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