Wednesday, December 29, 2010

Hospice

Hospice... what a devastating word to hear.

Today I took Evan into the Doctor's and we had "The Talk". We were told that Evan's liver will not make the grand turn around that we were hoping for and there is nothing more the doctors can do to help him. As of today Evan is on hospice and will no longer be making trips to the doctors.

Hospice will come in and do everything that they can to help make Evan comfortable for the remaining time he has left. The doctor doesn't think he has more than a month to two months left.

I feel like my feet have been taken out from under me and I can't turn off the water works...I feel broken

My dear friend told me that grief will come in waves and that I just need to ride the waves all the way to the shore. I love her dearly for bringing a smile to my face. (Thanks Darcy, you are a rock)

My sweet Brother and Sister-in-law are coming to my rescue to give me the comfort that can only come through the power of the priesthood. Thank you my dear brother for coming to my aid and letting me lean on you, I love you so much!

You are all a strength to me, thank you for carrying me through this.

Sunday, December 26, 2010

Christmas night in the ER

Our Christmas started out amazing, with our kids all together along with our sweet grandbaby. We had our traditional opening of presents and a family breakfast. Evan was able to spend most of the morning with us but it soon wore him out.

Later that evening we had all of Evan's family over for a family party. Evan spent most of the time in bed but enjoyed his family visiting with him in his room.

Then came midnight!!! Evan woke up in a lot of pain and felt like his abdomen was going to burst so we ran in into the ER. They took good care of him and relieved his pain by removing over 3 liters of fluid from out of his abdomen. We arrived back home around 7:00 in the morning. It was a very long night.

We are still watching to see if his bilirubin counts come down. So far there hasn't been much improvement.

Thursday, December 16, 2010

Christmas Miracles

We received some great news today!

Yesterday, I took Evan into the doctors to get more IV fluids and blood drawn. Once we got there they decided to do a CT scan, this showed that his liver was pushing fluid into his abdomen. They drew off the fluid and sent it to a lab for testing and they called me this morning with the most amazing news.

They said that the fluid showed that he has an infection and that is why his bilirubin count has been so high. The reason they couldn't find this before was because his white blood cell count was never elevated. They feel that with IV antibiotics, Evan will feel so much better.

The doctor said that he is guardedly optimistic because Evan still has liver disease but this should help him get more energy and he could possibly live to see another summer.

For me.... this is my Christmas Miracle and an answer to many prayers.

Tuesday, December 14, 2010

Cruise to the Bahamas

We have been so blessed to have such wonderful friends and family. We have received so much love and support during this difficult time in our life's and we love each and every one of you. So many of our dear friends and family have stopped by for visits and it has been so great to see each of you.

Earlier this month we were given a gift of a cruise to fulfill another of Evan's bucket list items. It has truly touched us and we can't say thank you enough.

We left on Sunday Dec 5th and flew into Orlando Florida where we stayed the night in a hotel with the view of the ocean. The next morning we boarded the ship, we were both so excited! Once we were checked in and able to go to our room, we found another gift from two of the ladies that Evan worked with. Once again, we are amazed at the love that has been poured out to us.

The weather was cool but that didn't take away from the excitement of our adventure. Most of our travel across the ocean was done while we were sleeping and that is a good thing because the water was pretty rough. So instead of it making us sick, it just rocked us to sleep. When we woke up in the morning we were surprised to find we were in Nassau instead of on the private island (CocoCay) because the water was too rough to make it to the island.

We spent two days in Nassau and we were able to get off the ship a couple of times. It was difficult for Evan to do much so our excursions were short but we made the best of them. We were not able to enjoy too much of the night life on the ship because Evan needed to get as much sleep as he could but one night around midnight, Evan woke up and had to have ice cream. LOL Evan NEVER eats ice cream! So we got up, got dressed and went on the hunt for ice cream. It's a good thing that there is always food to be found on a cruise.

We then departed at midnight for CocoCay. It was a beautiful island with so much to do. Evan and I enjoyed watching others swim in the ocean, parasail, and jet around on ski jets. We didn't spend too much time off of the ship but we were able to take our shoes off and put our feet in the beautiful blue water. When it started to sprinkle rain we decided it was time to go back to the ship for a nap.

It was nice to come home and find a stack of Christmas cards and get well cards. The trip home was hard on Evan. We had been gone all week and he was getting weaker every day. When we got home Evan crashed and has been sleeping about 22 hours a day. I took him into the doctors for some IV fluids and they drew his blood. His bilirubin counts has now climbed up to 22.3 and his ammonia levels have tripled. He will go in again on Wednesday to see, with some new meds and the fluids, if his counts have come down.

