SUMMER FUN

SWAT TRAINING

Jeep ride at Island Park

Jeep ride at Island Park

Well its been awhile since I have updated.So much has been going on in our family the past few months that Im finally getting around to updating Talans blog. He has had a few good months, lets just say he still has his horrible days, but for the most part he has been doing ok.
We were introduced to a new Dr at the U of U in June. She gave us some tips on what we could do to help Talan, but unfortunately she told us NO MORE INFUSIONS!!! One they seemed not to be helping him and second she said she didnt want to suppress his immune system anymore than it was already. She ordered a CT scan to be done on his lungs and a echocardiogram. The CT scan came back with a few changes. The test has you inhale and exhale as it takes pictures of your lungs. We now know that when he is exhaling he is getting air trapped, he cannot expel all of his air. He needs to see a pulmonologist for that, but he refuses. He is sick of Dr appts and says, and what are they going to do about it? Nothing! So maybe in time he will go. The echo came back ok. That was good news. Over the summer we were able to go on a little vacation to Island Park at a friends cabin. Thats all Talan wanted to do was go and just enjoy a new scenery. I cant blame him. We took his best friend Carson with us, because this was going to be the last time to do something together for a while. Carson was moving to Maryland in August to work on the Naval base. Some of these pictures above is our little trip.
Another fun thing that happened, was we did kind of a make a wish for him. For some reason a miracle happened, I love those tender mercy moments!! Long story short, we met a guy that was fitting Talan to his new back brace. He had connections to the Special OPs SWAT team in Salt Lake City Utah. I totally believe that God had his hand in all of this. This is what Talan would love to do if he could. We were able to take him down and train with the Special Ops SWAT team. I cannot thank those gentlemen enough that made this happen. You know who you are! It was so fun to watch him be in his realm, and the SGT that was in charge was just amazing with him!!!! He took Talan by himself and helped him shoot at targets and just spent one on one with him. The smile on his face was priceless, and those few hours were the world to him. We were even able to go in the helicopter they had there. They were actually doing training in that, shooting at targets. The SWAT TEAM was awesome and made him feel like he was one of them. They were so genuine, and so heartfelt towards him. As Talan spoke with some of them, they just told him that his lot in life was a different one and he was their hero for fighting the battle he was fighting. It sure made this mom a happy mom, ok and dad was the same. After having two flat tires that day, and the swat team changing one of them for us, and me blowing my knee out getting into the helicopter. It was still an awesome day that we will never forget! Thanks to the one that brought over the ice pack, and wrap for my knee! I dont think I have ever been that embarrassed before!!! Totally a blonde moment on Talans day. I will be posting more pictures than I have here, along with a video for you to see when they are done.
Talan and I also re-did his room together just recently, and now is paying for it. I see the trend coming on of him starting one of his mean cycles. He has bronchitis right now, nearly pneumonia. As the weather changes it starts to effect him. I hate watching, and not being able to do anything about it. I have watched on the social media of the ice water bucket challenge, it has brought me joy to see people at least acknowledging there are rare diseases out there and life for these people affected it is horrible for them. I wish there was a way to raise awareness for Talans disease. But in due time Im sure there will be. Thank you to all of you for your continuing thoughts and prayers for him and our family. We appreciate all that happens in our behalf, and are truly blessed to have all of you in our lives.
I have started a FB page for Talan. It is called Talans Fight, it should be attached to his blog that you can go and like it. I will try and update that weekly there, although it will not be as in depth as here.
Love you all!!!!

All it takes is LOVE, FAITH, AND COURAGE!!!! HAPPY BIRTHDAY TAL!

Livin on Faith

                                                          Tim Gates, from "Due West"  singing to us:)

Traveling to Yellowstone

This was last night when he told me he didnt feel good.

Yellowstone

Yellowstone

Yellowstone Talan and Stan (Dad) trying to give me a heart.... lol

Yellowstone accomplishing the finished heart!

