich smothered in gravy, he wasn't interested in going anywhere else. He's thinking of going to the full dose this week sometime. We are just so thankful that this pill hasn't been too rough on him. Hopefully it's doing what it's supposed to which is keeping tumors from growing.

Maddie is 17!

It's true, she's seventeen today! What a woman! Hard at work on her Hello Day assembly video for the first day of school next week. She has been filming for weeks and is now editing for hours and hours. We celebrated at Cheesecake Factory and then some friends came over for cake and an outdoor movie. We had a surprise visit from the McDermott cousins. It was a great day for Maddie. We gave her a trip to San Francisco in October over UEA - just Maddie and mom! Love this girl lots! We're so proud of her!

Backed Against A Wall

Last Wednesday, Dr. Jones called, after reading the last CT scan taken at IMC when Craig broke his rib. She wasn't her usual light and cheery self but wanted to talk to both of us. She said the tumors have once again grown, especially the pancreas tumor which had not increased in size since the diagnosis. This is just from two months ago and Craig has been feeling so good. We talked about options and the words that stayed with us are "you don't have a lot of liver left". She said you need to take the chemo pill now. Craig felt "backed against a wall" and knew it was time to try the pill. He said he'd start on Sunday (today). The last thing she said was "don't drink any grapefruit juice". You would think that wouldn't be a problem for most people but for Craig that is his favorite drink...seriously! The sour, yellow, yucky stuff you buy in frozen cans...he loves it! Everything else is too sweet for him. We had already read that he would have to stop his grapefruit juice habit and I swear that was one of the things holding him back from starting the chemo pill. Now that he didn't have an option he willingly took himself off of it by Saturday and today when I came home from church he took his first Sutent at 12:30 pm. We sat there looking at each other and nothing immediately happened. Within about 20 minutes he started to feel a little upset in his stomach. Nothing drastic but just an unsettled feeling that he has many days. That was about it for the day, no drastic changes, no need for anti-nausea medicine so that was good. This is just 1/3 of the full dose he took today so he'll slowly build up to the full dose if he can over the next few weeks.

We had a Doutré family party tonight and he was able to go to that. His sister Greta-Ann and her daughter Caylie are in town so it was wonderful to see them and spend time together for the first time in a few years. Greta-Ann is the amazing bionic woman with her new leg which she actually stood and walked on. Here is a picture of her standing all by herself...totally great to see her progress. We love them both and wish they lived closer so we could help them out more.

Cough Cough Cough Crack!

During the recent trips, I caught a cold, then Chase did, then Craig did which was what we dreaded all winter that he would get sick. Well, now it's summer and he's had a cold since Yellowstone and it's settled in his lungs as usual. He's struggling to breathe at times and is coughing constantly. We went in yesterday to Dr. Craig and he had a chest x-ray and an Echo cardiogram. Craig's ankles have swollen up this past week and we're afraid maybe the heart isn't pumping as well as it should. The x-ray showed no pneumonia in the lungs and some excess fluid around the lungs and heart. This is common in cancer patients and can be helped with diuretics but we have to be careful not to dehydrate him. The heart looks good otherwise but we haven't had the final diagnosis from the cardiologist. So later last night Craig was watching TV and I was in my office and I heard him almost scream out in pain. Chase yelled for me to come up and Craig was doubled over and said he coughed and then felt a sharp pain in his back and felt like he'd broken a rib. (He's broken 3 before on a fall through a deck at our old house so he knew the feeling.) I called Dr. Craig and he said to get him to the ER fast as it could be something to do with his liver. We helped Craig to the car and carefully drove to IMC in Murray (trying not to hit bumps which created more pain) and luckily were ushered in fairly quickly to a room when we mentioned cancer and a possible liver rupture. They got him on pain meds intravenously and he relaxed a little. His vitals were good. They did a chest x-ray (2nd one for the day!) and then a CT scan. The results came back about 2 am and showed he has a broken 8th rib on the right. It is amazing a cough can do that! All we can do is wrap him in a stretch wrap around his middle to support him and give him some pain meds. It takes about 4-6 weeks to heal and he can't do much lifting or twisting (not that he wants to!). He still has the cough which we'll try to help with some steroids. Poor guy had a tough night getting comfortable and not coughing.

He did receive the Sutent (oral chemo) from Pfizer through their patient assistance program. Once he's through the cold (and now the rib fracture) he'll start on a smaller dose to see how he feels with it. Dr. Jones said 3 other patients are on it and have mainly been more fatigued but not really nauseous. They have stabilized their tumors and one patient even had some reduction in tumor size which is incredible. Hopefully this will be a possibility for Craig soon.