It was a very difficult day because it was time for the nurse to have a conversation with me about Hospice. I am holding it together pretty good for right now, we all feel pretty numb.


Wednesday, December 1, 2010

Doctor Visit today

Today I went in to get some fluids to help clean out my liver since it isn't doing it on it's own. They gave me 3 bags and I will have to go back Friday for 3 more bags. They ran my blood to see where my Bilirubin was at now and it has shot all the way up to 15. WAY TO HIGH.. remember it is supposed to be at 1.

The doctor has me trying everything they can think of to help my liver start working better but I don't know when it will start to work better on it's own.

anyway, I am at peace with what ever happens so not to worry. I will keep you posted as more news comes forward.

Evan

Sunday, November 21, 2010

Nothing

The MRI didn't show anything. Next Dr's appointment is on Friday. In the mean time, Evan does a lot of sleeping and doesn't have energy to do much of anything.

Tuesday, November 16, 2010

Another Hospital Visit

Evan was admitted back into the hospital today because his bilirubin count has reached 10.0. He will get to come home tomorrow after he sees a liver specialist. Hopefully we will find out if there is anything that we can do to jump start Evan's lazy liver.

Sunday, November 14, 2010

The battle continues

I have received word that an update to our blog has been requested by many of you. I'm sorry that I am not good at this, it is just very hard to put down in words the struggles we are having.

Evan continues to be weak and tired. He is not able to do very much without it taking too much out of him. His liver continues to not function normally and his bilirubin count is still too high at 6.0. The liver function counts continue to come down so there is every chance that Evan's liver will rebound.

We spoke with his doctors and they are reaching the end of their options to treat him. Right now they have 2 options.. one would be to treat him with chemo but Evan has decided that he doesn't want to do that. Chemo will not kill the cancer but it might prolong his life by a couple of months and that means that he will be miserable for a longer period of time.

The second option would be to take some newer pills that will target the proteins that are feeding the tumors. These pills are not approved by the FDA to treat Evan's type of cancer but they have been proven affective in fighting the proteins that feed cancer. The doctor is going to work with the insurance to see if they will cover it. This pill should have minimal side affects and should be easily tolerated.

When we were at the doctors, we asked him to be frank with us and tell us what the worst case scenario would be and he said that if his liver doesn't come out of this and goes into liver failure, then Evan would only have around 2 months. If his liver does come out of this, then he could have up to a year. Again we have every reason to believe that he will rebound, so for now we are just trying to get through each day one breath at a time and cherish every moment we have with each other.

Thank you for your love and support as well as your continued prayers.

Sunday, October 31, 2010

Playing the Numbers Game

Several weeks ago I had a Therasphere treatment scheduled. This treatment was postponed due to my Bilirubin being too high. It is supposed to be below 2 and it was at 5. They gave me IV fluids to detox my liver and bring my Bilirubin count back down. They got it down to 3.4 the doctor told me that it was up to me if I wanted to go ahead but that he was concerned because if you do a Therasphere treatment with your Bilirubin above 2 you take the risk of causing Liver failure.

I chose to go forward with the treatment figuring that it was not going to get better. Well they checked them again recently and found that it went down to 2.2 and then recently it was back up to 5.5. NOT good. So I have been going in and having them give me IV fluids to try and flush the toxins out of my system. I have to keep going back and getting more fluids to keep my liver clean but it should help. Monday they are going to check my Bilirubin again and see where I am at now. Hopefully it is down a bit.

Thursday, October 21, 2010

So far so good

So far everything is going fine. Evan continues to get an IV infusion every few days.

On Monday, they did some lab work and the results came back very positive. His bilirubin count was back down to a 2.2 and his other liver function counts are almost back down to normal. This was great news but does not mean we are out of the woods yet.

They say that the thearaspher treatment will continue to be active for another month or so. During that time the liver tissue around the tumor will continue to be affected we just don't know how much it will be affected.

For now Evan is feeling great and he even put up our Christmas lights yesterday. He has energy thanks to the steroids that he is taking for a short period of time. It is so good to see him active and happy. His eyes are still a little yellow but they are getting better.

Friday, October 15, 2010

Night at the hospital

Evan went in for his radiation treatment yesterday and before they would take him for the treatment they wanted to check his bilirubin count. It was back up again to 3.4. We are not sure what is causing his count to be so high but Evan feels that it is something that is not going to reverse so they went ahead with the treatment.

