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!!!
Family
Monday, January 27, 2014
Talans at his sisters (Janide) wedding
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!!!
Sunday, January 26, 2014
HIS SUNDAY WILL COME, COME WHAT MAY AND LOVE IT!!!
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| This is how we will find him sometimes in bed |
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| He is asleep here, he was reclined back. We then go in and put him back to his reclining position. |
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| After infusion at the U of U |
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| Having his Rituxin infusion at the U of U |
//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
Thursday, April 4, 2013
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!!!
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!!!
Thursday, February 21, 2013
Little Miracles lead to BIGGER MIRACLES right?
Well another chapter starts. We finally got word about a week and a half ago that the medicine that we have been fighting for for Talan has been accepted by the Insurance. This is a miracle in itself!!! YAY!!!!! It has been a long time coming! This medicine along with lots of faith and prayers is the only hope we have. It may not cure him but it will surely help. We will always go for a cure though! Many prayers have been said and lots of FAITH is what its all about. Talan sure is a fighter, and a strong soul!
This medicine is called Rituxin. Some of our friends out there have had this, there are side effects Im not going to lie, but doesnt everything seem to have side effects? Of course we know that Talans body is different and he reacts to about all medicine, mostly in a negative way. This is why we would ask all of you if you would please keep Tal in your prayers. We hope that his body will receive this medicine and take it to its full advantage. It is a 6 hour infusion, he will be at the U of U all day tomorrow. This will be his first infusion and in two weeks he will have one more. He will then wait 6 months to see if it has worked and if he will need more. This is a wait and see what it will do for him, help the symptoms, slow the disease process down, or put in remission???? All would be great.
Talan is such a special spirit and we as his parents have no idea why he has to suffer at such a young age? It is very hard to watch and be helpless. But he has been an example of courage, faith and endurance! We believe that this will the first miracle that will lead to the next! He has not been able to serve at the Temple for awhile, he fell at the first of Oct. and hurt his back again. We have been trying to nurse it back since, which entailed sticking 6 needles in his back and injecting medicine. He also has falls when his leg gives out on him, which has happened several times just this past week. Talans motto is NEVER GIVE UP!!! He is not giving up, but he is very nervous about tomorrow. I know his Dad will take very good care of him, I cannot go because Im a little under the weather and the Doc said I could not be around him or the people down there. Please also keep Stan in your prayers as he is a little nervous himself being alone with him. This is such a special bonding time together. I want to thank you all for your support, thoughts, calls, texts, and prayers in our behalf! May God bless all of us going through trials at this time, as we know we are not alone! Love you all!
I will give updates as I know.....If any of you have Tals # it would be great if you could shoot him a text to say hey!
This medicine is called Rituxin. Some of our friends out there have had this, there are side effects Im not going to lie, but doesnt everything seem to have side effects? Of course we know that Talans body is different and he reacts to about all medicine, mostly in a negative way. This is why we would ask all of you if you would please keep Tal in your prayers. We hope that his body will receive this medicine and take it to its full advantage. It is a 6 hour infusion, he will be at the U of U all day tomorrow. This will be his first infusion and in two weeks he will have one more. He will then wait 6 months to see if it has worked and if he will need more. This is a wait and see what it will do for him, help the symptoms, slow the disease process down, or put in remission???? All would be great.
Talan is such a special spirit and we as his parents have no idea why he has to suffer at such a young age? It is very hard to watch and be helpless. But he has been an example of courage, faith and endurance! We believe that this will the first miracle that will lead to the next! He has not been able to serve at the Temple for awhile, he fell at the first of Oct. and hurt his back again. We have been trying to nurse it back since, which entailed sticking 6 needles in his back and injecting medicine. He also has falls when his leg gives out on him, which has happened several times just this past week. Talans motto is NEVER GIVE UP!!! He is not giving up, but he is very nervous about tomorrow. I know his Dad will take very good care of him, I cannot go because Im a little under the weather and the Doc said I could not be around him or the people down there. Please also keep Stan in your prayers as he is a little nervous himself being alone with him. This is such a special bonding time together. I want to thank you all for your support, thoughts, calls, texts, and prayers in our behalf! May God bless all of us going through trials at this time, as we know we are not alone! Love you all!
