__Six Fighting Hearts_

Final post / Funeral Information

2011-01-24T19:09:00.002-07:00

As we say goodbye to someone each of us knew and loved, I feel it appropriate to close this blog.

Thanks to each of you that have faithfully followed us through the toughest trial of our lives, I know that Evan cherished each and every one of you.

There will be a viewing at McDougal Funeral homes (4330 So. Redwood Rd) from 6:00 - 8:00 pm Friday. The Funeral Services will be on Saturday at 11:00 a.m. with a short viewing at 10:00 - 10:45. (12070 So. Laurel Chase Dr. 1547 West) The obituary will be in the paper on Wednesday.

12:45

2011-01-22T01:02:00.002-07:00

At 12:45am January 22, 2011, Evan Jade Mattingly lost his battle with cancer. He has returned home to the arms of his Heavenly Father.

God be with you till we meet again my love.

1/18/2011

2011-01-18T12:36:00.002-07:00

Evan is going downhill quickly. The Hospice nurses were here today and said that it looks like Evan will be returning home to his Heavenly Father in a matter of days. They said that by tomorrow he will probably be in a coma.

I told a friend of ours that I would post some information for each of you. Our friends have been approached by many others wondering what they could do for our family, so they set up a memorial fund to help us get through the financial burdens ahead. The memorial fund is at the Mountain American Credit Union under "Evan Mattingly Memorial Fund" Thank you Dan and Charity for doing this for us.

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

Day To Day

2011-01-11T05:49:00.002-07:00

It seems that from day to day there isn't much change in Evan but once I sit back and think about it, I can see that every day he is a little weaker.

It gets harder for him to get up because it wears him down so much. He is now in bed 24/7 except when he gets up to use the restroom. Getting bathed is really a chore for him. He is beginning to struggle with what is real and what has been part of his dreams. Part of this is due to the pain meds but some of it has to do with the toxin levels in his body. They told me that this would happen. It is really hard for me to realize the reality of what's ahead for all of us.

On the up side, the drainage tube is working great to relieve Evan's discomfort and Hospice has been good to us. My work has been great about all of this, and is allowing me to work from home for as long as I need to. I can see the Lords hand in my life everyday as he pours out blessings upon me and my family.

Hospital Visit

2011-01-04T21:13:00.002-07:00

Evan went to the hospital yesterday to have a drainage tube placed in his abdomen but his blood was too thin. They kept him overnight and gave him 7 bags of plasma. After the surgery, they drained almost 5 liters of fluid out of his abdomen. He is now home and resting comfortably.

Oh by the way, I have decided that the LDS Hospital is the best one we have stayed at so far. Did you know that they have a menu to choose your food from and if you have a guest (that would be me) they can order something too but of course you have to have a credit card. lol This may not seem like much but if you have spent as much time in a hospital as I have, you would understand how nice it is to not have to worry about where you will have to drive to to get something to eat, not to mention the time you have to spend away from your loved one.

Thanks Julie and Travis for dinner! When you offered to bring it, I had no idea that I would need it so much. It was a very long day for all of us. Yummmmmm I ate way too much and it was so wonderful to visit with you.

Hospice

2010-12-29T16:36:00.002-07:00

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.

Christmas night in the ER

2010-12-26T18:27:00.003-07:00

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.

Christmas Miracles

2010-12-16T18:35:00.003-07:00

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.

Cruise to the Bahamas

2010-12-14T05:54:00.003-07:00

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.

Doctor Visit today

2010-12-01T14:25:00.002-07:00

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

Nothing

2010-11-21T20:56:00.002-07:00

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.

Another Hospital Visit

2010-11-16T20:42:00.003-07:00

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.

The battle continues

2010-11-14T18:22:00.002-07:00

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.

Playing the Numbers Game

2010-10-31T16:40:00.003-06:00

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.

So far so good

2010-10-21T07:55:00.003-06:00

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.

Night at the hospital

2010-10-15T06:48:00.002-06:00

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!

Bilirubin numbers

2010-10-06T13:19:00.003-06:00

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.

New Family Photo

2010-10-03T15:47:00.002-06:00

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.

No Treatment Tomorrow

2010-09-29T19:53:00.003-06:00

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.

And the pain continues

2010-09-28T12:49:00.002-06:00

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.

Ouch..