23 Birthday

Playing a little bball with dad

Playing a little ball with dad

Yellowstone

Yellowstone

Yellowstone

23 Birthday

23 Birthday

23 Birthday

23 Birthday

Olive Garden dinner date with Mom and Dad

Also last night when he didnt feel well

Traveling home from Yellowstone asleep

Talans 23 Birthday

23 Bday

Called to Serve Brigham City Temple bracelet for his Bday

Well I guess its been a few days since I have updated. This momma has been sad and heart broke and cried just a few times this past few days. Its so hard to see Talan battle his battle! Lets just say that days are getting worse and he starts and ends what we call cycles off and on. They seem to come more and more frequent lately and it sure takes a toll on his body, and mine.  There is one thing for sure as I give him his daily shots of medication, I just want to cry.  Once was his hip area, once was his buttock, and now on to the thigh of tissue turning hard, as I inject it feels like Im injecting into grissel. Sometimes as I inject the tissue is so hard I have to pull out and go to another spot because it wouldnt push through. At times I can get it to pop inside and then he screams and says he feels it going in directions through his tissue it shouldnt be going to. This is because the route of medication is trying to find alive tissue to absorb into. This just about makes me cry and nauseous everytime I have to do it. He is totally a trooper and some how gets through it. Bless his little heart!  As we both fight for sleep and to keep ourselves going. He sure tries to get up and function, but his poor body says NO!  He has about an hour a day of energy and if he does to much he finds himself in bed till the next day. Just last night I cried at his bedside as he could hardly tell me in the most cringing voice, mom, I dont feel good, I just dont feel good. I feel Im getting sick, could you please sit in here with me and watch me and make sure Im ok. THIS is what Im talking about, he is starting a cycle.  I just wanted to fall to my knees and plead for comfort for him, and the pain and sickness to just go away.  Dear Lord, why must I watch my precious little boy slowly slip away???? I dont like it!!! 
All he wants is to be normal and function, have a life, a girlfriend, wife, kids, college, work, and so forth..... as he tells me this I just want to cry. Ok, I do cry. I tell him that Heavenly Father must have another path for him, and how else do you look at it? He told me just the other day that he hoped to die in his sleep and wake up out of pain and in a beautiful place, and be able to pick the most beautiful girl to marry on the other side waiting for him. I dont know, maybe she is waiting for him? That about broke my heart in two, but how can you not think about how wonderful that would be for him to be out of his pain. Then I want to slap myself for thinking such things, Im selfish and want him to out live me at my old age of being a grandma to  his children!
  He just had a Birthday on April 12, and he turned 23!  Im so thankful and feel so blessed to still have him here. He looks at his friends, sister, and others moving on and it really sometimes takes a toll on him. He just learned of his best friend graduating from college and moving to Maryland within the next month, he has stood by his side, comes to see him, and takes Talan places to get him out of the house. Talan slipped into a little depression for a few and days and cried and cried. For he seen that life moves on unfortunately for others and his does not. We try to keep him positive and ourselves to, for this trial is strengthening, teaching us unconditional love, faith, perseverance, and humility. I know that my Heavenly Father is blessing me with the health and strength to keep going every day as Stan also.
 Talan wanted to go to Yellowstone for his birthday to our time share.  So we packed him up about two weeks ago and went on a venture with him for a few days. Of course we tried to tell him there was nothing to do up there but he still insisted we go. I told Stan that we needed to go and spend some quality time with him, as Stan is so busy with everything he does to keep us afloat. We got up there and never left the condo. Talan was to wore out to even go for a ride. He mostly slept the whole time we were up there. He went from the chair in the living room to the bed in the bedroom. The picture above shows just how wore out he was. It makes us sad to see him so wore out. Im afraid its just going to keep getting worse. His reasoning skills are getting harder and harder to deal with. He doesn't realize it either, that's the hard thing.
We have had hurdles to jump the past month and a half, Talans pain Dr. passed away from cancer and he was the BEST! He helped us stay on top of his pain and everything else he could, a very intelligent man and now he is gone and we have been lost trying to find a new doctor.  Finally we have found someone to help for the time being. On the good side of things we have also found a Dr at the U of U to watch over him as his disease progresses. We have yet to find a doctor that would or could do this for him. We were excited to know someone delt with sclerosing and would take him on.  What a blessing that will be.  We have not been yet for the first appt., unfortunately he cant get in until June 19. He is on a cancelation list. I can only hope it will be sooner. She will follow his lung function, intestinal function, and pretty much everything from what we understand. His intestinal tract is sclerosing and he doesnt eat much that has to be digested much by the muscle function inside the intestinal tract. He mostly is eating right now, Chex mix is his favorite, if you think about it, it is pretty much mush before it enters the tract. Easier on him, softer foods is where he is at, at this point. Oh and of course his pepsi! ha ha
About a month ago Tim Gates from Due West was passing through town and came out to our house and sang to us. What a great guy, how genuine he is and how grateful we were to hear him sing and bring us peace. He will never know just how much it meant to us to take time out of his busy day to come out to our home and sing and shoot the breeze with Talan. We appreciate him, Due West and Nashville Tribute band for the compassion they have for Talan and others in need. They have literally touched our souls! IF, you have never heard of them please go to YOUTUBE and look them up! So Im sharing with you one of the songs that Tim shared with us, please enjoy.
One thing that is on Talans list to do this summer is redo his room. His room is done in hunting and has been that way since he was in High School. So he is trying to plan what he would like to do. This is giving him something to look forward to, and I guess I will have my summer cut out for me. He wants to do his room like "Hawaii five0 the new series", like their work room, with diamond plate stuff on dressers and have places to put stuff he likes. His room is pretty small and his bathroom really small. Im trying to figure out how to make it more user friendly. He has to step up and down a stair and sometimes falls off coming down the stair, and he hurts himself.  As he scleroses it worries me how we will eventually get him showered, and getting him up and down that stair and to make his room more user friendly. Funds are just not there to do a lot. SO if any of you have any great ideas, let me know! This kid at least still has creative skills, ideas and his sense of humor. I sure do love him!!!
Thank you all for your thoughts, prayers, love and support as we go through this enduring trial. We love you all!!! His courage to keep fighting helps me to keep going! Jen