I will give updates as I know.....If any of you have Tals # it would be great if you could shoot him a text to say hey!
Wednesday, December 12, 2012
Brigham City Temple and Talan speaking to Bothwell Ward Youth
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| Talan speaking to the Bothwell ward youth |
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| Talan speaking the the Bothwell ward youth |
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| Brigham City Temple |
Logan Temple, Talan taking out his Endowments
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| The day Talan took out his endowments, | Logan Temple |
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| Talan and Jandie, Logan Temple |
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| Stan and Talan |
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| Jen and Talan |
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| Our Family, Logan Temple August 18, 2012 |
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| Talan and Carson, his friend. Logan Temple |
Moving forward with FAITH!
First of all I would like to wish you all a Merry Christmas and Happy Holidays!
For those of you that dont know, this is Jen (Talans mom) that updates his blog. I know its been awhile since I updated his blog, I always procrastinate because sometimes its hard to express my feelings about all of this. One thing is for sure, we have been blessed with a special angelic spirit that I dont know that Im worthy to have. Actually lets just say I have two children with angelic spirits!
Where do I start? In my earlier post I mentioned about Talan trying to go through the Temple. On August 18, 2012 Talan was able to go through the Logan Temple and receive his endowments. Thank you to all that helped getting him there! Can I just say what a beautiful experience this was. I cannot even tell you in words what it was like! One of the most wonderful days of my life, let alone his and everyone else that he touched that day! He put in for a service mission to the new Brigham City Temple a short time after he went through the Temple. He was able to receive the service mission to the Brigham Temple. He started the first day the Temple opened, Sept.27, 2012. He is serving in the Engineering dept. This means that there are different things he can do. Very simple things because of his disabilities, but it is very rewarding. He works there two days a week from 1-5 to see if his body could handle it, and he has the option to do more days if he can. He loves his job and goes when he can. They are very understanding of the days he cannot come. Unfortunately, he has only been able to go about 6 times since his call. He was finally set apart about 2 weeks ago. In his blessing he was told many great things, and that his body would allow him to serve the amount of time he was called, which is two years.
He hurt his back again the first of Oct. and then he fell 3 times after that. His leg will sometimes just give out on him and he falls. Well, out of these times he injured his back worse. About 3 weeks ago he had facet injections in his back. For those of you wondering what that is, its your joints in your vertebraes. Yes, this does not feel very good. The Dr. tried to sedate him a little and the medicine just kept wearing off really fast. He had 3 injections on each side of his lower back. I got to watch the whole thing. Ummmm, those needles were at least 12" long! Ya, I was just about to pass out as I watched the Dr. inject them. He had some bad muscle spasms on one side that it pushed the needles out of his joint and bent the needles. So he had to be repoked again. Which is a total of 9 times of being poked. As I watched, and watched Talan lay there and communicate with us. My heart just ached for him, what a trooper and fighter he is! There is nothing worse than watching your kids suffer! I silently cried behind him as this was happening to him. I just wanted him to be out of pain and put myself there and take it for him. I know that his trials are many and it is for us to learn from and become strong and have much faith. But as his mom I wanted to take it all away from him.
Talan had just got done with doing a two week IV antibiotic from having infection, then he moved on to his facet injection all within about a one week period of each other. With Talans disease his veins are affected and he only has about 2 to work with. This made it challenging for the IV therapy and for his sedation for his shots. We were hoping for his injections to help him with his pain, but it did not work:(
His disease is also inflammatory so he is in a lot of pain as storms roll in and out. We are now in the winter months and its not been fun for him. With his disease he loses and gains weight. Since he went through the Temple he has lost 40lbs. Now he is starting a cycle again of gaining. It is mostly water when he gains, and he does not like it when he gains. We are still fighting the Ins, Comp. to let him have the medicine he needs to help him. They are fighting it because its not FDA approved, and its only $15,000 for a milligram, even though this drug is used a lot for cancer patients and for Rheumo arthritis. This medicine is Rituxin, there is a Dr. that has studied this drug on some patients with this disease on the east coast that it has helped and thats why his Dr. wants to use it. There are some other options for him if they turn it down again, but it wont do what this other can do. All in all, it will be a wait and see what it does for him. Again, there is no cure for his disease, IGg4 systemic sclerosing disease. In my posts below there are some links that I put there so you can go and see what it is.