2010-09-12T09:28:00.003-06:00

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.

Another Round of Therespheres

2010-09-07T20:17:00.002-06:00

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 post

2010-08-22T18:33:00.002-06:00

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.

Update from Doctors Visit

2010-08-13T20:37:00.001-06:00

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

Medical Update

2010-08-09T13:36:00.002-06:00

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.

Smiles for Grandma

2010-08-03T07:17:00.003-06:00

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!!

Sydney Opera House and Sydney Bridge

2010-07-24T00:07:00.002-06:00

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 !!

2010-07-24T00:01:00.003-06:00

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

Our Grandson and another cake

2010-07-10T14:15:00.002-06:00

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

Summer Vacation

2010-07-04T12:50:00.002-06:00

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

2010-07-04T12:33:00.004-06:00

Endoscopy results

2010-06-27T06:32:00.003-06:00

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.

Liver

2010-06-14T11:12:00.004-06:00

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.

Today Another Shot (Sandastaton)

2010-05-18T11:38:00.002-06:00

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.

Latest Scan Results

2010-05-05T19:38:00.002-06:00

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.

Evan update

2010-05-01T18:37:00.002-06:00

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.

Smiles

2010-04-23T15:48:00.002-06:00

Parker smiling in his sleep

One day old

Meet our Grand baby

2010-04-22T19:55:00.002-06:00

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.

Monthly Sandastaton Shot

2010-04-18T09:26:00.002-06:00

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.

Liquid Gold

2010-04-12T07:17:00.002-06:00

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.

He Is Risen

2010-04-04T12:58:00.005-06:00

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.

Michael Bublé

2010-04-01T10:19:00.002-06:00

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

2010-04-01T10:13:00.003-06:00

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.

Doing good

2010-03-29T10:22:00.002-06:00

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.

Baby Showers

2010-03-20T18:41:00.003-06:00

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.

NASCAR Experience

2010-03-02T19:39:00.002-07:00

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

2010-03-02T19:32:00.003-07:00

Fiddler on the Roof

2010-02-20T21:08:00.003-07:00

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.

A Post from Another Blog

2010-02-17T07:18:00.003-07:00

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

Friday

2010-02-14T09:39:00.004-07:00

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 Feb 11th 2010

2010-02-11T18:19:00.002-07:00

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.

CT Scan Today

2010-02-02T15:57:00.003-07:00

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.

A Challenge for Everyone

2010-01-29T07:38:00.004-07:00

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

Funny Comparison

2010-01-24T12:32:00.003-07:00

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

2010-01-24T12:16:00.004-07:00

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

Even More Unscheduled ER Visit

2010-01-13T15:44:00.002-07:00

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.

Unscheduled OUCH !!

2010-01-12T18:15:00.002-07:00

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.

A new Year - A new Outlook

2010-01-11T07:40:00.004-07:00

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.

Our First Broken Bone

2010-01-04T09:55:00.004-07:00

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.

Happy New Year !!!

2010-01-01T16:56:00.002-07:00

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.

Too Cold for Me

2009-12-30T17:53:00.003-07:00

I dont know where you are as you read this Blog but here in Utah it is way to cold for me. It has been getting as low as the single digits at night and I seem to freeze no matter what I do. maybe it is just because I dont have any insulation on me any more but I dont know.

Any way, I hope you are all looking forward to summer as much as I am. as for my health, I have been feeling pretty good lately, I did have a cold yesterday but was able to get right back to work today. so far it hasnt been to bad.

Night Before Christmas

2009-12-24T17:34:00.002-07:00

So it is Christmas Eve tonight and we are sitting watching TV waiting for bedtime. Christmas is very different when you only have one child at home and he is 14. The excitement is just not the same. My guess is that we will be sleeping in. Not like years in the past when we were awake at 1:00am to open presents.

News from the CT Scan

2009-12-17T08:22:00.002-07:00

Yesterday I went to the Doctor's for my CT scan. YIPPY !!! It was as good as I could have hoped for. He said the Liver looks clean and the Tumors in the Lymph Nodes are much smaller than they were before. He was pleased with the results and said that I am good to go for another 3 months.

3 Months of no doctor visits, no hospital stays, no medical crap. Just peace and living.

Here's hoping for a lot more than 3 months.

Also, I found this in the Fox news website today. very promising.

