Wednesday, July 30, 2008

Dr. Visit

Today we went to see the doctor because of the concern over Evan’s incision. The doctor decided to open up a section of the incision and when he did, he found a large blood clot that needed to be removed. I guess that once you open up the incision it can’t be closed back up because you are pretty much guaranteed an infection so the doctor packed it up with gauze and covered it up. He now has the first opening that is 1 inch wide, 1 ½ inches long and 1 inch deep and this new opening that is about 4 inches long, 2 inches wide and 1 inch deep. We also will have to give him a new medicine to stop the drainage and this should help him heal a little faster. This new medicine is given three times a day by syringe. This has set us back a bit and will require a lot more care on my part. We also found out that Evan will be on the TPN for another 2 -3 weeks which means he will still not be able to eat or drink anything for that long. Physically, Evan still tires out easily but every day he is getting stronger.

Tuesday, July 29, 2008


My house looks like a pharmacy; we have everything we need to play doctor. Teehehehe Evan says I am a PUN, a Personal Unregistered Nurse. I am really getting very good at this nursing thing. The home nurse has shown me how to do everything so I am pretty much on my own now. Every night I have to hook up a TPN bag (this is liquid food/nourishment) to Evan’s PIC line in his arm. Hooking up the TPN is a very long process because it has to be so sterile and I have to add vitamins and insulin to the TPN bag. The TPN is full of sugar so I have to check Evan’s glucose levels and give him insulin shots several times during the night. In the morning I have to disconnect the TPN and flush out the PIC line so that it doesn’t get plugged. Next I have to crush up his meds and liquefy them so I and push them into his “J” tube. Of course there is the replacement of the bandages and the list goes on an on. My days are very busy but I am learning a lot. It is looking like there is another spot on Evan’s incision that is going bad, but I will place my scheduled call into the doctor tomorrow morning and see if we can get an appointment to see him. The doctor might have to re-open the incision to drain the fluid that is causing all of the problems and then close it back up again. If he does this, it will just be an in-office procedure. I feel so blessed that we have the jobs that we have and that I can take the time to here to take care of my sweetheart. I must send a special thanks to our co-workers at UDOT and Kennecott for all of their support during our absences.

Monday, July 28, 2008

Home at last

We are finally home at last!

Dr. Ott and Evan

Sunday morning 6:00am Dr. Ott came to see us before he went to his church meetings. It's nice to know that your Doctor is being led by the spirit.

Sunday, July 27, 2008

Almost Home

The Doctor said we might be going home tomorrow (Monday). :o) Evan still can't eat anything and is fed through a PIC line that goes from under his right arm into his heart. They tried to feed him through the “J” line in his abdomen but it caused some leaking internally. He is still trying to keep things interesting for the Doctor. Teehehehe We will have a nurse come to our house everyday to give him his bag of liquid dinner, check his vitals, and change his dressings. I will still need to keep close vigilance on him so I won’t be going out any where for a while but our neighbors might see us walking to the mailbox for one of our daily walks. He still gets tired easily but perks up quickly after a little cat nap. I can’t think of anything else to share so I will wish each of you a happy Sunday and we will see you all soon.

Evan & Julie

Friday, July 25, 2008

It only gets better

Everyday is better than the last. HE’S BACK!!! Today Evan was laughing and joking with everyone, he even challenged the nurses to a race down the hall. Of course they graciously declined because Evan could beat them. (not really) His walks tire him out but after a little cat nap, he is ready to laugh and play some more. My only concern is his incision; at the top, the skin has begun to die and has turned gray and mushy. This has left a hole about the size of a quarter and about an inch deep. It was only about the size of a dime yesterday but it is started moving down the incision. The doc has put a stop to it we hope but he is not going to be able to stitch it back together so it will just have to close on it’s own. He is also concerned that there is fluid trapped beneath the surface of the incision and is considering opening it back up to release it. This really is fairly minor and shouldn’t set his recovery back, it has just made it more interesting. Dr. Ott comes in and checks on him twice a day and seems pleased with Evan’s progress.

