Wednesday, April 11, 2012


Ok.  So, I have felt for a while now that I need to update everyone. I have wanted to share my feelings and thoughts to others out there but because my thoughts and feelings change so frequently I can never complete a Blog draft that I feel content with. (I wrote my first draft in November… 3 months after Shawn passed away, since then I have deleted, added, and revised a lot) I also have hesitated because I was sure most people didn’t want to hear all my thoughts, especially the bad ones. But I have come to the conclusion that without sharing bits of the bad, you cannot appreciate the enormous amounts of good.   If you are interested in reading this very long and very thought out post, know that I have felt prompted to do this so if you feel the need to judge please keep those judgments to yourself.

 Writing has been a way for me to really understand what I’m feeling and to sort of empty my brain onto paper (no worries, I won’t empty it all out or we could be here for days).  That is one of the many reasons I am doing this, but more so, to perhaps help someone else out there struggling.  Helping someone else while I am struggling myself is something Big Shawn taught me and I believe it would strengthen our love and relationship through the veil.  Helping others would also make Shawn proud of me, which is something I strive to do every day.
Sorry for any of you out there that have been left hanging but most of you know that Shawn passed away August 15th  2011.  A little background on the days before August 15th, and really from his transplant on since that was the last time I updated the blog.  I am going to be brief on talking about a lot of this because it is personal, and deeply painful to think about.
After the transplant we stayed the rest of June and all of July in the hospital.  His counts actually did start to recover and he began making good blood cells but his body was so frail and since he was unable to walk or eat very well the doctors kept us there for some rehab.  Once they gave into us begging to go home it was the beginning of August by then; we were confident we could get Shawn feeling better at home before the birth of our son which was scheduled to be August 17th.  We were able to spend one night at home in our new apartment which brought a lot of strength and happiness to us both.
 The next day Shawn spiked a pretty high fever and we had to be readmitted to the hospital.  Sometimes I wondered why it was that we were only allowed one day at home before everything changed.   But I now know that the Lord had a hand in that, like so many other things he has.  After a few tests they told us that Shawn’s Leukemia had returned in spite of the transplant and that there was really nothing else they could do.  I won’t go into too much detail of my reaction after that news, I’m sure you can guess what went on. Pure and intense heartache, dreams shattered, happiness lost, despair, and fear for the future were just a few of the things that went through my mind.  Along with, will my husband ever meet our son here on earth? 
Soon after this Shawn and I had a brief discussion that I hold dear and will never forget.  One thing we determined was that if it was at all possible we wanted to have our son soon because the doctors did not know how fast the Leukemia would take his life.  We got in contact with my Nurse midwife, Machel Knowles, and she immediately began pulling strings at McKay Dee hospital and soon called to tell us that we could go to deliver that very night if that’s what we wanted.
So we did .  We drove from LDS hospital to Mckay Dee hospital. After settling in and getting our room arranged with two hospital beds next to each other (one for me and one for Shawn) , we delivered our beautiful son on August 5th 2011. He was just a few weeks earlier than his due date and perfectly healthy.  Some of you probably knew that we had decided to name our son Lucas so we could always remember the beautiful miracle he was while we were battling Leukemia.  Lucas Shawn Barnes.  Well I had other plans from then on.  Shawn agreed to letting me name our son after his amazing strong Daddy.  So we named him Shawn Lucas Barnes.   It took some getting used to but from then on it was “Big Shawn” and “Little Shawn”. 
Here are a few pics of that day.  Before this I had no idea the human heart could inhabit utter happiness and utter despair at the same time.   I can’t even describe to you all the feelings I had during the delivery and the events leading up to it.  But I do know that I was indescribably grateful that Big Shawn was there with me, holding my hand, on the second best day of our lives together.  Little Shawn came into this world in serene chaos, and completed our eternal family.

We got to spend 10 days together as a family in Shawn’s parents’ home.  Not only our family of three, but as you can imagine, we had both of our families near us almost at all times.  Everyone, including myself, was gaining life lessons from Big Shawn every second we were by his side. These lessons often didn’t  even require words. Shawn was able to give little Shawn a name and a blessing, which was absolutely beautiful. 