"The complete genetic codes of two human cancers have been mapped for the first time. The move could herald a medical revolution in which every tumor can be targeted with personalized therapy."

Next Step

2009-12-15T07:06:00.002-07:00

Tomorrow, (Wednesday) I go in for another CT scan to see how well the radiation treatments worked that I did. They like to wait a while after the treatments so that they can get a better idea of how well they worked. That is why I am just now able to go in and have the tests.
As for how I feel, well I feel great to be honest. I haven't felt this good in a long time. I am starting to just live life normally and do everything that I want to do without having to deal with any side affects.

I am going to fight this and I plan on being around for a long, long time. !!!!

A Good Friend

2009-12-10T13:57:00.002-07:00

A Good Friend shared this poem with me today.. I thought it was worth passing it along.

DO NOT GO GENTLE INTO THAT GOOD NIGHT

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Joy and Heartbreak

2009-12-02T10:26:00.003-07:00

First the Joy....

Matt and JayDee just found out that they are having a BOY!! We are soooooo excited!!! I am crying with joy just thinking about having a little baby boy running around the house. They don't have a name for him yet but when they do, I know it will be perfect. The Doctor says he is a very active little boy and he gave them a run for their money when they were trying to see what sex he was. He is going to be just like his daddy... run... run...run

Now the Heartbreak...

Last night as Evan and I were getting ready for bed, Cody was in the shower singing to the radio. When he got out of the shower he was a little teary eyed and he said that he was listening to the song "Christmas shoes" and it reminded him of what was happening in his own life and it made him cry.

It breaks our hearts to have to see him go through this. No one should ever have to lose their dad, their best friend, when they are still so young. He needs his dad. How do you help your son cope with this? How am I going to cope with this?

My Health

2009-11-30T15:59:00.002-07:00

Today is Monday Sept 30th. my health has been pretty good the past few days and I have been able to keep up with the hustle and bustle of life but I feel it slipping. Lately my life has been so busy with trying to keep up at work, home, church, family, Cancer and time for me, that I feel like I am starting to go under water.

Some days I just want to scream and then I realize that no matter what I do, I still have to go on and get things done. Screaming only postpones the fact that I need to do things.

If I could take a stress test today, I am sure I would fail. I am sure I am off the charts. my only hope is that tomorrow is a new day and maybe I will somehow feel less stressed.

ThanksGiving Day

2009-11-27T08:29:00.003-07:00

Yesterday was ThanksGiving and we as a family were happy to be able to go to my sister Deb's home for dinner. It was great to see all of my family and visit and eat. There is nothing like spending time with Family.

Today (Friday) we have the day off so we have been putting up our Christmas decorations and getting ready for that great holiday. As I sit and ponder the upcoming season I hope that we all take time to remember what it is really about. The birth of our Savior Jesus Christ.

Remember, life is a gift we have been given and what we do with it is our choice. Make the best of it.

About the New Photo

2009-11-17T13:07:00.002-07:00

We decided that we needed to do a photo of our family for Christmas cards so we went out and took a photo for it. It was so cold but we did it fast so we could get back in the warm truck.

You might notice that our daughter is holding "their" dog Roscoe, he is part of the family but I wanted to let everyone know that is her dog, not ours so there would be no confusion.

Also noted was the fact that my hair is closer to Roscoe's than the snow in the background. Yes, I am going grey. To be honest, the color of my hair is the least of my worries, so I don't mind. I figure it might all have to come off one day and then I will look younger again. (smile)

What A Day !!

2009-11-16T18:18:00.002-07:00

Today was my Therasphere treatment which started arriving at the hospital at 6:30am for my appointment. After all the paper work and checking in and getting to my room they finally had me ready to go down to the Angio room and so I went. Wheeled down in my bed IV hooked up and all.
After getting down there, they let me sit and wait for a few minutes and then came and told me that my Radiation treatment was missing and they didn't know where it was, so back to my room I went. Sitting there waiting, my doctor came in after a while and was telling me how they couldn't find the stuff and in came the staff saying that they had it now and back down I went.

The treatment went fine and then they took me back to my room for recovery and I sat and talked with my wife and ate my lunch. It wasn't long before I was feeling ill and ended up vomiting my lunch. The nurse finally came in and gave me some prescriptions and discharged me and away we went. AT 3:00pm This was all for a procedure that lasts about 45 minutes. What a long day.