Talan really bounced back to doing pretty good since he went through the temple, but over the past month he has been declining again. I know its just the disease process to come and go in cycles. We were hoping for a longer time of relief. This to shall pass, and we will move forward with faith that there will be many more miracles brought to him. Talan really could use some friends, if you have a son, daughter or even you that would be interested in texting him or talking to him or visiting him that would be great! He is on FB but does not get on there very often. He says he doesnt have anything to offer anyone because he cant function like he wants to and all the girls at this age are looking for marriage and he cant support them. If he asks someone out and they turn him down. He has been down a little bit lately and could use a good friend. Times are tough at this age, his friends he has are married or going to school full time and working. He gets frustrated because his body doesnt allow him to move forward like them. We are hoping that he can get this medication so that he can function more and move on with his future. Whatever happens is Gods will, but HE and WE will not give up!
I cannot even begin to tell you though what a testimony of the gospel he has. He tries so hard to be upbeat and positive. He knows that God has a plan for him and he just needs to trust in him and have faith. He has taught us so many lessons and his example of his edifying spirit. He has recently lost two different gentlemen that lived in our ward that also had long term chronic illnesses that he grew a special bond with. They all understood how each other felt, and could relate to what each other was going through. Its through their examples that he fights everyday! To those families that read this, he loved your son, husband, or dad! He looks up to them as great men that fought their battles with much faith!
One last thing, when the announcement of the Brigham City Temple was announced some of our Stakes in the temple district decided to have the young men and young women to walk to the temple from their Stake house. Our ward did this, and on the trek there Talan was asked to come and talk to the youth about going through the Temple and his job that he was called to. When they broke for a break, Talan spoke to them. If I can upload the video of him, Im going to let you here him tell the story he gave. Thank you to the leaders that asked him to come and do this. It was such a wonderful moment in time! I would like to share with you a little story that Stan put on his FB page about a month ago. I just want to tell you all thank you so much for putting us in your prayers and putting our names in the Temple. We feel your love....
(This is written by Stan.) Just got talan to sleep its been a rough couple of weeks! But sitting by him tonight he bore his sweet and humble testimony to me. He started with quote from a book he has been reading by John Groberg, yes the same John from the movie the other side of heaven, it's called blessings of the temple he said a chapter in it spoke straight to his heart, it was about someone that needed answers, that was
For those of you that dont know, this is Jen (Talans mom) that updates his blog. I know its been awhile since I updated his blog, I always procrastinate because sometimes its hard to express my feelings about all of this. One thing is for sure, we have been blessed with a special angelic spirit that I dont know that Im worthy to have. Actually lets just say I have two children with angelic spirits!
Where do I start? In my earlier post I mentioned about Talan trying to go through the Temple. On August 18, 2012 Talan was able to go through the Logan Temple and receive his endowments. Thank you to all that helped getting him there! Can I just say what a beautiful experience this was. I cannot even tell you in words what it was like! One of the most wonderful days of my life, let alone his and everyone else that he touched that day! He put in for a service mission to the new Brigham City Temple a short time after he went through the Temple. He was able to receive the service mission to the Brigham Temple. He started the first day the Temple opened, Sept.27, 2012. He is serving in the Engineering dept. This means that there are different things he can do. Very simple things because of his disabilities, but it is very rewarding. He works there two days a week from 1-5 to see if his body could handle it, and he has the option to do more days if he can. He loves his job and goes when he can. They are very understanding of the days he cannot come. Unfortunately, he has only been able to go about 6 times since his call. He was finally set apart about 2 weeks ago. In his blessing he was told many great things, and that his body would allow him to serve the amount of time he was called, which is two years.