Many of you have asked how I am doing.  This is one of the reasons I have wanted to blog.  But this question is not so easily answered.  Today was alright.  Yesterday was good.  And the day before that sucked.  The expression take it a day at a time has never been so real to me.  It is going on 9 months since Shawn passed away. And the cloud of fear, anger, depression, misery, and despair is starting to clear up.  Does this mean that I don’t cry or am not sad anymore? No.  Will it ever be that way? No. Does this mean that my life is back to normal? No.  Will it ever be? No.  This chapter in my life has forever changed me in so many ways.  I have been permanently changed and life will not ever be normal, because life isn’t normal. However this chapter in my life is just that.  A few months ago I would probably scream at you if that’s what you called Shawn, a chapter of my life.  But today I have accepted that.  Even though Shawn has changed me for the good and made me live life very differently he was not MY life.  I have to remind myself that very often because if Shawn was my life then what would make life worth living anymore?  So The Erin Book will have many chapters, and I will take what I have learned of love and life from Shawn and use it to finish my own book. 
People often ask me now if I’m back to work, which in my head sounds like they are asking “So, are things back to normal for you?” I think something people don’t realize is that my life doesn’t have a normal state to turn back to.  My normal life was thrown out the window about a year and 3 months ago when Shawn was diagnosed with leukemia.  When everyone goes back to their jobs, spouses, and running their kids around to various activities… Where am I?  I’m sitting at my parent’s home with my son trying to establish a new normal.   Normal life for me is missing Shawn. He was my normal, and now that he is gone, Little Shawn is becoming my normal.  If that makes any sense. That information is not vital for others to know, but perhaps it will be one day when you talk to others in grief.  Just know that it feels as though your world is in upheaval. It is hard to watch the normalcy of others’ lives around you continuing on without you.   Well, since I’m not here to tell you how depressing life can be, let me tell and show you what me and little Shawn have been up to.
First, we went to Hawaii with my parents and some good friends in October.  It was so wonderful, and very therapeutic to be in such a wonderful beautiful place with such wonderful beautiful people.  Ironically I think I felt closer to Shawn in Hawaii than I did at home.  It was almost as if we were both in heaven together. 

We also went to Pennsylvania for Thanksgiving to be with my sister and her family.  It was so fun.  And here are a few pictures of Little Shawn growing up.

