Transplant!!!

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!

Update

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!!

Pics

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!!

Bump/Mountain

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.

Update

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 shawnanderinbarnes.blogspot.com. 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.

Graduation pics

Graduation

So I graduated.....again:)! Ha this time it was for my bachelors of science in nursing. Many people don't realize or know that an RN is acutally only an associates degree so I decided to go on and get my bachelors of nursing. There have been rumors that they will start to require this in the future for all nurses so I at least won't have to go back to school later on in life. I was debating for a while whether or not I would go to graduation because it didn't seem like it was very important with all the other things going on in our lives. Shawn actually talked me into it and I became a little more excited for it when they discharged Shawn from the hospital the day before graduation! It turned out to be a really fun day, we went to lunch before with both our families and then after I walked I snuck out early and didn't have to sit through the whole thing! So its official, I never plan on going back to school ever again:) Ha I didn't ever think I would get to say that.

Update

Sorry no pics for this update. Things are going ok. We are currently in the hospital for Shawns final chemotherapy before the transplant. In short, things could be going a little better. A few days before we came in Shawn started getting some neuropathy. This is tingling, burning, stabbing intense pain most common in hands and feet. His feet are hurting so bad he was soaking them in ice cold water to even get 1 or 2 hours of sleep at night. This however is not a good therapy to do all the time because it can start affecting circulation and making matters worse. We are currenlty battling and trying all sorts of other things to try and make this pain ease even just a little so he can sleep at night and be semi functional during the day. Any suggestions you have heard about neuropathy we are willing to try, we have researched a lot and tried a lot so far but are getting desperate.

Enough bad news, good news is that the transplant is officially scheduled!! He will go in around May 12 to start the pre transplant work ups, then a few days of chemo and then 6 days of radiation. Then on May 24th they will put the new bone marrow into Shawn. We are so fortunate to have a donor that is so willing to do this. Some of you have asked if we know the donor, no we do not. They contacted him (we do know its a male) through the bone marrow registry and his "identity" is confidential until a year or two after the transplant. We are so thankful to whoever he is though, he has no idea what a difference he will be making in our lives. So even though things are difficult right now for Shawn he remains positive and even trys to cheer me up from seeing him suffer. We have listened to several talks and read scriptures on the purpose of trials and the benefits of going through pain...they are good to put things into perspective and to remind us that there is no suffering that goes unnoticed by the Lord. We love you all and thank you for the continued love,support, and prayers!

Barnes Battle

So in case any of you are still checking this blog occasionally I will give an update. Most of you have already heard my husband Shawn was diagnosed with leukemia in January. Since then there have been a lot of things happen. Basically the plan is for him to get a bone marrow transplant this summer. They have found a match and he just has to get one more round of chemo (chemo round #3) before they will go ahead with the transplant. He has been so strong through all of it, but no matter the strength a person has chemo still takes a big toll on your body. He has lost quite a bit of weight, hair, and energy. He also got a case of bells palsy from his immune system being so shot. Sometimes I like to call him my little "Job" because he has gone through so much and still has such an amazing attitude and Faith. There are a lot of good things that have come from this and we try and focus on these. One being we were able to get pregnant before all of this happened!! We are having a little baby boy in august. We are going to name him Lucas Shawn, call him Luke. I hope one day we can tell Lucas what a light he was to us in this time of darkness. Among all the sad and hard news, he kept us going, he kept us counting our blessings, he kept us positive when it seemed impossible to be. We are so excited for him to come into this world!
Right now we are enjoying the few days we have home before Shawn goes back for more chemo. Everything is going pretty good, aside from some crazy pain Shawn gets every now and then, we are able to function pretty normally most days. We love those days. Sometimes people ask us how we are dealing with everything, thats just it, you deal with it. We have such strong support from family and friends that it makes it bearable. We have felt the most love and support from our Savior and lucky for us he is the one in charge, and we know that whatever happens is going to be for the best.

I am going to try and keep this blog updated but a lot of people have asked us how they can help, well check out this blog on some fun events our families have put together to try and help raise money for some medical costs. shawnanderinbarnes.blogspot.com

Past few months