He hurt his back again the first of Oct. and then he fell 3 times after that. His leg will sometimes just give out on him and he falls. Well, out of these times he injured his back worse. About 3 weeks ago he had facet injections in his back. For those of you wondering what that is, its your joints in your vertebraes. Yes, this does not feel very good. The Dr. tried to sedate him a little and the medicine just kept wearing off really fast. He had 3 injections on each side of his lower back. I got to watch the whole thing. Ummmm, those needles were at least 12" long! Ya, I was just about to pass out as I watched the Dr. inject them. He had some bad muscle spasms on one side that it pushed the needles out of his joint and bent the needles. So he had to be repoked again. Which is a total of 9 times of being poked. As I watched, and watched Talan lay there and communicate with us. My heart just ached for him, what a trooper and fighter he is! There is nothing worse than watching your kids suffer! I silently cried behind him as this was happening to him. I just wanted him to be out of pain and put myself there and take it for him. I know that his trials are many and it is for us to learn from and become strong and have much faith. But as his mom I wanted to take it all away from him.
Talan had just got done with doing a two week IV antibiotic from having infection, then he moved on to his facet injection all within about a one week period of each other. With Talans disease his veins are affected and he only has about 2 to work with. This made it challenging for the IV therapy and for his sedation for his shots. We were hoping for his injections to help him with his pain, but it did not work:(
His disease is also inflammatory so he is in a lot of pain as storms roll in and out. We are now in the winter months and its not been fun for him. With his disease he loses and gains weight. Since he went through the Temple he has lost 40lbs. Now he is starting a cycle again of gaining. It is mostly water when he gains, and he does not like it when he gains. We are still fighting the Ins, Comp. to let him have the medicine he needs to help him. They are fighting it because its not FDA approved, and its only $15,000 for a milligram, even though this drug is used a lot for cancer patients and for Rheumo arthritis. This medicine is Rituxin, there is a Dr. that has studied this drug on some patients with this disease on the east coast that it has helped and thats why his Dr. wants to use it. There are some other options for him if they turn it down again, but it wont do what this other can do. All in all, it will be a wait and see what it does for him. Again, there is no cure for his disease, IGg4 systemic sclerosing disease. In my posts below there are some links that I put there so you can go and see what it is.
Talan really bounced back to doing pretty good since he went through the temple, but over the past month he has been declining again. I know its just the disease process to come and go in cycles. We were hoping for a longer time of relief. This to shall pass, and we will move forward with faith that there will be many more miracles brought to him. Talan really could use some friends, if you have a son, daughter or even you that would be interested in texting him or talking to him or visiting him that would be great! He is on FB but does not get on there very often. He says he doesnt have anything to offer anyone because he cant function like he wants to and all the girls at this age are looking for marriage and he cant support them. If he asks someone out and they turn him down. He has been down a little bit lately and could use a good friend. Times are tough at this age, his friends he has are married or going to school full time and working. He gets frustrated because his body doesnt allow him to move forward like them. We are hoping that he can get this medication so that he can function more and move on with his future. Whatever happens is Gods will, but HE and WE will not give up!
I cannot even begin to tell you though what a testimony of the gospel he has. He tries so hard to be upbeat and positive. He knows that God has a plan for him and he just needs to trust in him and have faith. He has taught us so many lessons and his example of his edifying spirit. He has recently lost two different gentlemen that lived in our ward that also had long term chronic illnesses that he grew a special bond with. They all understood how each other felt, and could relate to what each other was going through. Its through their examples that he fights everyday! To those families that read this, he loved your son, husband, or dad! He looks up to them as great men that fought their battles with much faith!