Saturday, I get to play with Cody. It has been hard to pawn him out to others and not get to see him very often so I am making tomorrow his day. We are going to go to Lagoon!! Cody has stayed with Julie and Travis Naisbitt (our friends and neighbors) for the first two nights and now he is with my sister, LaWaine. I have spent every day and every night at the hospital and the only time I am home is to take a quick shower and then back I go again. Evan has become to depend on me always being there and is feeling a little abandoned but he knows how important it is that I spend some time with our son. I have left him in the hands of his wonderful brothers and sisters, who are so sweet to take time out of their schedules to be with him. Evan is getting better at getting up and down and can do it without help now so there really isn’t a need for someone to be with him 24/7 anymore but for my own peace of mind, it is nice to know someone is close by. Saturday night I will be back up at the hospital ready to make the couch my bed again because it is too hard to be without him and it gives us both peace of mind.

Thank you again for all your love and support, we are truly humbled by your generosity and love.
Evan & Julie

Thursday, July 24, 2008

Singing and Dancing

First of all, Evan wants me to convey his gratitude and his love to all of you. I have been reading all of the wonderful messages to Evan that you all have posted. I also add my thanks for your words of encouragement, love and support. We have also, enjoyed the many visits we have received.

Today was a great day for Evan :o) When he woke up this morning he was ready to go for a walk. When he stood up and was waiting for us to gather all of his IV tubes and such, he did a little dance for us because he was feeling so good. Then when the nurse asked him where he wanted to walk to….(the most he has walked was about 10 yrds) his response was “I’m walking to Costco”. He took a lap around the whole 10th floor and he has taken 3 more laps since. He even sang a little song for the nurses on his walk. It is nice to see his personality coming back. He has been awake all day today with only a couple of cat naps earlier in the day. The doctor came in again to check Evan’s incision and found that his skin has blistered and has caused some concern in regards to infection but nothing to worry too much about tonight.

I need to clarify some information on the type of cancer Evan has. Neuroendocrine Cancer is still in the Carsinoid cancer family and is a slow growing cancer. There are three levels of Neuroedocrine cancer and Evan has the lowest level. Really, the news we received was not as bad as I originally thought. After doing some research and thinking through what I had been told, I realized that perhaps this is a blessing. When we were told that it was Carsinoid cancer, we were told that chemo wouldn’t work on it. When the surgery was over, the doctor said that the tumors in the liver were too many to count. My theory is that if it was Carsinoid then all we could do would be to sit back and watch the tumors grow and not do a thing about them, but with this other low level cancer, we now have the option to battle the tumors with chemo. We have the option to fight now where we didn’t have any options before.

Thanks again for all you do for our family

Evan & Julie

Wednesday, July 23, 2008

Wow, what a day!!

I don't know if I should say today was a good day or a bad day. I stayed with Evan all night and he slept very well and in the morning he seemed to be doing great. I left him in the care of our daughter while I escaped to go home for a quick shower and a sandwich. While I was out, it got a little scary for her because Evan started coughing (which is a really good thing) but it made her a bit nervous. The floor doctor came in and said that he was not breathing deep enough because he was giving himself too much pain medicine with the medicine pump he got last night. If he didn’t start breathing deeper then he would be on his way to getting pneumonia so the doc took his med pump away. (silly boy) So, when I returned, we took him for a walk and then sat him in a chair to stimulate his breathing. While he was sitting there I noticed that his heart rate was up really high (150) and the alarms were going off. No one seemed to be concerned about it because no one came so I thought it was okay. (dummy me) After sitting there for about 3 hours, Dr. Ott came in and ushered everyone out of the room so he could check Evan. He noticed Evans heart rate and pressed the nurse button but of course no one responded (as usual). The doctor ran down the hall and the next thing we knew, every nurse and floor doctor was trailing after Dr. Ott and into Evan’s room. Words like “fibrillation” and “shock trauma” were being used. They were going to admit him back into ICU but Dr. Ott gave Evan an injection of some kind that slows down the heart rate and that seemed to do the trick. His heart rate quickly lowered down to 100 and now that he is sleeping it has lowered down to 74. He took another walk just before bed and sat in his chair for a bit and seems to be doing great again. They have changed his pain meds to a non-sleepy kind which should help him to breath deeper and not get so relaxed. I will stay the night again tonight to keep an eye on him.