Now I don’t pretend to have the strongest testimony or to be so positive all the time, but there are a few things out there that have helped me.  And maybe it can help someone else, so I will share.
·         We are sent here to this earth for the purpose of being tested.  We hear many of these things I’m about to share all growing up in primary.  But for me, and many others, keeping this eternal knowledge and perspective helps me to find my motivation to continue.  Some days even strive and thrive.  “Tests and trials are given to all of us.  These mortal challenges allow us and our Heavenly Father to see whether we will exercise our agency to follow His Son.”(-Robert D. Hales, Waiting Upon the Lord, October 2011) I choose to follow His Son.
·         Sometimes I feel out-casted in ways.  People understandably don’t know what to say to me.  Well let me put you at ease.  I’m not going to punch you in the face or break down crying in front of you for something you say.  (Well, unless we are very close friends or close family, and if that’s the case, I will always appreciate your words and please just give me your shoulder to cry on.)  Haha, but if you are not one of these, say whatever you want… I don’t take offense very easy, trust me.   But please don’t avoid me, it’s just weird.  Advice someone gave my cousin once was to ask me, “How are you today?”, or even right now because it changes just that often. I thought that was excellent advice.  One more food-for-thought when perhaps talking to a grieving person…  It irritates me when people say to me “I don’t know how you’re doing it”.  It makes me think, “O I’m sorry, I didn’t know I had a choice! Are you telling me I can just ask to not deal with it and it will magically disappear and perhaps Shawn will reappear? Please do tell your all knowing secrets of how to do that!” Ha.  There you have it, life inside my head occasionally.  Don’t worry if you have said this to me, like I said I don’t take offense easily, I’m simply letting it be known.  When in doubt or at loss of words, hugs and silence can be the best words.
·         It is a choice whether or not I will follow Christ.  Obvious statement, right? Well not so for me.  As some of you can imagine, anger is a big part of grieving.  Anger at God for allowing or causing this to happen (neither of which are true).  My thoughts for a while were “Why would I turn to God and Christ when they are the ones who did this to me?”  I couldn’t blame my heartache on anyone except them.  I felt forced to follow Christ and hated it. Everything I was reading was telling me to turn to Christ if I wanted to heal.  Pray to get comfort.  Serve others and become more like Christ to feel better.  It made me so angry, so I didn’t do these things for a while.  That would show Them, right? Wrong.  I only became more miserable.  Anger consumed my thoughts.  To the point sometimes I hated hearing anyone talk about their testimonies… scoffed in my head at them…like ‘yeah easy for you to say…what have you been through?’  I subconsciously wanted the anger.  Because maybe that was easier than the sadness.  But I now know that I cannot heal without Christ.  Without the enabling power of the atonement as David A. Bednar says.  It truly gives me strength to change my circumstance.  I have a very wise friend and previous bishop tell me that if we can control our present, we can control our past, present, and future.  To me this means attitude.  I can choose to fall and be crushed by all of this or I can ensure a happy past, present, and future by trusting in the will of the Lord.  And I choose to be happy.
·         In grammar speaking - death is not an explanation point, merely a comma.  –Elder Maxwell
·         Even though God doesn’t always answer your prayers in the way you want, he always prepares you and gives you the strength and the things you need to endure what is ahead. 
·         The talk Tragedyor Destiny? By Spencer W. Kimball.  Read it, it’s amazing
·         The talk Trustin the Lord by Richard G Scott, given October 1995 general conference- also amazing.
·         This last general conference helped me as well.  So many I loved.  To name a few, I loved what Elder Holland said about envy, and that it is a sin.  He said “Envy is a mistake that just keeps on giving.  Obviously we suffer a little when misfortune befalls us. But envy requires us to suffer all good fortune that befalls everyone we know.  What a bright prospect that is.  Downing another quart of pickle juice anytime anyone around you has a happy moment.” (ElderHolland, April 2012).  This was especially good for me, it’s hard to not look at all the marriages around me and be angry that I don’t have my husband, it can drive you crazy if you let it.  So I’m working on not being envious. 
o   David Baxter, as a lot of you know, is our family Hero.  He gave me and Shawn blessings in the hospital and became a good support to us.  His talk to single mothers really inspired me. Read it.
o   I loved what Ronald A. Rasband said about not asking if someone needs help if you can see they are drowning, and just jumping in after them.  I have some amazing friends and family that did just that.  Although the saying “let me know if I can do anything” is well-meaning, it is rare someone drowning will be able to call out for help. 
·         Preach my Gospel has some good quotes on patience.  “Patience is the capacity to endure delay, trouble, opposition, or suffering without becoming angry, frustrated, or anxious.  It is the ability to do God’s will and accept His timing.  When you are patient, you hold up under pressure and are able to face adversity calmly and hopefully.  Patience is related to hope and faith - you must wait for the Lord’s promised blessings to be fulfilled.” Also, “Life is full of difficulties, some minor and others of a more serious nature.  There seems to be an unending supply of challenges for one and all.  Our problem is that we often expect instantaneous solutions to such challenges, forgetting that frequently the heavenly virtue of patience is required.” –President Thomas S. Monson.  These quotes rang so true to me when I was in the depths of despair, I just wanted time to get here already because they say, “in time it won’t hurt as bad, in time you will feel happy again, in time you will be happy for Shawn’s influence in your life instead of sad he isn’t here, in time in time in time.” Well I wanted time to hurry the heck up.  But this helped me to realize that the best way to go through things is to just go through them.  You can’t skip grief or rush through it to get to the other side.
·         All your losses shall be made up to you, provided you remain faithful. –Joseph Smith.  Well, you better believe I’m counting on that.
·         There are many people that help me get through the hard times, but two that I really would be lost without are little Shawn and my friend Tiffany Johansen.   She lost her husband recently as well.  Talking with her has been so beneficial for me, she might never understand my deep appreciation of our friendship.  And how could this little guy not brighten your day?