Talans at his sisters (Janide) wedding

 These were at Talans (sister), Jandies wedding on December 14, 2013. I will cherish these FOREVER!!! These were the only pictures with Talan that day. He was to sick to attend the luncheon, pictures, and reception. :(
What a wonderful day it was. All of us in the Salt Lake Temple at the same time.... I couldnt ask for anything more than an Eternal Family!!!

HIS SUNDAY WILL COME, COME WHAT MAY AND LOVE IT!!!

This is how we will find him sometimes in bed

He is asleep here, he was reclined back. We then go in and put him back to his reclining position.

After infusion at the U of U

Having his Rituxin infusion at the U of U

http://www.youtube.com/watch?v=ieuQTKuUbBU&list=PL3Evs5iwFy_q7YVLVwyxFdSFcEGfaHnW9
//www.mormonchannel.org/video/mormon-messages?v=1101413011001
First of all we would like to thank Lori Larson and Robert Hall for nominating us to the MOM program at Malt o Meal. This program assists those in the area that are in need of assistance with medical bills. We were lucky enough to be one of the ones to be chosen for this assistance. We thank them and the MOM program for the funds they gave us to help with Talans medical bills. It helped out more than you know! This was the most awesome experience. It is always hard to be on the receiving end than on the giving. Thank you, Thank you, Thank you!!!
This is Talans' mom. As I read on Facebook of all the sorrow that is out there of loved ones suffering from some rare disease, cancer, sickness, or loss of a loved one, and anything else you can think of that affects them.  It brings me to tears, because I too, have the challenge of dealing with it in my own home. I have pondered and pondered on how to update this blog today, my heart is full, and at the same time is wrenched. As a mom, you never like to watch your kids suffer, even if it is just a cold. It is the mothers instinct to care and love that child beyond comprehension! So as I tell you today of the update on Talan, I am going to be specific and quite frank of how it is to be his mom and full time caregiver.
We were able to get the ok from insurance to get another round of  "Chemo" "Rituxin" for him. On Monday December 16, 2013 Talan was able to receive the first infusion of Rituxin, which consists a series of two within two weeks. His next infusion was on Monday December 30. We knew that this was not a cure but something that would possibly help his disease. It is supposed to help with, symptoms, slow the process of the disease down, or put it in remission for up to 6 months. It is a shot in the dark and you hope it works to its full potential!
Let me just tell you, it is scary as a parent knowing of the side effects it can have. But you have to out weigh the effect and hope it goes for the better. Right before the infusion they give him a big dose of steroid and benedryl to counter any reactions to the Rituxin. Well, Talan has been told by his endocrinologist to stay away from any steroid if possible because it could harm him worse, but if it were absolutely necessary then he could. So, then again you out weigh the affects again. As he sat there at the first infusion at the University of Utah, and they administered the steroid he got really sick. He had a reaction to the steroid, and it was scary to watch him fight for a breath and go bright red at that point they put oxygen on him. He said he felt like he was on fire and got very nauseous. Then the tears started to flow from his eyes, as he asks, why me, I hate this, I hate being sick, how much longer do I have to do this? My sisters life, my friends life and everyone else gets to move forward, and here I sit fighting for my life and every breath I take! Luckily, we had just sent his dad down to get him a drink and he didn't have to see or hear what I had just heard. I couldn't possibly have handled both or all of us taking that in. I had to try to compose myself and cuddle him and tell him it was going to be ok, and we will get through this. I told him that I don't know why you have to go through this but if I could take it away from you I would, as well as I know his dad would too. I finally got him settled down, and had him relaxed so he could try and rest and sleep while the rest of the infusion went in. It took about 6-7 hours to do. He did ok during, but did not feel good at all after it. Then the fun began, NOT! Over the next two weeks, Talan did not fair very well. I thought he wasn't doing well before the infusions. The other infusion went better and now our days and nights go like this.
We usually don't go to bed until between 12- 2 in the morning. The other morning it was 4 am. His joints and muscles hurt him so much. He has a hard time sleeping. The steroid and rituxin have made it worse. He only sleeps in hour increments. When he wakes up he asks how long he has been asleep. When we tell him its only been an hour, he just wants to cry and sometimes does. He says he feels like he has been asleep for at least 5 hours and that he feels as if he has just run a marathon. It breaks my heart that he cant have a restful sleep. He has a walkie talkie and so do I. He radios me about every hour to hour and a half. I get up to help him, and get him settled back down again, or administer his meds. Some may say, why get up with him so much? Why would I not? Im trying to take in all the time I can with him, for one day he will not be with us. This disease is mean, horrific, and challenging!!!! I don't think I can think of the last time I have slept all through the night, or had more than two hours of sleep at a time. During the day, I finally get up around 11. You know the saying when the baby sleeps, you sleep? Yep, thats me. Im still up and down with him in the morning hours to. I try so hard at night to not wake my husband up. HE is the one