Tuesday, July 22, 2008

Pathology Report

Well we just got the biopsy report back from pathology and it has been determined that the type of cancer Evan has is not Carcinoid cancer after all but is Neuroendocrine Cancer. In a month, once he has recovered from his surgery, he will have to go through chemo to try to get rid of the tumors in his liver. The report also showed that 28 out of the 29 lymph noids that were removed were full of cancer. So it looks like we have a longer battle ahead of us than we anticipated. He has been having a difficult time breathing today and we are thinking that it is because of the pain he has been in. The nurse has just hooked him up to a pump that will distribute his pain meds in 15 min increments instead of getting it all at once every 2 hours. If he can increase his oxygen saturation level then they will increase the dosage amount. We have a better nurse this evening than we did throughout the day but I am going to stay here at the hospital with him tonight anyway to make sure he is taken care of. Evan might be up to some visitors tomorrow but please call before you come just to make sure. His room is on the 10th floor in the tallest building here at the Intermountain Medical Center. (5300 South and just west of State St.) The number for his room is 507-1014.

Out of ICU

Yippy!!!! We are out of ICU!!! Evan has been moved to the 10th floor (Room 1014) and is looking and doing so much better today but he is still not up to visitors yet. They have had him up and sitting in a chair twice today, of course he didn't like that too much. He did great!!! He is doing a lot of sleeping but that is just what his body needs.

Monday, July 21, 2008

It's been a long day

It has been a very long day today that started at 4:00am. We arrived at the hospital at 5:30 and by the time we got checked in and had a chance to speak with the Doctor, it was just after 7 when they took Evan away for his surgery. They anticipated the surgery would take around 6 hours but it took 10 hours. As the hours ticked by, someone would call me to let me know how Evan was doing. Finally at around 7:00pm the surgery was over and the Doctor came to speak with me. He said that the tumor was larger than they thought it would be so it took them longer than expected. He said that the tumor was about the size of a large grapefruit and was fully removed. He then said that they didn't remove the two tumors in the liver because there was no point in removing the two and leaving 100 behind. They will biopsy the tumor to verify that it is Carsinoid cancer as they originally thought. If it is Carsinoid then they will do nothing at this point with the tumors in the liver but if it is another form of cancer then they will have to do chemo. We should find out the results of the biopsy on Wednesday or Thursday. They took Evan to the ICU and told me to wait until they came and got me. At 9:00pm I still hadn't been called back so after some checking, JayDee, Matt, Melody and myself were able to go and see him. It was very difficult to see him so miserable but it was good to see that he had color to his face. He was still not fully awake by the time that we all left but he knew we were there. It is now 11:55pm and I have only been home long enough to make this post. When I left him he was in room 507 but they will probably move him by tomorrow. Thanks for all of your prayers, phone calls and posted messages. I will continue to post information as Evan progresses through his recovery. We send all of you our love.

Evan & Julie

Sunday, July 20, 2008

Schedule Time for surgery

Tomorrow is the big day. We were told to be at the hospital at 5:30 in the morning so I imagine the surgery will start around 7:00. They said I need to go to the tallest building to check in, I don't know if this is going to be the same building that my room will be in but I'm sure Julie will post the room and phone number once I get settled in. Thanks to all of you for your thoughts and concerns. I gain strength knowing that others are there to support me and my family.