Little Shawn with Uncle Jared

Little Shawn with Grandpa
I could go on forever on things I have read or people I have talked to that have helped me. These are just a few of my favorites. I hope I have helped somebody out there with this post, or at least helped you all to know that- yeah, some days are hard, but I am choosing to follow and have Faith in Christ. In the end, isn’t that what it’s all about anyway?
Thanks for the many prayers, they have been felt.
Erin & Little Shawn

Monday, June 20, 2011


So the transplant finally happened!! It was on friday last week June 17th. We were all so excited for it we had a little pizza party and some balloons for Shawns new "birthday". He officially has a new immune system. The actual transplant wasn't really all that exciting. It just looks like a blood transfusion, it goes straight into his port and that was about it. It did look like tomatoe juice instead of blood however. And the type of transplant he needed was stem cells and not direct bone marrow so the donor simply had to go into the doctors office for a few blood draws/collections and that was it for him, then they flew it over here. Although we don't know who his donor is we do know that they had to fly it here a few days earlier than Shawn needed the transplant (different time zone). Most of them come from Germany is what we hear because they are required to be on the bone marrow registery in the military. I thought that was really neat, then if they become a match they have the option to so yes or no. We are all anxious to see if somehow Shawn starts to speak German or something crazy like that. Funny thing the donor and Shawn will now technically have the same DNA or at least if either of them commit a crime and leave their blood on the scene both their names will come up as a match to the blood. Crazy huh? So hopefully both Shawn and the donor will not take any jobs asking them to be a hitman:)

So from here on out we just play the wait and recover game. Average recovery time is 4-6weeks in the hospital after a bone marrow transplant. Back in the day this had to be complete isolation from anyone and they would treat the patient standing behind the glass with the gloves thing. But now its different and he is technically isolated but not to that extreme. People can still see him just as long as they are not sick and have not been around anyone that is sick. So I will still be staying with him at the hospital. As long as that little pull out bed remains wide enough for me and my ever growing belly:) Then its about 1-2 years of being really careful about not being around anyone that is sick, and a big list of other precautions. If the transplant "takes" then we will start to see his blood counts recover within 10-28 days. These will be the new immune system making cells since we know they killed Shawns immune system with all the pre-transplant radiation and chemo. And don't ask me what we do next if it doesn't "take" because I'm not allowing that to be an option in my mind right now.

Unfortunately the chemo and radiation side effects have not subsided, and are catching up to him a little more. He now has mouth sores that are pretty painful which have eliminated the pill taking situation. So his feet hurt more again since he is unable to get those medications through the IV. Also the vomitting hasn't let up. It is a sad day when vomitting becomes a normal part of the routine. Especially his vomit, he hasn't eaten in well over a month so you can imagine the throwup he has. Pretty much pure bile and stomach acid. Hopefully in the next week or so we can start getting past all these crappy side effects and Shawn can start being Shawn again. Through all of this Shawn rarely complains about it and keeps up his spirits really well. He has never once asked why is this happening to me... which in itself is pretty remarkable. Thats just Shawn for you, so loving and caring that he cares more about how me and the baby are doing than how he is doing. We had a wonderful Fathers day together and even though Shawn felt really crappy we had a lot of good laughs and talked a lot about how we can't wait until our little Lucas joins our family.

I'll will do another update later, hopefully he will be starting to feel better by then. Thank you all for the continued prayers and support we really appreciate it. Please continue to pray that this transplant works for Shawn and that we can live long and healthy lives with our soon to be son Luke. We love all of you!

Wednesday, June 8, 2011


Ok so sorry it has been a while since the last update. First off I wanted to just say thank you to everyone that helped out and came to the concert!! It was such a huge succes and we were so fortunate to have had so many generous people attend. Shawn was able to watch the concert from video that family took. He loved it and was sad to have missed it.

The good news is we are back on track for the transplant!! We were really worried for a while as the doctors are kinda "debbie downers" at the circumstances we are in. However, he finished his chemo and they checked his bone marrow two weeks later and the bone marrow was "empty". If God is going to perform a miracle might as well be a big one right? Although this is not remission it was still wonderful news because they couldn't see any leukemia cells in his marrow!! So that gave the doctors more confidence and let us go forward with bone marrow transplant plans. He is now scheduled to get his transplant on June 17th.

The past week has been just a waiting period to get started again and has actually been really enjoyable. He was able to walk a lot easier and even eat a few things. These are the days that get us through the harder ones. The previous weeks were really hard on Shawn. This chemo seemed to make him throw up a lot more than the others did. As a result of all the vomitting Shawns throat became really inflamed with lots of lesions in it. He has been unable to eat for about the past month. Even swallowing his pills are sometimes difficult.