We faced a decision that placed us between a rock and a hard place. The tumor in Evan's liver had doubled in size in a matter of 3 months so it was important to treat that tumor. Treating that tumor now puts him at greater risk for liver failure due to his bilirubin count, so we have spent the night at the hospital so that they can continue to monitor him.

They have a IV continually running to keep him hydrated and help his liver process what is going on. This should help keep his liver healthy. There is a possibility that he will be sent home with an IV for the weekend and we will have the help of Home Care to help with the IV.

Needless to say, it has been very stressful and will continue to be stressful until we know he is in the clear.

Thanks for all your prayers!

Wednesday, October 6, 2010

Bilirubin numbers

I went in yesterday and they tested my Bilirubin again and found that it was down to a 2.8 instead of the 5.0 that it was at. These numbers have helped them to determine that it is now safe for me to go ahead with my Therasphere treatment. So, I have that scheduled for next Tuesday. (Oct. 12th)

That will be the day that I get to fight and destroy that one tumor that is in my liver that has been determined to grow. If we can get that one knocked down, then I should be in better shape for the rest of my body. I will be back to just my 3 month check-ups.

Sunday, October 3, 2010

New Family Photo

Yes, we know it was about time we got a new family photo that includes our Grandson. It has been a long time coming.

We were happy to find this location as it was a great place to take a family photo.

Thanks to all that check this Blog on a regular basis. We really should update it more often but just have a hard time to find things to add. We will try to be better at it.

May every day be better than the last.

Wednesday, September 29, 2010

No Treatment Tomorrow

Today I have been feeling a lot better but I still had to go to the hospital for some lab work. We found out that my bilirubin count was way up and my radiation treatment has to be postponed until it comes back down again. They will hydrate me Friday and recheck my labs on Monday. If all is good then they will schedule my treatment for later next week. We were very lucky that we found out about my bilirubin today because if I would have waited to get my labs done tomorrow morning, the results wouldn't have come back in time to stop the procedure. If they would have done the procedure, it would have killed me. I guess I should listen to my wife more often when she tells me to call the doctor.

Tuesday, September 28, 2010

And the pain continues

I dont know if I got sick or if my system is just fighting the Cancer but Sunday afternoon I started feeling sick and weak and by the evening I was running a fever and vomiting and aching. Monday was worse. I had a fever of 104 but today the fever broke and I am starting to feel a bit better. Just weak but better.

This is good because Thursday I have to go in for my Therasphere treatment. Not looking forward to it but will do what I can to stop the tumor from growing.

Sunday, September 12, 2010

Ouch..

Well I had the mapping Friday and I have been in bed almost the entire time since. It hurt for some reason this time. Not sure why but they said it went well and they are scheduling the treatment for two weeks from now.

Tuesday, September 7, 2010

Another Round of Therespheres

Well,

the last doctor visit I had, he said that they decided that they wanted to treat the one tumor on my Liver that has grown a bit so this Friday I am heading in (very early) for the first half of the procedure. It is called the "mapping" it is where they will knock me out and put a camera inside my femoral artery and feed it up to my liver and look around for the Tumor and see where and how they can treat it.

Then the next step is to go back and have the treatment done soon after, maybe a week or so. The treatment is basically the same as the mapping except when they are in there, they will push the radiation beads into my liver and onto the Tumor.

The treatment is pretty much painless but it does mean that I cant lift anything for several days and it does make me a little weak for a day or two. Life should return to normal after that.
Wishing me luck....

Sunday, August 22, 2010

Sunday post


Today is Sunday and I thought I would just post another message about my trip to Australia. I am adding a picture that I took that I thought was pretty cool. They have this monorail in Sydney that moves all around the city and allows you to get around pretty easily without a vehicle.

As for other info, we went camping this weekend south of SLC on the Nebo loop up Payson canyon. The weather was perfect and we had a great time.

The weather today has been great up to now but it just started raining (6:30pm) I dont know how much it will rain but lately we have been getting rain that comes down so fast that we have had flooding in areas.

Friday, August 13, 2010

Update from Doctors Visit

Came back from my doctors appointment pretty happy. He said the tumors on my lymph nodes have shrunk a bit and look great, and the ones on my liver look smaller too other than one and it is just slightly bigger than it was last time but nothing to worry about for now. Whoohoo... I get to go 3 months with no treatments other than the monthly shot that I will always have to take

Monday, August 9, 2010

Medical Update

This week I will be going in for my CT Scan. This will give me a better idea of what is going on inside me. Last scan didn't use Contrast so it didn't show anything. The Doctor was a bit confused as to why they didn't use Contrast but they didn't.