I am now home and very tired. But back to work I go. Tomorrow I am expected back.
So now we just wait a few weeks and then I get to go have my CT scan to see if any of the radiation is doing any good.

Last Scheduled Treatment for now

2009-11-15T17:29:00.002-07:00

Tomorrow, (Monday) I am scheduled for my Therasphere treatment which is radiation in the form of the microscopic glass beads that are injected directly into my Liver. I have had two of these treatments before so I am familiar with them.

That will be the last scheduled treatment for now. After that, I will wait a few months and then have another CT scan and they will see if there are any more tumors that have shown growth. Treatments will start all over again at that point. I am afraid it is a never ending battle.

but for now, I will just push forward and deal with what I have to deal with.

Thanks for all the thoughts and prayers on my behalf. I do appreciate it.

Today's Treatment

2009-11-10T16:36:00.002-07:00

Today I finished the last of the 15 treatments that I was scheduled for. It was kind of anti climactic. I just went in, did it and left.

Now I wait and see what they find in two or three months. Time will only tell what happens.

It does get frustrating living on this Roller Coaster that I am on. I guess when it comes right down to it, I will have to stay on this ride for the rest of my life so I better get used to it.

Rats,

12 Treatments Down 3 to Go !!

2009-11-06T13:57:00.003-07:00

Well,

I have been doing my radiation treatments now for almost 3 weeks and I have 3 to go. One monday, and then 2 on Tuesday. Once those are done, then I am scheduled to go in for another Therasphere radiation treatment on the 16th. That is the one where they put the microscopic glass beads in my Liver to kill the tumors there.

Once that is done, then I will start the Sandastaten shots and they will be one a month for as long as they are affective. The purpose of those is to stop the growth of the tumors that remain in me. They said it is pretty affective and will work for a while. I will continue to have CT scans most likely every two or three months to see if any new cancer tumors show up.

So there you have it, now you are up to date on my treatments and how I am doing.
Well, maybe not so much how I am doing but at least up to date on my treatments.

As for how I am doing, well Today is Friday and I am looking out the window towards the West and the sun is shining and the sky is blue. it is a beautiful day to be alive...

Another Treatment Different News

2009-10-29T15:47:00.003-06:00

So, welcome to the roller coaster of Cancer. Today I went in for my radiation treatment. I think it was my 6th and I talked to my oncologist while I was there and he said that in his opinion, he thinks that I should start the Sandastation shots as soon as I am done with my radiation. He says Sandastation is a great drug to stop the growth of the tumors that I have. It doesn't kill them or reverse any thing but kind of blocks them from growing.

I asked him what his opinion was on my outlook and he seemed to think 5 to 10 years was reasonable. So, even though one doctor said less, he thinks it will be more. Who knows what to think. I just know I want to be able to enjoy as many years as I have left.

So finally after so many visits to the doctor's office, I have a little bit of hope and good news that I might be around for a while.

Just keeping you all up to date and letting you know what a roller coaster Cancer is. The emotions run high one day and are subdued the next. It is a strange thing to deal with.

Treatment 4 down 11 more to go

2009-10-27T19:26:00.003-06:00

Yes, I have had 4 radiation treatments and am doing fine. They said that I would feel it after a while but so far it has been basically like having an xray.. I hope it stays this way.

I did want to share something else with all of you. The other day, a good friend of mine shared a song with me and I couldn't find it on the Internet so I went to the store and bought it. I LOVE IT. I am sharing the website with you all and if you go there, it will start playing the music from the album. The first song is my favorite and the last song is sad but touching. It is about a woman that had Cancer and died. Its called "the robe" it is #10 on the CD The website doesnt ever play it. sorry.

www.mercyrivermusic.com

I hope you love it as much as I do. Remember to Laugh Love and Live.....

Day 1 for Radiation

2009-10-22T17:53:00.002-06:00

Today was my first Radiation treatment of the 15 that I will be having. They said that it would be painless and they were correct. It didn't affect me at all, and that was 4 hours ago. They said that after several of the visits I might get tired but we will see.

anyway, I had them take a picture so you could see the machine that they used to shoot the radiation into my body.

14 more to go and then we will see how we are doing. wish me luck !!