that has to get up and work all day to make ends meet. Im so grateful to have the husband I have. Dont get me wrong, he helps me a lot to. He helps me when he is home from the three jobs he holds, plus is our County Commissioner and is busy doing that too. My days consist of not doing much house work because if Talan finally falls asleep which he spends most of his days in his bed or chair trying to rest. When he finally falls asleep I try to be as quiet as I can so I dont wake him. I try and let him sleep when he can. Sometimes when we go in to check him, we find him slumped over in his chair asleep, or even sideways on his bed, or on the floor. He sits up when he is asleep to stretch his back, he falls asleep and slides off  his bed to the floor. Stan went in the other day to find him on the floor. He thought he was dead. WHEW glad he wasnt! Its awful to find him that way. It makes me sad.
Talans symptoms right now are, not sleeping, his legs are starting to go hard from the top down. His right leg is swelling and his knee is really swollen, and we are not sure why? We are wondering if its his blood flow not circulating well through his legs. He goes to the the Dr. for that this Tuesday. His pain is over the top, and his back is really bothering him to. He is walking with a cane at this time. As he gets in and out of bed just to go to the bathroom or to sit in his chair he can hardly walk and he moans as if he was 90 years old and cant walk. It breaks my heart! You can rub your hands down his arms and feel the hard lumps forming below his skin. I administer an injection every 6 hours, as I inject it feels just like I am going through gristle, sometimes the tissue is too hard after I start to inject and the medicine wont push through so I have to pull out and re-inject him somewhere else. I sometimes just want to cry cuz it grosses me out and I can only imagine how it must feel for him. At times he just screams because he can feel the medicine trying to find a pathway to get to good tissue to absorb. His tissue is dying inside. We know that his abdomen, esophagus, duodenum, stomach, and small intestine are affected with the disease, but are not sure what else is inside? Can you even imagine how it must feel to be turning hard from the inside out? I cant, but I witness it with him everyday.
After the holidays Talan and I got the influenza and bronchitis. It was the worst stuff I think I have ever had! I feared for his life, because his body cant handle things like that, let alone the chemo treatment on top of it. He is still struggling a little bit with it.
Just two nights ago, as he was in so much pain that he just cried, and cried. I thought to myself, there has got to be something to help him, just something!!!! I thought of our Savior and what he did for us. Talan has always said if Christ and Joseph Smith can go through what they did, then I cant complain. They went through lots more than I have. I thought, wow, what a way to think!
When we were up the other night he asks me, why me, how much longer do I have to live like this?  I cant do this much longer.... What do you say to that? It went on for over an hour, and all I could do is hold him and love him and cry with him. When he asks "Am I going to die from this?" My only comment is, we are all here to get a body and someday die, thats the plan.  We could go out tomorrow and something could happen to us. So, yes I guess you could, which the disease will take him someday. But until then I will hold on to HOPE, FAITH, and MIRACLES.
It is hard as a mother to witness such horrific changes that take place with her child. But as long as Talan holds to faith and trust in the LORD, I know he will remain here with us. It is when he has decided to give up that is when we are in trouble. I fear this is coming soon, and you know, I cant say I blame him. Day after day, he takes on new challenges, sometimes its his nervous system, endocrine system, digestive system, I could go on and on. When do you say enough is enough? All I know is what the Lords will is, is what the Lords will is! Sometimes I wonder how he does it! How am I? I have my moments of despair, sure, I cry, I fall apart, but I know my Heavenly Father is with me and blesses me everyday to do what I do and to stay strong. Someone told me the other day that Talan is being more polished than we ever will be! I agree!!
 HE is one strong man fighting a battle that we all will never know and dont understand. He is my inspiration to keep going everyday, he is my everything and I will do whatever I have to for him until the day he is not here with us. ONE DAY HIS SUNDAY WILL COME!!! COME WHAT MAY AND LOVE IT!!!
At this time he has around the clock care, it is a good day when he has an hour or two of being up and about, which is not very often anymore. He has not been able to do his Temple calling since the first month he was called because his health is declining. This week we will be introducing doTerra oils. I hope it helps!
We love you all and appreciate all your thoughts and prayers in his behalf. We could not do it without you all supporting us. Thank you for all the meals that are brought in, small acts of kindness, and the money that has been given.
I have also decided that there needs to be awareness for this disease. Im going to make a FB page about this disease, in hopes to help those out there that are suffering from the same thing or give them hope. When I have got the page done, I will post a link here and on my FB page. I would like to ask you all to please share it publicly so it can get out there. This disease is not well known and I think it needs to get out there to help others. Thanks again, and we love you all! Please enjoy these songs and video clips!
http://www.youtube.com/watch?v=P6utyL0F7os&list=PL3Evs5iwFy_q7YVLVwyxFdSFcEGfaHnW9