Friday, July 18, 2008

My Favorite Wallpaper

I love this picture because it is so peaceful. I wish I could be there all day.

Tuesday, July 15, 2008

Dedicated to My Wife.

This is a song that I dedicate to you dear. I love you.

I Love you dear,


Rushing To Get Ready

As you all know, I am scheduled for surgery on Monday July 21st a week from today. I am trying so hard to get all the little things done that I feel like need to be taken care of before the big day so that I wont have to worry that something didn’t get taken care of and I will miss the deadline for getting it done.

I am a bit OCD (Obsessive-Compulsive-Disorder) so that should explain what I mean. When I stop and think about it, I can’t think of many things that still need to be done but then some times it seems like there are a million things that I should be doing.

One of the other issues that we are facing is this mess that some of you are aware of with the “House” issue. I confronted the guy who did this to us and he just continues to lie and won’t face the fact that he is fully responsible for this mess.

I have just had to face the reality that what ever happens will happen and we are going to have to deal with it. So we might be moving into the second construction home at some point and trying to sell our house.

Today I talked with one of the Lien holders and he has been fantastic in understanding what we are going through. We ended up talking on the phone for about ½ an hour and really we have become pretty good friends. I won’t mention his name but I will tell you that if you ever need any hardware supplies, you can trust Burton Lumber.

This has been a little bit of a long entry but I wanted to update you on how it is going and I plan on one or two more entries before I go in Monday.

I really appreciate all the support I have been getting. It helps knowing that people really care.


Sunday, July 6, 2008

For those unfamiliar with Carcinoid Cancer as I was, the Zebra is the symbol that is used because it is very good at blending in and hiding. It can appear to look like something else.

Breast Cancer has the pink ribbon and Carcinoid Cancer has the Zebra. Now that I have been diagnosed I am clinging to everything that I can that gives me hope and my hope is that the Zebra that was inside me was found before it had a chance to look like something else.


Saturday, July 5, 2008

Thursday, July 3, 2008

Today was a Downer Day

Well, today is July 3rd and it was a downer day for me. I have been deeply depressed today due to several situations. I am trying to deal with a financial mess that a neighbor got me in to and today I was trying to work on it with no success.

I also am starting to get more anxiety about my surgery as each day goes by. I hate being in the hospital and the thought of surgery puts me into panic mode.

The only good news I got today was a phone call from a Carcinoid Cancer patient’s daughter who runs a big foundation for Carcinoid Cancer and she talked to me for a while and helped me feel better about it.

Her mother has survived her Cancer for the past Twenty years and is still doing fine. There is hope !!

She was able to get February 14th set aside as Carcinoid Cancer Awareness day in her state and that makes me want to push for the same thing here in Utah. I am going to try and set up a meeting with our Governor to see if I can push for awareness.

Well, that is all for today, I am hoping to feel better about life tomorrow.


Wednesday, July 2, 2008

Game Plan


I went to visit with the Oncologist yesterday and he advised me that he wants to do a surgery called a “Whipple” where they will be taking out the part of me where the Tumor is as well as 1/3 of my Pancreas.

The surgery is scheduled for July 21st and I will be in the hospital (Intermountain Medical Center 5400 S 700 W)for one week and then home recovering for four weeks.

He also advised that I should not need Radiation or Chemo after the surgery. I will just need to do regular check-ups and that I should be able to live a long healthy life.

Thank you all for your support as our “Fighting Hearts” battle through this.


Tuesday, July 1, 2008

Naming of My Blog

Just a quick note to let you know why I named my Blog "Four Fighting Hearts".

Julie and I have been married for Twenty years now and have two wonderful children and I just found out that I have a Carcinoid Tumor / Cancer.

So I thought it would be an easier way to share information with all of you on how I am doing by creating a Blog and updating it for everyone.

Well we as a Family are "Four" people, plus our Son-In-Law Matt. And we are all going to fight for my cure.

Hence the name "Four Fighting Hearts"