The scan is scheduled for this Thursday and then I will go in and see the Dr. Friday to get the results. The good news is that I feel pretty good so I don't think it is going to show anything. The bad news is that I have no real data for the past 5 or 6 months. This means that things could have really changed and we don't know.

I will update the Blog when I get the results.

Wishing me Luck.

Tuesday, August 3, 2010

Smiles for Grandma

I got the best smile from my sweet grandson. Sorry the picture isn't the greatest quality but it was taken with my cell phone. Don't you just love the peak of hair on top of his head? I just want to eat him up!!

Saturday, July 24, 2010

Sydney Opera House and Sydney Bridge


Here is a picture of me on a boat going out to see the Sydney Bridge and Opera house. This is where they shoot off the New Years fireworks here.

All I can say is "Unbelievable" This is one of those things I thought I would never see in my life and here I am seeing it with my own two eyes. Chalk one more off the bucket list of things to do.

Sydney Australia !!

Yes,
I am in Sydney Australia for work for a little bit and so I thought I would take a moment and submit a picture of what it looks like down under..





I forgot that I was "Down Under" when I took this picture so I am taking the rest of the pictures with my camera upside down so they will look right side up for you when you see them in the USA... :)

More pictures to come.
Evan

Saturday, July 10, 2010

Our Grandson and another cake




I baked a cake for Evan's sisters birthday party. The theme was princesses so of course it had to be a pink cake. JayDee helped me and it was a lot of fun to make.






Our Baby Parker at 2 months old

Sunday, July 4, 2010

Summer Vacation

Well, after driving 2600 miles, we just got back from our summer vacation to see the Redwoods in California. We had a wonderful time!!

Our first night was spent in Reno, NV at a horrible hotel. The bed was so hard we could hardly sleep. We drove the whole next day until we reached Eureka CA, we were so tired we just found a hotel with a soft bed and crashed. In the morning we drove to where we took a tram ride up into the redwoods. It was amazing!!

After the tram we drove through a tree :o) then on to San Francisco and the wharf. We really wanted to go visit Alcatraz but it was $40.00 a ticket unless you booked in advance, needless to say, we had to settle for just a picture from the wharf.

From San Francisco we drove to a town outside of LA and we spent the whole day at Six Flags. Cody had a blast and we were so exhausted, I even got a blister on my foot from all the walking around. When did I get too old to enjoy an amusement park??? Believe it or not, I actually had fun riding all those roller coaster rides.

Our next stop was Hollywood. We didn't stay too long there but it was fun to find the stars of some of our favorite movie stars. At this point we were all ready to head for home but of course we had to stop off in Las Vegas to visit the pawn shop that was made famous on a TV show called Pawn Stars.

Our last night was spent in the worst hotel of the whole trip in Mesquite NV. At 2:30 in the morning we gave up trying to sleep and climbed in our car to make the last leg of our journey.

We are so glad to be back home but we had a great time and can now cross off one more item on Evan's bucket list.

Vacation Pictures




Sunday, June 27, 2010

Endoscopy results

Evan had his Endoscopy on Friday to see if he had varicose veins in his esophagus. The results are that there are no varicose veins. This is wonderful news but at the same time, this still leaves us wondering what has caused Evan's spleen to be enlarged.

Monday, June 14, 2010

Liver

We have been so busy enjoying our summer that we haven't had time to update the blog. :o) We have been camping every weekend and can't get enough of it. Evan has had more energy since we have been able to be out in the sun. He needed the vitamin D that the sun produces.

There have been some things that we probably should fill you in on that have developed over the last few weeks.

First of all.... When they did Evan's last CT scan they left out the contrast and said that they had verified that he didn't need it.... They were wrong!! Without the contrast they were not able to see any tumors which is why the first doctor said that the tumors in his liver were not there anymore. False hope :o(

When he went into his cancer doctor, the doctor questioned the missing contrast but wasn't overly concerned. He just said that he would set up another CT scan in a couple of months.

The doctor did say, however, that Evan's lymph nodes were still looking good and that there hasn't been any new growth and that the shots are still working. He also said that his liver tissue didn't look healthy and that his spleen was enlarged and wanted Evan to go see a liver specialist. This had us rather worried.

The liver specialist looked at the scans and said that his liver tissue was fine and his liver should hold out for another 10 years. Her main concern was that his spleen was enlarged. Her opinion is that he has some varicose veins in his esophagus that are pumping too much blood into his liver and the liver can't process it very well so it is causing the spleen to enlarge.

Evan is scheduled for an endoscopy on the 25th that should determine if the liver specialists assumptions are accurate. If this is the case then they will add another pill to Evan's diet and this should shrink down the varicose veins and he will begin to fill much better.