One last thing, when the announcement of the Brigham City Temple was announced some of our Stakes in the temple district decided to have the young men and young women to walk to the temple from their Stake house. Our ward did this, and on the trek there Talan was asked to come and talk to the youth about going through the Temple and his job that he was called to. When they broke for a break, Talan spoke to them. If I can upload the video of him, Im going to let you here him tell the story he gave. Thank you to the leaders that asked him to come and do this. It was such a wonderful moment in time! I would like to share with you a little story that Stan put on his FB page about a month ago. I just want to tell you all thank you so much for putting us in your prayers and putting our names in the Temple. We feel your love....
(This is written by Stan.) Just got talan to sleep its been a rough couple of weeks! But sitting by him tonight he bore his sweet and humble testimony to me. He started with quote from a book he has been reading by John Groberg, yes the same John from the movie the other side of heaven, it's called blessings of the temple he said a chapter in it spoke straight to his heart, it was about someone that needed answers, that was
going to the temple several
times a week to have the Lord help him with his questions, receiving no
answers he asked John who was the temple president , why he was not
receiving the answers to his questions! Brother Groberg told him to keep
coming , and with faith, in the lords time the answers would be given
to him. He went to leave, Bro, Groberg was impressed to give him further
instruction, he said when you come to the temple try to focus more on
the person your trying to help, what their life was like, trials, family
struggles! And do the work for them to the best of your abilities! What
great advice! Talan said when I'm at the temple I'll try to do that and
the lord will help me also I'm sure! Talan thanks for teaching your
father a true gospel principle, and talan finished it up by saying dad
did you know that Christ got mad at the Apostles the garden, he told
them two times, could you not wait with me for an hour? And. The third
time he just said sleep well! Tal said I think thats what the lord
expects from us! Do the best we can and then the Lord will tell us rest
well!! Once again taught by my son! I just have to keep remembering
God said it came to pass he never said it came to stay! Hope every one
who reads this is as touched as I have been tonight! Thanks for all your
prayers, in our behalf, may the Lord continue to bless us during our
time in the garden! Love you all have a good night!
Once again, a teaching moment from such a great and wonderful spirit that I get to call my "Son"! Love you all! I will try and keep you more updated. He has a appt. with his Dr. on Friday. Hope we will get some good news about meds!
Saturday, July 21, 2012
Counting our Blessings, one by one.... Bittersweet news
Please keep in mind that our Dr. for Talan is in his 80's and he tends to change his mind often, so this is the route that he has chosen for now, it could be subject to change. We will know more next Friday when we go back for an appt. Oh where do I start? Upon all the prayers that have been said from our family and friends we finally and hopefully have an unanswered question answered. It has been a very long, long, long, 7-10 years! We took Talan to his Dr. at the University of Utah yesterday (July 20, 2012) I will never forget this day.... The Dr. came to a conclusion of what he is going to treat Talan for. It is called "IGg4 systemic sclerosing disease." It is very rare, obviously. Dr. Gleigh (Glieck) is how it is pronounced. He has been a Dr. at the Mayo clinic for over 30 years and moved out here to kinda retire. He is the one that sent us out to the Mayo in April for more testing. As the Dr.s reviewed Talans case they came to this conclusion. It has been a long road for all of us. I cant imagine how Talan has done this for so long and what a courageous battle he has fought! The not knowing of what his disease was and how he would express his frustration of how to make people know he was really sick.
When you have something that is rare and the Dr.s cant seem to find the problem and they know he is sick, its the people on the outside that dont understand. I can recall times that his coaches would call him a sicky, also those that would tell others that he was just faking it because he was lazy, or that he was addicted to meds, and so forth. Talan would feel so bad when he would hear these things and ask why people dont understand? I dont want this myself! We would tell him until someone else goes through what you and we have they will never truly understand. It is by faith and prayers that our family has been able to deal with such an agonizing frustration with a chronic illness. We now finally have an answer to our prayers. It is such a bitter sweet moment. It may not be what we wanted to hear but at least its an answer.