Radiation Treatments

2009-10-19T12:56:00.002-06:00

Well, I set up my Radiation treatments to start this Thursday and go every week day for 3 weeks. The first day they said I would be there for a few hours as they get everything set up and documented and what ever else they need to do, but then after that, it will be 15 minutes in and out.

I asked them about the side affects and the doctor said that I will likely feel tired, have a little nausea, and get a slight sunburn on my stomach. I told him that sounds just like a vacation to Mexico, so I think I will just wear my sunglasses and Ipod and spray some tanning lotion on me when I go in and it will be just as good as a vacation to Mexico without having to drink the water.

Tattoo's today

2009-10-15T17:05:00.003-06:00

Today I went in to have my visit prior to my radiation treatment and the doctor showed me the results of the scans that I had the past two days. It showed that my liver still has 3 dots of Cancer on it. Also it shows a big white dot on a Lymph Node that is right by my spine.
So today they did another CT scan and then gave me 5 Tattoo's that are permanent dots on my chest, tummy and sides. They are only dots so it isn't like it will even be seen if I have my shirt off. Not that I go without a shirt often. I have too big of a scar to bare it.

So the doctor said that he wanted to do the 3 weeks of Radiation starting next Wednesday and then when that is done on the Lymph Nodes, then he wants to schedule another Theresphere treatment for the tumors on my Liver. It will be two days in the hospital. One for the mapping and the next for the treatment. (about 7 days between)

That is the current plan. The doc did have some good news and that was that he was not going to start the sandostatin shots (chemo) so I will wait to see how long I can go without that. He thinks the longer I can wait without symptoms the better off I will be.

He did confirm again that this is terminal and that I shouldn't plan on more than 5 to 10 years. Oh well, I will take what I can get and enjoy them. Remember, you shouldn't worry about what you cant change. I cant change the fact that I have Cancer so I will not worry about it.

Scan again

2009-10-14T17:24:00.002-06:00

So today was day two and scan two. They did the scan of my full body with the radioactive stuff in me which shows up on the scan. It was not painful but long and you have to lay there without moving for about an hour and then they did another scan that took another 30 minutes. It was driving me nuts to sit there perfectly still for so long. If you move, then they have to start that segment over so I didn't want to do that.

any way, I had the Lab tech take a picture of me in the scanner so you could see what it looks like. Now I just have to wait till tomorrow and talk to the Doctor about what he see's on the scan.

I did sneak into his office after the scan to ask him a question. I get asked all the time what stage of Cancer do I have. Well to be honest, I never knew, so I asked him. He simply looked at me and with a little hesitation said that I am at stage 4. I asked what stage is next and that is when he told me that there are not any further stages. Ouch !! Well, I guess I will wait till tomorrow and find out what he says and then post the results.

Octreoscan Today

2009-10-13T08:29:00.002-06:00

I am scheduled for my scan today but to be honest, I dont know what that means. I only know that they called the other day and said that the stuff they use is coming from Canada and wasnt going to be here in time for my earlier appointment so they changed it to 10:30am. I guess it is really time sensitive stuff so they only ship it right before it is being used.

So, I have to go in at 10:30am then after what ever they do, I have to go back at 2:30pm for the rest of the scan.

It is really an unknown at this time as to what they are going to do but I will add a post later when I understand what it is going to be.

Doctors Orders (not sugar coated)

2009-10-05T18:32:00.001-06:00

Today I had my visit with my Doctor to find out what was going to be the best treatment for the new Cancer that has manifested itself in my Lymph Nodes.
As many of you know, doctors are taught not to sugar coat any thing so they tell it as it is and I guess I was just not quite prepared for that today.

So what did he say, well he said that I have some Lymph Nodes that are about 2 inches in diameter and they are normally about ½ inch so they are getting bigger. He was hoping that they would not grow and that my Cancer would just not be an issue. Unfortunately that is not the case and I will need to start treatments to slow the progress.

The doctor then said that this “is not curable” but that he can slow it down and try to give me some good years. I don’t know how many that is and he didn’t know either but he said he was hoping to work with a 20 year plan and now he is looking at a 10 year plan for treatment.

Basically that means starting with some radiation (Monday through Friday for 3 weeks) and then after that treatment stops being affective then they will start Chemo and do that to slow the progress as well. He did mention that there are some new drugs that are coming on the market that might be able to help in my Cancer but that they are not available yet. Maybe in a year or so.
The key is that as long as they can slow the cancer the better chance they will have at finding better treatments.