We will let you all know what the results are.

Tuesday, May 18, 2010

Today Another Shot (Sandastaton)

Today I get to go in and have my monthly Sandastaton shot. This is the shot that helps stop the growth of the Tumors in my body.

It must be working because the tumors have NOT grown and the doctor said that is great news.

The harder news to take is the cost of the shots. They are billing my insurance $17,720 per shot. I get one shot a month. You can add it up and see that it is quickly costing the insurance a lot of money per year.

I just hope to never get that letter from them saying that I have reached the limit of my insurance and they are not going to cover me any more.

Wednesday, May 5, 2010

Latest Scan Results

I was given the wrong date because Evan had his scan today instead of on the 7th. It is so amazing that you can get a CT scan and get the results instantly instead of having to wait for a week.

We couldn't have received better news!! Evan's liver is completely clear and the lymph nodes haven't grown. This means that the sandostatin shots are working by keeping the tumors from growing.

It is never easy when he gets these scans because we hope for the best but at the same time we have to prepare ourselves to hear bad news. It makes for a very stressful day.

Again we want to thank you for your prayers on our behalf, we truly feel the strength of your prayers.

Saturday, May 1, 2010

Evan update

Evan has had a difficult couple of weeks. His energy level has not been the greatest, and his down times seem to be more frequent. In the evenings and on his days off, he takes advantage of the time to do a lot of sleeping.

Evan is scheduled for his next CT scan on the 7th. We are hoping for good news.

Friday, April 23, 2010

Smiles


Parker smiling in his sleep
One day old

Thursday, April 22, 2010

Meet our Grand baby



Parker Evan Jones
Born April 22, 2010 at 2:09pm
7 lbs 14 oz 21 inc. long






JayDee did fantastic! After only 6 hours of labor she delivered our little baby boy with six quick contractions. Right off the bat Matt started explaining sports to his new son starting with the Utah Jazz and their standings in the playoffs. He is such a cute Daddy and JayDee is loving being a new Mommy. They are a beautiful new little family.



Sunday, April 18, 2010

Monthly Sandastaton Shot

Friday I got my monthly shot to stop the growth of the Tumors from growing. The shot is one that is not like other shots, it is a medicine that does not dissolve so it has to be given in a large needle and sometimes it hurts for days after. This week was one of those times.

I was scheduled to go on a motorcycle ride Saturday morning with a bunch of friends but was not able to go because sitting on my backside for a long ride would be to painful. It was very frustrating because I really wanted to go. Oh well, such is life.

My next visit with my Dr. will be in a month and I think I get a CT scan at that time so we will see how the tumors look.

Monday, April 12, 2010

Liquid Gold


As most of you know, I work for Kennecott Utah Copper. Last Friday I was given the great opportunity to go to our Precious metals plant and watch as they poured Gold. It was an incredible experience, I got to see it go from liquid to a solid bar in just a few minutes and then after a quick bath in water it was cool enough to pick up. The worker picked up one bar and handed it to me. He then said "you are holding a half of million dollars in Gold in your hands"

I was stunned to say the least. It was a neat experience that not everyone gets to do. I really enjoyed it.

Sunday, April 4, 2010

He Is Risen


HAPPY EASTER everyone. Yes The Lord rose on the 3rd day and overcame death that we might all live and overcome death. Remember that death is just part of the plan that our Father in Heaven has for us.

Thursday, April 1, 2010

Michael Bublé

Last night, Evan and I got to go see Michael Bublé in concert. He is one of my favorite singers and he is so talented. It was an amazing night!!

I have never been to a concert in my entire life so that made last night even more amazing. I wish I had some pictures I could post from it but we didn't have our camera with us. The camera is way to big to lug around with us and I don't think they would have let us in with it anyway. You should have seen all the cell phone lights on as people were taking video and pictures. It was pretty funny!!

Thanks Santa for such a wonderful gift!!!

Spaghetti Cake


I made another cake...


This one was for April fools day and I took it to work with me. It was a huge success and everyone loved it!


If you know Charity Lighten, she is the one that first made this cake for JayDee years ago for one of her birthdays. I just had to give it a try.


Monday, March 29, 2010

Doing good

I just wanted you all to know that Evan is doing great this week. Nothing really exciting to report but we were told that we don't update this blog often enough. teehehehehe

So here is the update... all is well, Evan is doing GREAT, Cody got his braces off, JayDee hasn't had her baby yet (although she is getting close) and I'm at work waiting for "The Call" to run to the hospital at a moments notice.