Yellowstone with the Doutrés

We were home for 3 days then headed to Yellowstone with the Doutre’ side of the family. Saw a bear, a bald eagle, buffalo, elk and a mama moose and baby moose. Feeding the chipmunk at Firehole River was a highlight as was being sworn at by a construction worker while we stopped to take a picture of a buffalo coming down the road! Hiked Uncle Tom’s Trail by the Upper Falls and ate the requisite ice cream cone while waiting for Old Faithful to blow. Rafted down the Snake River twice and had the ride of our lives the second time (sorry Craig). Thanks to everyone for a memorable and fun trip.

Huntington Beach

In June we traveled to Huntington Beach CA with my brother Craig's family and spent a week at a beach house. Chase, Craig and Maddie were all great boogie boarders. Craig wore a wet suit to retain body heat in the ocean. He said he felt like he was carrying around a basketball in his stomach as the waves hit and things inside slid around. Craig H. got to be rescued once in a riptide by a lifeguard and topped that by dislocating his shoulder in a wave and taking a ride in an ambulance to the hospital for relocation! He was back at the beach in no time to not waste a good beach day. We ventured to Disneyland one day for fun. Roasted marshmallows on the beach, rode bikes everywhere and perfected our tans and body/boogie boarding skills. Thanks Harmons for an exciting trip. We hope you aren't getting too old for this HCH?

Here we are in San Francisco...
Muir Woods...

Visiting with Carolyn Caine, my second mom who just turned 88!! We love you Carolyn!

Columbia CA...a mining town in the Sierras...Visiting Kim and Nick Hatch's apartment... Lake Tahoe...

Happy Anniversary to us!

Well, it's been 27 years of wedded bliss today! Hip hip hooray!
We are heading to San Francisco tomorrow to celebrate. We're driving through Lake Tahoe and the gold country which Craig loves on our way there. We'll post pictures after the trip.

Last week we had an appointment with Dr. Jones with the results of the latest CT scan. Reality hit and we were reminded that Craig really does have cancer. He's been feeling pretty good and doing what he wants to do but the tumors are growing. As it says in the radiologist's report: "There is near complete replacement of the upper segments of the right hepatic lobe." Meaning the tumor is taking over the right side of the liver. Unbelievably his liver function is still normal and all other lab results are good. The largest tumor measures 13.2 x 21.0 cm on the right side. That is about the size of two remote controls put together! His left lobe of the liver also has many tumors with one measuring 5.6 x 5.6 cm. The right side of the liver was where the first chemo treatment was focused. We wish she'd done a better job or that Dr. Carlisle had done that side. Craig is reticent to go back for more treatment as he is enjoying life much more now but I really would like to kill some more tumors. To complicate things, Dr. Carlisle has left Huntsman and they don't have an intervention radiologist on staff right now. So we're petitioning the insurance company to use Dr. Carlisle at St. Marks. It just isn't easy getting this all taken care of. Dr. Jones would like to see him get treatment in July...he'd like to wait until September as he had a pretty lousy summer last year. Dr. Jones did tell us that Craig has the largest tumor load in his liver of any of her current patients. Did I mention reality sucks?

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!

January is boring

Sorry I haven't posted this month...January is boring. Craig is doing rather well. We went to St. George together the first week of January and that was a nice break from the smog. Craig walked around, was a patient shopper, ate out, hiked a little and all in all did really well on his first time away from his bed and pillows since Snowbird last fall. We did take most of the pillows with us in the car to make sure he'd be comfortable. Here's a photo of Craig and Scout in Snow Canyon. Scout loved throwing the ball and pouncing on it in the sand dunes. We love getting out of the snow and going to the desert in Southern Utah.On January 15 Craig had blood work and everything looked really good. His liver function is normal and nothing was out of the ordinary. His tumor markers are still all over the place so we can't put a lot of credence in them. He is scheduled for a CT scan on Feb. 11 which will give us a really good idea of what's happening with the tumors in the liver. He feels like his liver is larger but that could be because of new liver growth from tumors dying. That's what we're going with. His gout is mostly gone thanks to Dr. Dean and the cortisone shot. We should have done that sooner. Craig's shoulders are continually achy and the ibuprofen and oxycodone keep him out of pain. He'll have another acupuncture treatment next Monday and hopefully that will relieve him of the achiness for awhile. He has been riding his bike every day around the neighborhood and letting Scout run after him. It's a good bonding time for man and dog!

Here's the latest facial hair growth on Craig. He needed a change he said. The kids like it so he's kept it a few weeks. I'm getting used to it...never been a big facial hair fan. What do you think? I think he looks like Wolfman Jack in the bottom photo...