Radiation started yesterday and he felt the effects from it immediately. He gets radiation to his whole body and the process invovles him standing for the entire session. When he got back yesterday he was literally wiped out, the vomitting started soon after as well. Talk about beating a horse while he is down!! Shawn is going into this transplant a lot worse off than others starting this process because he is unable to eat, very weak, not in remission and his blood counts have not recovered from his last week of chemo. It seems horrible to say this but we are all grateful for him to be at this point. Because even though it would be wonderful to have Shawn start this process a little stronger, the longer we would have waited for him to recover the more likely the leukemia would return before the transplant again.

I'm doing pretty good, so many people ask me how I'm feeling and it seems silly and I often think, don't you mean Shawn? But I feel great. I have been really blessed to have such and easy pregnancy so far, or at least I don't know what pregnancy is supposed to be like and all the other things in life have made it seem easy. Sometimes I forget that I am even pregnant until I look down and see this huge belly. Emotionally I am like a roller coaster. My day is often based off of how Shawn's day is. If he is having a bad day it seems to drain my spirits and really wear me down. On good days though we just hang out and watch prison break together:) Our families have been awesome to give me breaks every once in a while from the hospital which I'm realizing is much needed.

We have also received some really amazing blessings. One of the seventy received a request from President Monson to come and give us blessings last week. One of our friends wrote a letter to President Monson and he read it and tracked us down to have Elder Baxter give us a blessing. It was such a neat blessing and really reminded us to have faith and hope for the future and not fear. Faith is something I learn more and more about each day. There were many powerful things that were said in the blessing but most of all we just felt so comforted afterwards.

One last thing, this post is becoming very long. I need to update more often. My friend Katie from nursing school gave me this really neat book called "created for greater things". It is a compilation of a bunch of quotes from Elder Holland whom me and Shawn really love! In it I read something I needed to hear. Often times I become jealous of others' trials. I sometimes think "why couldn't that have been my trial" or "that person seems to have no trials".

This is the quote: "On this upward and sometimes hazardous journey, each of us meets our share of daily challenges. If we are not careful, as we peer through the narrow lens of self-interest, we may feel that life is bringing us more than our fair share of trials-that somehow others seem to be getting off more lightly. But the tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way." _Elder Holland

This gives me comfort and I do know that this trial is one we were meant for and can get through. We have often compared our trial to others we know or hear of and we are so grateful for our own. As we continue to have Faith, the Lord will continue to give us daily victories and we are so grateful to have Christ and Heavenly Father on our side of the battle!!


Here are some pics over the past few months. Shawn had some dark blue chemo, pretty crazy stuff. He started losing his hair again a few weeks later (the small amount that he had) poor fella slept through his haircut. The concert was awesome, Billy Dean sang I am a child of God with all the little kids! I am now 29 weeks and Lucas is doing great!!

Friday, May 13, 2011


So things have taken another turn. This time a bad turn. I will try and stay positive for this post but I’ll be honest over the past few days I have had some serious self pity and pessimistic thoughts. Sometimes it’s hard to remain positive when it’s the person I love more than anything or anyone in the world on the line. But the thing I always have to remember is that God and Jesus are all powerful and can truly work miracles. And that they love me and Shawn (and Lucas) so much.

So we went up to the hospital on Wednesday for a pre transplant check up to make sure everything is on track for it. We were greeted by some very unpleasant news. Shawn’s Leukemia came back inspite of all the chemo he has gotten just very recently. This was a big surprise for us because although we knew it would come back without the transplant we didn’t think ( and neither did the doctors quite frankly) it would be this fast and after such intense chemotherapy. So this puts a “bump” in the road to recovery as Shawn likes to call it. I call it a “mountain” but whatever. He is no longer in a state to get the transplant this month. I think that’s one of the hardest things to deal with because we were all so ready to start healing and the transplant was the beginning of that. It sorta feels like we are starting all over again. So now the plan is to give Shawn even more chemo, different stronger stuff to hopefully get him into a second remission. Second remissions are a little more difficult but the doctors are hopeful and assured us that it is very possible. The transplant is also “statistically” less successful in a second remission instead of the first. I would give you the actual numbers but if Shawn ever read this he would be upset with me, let’s just say they aren’t awesome numbers. But!!!!