Saturday, March 20, 2010

Baby Showers




Over the last couple of weeks we have had two baby showers for JayDee. The first one was last week and my sweet sister-in-law and her girls threw it for my family. (Thanks Stacey and girls!) The girls were so tired by the time the shower was winding down so they did what sisters do, they fell asleep on top of each other. They are so cute with each other.





Today we had a shower at my house for all of JayDee's friends. It was great to see some of my friends and the girls that JayDee grew up with. I sure missed those girls!!

JayDee, my sister LaWaine and I made the cutest cake for the shower. We were very proud of ourselves.


Tuesday, March 2, 2010

NASCAR Experience

Wow, where do I start?? Evan, through the generosity of those he works with, was able to fulfill one of his bucket list items. Saturday morning we flew to Las Vegas to go to the NASCAR race. When we got there we picked up our rental car and we were surprised to be able to drive a brand new, convertible mustang. We went to the hotel (Bellagio) and checked into our suite that had three bathrooms and a doorbell. LOL it was great!!! The room was beautiful and very comfortable.

We drove to the Las Vegas Motor Speedway and went straight to the pits because of the generosity of one contact at Larry Miller Motor Sports that gave us “Hot Pass” access, where we got to stand right next to the pit crews. The sound of all of the cars was so loud that we could hardly talk to each other. The Saturday race was the Nationwide race where we watched lots of action including Danica Patricks wrecked car.

That night after a very enjoyable day at the race, we decided to eat at one of the hotel restaurants. As we were eating a man came in and sat next to us. We started up a conversation with him and he introduced himself to us as Herbert Ames who happens to give personal tours of behind the scenes at NASCAR. He offered to give us just such a tour Sunday morning for the Sprint cup race. He also gave us another ticket for the race to give to anyone that we wanted. Evan called his buddy Doug and he met us Sunday morning to claim his ticket. :o)

Herbert gave us a tour that we are still pinching ourselves over. He took us into places that most people are not allowed to go. We sat in the pre-race meeting with all of the drivers, then we took a tour of the inspection center where they check every car to make sure it measures to meet all of the requirements. We also got to go into a hauler truck where they haul the race car as well as a backup car and all the parts they need to maintain the vehicles.

Herbert then walked us out onto the track and across the field to the pre-race stage where they announce the drivers and have a pre-race show. All of the drivers and their families were gathered all around us as they prepared for introduction. Herbert then did the most amazing thing, he took Evan up on the back of the stage and introduced him to Dale Earnhardt Jr, Evan’s favorite driver, where he got his autograph and had pictures taken with him. I have never seen Evan so excited before, he was shaking.

Just when you think that you have seen and done it all, they invited three people that were also taking the tour with Herbert to go up on the stage and present a gift to Jeff Gordon. The three other people were with ESPN and one of them by the name of Chris came up to me and told me that he wanted Evan to take his place and have that experience. We called the kids and told them to watch the TV because Evan was going to be on TV. I’m not sure if they showed the presentation but the kids did say that they saw both of us on TV behind others that were getting interviewed.

After the introductions, we went back to the pits to watch the start of the race. We were allowed for a short time to stand at the cement barrier that separates the pit crew from the track. They started the cars and the sound was deafening (Evan was in heaven) then they were off. We then left to enjoy the race from our seats in the crowd.

We are still in awe over the experience we were able to enjoy and we express our deepest gratitude to those who made this possible.

NASCAR Pictures

Saturday, February 20, 2010

Fiddler on the Roof


Tonight I was able to take my loving wife to a great play and one of our favorites. Fiddler on the Roof. It was playing at Hale Centre Theatre in SLC and they do a fantastic job of every performance they put on. This one was no different. It was incredible. We had front row tickets which I had purchased a few months ago as a surprise for Julie.

What a great night it was. We both had a wonderful time and I was lucky enough to have the energy and ability to stay and watch it uninterrupted.

If you live in the area and get a chance, it is well worth the cost. I don't even remember what I paid for the tickets but I would go see it again any time.

I feel great and have been doing fine. I know there are a lot of people that check this Blog to see how I am doing and just know that I love you all and am doing great for now. I plan on keeping it that way for a long time to come.

Wednesday, February 17, 2010

A Post from Another Blog

I thought I would share with all of you a post from a Blog that I follow. Tami is writing a book about several cancer survivors and is including me in her book. It will be out this spring and I am excited to be part of it.

You can read the post by going to

www.tamiboehmer.com

Sunday, February 14, 2010

Friday


This past Friday, my son in law Matt arranged for me to go meet BYU Basketball coach Dave Rose. Coach Rose has Carcinoid Cancer like myself but his surgery was a year later than mine. He is one of the very few out there that know exactly what I am going through because having Carcinoid Cancer is so different than any other cancer.