Yes, this was a shock to Julie and I and we are not going to just lay down and die. We are going to fight the battle and win. If I have 10 years to live, well then I am going to live those years the best I can. If I live longer, then I didn’t waste the first 10 years.

You don’t always get a chance to know your own mortality but when you are told that it looks like it is going to be cut short, then it does change your outlook on life. The good news is that I am going to live like I am dieing. (like the song). That way, I can make the best of every day and not sweat the small stuff.

I hope you all know that I am really okay with what ever happens, I don’t want to spend time worried about what might happen but rather on what I can do to make life the best.

I am sorry this Post was as long as it was but I had a lot to cover and will keep you posted on what the schedule is for treatments when I start them. I know that my first step is to have a Octrioscan on Oct. 13th and 14th and then the 15th I am supposed to go in for my first visit for the Radiation so I don’t know if I will get a treatment that day or just a visit for the setup of the treatments.

Remember, God is looking over each of us and I know without doubt that he has been watching over me. I have been blessed beyond what I deserve and if he see’s fit, I will be around for a while. If he wants me back, I will go when he wants me.

Oct 1, 1966

2009-10-01T06:54:00.004-06:00

This is my favorite day!!

Why, you ask??

Because it was the day that my sweetheart was born.

I am the luckiest girl in the world because of this day!! To take a famous line from a movie "you complete me" pales in comparison to how much you truly mean to me.

You are my hero!!

Happy Birthday Tweetie, I hope you have the best day ever!!

Finally heard from the Doctor today

2009-09-25T13:37:00.002-06:00

So I finally heard from the Doctor today and it was uh to say the least, not informative.
He basically said that I have a couple of options, I can do Chemo, but he doesnt suggest it. I can do Radiation but he isnt sure now is the best time to do it, or I can wait a few months and see where we are. Maybe do radiation at that time.

It was like, well, tell me what is best and lets do it. He said that there is no right and wrong way to treat my cancer. It just isnt that easy. It isnt going to hurt to wait but if we do Radiation now, then he said we cant do it again in that area later if we need to.

So he said he was going to be talking with my other Doctor next week and decide what they think is best and then I have an appointment on the 5th to go in and discuss what they want to do.

Not a lot of news for an update but that is the way I feel as well. I still dont know what is going to happen. It is all up in the air right now and I will just have to wait and see.

Bucket List

2009-09-21T20:13:00.002-06:00

Okay, so most of you have heard of the movie where the guy creates a bucket list of things that he wants to do before he dies.

Well, to be honest I haven't seen it so I don't even know what the movie is called but any way, we got talking about that camping the other week with some friends and now with the news that I have more Cancer it really made me think about what would be on my bucket list.

After thinking about it for a long time, really there are only a few things that I would put on that list.

obviously one of the things I would like is to live longer but this list is supposed to be things you can do and say you have done them. so I came up with a few.

1. Take my wife on a cruise
2. Catch a big fish deep sea fishing
3. Go to a NASCAR race
4. Travel to Greece for a Vacation

I have placed those 4 on my list and I really don't think I will get to do more than maybe one of them due to finances even if I live 20 or 30 more years. but those are the things I would love to do.

Possible H1N1

2009-09-21T20:06:00.002-06:00

Well as I mentioned before I was sick over the weekend with the Flu and when I was watching the news today they said that all of the Flu cases in Utah have all been H1N1... Not good, especially if you have Cancer. I seem to have gotten over what ever I had so I guess that is good.

I also called my Dr. today to see why I havent heard anything from him yet about treatment and it turns out he is on vacation this week so they contacted him and called me back and said that the Radiation panel is meeting tomorrow (Tuesday) and they are going to discuss my case and then make the recomendation of what treatment I should do. This will either be Radiation of Chemo, they will let me know and I will keep you updated.

Update or not

2009-09-20T13:19:00.002-06:00

So I was hoping to have an update from the doctor by now but I called Friday to see what he would say and he was off. So I guess I get to wait till Monday or maybe Tuesday for an update.