This is an autoimmune disease which means it will never be cured, but can be treated. At this point we do not know what the infusions will do for him. We arent sure if they will suppress the disease, slow it down, or help with just the symptoms. It is on we"ll see basis. The Dr.s dont know much about this disease because it is so broad.
There are treatments such as steroids that they say will help, but not a choice of action for Talan. He cannot have steroids because his endocrine system is being affected and his body is over producing a natural steroid in his body. The Dr. will attack it at more of an aggressive way with an infusion of probably what is called Rituximab or Rituxin. There may be more meds chosen but we do not know at this point. We do not know what organs or if any are involved at this time until we do further testing, scans, ect. We do know that his tissue under his abdomen, back, and flanks are being affected. We also do not know the outcome of the disease! All I know is this disease is mean! You are so so sick, and the pain you get from it is unbelievable... our hearts just ache watching Talan suffer. We are in hopes that the infusions will help him, although the Dr. told us that a sclerosing disease is very hard to treat and it could take him up to a year to fully regain strength. Im sure little by little he will feel better but the doc also said that there is side effects to the infusions, but the doc said to keep in mind the outcome of eventually feeling better. Talan still has a long road ahead of him and his emotions are of course all over the place. Lots of questions that we still just cant answer, but we will move forward with faith.
I have attached a few links that you can go to and see a little more explanation of the disease, but keep in mind that it is rare and not all that you research pertains to the disease. It seems that it supposed to start in the pancreas, but we do not know that yet with him. He will be having a stomach scope this week for further testing. He throws up a lot and gets bleeding ulcers in there.
REMEMBER that this disease is a systemic and sclerosing disease. Systemic means that any of our systems of our body can be affected one or more at a time and this is why it has been so hard for Talan to be diagnosed. One system would act up and then go back to normal, then another would act up and then go to normal.
TALANS SYMPTOMS: Very fatigued, fever, throwing up, bleeding ulcers in the stomach, you see what his skin does and then the tissue turning hard, pain all over body, headaches, inflammatory problems throughout his body, water retention, weight gain and loss of weight. Im sure there are more but this is what sticks out in my head. Stan and I spend sometimes endless nights up rubbing his muscles in his arms, hands, legs, feet, neck, and head. Sometimes his pain is so unbearable we just sit and cry together.
We just want to thank everyone for keeping him and our family in your prayers and putting our names in the Temples. I have even heard from a friend our names went in the temple in Texas! This is truly what has been keeping us bouyed up and being able to deal with life. It is such a violent chronic disease, Talan has truly been a great example of Christ like courage, faith, and hope! Needless to say I need to mention his sister Jandie for being the other great example of Christ like attitude! She literally keeps us all going. I have come to realize that I have such special spirits that chose to come to us as their parents. I feel so honored to be their parent.
If you wouldnt mind to still keep Talan in your prayers, he still has a lot he will need to go through to fight this disease. We are deeply greatful to all of you that have stood by our sides and helping us through our trial. This is what we have been put here for to see how well we pass the test! LOVE YOU ALL!
This disease is so complicated that I cant even explain all that is happening to Talan but here is the links that hopefully will help a little. Dont worry if its over your heads cuz its still over mine, but I have also studied so much in the past years that it makes sense to me.
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CGkQFjAB&url=http%3A%2F%2Fen.wikipedia.org%2Fwiki%2FIgG4%25E2%2580%2593related_systemic_disease&ei=K2ELUPmUKqGY2AXQ_NUv&usg=AFQjCNGeNiUJMbsQNHDvcyG1hH2YmEHwmg&sig2=iy0uB_VGuOggBbYdZ_Sbdg
http://e-immunohistochemistry.info/web/IgG4-related_systemic_disease.htm
When you have something that is rare and the Dr.s cant seem to find the problem and they know he is sick, its the people on the outside that dont understand. I can recall times that his coaches would call him a sicky, also those that would tell others that he was just faking it because he was lazy, or that he was addicted to meds, and so forth. Talan would feel so bad when he would hear these things and ask why people dont understand? I dont want this myself! We would tell him until someone else goes through what you and we have they will never truly understand. It is by faith and prayers that our family has been able to deal with such an agonizing frustration with a chronic illness. We now finally have an answer to our prayers. It is such a bitter sweet moment. It may not be what we wanted to hear but at least its an answer.