http://www.mormonchannel.org/video/mormon-messages?v=2781179225001

Both Infusions done!!!

Well, I told you all that I would update sooner than I have. Sorry about that, life always throws you curve balls and Im now just getting around to it. It is hard for me to post, I get very emotional and it gets my mind going and thinking to much! My heart is so full today, so I guess that means this needed to be done today.
Talan has had both of his infusions, and yes it went well while he was receiving them. The results of the infusion can take up to 6 months to see what it will do for him. But watching him get it was scary, Im not going to lie. Some of the reactions he could have had were either minimal or none at all. One in particular is the breathing. He had a little issue with feeling some heaviness in his chest and seemed a little labored breathing. His oxygen dropped and so did his blood pressure and then the blood pressure spiked. But just as all that started to happen, little tender mercies happened and he was able to pull out of them. I could go into detail, but as I get talking it just doesnt  make any sense to all of you. This is when Stan needs to step in and help me write this. Ha ha.... he has a way with words that I cannot do.
When receiving this medicine the nurses administer certain drugs just before the infusion starts, this is so he wont have severe or any reactions to the medicine. One of them is a steroid. Talan has been told to stay away from any form of steroid because of his endocrine problems. One of them being his cortisol levels. Ok, so I know most of you do not know what cortisol is, but it practically runs our bodies. This is kind of like our fight or flight adrenaline. Cortisol causes us to wake up and go to sleep. IF your body produces to much cortisol it can cause you to stroke and cause death, or it can get suppressed by steroids and cause you to have very little. Too little can cause death to. Talans cortisol levels have always fluctuated more on the little side than too much. This is why it is scary for him to have steroids.
At this point, Tal has had a really bad week or so. He was doing pretty good with bursts of energy after the infusions. I think partly that was due to the steroid given him. Its a win and lose situation. Steroids can help him with his disease because it is also a inflammatory disease. But bad because of the endocrine system, and shutting it down. He has been sleeping a lot the past 3-5 days. His pain is out of control, and just cant seem to find any energy. Which in my terms, I think it has to do with the coritsol, or is he going through what we call "one of his cycles"? I sometimes wonder why I have to know so much about all of this? But if I didnt know, I would not know the waring signs and how to try to help. Its times like this that I wonder just how many days are left numbered?
There is no way of knowing just what is being affected inside of him, sclerosing is a hard one to detect, maybe the Lord doesnt want us to know. All I can say is what an inspiration he is to all of us, and having to endure such a trial. Thank you all for your thoughts and prayers. We so appreciate all that you do for him and us, even if it is just a hello! We all have our trials to bare and I hope those of you that are also suffering can find peace and comfort also! May God bless us all! We love you all!!!