Funny, in my last post, I mentioned that I was feeling better than ever and was doing great and then it hit me. I got sick with what I can only imagine was a flu. It hit me Friday night and I was up all night with the shakes and could not get warm no matter how much I tried so finally Julie filled the tub at about 1:00am with some really warm water and I got in and that helped. I have been home in bed all day Saturday and Today (Sunday). it has been a real bummer of a weekend because Cody and I were planning on going fishing with a friend from my work and couldn't go.

On to better news,

Our daughter and son in law have announced that they are pregnant and will be having a baby in the middle of April 2010. Yes, that means we will be Grand Parents. Yippy !!!

No News was supposed to be Good News

2009-09-16T18:33:00.002-06:00

Well, so much for wishing. I had my 3 month check up today (CT Scan) and they said my Liver looks fine but some of my Lymph Nodes are growing in size and they are recommending some Radiation.

I was really hoping to be out of the woods but with Cancer, I should have known better. Any way the Dr said that he would be getting with my other doctor and discussing what the best way to treat me is and then call me in a day or two.

I should know what they are going to do soon and will update everyone on here. Sorry for having to share the news but on a side note, I feel better than ever, I don't feel sick, I am working hard at work and playing hard at home. I cant think of a better time of my life than right now. Don't feel sorry for me. I am fine. I WILL be fine. I am not going any where. I am too stubborn...

Thanks

Monday Ride !!

2009-09-10T12:54:00.003-06:00

Well, since Monday was a holiday and I had the day off, I went for a bike ride with a few of my friends from work and we did about 350 miles. We ended up in Wyoming for lunch and then drove down the Mirror Lake Hwy on our way back. Great ride !! We had 5 of us riding and the weather was perfect.

any way, here is one of the pictures that were taken at the top of the mountain.

Camping with my sister

2009-08-28T07:20:00.003-06:00

A couple of weeks ago, Cody and I went camping with my sister and her kids. Yes, it was just me and Cody, Evan drove the trailer up and dropped us off. Evan is so sweet to accommodate my need to go camping as often as possible. Evan rejoined us in the morning for breakfast and some fishing time with his son.

Cody discovered how much fun it was to go fishing and he spent every minute at the waters edge. He was so cute when it came to gutting his own fish because he wouldn't touch it so I had to get him some rubber gloves. He was very proud of his little fish and even prouder that his Aunt Neenie wanted to eat it for dinner.

Cody's cousin, Eric, also caught a couple of fish so my sister was well supplied for her dinner treat.

Grandpuppy

2009-08-28T06:48:00.008-06:00

This is the picture that Evan took with his phone the day that Matt and JayDee come home from Colorado Springs. As you can see, they have a new puppy and they named him Rosco Jenkins Jones. They aren't ready to give us a grandchild yet so we will just have to make due with a grandpuppy. :o) He is pretty cute.

Here is a video clip I took of him chasing a laser light in our living room.

Ward (Church) Campout

2009-08-23T09:22:00.006-06:00

This past weekend we went camping with our ward, it was great fun and a lot of families came.
We camped at Rockport lake campground. It was about 100f HOT during the day but the evenings cooled down.

I thought I would post some pictures for everyone to see.

We will be camping again next weekend and again, I will post more pictures.

All is Well

2009-08-17T08:12:00.003-06:00

So it has been a while since I posted on here but just wanted to update everyone. Things are going fine with my health. I have gained my energy back and feel great. We have been busy trying to get out and enjoy our summer so we go camping almost every weekend and have many more camping trips planned over the next couple of months.

So for updates, I guess there really isnt much to say other than I am healthy and doing great. Even my apitite is coming back and I am able to eat more and more.

As you know, I am not much of a writer but I will try and post some pictures of our camping trips when we get back.

Take care

Dr Visit

2009-07-28T07:33:00.003-06:00

Well, last week Julie went in for surgery on her feet to remove some nerves that were causing her feet pain when she would walk a lot. They did both feet and she is pretty tender now. She has been staying down a lot but every day she gets better and better, in fact today she returned to work.
She still has to wear the funny shoes that they gave her for another couple of weeks but then she will be back to normal.

Well, when she was in surgery, I took the time to go visit my doctor (same location) and asked him how the results looked from my last test that they had me take. He said that everything looked great and normal and that there is nothing more that needs to be done. We just need to do check ups to make sure things stay that way and I am good to go.

