Today, January 12, is the date eight years ago, that we came very close to losing Brent. This was the 1st of many times that his life would be on the edge, but definitely the worst of them all. I could share all sorts of thoughts about that day, but I won't.

Instead, I will rejoice in the fact that it's been a pretty normal day. He went to church, taught a Sunday School lesson (ironically on the foreordination of man and the Plan of Salvation), cooked a roast for dinner, watched the Broncos win, and relaxed. Yesterday we went to the temple together for the first time in a very long time, and also went out to eat. We visited with Dennis and Jan and Angela the other night at a funeral viewing for Jan's moms husband, and Dennis made the comment that Brent was actually 'pink' not pasty gray. :)

Thanks for fighting, Brent, and staying here with us. Thanks for enduring all you have endured in the past eight years. Thanks for showing us some of the old Brent that we love and have missed.


In other news, Michelle started her job last Monday at Primary Children's Medical Center in Salt Lake, in the Neuro-Science Trauma Unit. We are glad to have her home for a little while and out of the boonies in Vernal. :) 

It's a new year, and along with it, a new way of life for us in the Moore home.

If you remember, one year ago, Brent was in the ICU at IMED with a hematocrit of 16, which is critical. Normal range for iron levels is 40+. That started a year of many questions and few answers. He ended up receiving approximately 30 units of blood, numerous iron infusions and a new drug costing $13,000 a shot which he gets every 8 weeks. He has not had to have any blood transfusions since August. His hematocrit went up and down all year long, with a slight upward trend. Right now he is receiving iron infusions every 2 weeks, and the Stelara every 8 weeks. Something is obviously working to his benefit, because as of 3 weeks ago, his crit was at 37! That was a miracle in and of itself.

With the increase in his blood levels, Brent has energy again. It is weird. It is very weird. The kids and I don't really know what to think. For so long, he has had no energy whatsoever. We were discussing the fact that David was 8 when Brent first got really sick in January of 2006. David is now 17. For half of his life, his Dad has been really sick, barely clinging to life in some instances. The atmosphere in our home has been kind of quiet and somber, because Brent is usually asleep or too sick to handle lots of noise and people. We have become accustomed to being quiet, waiting on him, and always, ALWAYS vacating the recliner if he comes into the living room. We became used to his moods of anger and frustration, and tried to not take things personally.

Fast forward to now, January 1, 2014. Brent is at a movie with Tina and David. I am home alone (I quite enjoy that) and last Saturday he and I attended a Mannheim Steamroller concert in Salt Lake. When the kids were all home over Christmas, he came into the living room and whoever was in his chair immediately got up and moved. He said "Geez, you guys don't have to vacate every time I walk into the room." We are just so used to things being that way. He is joking with the kids, and we see the old Brent peeking through.

I am not complaining, by any means. We are extremely thankful for the the many blessings and miracles that have occurred in our lives over the past 8 years. Just as we all had to change and conform to our new way of life 8 years ago, we have to change and conform back to some semblance of normalcy again. It is not easy. It has been a very long and difficult time for us, and we grew and changed permanently in many ways. We will not ever be who we once were. We have been through too much for us to ever be the same. We are stronger, better, braver, and much more humble and grateful.

I find myself kind of lost. I have put my entire being into taking care of Brent for so long that I don't know what to do with myself, or what I even want to do with myself. It is such a foreign feeling. I am on a quest to figure out what I want to be when I grow up. :)

The kids are the same way, not knowing what to think about having some of their old Dad back. It is awesome. We have truly been blessed. When we look back at what Brent has fought through and survived over the past 8 years, it really is a miracle that he is still with us. I would have given up many times, but he kept fighting against all odds, amazing his team of doctors, nutritionists, and surgeon.

We are not stupid enough to think that this is the end. We have been here before, and know that his condition changes in seconds. We know that he will never be truly healthy ever again, but we are thankful for how healthy he is right now. We will take each amazing good day as it comes and make the best of it. We will continue to watch with amazement as Brent works in his wood shop, builds things again, carves things again, does the dishes and laundry while I am at work, goes to work each day to an amazing job with the best people ever, eats normal food, and goes to movies and concerts.

We started 2013 in the ICU, and ended 2013 happily at home. We are ready for whatever 2014 has to offer, good or bad. It almost feels like some sense of achievement. We made it. We survived another crazy year. We are back.

Brent shaved off his beard/mustache today . . . either he is going back to work full-time or he was called to a leadership position in our church. You can guess. :)

I know I was shocked at how different he looks. It's been a year. I know a little one year old girl who adores him that will not recognize him. Can't wait to see her reaction.

Sorry, Dennis and Leon, he is no longer your look alike.

Love you, Brent, and am very thankful you are doing so well.

Lisa

Well, it would seem that we have hit a little bit of good luck this week. It's kind of weird.

Last week when we met with our G.I. specialist, we commented that we would have a party if Brent ever made it to 30 on his hematocrit. Todays blood tests were the best he has had in over a year. His crit was at 32!!! That is still low for a normal person, but for Brent it is phenomenal! Yay! What a nice surprise (blessing). We partied with our dear friends at our group Family Home Evening that we have once a month.

Tomorrow Brent is having another surgery on his eye. A year ago he had his left lens replaced due to severe cataracts from Prednisone. Tomorrow he will have the other lens replaced. Yay! Another blessing, since he has to be healthy enough for the surgery.