This is an autoimmune disease which means it will never be cured, but can be treated. At this point we do not know what the infusions will do for him. We arent sure if they will suppress the disease, slow it down, or help with just the symptoms. It is on we"ll see basis. The Dr.s dont know much about this disease because it is so broad.
There are treatments such as steroids that they say will help, but not a choice of action for Talan. He cannot have steroids because his endocrine system is being affected and his body is over producing a natural steroid in his body. The Dr. will attack it at more of an aggressive way with an infusion of probably what is called Rituximab or Rituxin. There may be more meds chosen but we do not know at this point. We do not know what organs or if any are involved at this time until we do further testing, scans, ect. We do know that his tissue under his abdomen, back, and flanks are being affected. We also do not know the outcome of the disease! All I know is this disease is mean! You are so so sick, and the pain you get from it is unbelievable... our hearts just ache watching Talan suffer. We are in hopes that the infusions will help him, although the Dr. told us that a sclerosing disease is very hard to treat and it could take him up to a year to fully regain strength. Im sure little by little he will feel better but the doc also said that there is side effects to the infusions, but the doc said to keep in mind the outcome of eventually feeling better. Talan still has a long road ahead of him and his emotions are of course all over the place. Lots of questions that we still just cant answer, but we will move forward with faith.
I have attached a few links that you can go to and see a little more explanation of the disease, but keep in mind that it is rare and not all that you research pertains to the disease. It seems that it supposed to start in the pancreas, but we do not know that yet with him. He will be having a stomach scope this week for further testing. He throws up a lot and gets bleeding ulcers in there.
REMEMBER that this disease is a systemic and sclerosing disease. Systemic means that any of our systems of our body can be affected one or more at a time and this is why it has been so hard for Talan to be diagnosed. One system would act up and then go back to normal, then another would act up and then go to normal.
TALANS SYMPTOMS: Very fatigued, fever, throwing up, bleeding ulcers in the stomach, you see what his skin does and then the tissue turning hard, pain all over body, headaches, inflammatory problems throughout his body, water retention, weight gain and loss of weight. Im sure there are more but this is what sticks out in my head. Stan and I spend sometimes endless nights up rubbing his muscles in his arms, hands, legs, feet, neck, and head. Sometimes his pain is so unbearable we just sit and cry together.
We just want to thank everyone for keeping him and our family in your prayers and putting our names in the Temples. I have even heard from a friend our names went in the temple in Texas! This is truly what has been keeping us bouyed up and being able to deal with life. It is such a violent chronic disease, Talan has truly been a great example of Christ like courage, faith, and hope! Needless to say I need to mention his sister Jandie for being the other great example of Christ like attitude! She literally keeps us all going. I have come to realize that I have such special spirits that chose to come to us as their parents. I feel so honored to be their parent.
If you wouldnt mind to still keep Talan in your prayers, he still has a lot he will need to go through to fight this disease. We are deeply greatful to all of you that have stood by our sides and helping us through our trial. This is what we have been put here for to see how well we pass the test! LOVE YOU ALL!
This disease is so complicated that I cant even explain all that is happening to Talan but here is the links that hopefully will help a little. Dont worry if its over your heads cuz its still over mine, but I have also studied so much in the past years that it makes sense to me.
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CGkQFjAB&url=http%3A%2F%2Fen.wikipedia.org%2Fwiki%2FIgG4%25E2%2580%2593related_systemic_disease&ei=K2ELUPmUKqGY2AXQ_NUv&usg=AFQjCNGeNiUJMbsQNHDvcyG1hH2YmEHwmg&sig2=iy0uB_VGuOggBbYdZ_Sbdg
http://e-immunohistochemistry.info/web/IgG4-related_systemic_disease.htm
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