Sad News-- In Memory Of Chris O'Connor

2009-07-18T17:36:00.003-06:00

I have been deeply saddened by the news that a friend that we had met online through my Cancer who shared the same Cancer has passed away Friday night. He left behind a young wife and son who will try to move forward with their life.

Kristin sadly had to watch her husband suffer with this terrible disease for such a long time and I can only imagine what it must be like to watch a loved one suffer so much.

Kristin and Shane with be in our thoughts and prayers for a long time as they move forward with memories of Chris and the love that he had and still has for them.

If you would like to read about him and their family you can link to their blog on my blog under the "Blogs I read" it is the one called O'Connor family blog.

Kristin, we hope you will still stay in touch and keep us up to date on how you are doing.

In Memory Of Chris O'Connor

Nauvoo

2009-07-12T21:38:00.000-06:00

We took our first family vacation in about 4 years and we chose to go visit the Church Historical sites of Nauvoo.

It was an amazing trip starting with a wonderful visit with Matt and JayDee in their home in Colorado Springs. It was great to see our kids again and they were so sweet to let us stay with them in their home Sunday night.

Monday we took a tour of the Denver Mint then we were on our way again making a stop at Liberty Jail just outside Kansas City. After a good night’s sleep, we took up our journey again and visited Adam-Ondi-Ahman and finally arrived in Nauvoo around 6:00pm.

We spent all day Wednesday visiting the historical buildings/homes in Nauvoo then Thursday morning we went to the temple then finished seeing more homes.

Friday we packed up and left the hotel but before we started for home we stopped in Carthage to see the Jail.

I can't post all of our pictures but here are some highlights.

2009-07-12T21:37:00.003-06:00

Better late than never

2009-07-10T15:51:00.009-06:00

Okay so it's been a month since Fathers Day and I am just now posting. Sorry :o)

Evan is still struggling to keep up his energy levels and mowing the lawn just about wipes him out for nearly the whole day after he mows. Yes, I know that Cody is old enough to mow and he does, but there are times when it needs to be done and Cody is not available.

For Fathers Day, a day early, Evan got a riding lawn mower and now he and Cody fight over who gets to mow the grass.

It is just nice to know that Evan can now get the lawn mowed without it putting him down in bed.

All is well

2009-06-24T05:58:00.004-06:00

Great news!!! We went to the doctors yesterday and he said that the blood work was actually better than he had ever seen it. When the nurse told Evan that his numbers were elevated, she didn't know that it had been higher in the past. Normal is about 50 and Evan is at 53 but prior to this test it had been in the 80's.

The Doctor said that the problems Evan has been experiencing were a result of his pancreas not creating enough digestive enzymes. Evan is now well on his way to feeling fantastic.

I love modern technology... Evan had his CT scan of his liver yesterday as well and we were able to immediately see the results. His liver has never looked better!!! The tumors are continuing to die even the small ones that were not specifically targeted by the radiation treatments.

We couldn't possibly have received better news!! Evan is going to be around for many years to come. This is a direct result of your prayers and the Lords will. Thank you for the many sustaining prayers you have offered on our behalf, there are no words that could fully describe our gratitude.

Julie

News from the Doc

2009-06-18T20:37:00.003-06:00

So, I went in and they ran a blood test on me and found that my numbers are slightly elevated but they aren't to bad. They are not sure what is causing this so they want to do a CT scan on June 23rd to see if there are any new tumors in my liver that have started growing.
We are confident that all will be taken care of. The Doctors are doing what they can and the Lord is doing the rest. Rest easy knowing that I am in the lords hands.

Here is a video that you might like. it shows just what the lord can do with his hands.

http://www.youtube.com/watch?v=g_vCqSebVEw

cut and paste that into a web browser and then it will play from YouTube.

Medical News

2009-06-17T07:46:00.002-06:00

So, I have been doing fine lately but a few weeks ago I started having some symptoms that had me concerned and after talking with a couple of doctors they both had the same thing to say. "it looks like your liver is having issues" so with that I called my doctor and talked to my specialist and she said that she wants me to come in and have blood drawn and see what it shows. she then said to watch and see if I start turning yellow and if so to let her know.

Well, that night my wife turned to me and said that I looked yellow. So, I am going in today (Wednesday) and having blood drawn and also they might do a CT scan and we will see what is going on. Not sure at this point but I guess we will find out.

I will update when I get news back.

________Six Fighting Hearts_______