We were told that he would be able to spend 15 minutes with us but had a very busy schedule. We got there a few minutes early and after a few minutes he came out of his office and greeted us and took us back to his office. We sat and talked for 15 minutes which quickly turned into 30 minutes and then his secretary knocked on the door and reminded him that his coaching staff was waiting for him to go over the game plan for their upcoming game. He nodded his head and closed the door and waved her off and continued talking with us. our 15 minutes turned into 45 minutes as we talked about both of our situations and the way life changes. I wont go into details about the conversation out of respect for Coach Rose, but we really connected and it was a time that I will cherish and never forget.

At the end, we took pictures and he presented me with a BYU shirt, poster of the Basketball team (signed by the team) and then he handed me a BYU basketball also signed by the team. That ball is incredible and will stay with me for the rest of my life. (years....)

Thanks to my son in law for setting this meeting up, and a special thanks goes to Coach Rose for turning 15 minutes into a great meeting and connection that I will cherish. He is truly a great man.

Thursday, February 11, 2010

Thursday Feb 11th 2010

I thought I would just make a quick post today and let everyone know that I am doing pretty well all things considered. Today started out rough but then I started feeling better. By the time the day was over, I was exhausted and ready to come home and crash. The good news is that tomorrow I have taken the day off so it will give me some time to get some energy back.

The past few days have really been emotional for me. I have found myself in conversations and all of a sudden I break out crying. I just feel so blessed and lucky for the friends and family that I have. You might never understand that, but if you are reading this, it is very likely that you are one of the ones that has affected my life in such a positive way.

I thank you all for being there for me. It means more to me that you can dream of.

Tuesday, February 2, 2010

CT Scan Today

The past few days I have been having some pain in my "gut" area on the right side that has been unbearable and I finally broke down and called my oncologist and told him, he said I needed to go in for a Chest X-Ray and a CT scan.

I did that today and then a few hours later he called me back to give me the news.

the GOOD NEWS..

He said that my scan and X-Ray look great and that my tumors are smaller than before which is great. He then explained that the pain I have been feeling is from my Liver repairing itself from the treatments that have been done on it. The Liver itself doesn't have nerve endings, but the membrane that surrounds it does and that it being stretched as it repairs itself. As it stretches, it is causing the pain. Not unusual and nothing to worry about. The Dr. is giving me some pain killers to take while this happens but once it stops, it will be good to go. The really good news is that everything still looks clean. I couldn't have asked for better news. It looks like 3 more months of free time before the next CT scheduled appt. Life is Great. !! And I am blessed.

Friday, January 29, 2010

A Challenge for Everyone


I am NOT artistic at all, most of you know if you have ever seen me draw a picture of a person. They all turn out to look like stick figures.

But I am looking for someone that has artistic drawing capabilities to help me create a "LOGO" for Carcinoid Cancer.

So as you see from the picture I added, Carcinoid is symbolized by the Zebra. The Zebra has great camouflage to hide in plain sight. That is what Carcinoid does. It is often miss diagnosed due to hiding itself and Doctors often think it is some other problem.

What I am looking for is a creative "LOGO" using the Zebra pattern that can represent Carcinoid Cancer.

The winner will get a surprise from me.
if you have any suggestions, please email them to me at:

evanm32 @ gmail.com

NOTE: the spaces in the email are to stop spam from picking up the email. they are not needed when you email me.

Thanks

Sunday, January 24, 2010

Funny Comparison



So at the Mercy River Event, they saw my brother and noticed he looks a lot like Kenny Loggins. So we took a picture of him with them, and then I found a picture of Kenny Loggins on the web and I thought it was funny how much they do look alike.

Mercy River Event


A few posts ago, I mentioned a singing group called Mercy River and how much I love their music. Well, I was thrilled when I asked if they would come sing for an event that I was planning and they accepted.

We put together a special night and invited about 50 couples that we are close to and almost all of them came. It was a great event and we had desserts enough to feed an army that we had put out for everyone.

Mercy River sang several of their songs and filled us with their wonderful spirit and great love for the Savior.

After it was over, we visited with many of the guests and they all seemed to really enjoy it so I was happy about that.

This picture that I have included with this post is Julie and I with Mercy River.