Today I got a job. Woo hoo! It is really not a job I want to do for the rest of my life, but it's a job for now. It is just a part-time temporary job at the BYU Bookstore. I am hoping that I can get a foot in the door and that it leads to something more permanent. I would actually like to use my degree some day.

We do recognize our blessings. We take each day as a gift, and are very aware that we are blessed each day that Brent continues to improve. We know all too well that things can change in a matter of seconds. Thank you for your love and prayers in our behalf. We have the best support system anyone could ever have. We are surrounded by family (near and far), friends, neighbors, and co-workers. Thank you.

We are praying for Michelle right now to be able to find a new job and be able to get out of Vernal. Now that she has her first year of nursing under her belt, she is hoping to find something back here, or somewhere closer to civilization. :)

Lisa

Quick update. I am sorry for those of you who check in frequently and I don't update very often. That is a good thing though, since that means he is doing well.

Things have been going fairly well around here. Brent's blood levels are doing an uphill climb slowly but surely. He has highs and lows, but hasn't had a transfusion since August. :)

Brent is getting heavy doses of IV iron every three weeks, up until this week, and now will be getting it every two weeks to hopefully alleviate the ups and downs. We are hoping that by switching to every two weeks, we can continue on the uphill climb with his blood levels with fewer lows. The iron infusions are a bear, and make him sick for a couple of days, but seem to be helping. We also think the injections of Stelara are helping. Good thing, considering the cost. :/

Brent has now been fighting the severe anemia for over a year. To say that he is tired of it is, (A) a pun, and (B) an understatement. It is frustrating to not have the energy to even walk from the bedroom into the kitchen, and our house is small. It is frustrating to not be able to do what he wants to do. Going for a simple walk around the neighborhood is out of the question, and walking from his truck to his office makes him thoroughly exhausted. Soooo, here's hoping that the uphill climb continues. It is nice to see him have a little more energy.

We were able to attend our niece, Gabbi's, wedding in October. It was so great to have the entire Moore family in the same place. It has been way too long. Brent survived with no complications from traveling. Oh, and I thoroughly enjoy the new speed limits from Provo to St. George. :) 

Michelle is hoping and praying for a job to open up back here in civilization. Her year in Vernal is up in December. Not that she is counting the days or anything. If anyone has any hospital connections, feel free to share. She is an amazing R.N. with lots of experience.

David survived another football season, and this one was injury free. I like those kind.

Thanks for checking up on us. We truly appreciate and love our family and friends, and feel your strength and support.

Lisa

Things around here are pretty much the same. Brent is doing ok, and actually hasn't needed any blood for a whole month! Yay! He is receiving iron infusions every 3 weeks, and we think that the iron combined with the Stellara injection is somehow helping. It is such a trial drug with Crohn's patients that nobody knows how often he should have it. Right now we are at every 8 weeks, but that may change to more frequently if the counts start going down again before the 8 weeks is up. We are very thankful that the blood counts have gotten a little better. He has more strength and energy and is able to work more and get some things accomplished. It's nice to see him able to do a few more things. Thanks for checking in, we are thankful for you!

Things around here have been pretty much the same with Brent. He has still been getting blood every two to three weeks. We lost count, but think we are in the range of about 30 units since January. Brent is receiving two more units today, along with an iron infusion. He will spend the entire day at IV Therapy getting iron and blood. Not a fun way to spend the day. Then, on Thursday, he will get another iron infusion.

There are still no answers as to what is causing the blood loss/anemia. He will have another EGD and colonoscopy next week to see if there is anything going on. The new medication, Stelara, is still in the trial stages. Not sure if it is doing anything or not. At $13,000 an injection, it dang well better do something! Yes, $13,000, not $1,300, or even $130. Crazy, and highly unethical in my opinion to be able to charge that much for one injection.

This past week, we have experienced a tragedy in our neighborhood. Our good friend, neighbor, and wonderful man passed away unexpectedly after a car accident. It has been hard to grasp that he is gone. The feelings in our hearts are tender as we think about his beautiful family that has played such an important part in our lives, and in our children's lives. So many fun, tender, awesome memories of Leland have played over and over in our minds. Our daughter, Michelle said it well in her blog:

"So many thoughts today. I'm not sure where to start. You know that neighbor that has always been there? As long as you can remember they have been at birthday parties and ward activities and walking around the neighborhood. They don't hesitate to drop everything to help when needed. They are a constant fixture, a part of home. Well that all changed today. Last week Leland and his daughter Robyn were in a car accident. They were T-boned going through an intersection. They said Leland was fine. But he wasn't. Sunday he was admitted to the hospital. He got worse from there. This morning he passed away.

I don't know what to say about this man that has always stepped in to help. He always made sure we had somewhere to go. Dinner delivered. Blessings given. Plenty of tomatoes or other produce from the garden. I can't imagine going home and not seeing him walking the neighborhood or working on his beautiful yard. I can't imagine seeing Hilda without Leland."

 

 

Leland passed away due to some of the same things Brent has experienced. He was septic after surgery. We have come very close to losing Brent several times due to septic shock. I have no answers as to why Brent has survived, and Leland was taken from us. It is a very uncertain world we live in. Very fragile. As we pray for healing for the Gamette family,and for the Piggott family, who also lost a loved one unexpectedly, we also pray that all of us will not take for granted the blessings we have. Love your family, make amends, focus on what's important. We are thankful for the gospel of Jesus Christ that gives us hope and comfort.