The good news is that numbers mean nothing when you have the Lord on your side! Shawn received an amazing priesthood blessing from his Dad yesterday. In it we were all reminded of the miracles Heavenly Father can perform. It made me realize that although chances and statistics are not good, you can’t dwell on that because the Lord is going to take care of us. The best way that he knows how, which may seem too difficult at the time but I’m sure for some reason we needed to wait longer for his transplant or get this different chemo first. Shawn is as positive as ever and I’m sure if he was writing this post he would say that everything will be just fine and not to worry, we just had a small bump in the plan. Shawn continues to strengthen my testimony of Faith in the Lord. Just when I think I have it down, the Lord throws a curve ball at me to really test my Faith. I already decided a long time ago when we found out about his cancer that no matter the trial, or more specifically no matter the outcome of this trial I will remain faithful and not be angry at the Lord. This is harder to remember at times like these but I do remember it and recharge myself for upcoming mini trials.

So we started the chemo last night. This chemo is bright blue, looks like blue powerade. And it makes him pee green! ( too much detail?) So he will get chemo for about a week continuously and then it will be like the first time where we have to stay in the hospital for about a month and wait for his counts to first drop and then slowly return on their own. (Lots of no eating and throwing up in beween then) After that they check to make sure the leukemia didn’t return and if not they will go ahead with the transplant. Things should go a little smoother this time since we already have the donor lined up. So that’s the new plan, hopefully in the mean time he can get a little more strength and weight back before the transplant. It would also be nice for his neuropathy to start getting a little better and maybe getting him walking good again. (Hint hint… those are things I need some help praying for)

Well so you probably guessed it by now but Shawn will not be attending the benefit concert. We were all really bummed about that because I think it is going to be such an amazing night. But we are going to record it for him to show him later! I am still going, he wants me to be there to tell him all about it. Billy Dean came to the hospital yesterday to see Shawn. He was such a cool guy. Just really nice and chill, he talked to us and told Shawn to stay strong and kick this thing. That is the plan, kick this thing really hard

Thanks again everyone for all the prayers and support, and I will see you all tonight at the concert!!
P.S. baby Lucas is doing awesome, and pregnancy has been a breeze! They continue to change the due date because he is growing so fast and has such long legs thanks to his daddy.

Billy Dean

This is a pic of Billy Dean, Shawn, me, and Grandpa Barnes at the hospital. Billy was so nice to come and visit and meet Shawn at the hospital since he won't be able to come to the concert. We will be forever grateful for this good man.

Wednesday, May 4, 2011


So we have been out of the hospital for about a week now. Things have been going ok, he is finally getting a little relief from the neuropathy. The only downside to that is that the medication he takes makes him super sleepy. So needless to say he is finally sleeping through the night, ....through the morning.... through the afternoon...and somtimes through the evening. I decided its because of all the amazing people out there that prayed for him to get some sleep. Well people we need to ease up on the sleeping prayers now:) Just kidding, ha sorta. I know that all the prayers are really helping and I guess I would rather see him sleep than see him toss an turn all throughout the day and night because he is in pain. So he is doing better in some and not so good in others. He has a hard time walking around because his pain in his feet and also some bad muscle and tendon tightness most likely from being down so much. He also has lots of random spouts of intense sweating, no fever, just a lot of sweating.

So the plan from here on out is we go up to the hospital for several appointments in the next week. He will be admitted to the hospital for his transplant on May 15th. This means he will be out of the hospital for the benefit concert, as for whether Shawn will be there or not we will not know until its closer. He really wants to be there for it to say thanks to all those who are coming and helping with it but we aren't sure if he will be strong enough to be there and be around so many people. If you haven't heard about the concert check out We would love to see as many people there as possible. There will also be an auction and raffle with sweet prizes. One including a trip to Hawaii!!

If you get the standard examiner watch our for an article on the concert and our story it should be in the paper tomorrow 5-5-11. It was really neat the person that came to take our photos was really great. I told him how Shawn was not too excited to get his picture taken because of his bells palsy. Turns out our photographer also has bells palsy so he was really good trying to take the picture on his good side.

So all in all things I think have taken a small turn for the better. We continue to feel all the love and prayers form everyone out there.