Thanks Mercy River for spending this evening enriching our lives. You can find their website at mercyrivermusic.com

Wednesday, January 13, 2010

Even More Unscheduled ER Visit

Today (Wednesday) I was getting ready for work and all of a sudden my upper body started to go numb. The kind of feeling you get when you hit your funny bone and your arm goes numb. That was what I felt like, then I started feeling light headed so I decided I better lay down and fast.
After doing so, I sat there on the floor for a few minutes and then wondered if it was a stroke, so I took the test. I stated the Alphabet and found that I did it fine. So most likely not a stroke. Then I wondered if it was a heart attack. I did find it difficult to breath when it happened so I wasn't sure. I called Julie and she rushed home and took me right to the ER. They ran blood tests and hooked me up to the EKG machine. then they decided they wanted to run an MRI. all tests came out fine and finally they just flat out said they didn't know what it was.

After 7 hrs in the ER, they released me and figure it must have had something to do with my Cancer.

I'm feeling fine now and resting at home and plan on getting up tomorrow and going to work. Lets hope that this same thing doesn't happen again tomorrow.

Tuesday, January 12, 2010

Unscheduled OUCH !!

Monday afternoon I started getting a pain in my right shoulder and didn't think much of it but then it started getting worse so I called my Dr.

He was hoping it wasn't in my right shoulder but it was. He then was concerned that it was something coming from my Liver. He set up a Ultrasound for this morning. I went in and did that and they decided they wanted to xray my shoulder.

After several hours, he called me back and said that the xray looked normal and the Ultrasound didn't show anything unusual, So I have been given a steroid for the pain in my shoulder that is supposed to help. We will see how it goes.

For now, I am just hoping to get the pain down to a level that I can deal with and get back to work. Lots to do, not enough time to do it.

Monday, January 11, 2010

A new Year - A new Outlook


I am excited to tell all of you that I recently found the best medicine for Cancer. - Your Mind. I have found that positive attitude and comments are going to get me through this trial in my life.
Thrive to Survive -

So, having said that, I will not be changing anything. I have had this attitude since the beginning and it will continue to be the way I live.

Monday, January 4, 2010

Our First Broken Bone

Who would have thought that Cody would have been the first to break something. Of course he is a boy but the most I ever thought he would do would be to strain his video playing thumbs. JayDee was always our more adventurous child and I thought she would be the one to get stitches or wear a pink cast. She played just as hard as the little boys in our neighborhood, in fact, she had more male friends than she had female friends. The kids always just considered her one of the boys until she was in Jr High and then they became little lap puppies begging for her attention. Of course that's another story....

Anyway... Cody has a scout camp coming up this month and they are going to go snowboarding. Cody and his dad went out last month and found the perfect snowboard and goggles for the occasion. Friday I took him out to get him his snowboarding boots, he couldn't wait to get on a hill. Cody has never been on a snowboard before and so he wanted to give it some practice runs before the big scout adventure. Saturday morning came and he and his friend decided that it was the perfect day to try out the new snowboard. Do I really need to say more????

Cody went down the hill in our old neighborhood with two successful rides but on the third time down he fell. All I can say is that it's a good thing his dad stayed there to watch his boy because once Cody was down he didn't get up. After a short visit to the Insta-care, it was determined that Cody broke his left wrist with a compression fracture.

I must admit, I am a horrible mother. Here we are at the doctors, Cody is laying on the examination table with an ice pack on his wrist and the nurse is being so gentle and attentive to my injured son when the doctor comes in with the news that it is broken. Being the loving, caring mother that I am, I bust up laughing. See.... I'm a horrible mother!! I hurt for my son and I feel so bad that he got hurt but for some reason it still makes me laugh. I'm sure that if it had been a serious break I would have felt horrible for him but it wasn't bad enough for even a cast. He will have to wear a brace on his arm all day, every day for the next 4 weeks but he will be just fine.

Needless to say, Cody will not get to go with the boys on their scout snowboarding trip.

Friday, January 1, 2010

Happy New Year !!!


I just wanted to write today and say Happy New Year to all of you and to let you know, this year is going to be much better than last year. I am sure of it. I feel some good things are going to happen this year and I cant wait. Not sure what they are but I am sure it is going to be better than last year.

Julie and I already booked our first camping trip and cant wait for summer when we can get our trailer back out and up into the mountains. Just doing that gave us both much needed energy. The winter just seems to drag us down. We cant wait to get into the warm weather.

We also talked about and kind of planned on doing the "Redwood forest" drive this summer. We want to drive to Northern California and then drive the coast south to Anaheim and then go to Disneyland and then drive home stopping in Las Vegas to visit family then home.

That will be a good trip and we cant wait to get the warm weather here so we can get started. If any of you have any way of getting summer here sooner than it is supposed to, please let me know.