Final post / Funeral Information

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.