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| The latest "Summers Family pic," Dec. 2012 |
Family
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
Monday, June 4, 2012
Thursday, May 24, 2012
Wednesday, May 23, 2012
Starting from day one....
As you all know our son Talan has had such a difficult little life. He started out as a 29 weeker, his weight was only 2 lbs 10 oz.. He fought all the odds, with having heart surgery at only 2 weeks old and multiple other problems as a preemie. He has had a struggle from day one but has been able to fight hard all of his life. He has always had health problems, but he fought through them and we just thought that it was normal to have him sick as much as he was. The Dr.s always told us to keep him away from a lot of people during the first year of life to give him a chance to fight through sicknesses that people carried and to build his immune system.
May 23,2012
As Talan grew up, he had a full of life personality and was able to play sports and have fun with friends. He was a natural athlete and had many talents. He also loved to ride his four wheeler with friends at the dunes and out and about around our house. He was always full of life and full of shit, I would call it! He has such a funny personality and always was cracking jokes.
When Talan was a freshman he started having more health problems with sinus' and had two sinus surgeries back to back within six months of each other to get rid of staph. He still to this day fights problems with his sinus'. He made the basketball team for Bear River as a Freshman and played well even though he was sick. He also played football that year and did very well.
His sophomore year he made the football team and basketball team and also played very well and loved to play his sports. In fact Talan even lettered in football his sophomore year. There were only 3 sophs that lettered that year and he was one of them. We were so proud of him. As the year came to an end at school, football camp was coming up. He went to football camp and he practiced and practiced. At one of the practices he was in a drill of blocking and he hit head on with another player and he said he practically decleated the opponent. Ha ha..... but as he went to stand up he really couldnt, his back had a severe pain and so did his leg and it was numb. He was not able to play the rest of the camp. Come to find out he had broke his back. He was in a turtle shell for 3 months to try to heal it but it did not work. He ended up having back surgery.
Talan ended up with 4 screws and wire to hold him together. After this his health went into a tail spin. After a year and a half, Tal went back into surgery to remove the hardware because it was to painful to leave in. Talan never has recovered from his back injury and he also has a 3 curve scoliosis in his spine to boot. He ended up not going back to High School but he did finish.
As time went on his health started to decline. He would lose weight and then gain weight, his pain was unbearable. His joints hurt, and he has had multiple other issues way too many to go into that you wouldnt understand if I explained them because it is complicated for me to understand.
We have went to the National Institutes of Health twice in Maryland for a possible cushings disease. They discovered there that he did not have cushings but that he had something that was systemic. This means that this rare disease is affecting every system in his body and thats why he has weight loss and weight gain and many other symptoms. This is why it is hard to diagnose him because it affects systems and then all of the sudden they become normal again. The NIH said that he has a rare disease that they cannot pinpoint!
We are now into our 7th year with his rare disease and he is still fighting hard for his life! He never gives up and the day he does we are no longer going to see our Talan!
Talan and I (mom) just went out to the Mayo clinic for more testing. We went out for them to test him for a disease they thought he had called IGg4 sclerosing systemic disease. Talans back you can see has had ulcers on it and now it is sclerosing. Which means his tissue is dying clear through the muscle. He is doing this in his abdomen, buttocks, back, and now thighs. We have no idea if he is doing it other places but it can reach his internal organs.
MAYO UPDATE, MAY 21,2012
On May 21, 2012 the Dr. from the Mayo called us and told us this. "We know he is sclerosing but we dont know why? He is having an inflammatory process, and edema and we dont know why? He has a positive autoimmune test but we just cant put our finger on what disease it is. We know that it is causing systemic issues in his body along with lots of pain. He is on the verge of scleroderma and the IGg4 disease. But we do not feel comfortable enough to make the call just yet. He needs to get worse before we can name it. (I thought really? Can it get any worse?) He is already almost bed ridden and cant walk very far. He is also very fatigued and sometimes even falls because his right leg goes numb and its just not there. He almost weighs 300 lbs., alot of it is water retention. So for now the Dr.s orders are to keep doing what we are doing and they are going to watch him close for more changes. They want him to do some kind of rehabilitation so his muscles wont get contractures, because when you scleros it affects the muscles. The sclerosing can reach the internal organs and we do not know if it is at this point or not? We asked for a scan to be done to see and they told us it would be a waste of time and money because if he was there was nothing they could do for it. There is no medicine to stop sclerosing! The Dr. explained it like this, its like going outside and its cloudy and you wonder is it going to rain or not?" He also told us just because he does not have a clear diagnosis it does not mean he is not sick. He is very sick, and we wish we had more answers.
I asked the Dr. if the environment could have anything to do with causing him to sclerose. Like chemicals or toxins in the air or that he has come in contact with. He said YES! It was up to me to look into that with the EPA of things that have been burned in the area and so forth. I wonder, is it really worth it? Sounds like a lot of leg work that I dont know if I have the knowledge to do. There are some tests to test him to see if that toxin or chemical is in his body and possibly some medicines to counter act it?
Talan not only has the rare disease to deal with but also his back issues.
All Dr.s he has seen said that his pain meds are warranted and that they are not the cause of his rare disease. I know there have been a lot of people with questions to this. This is why Im telling you it is not the cause! When someone has chronic pain, they are not addicted to drugs but they may be dependent on them. This is something we define all of the time. I think there needs to be more awareness for people to understand the difference.
This is a difficult challenge for Talan and for us as a family! Everyday living is not easy, but we know that our Heavenly Father is very aware of our situation and we receive blessings everyday. The biggest blessing is that we still have our Talan! His humor is buried and sometimes comes out and it is very joyous to hear it when it is shown. Talan needs friends, he has had so many of his High School friends that still come and see him and this is what keeps him going. It is hard for him to see them all move on with missions, college, marriage and so forth. Thank you so much for all your love and concern, thoughts, and prayers! He may not be healed with the prayers but it is helping him fight to his fullest ability and helping us stay strong. I know sometimes that I put things on Facebook that might offend people but there comes a time that you just cant take anymore and Im sorry if I offended you! Please understand that it is difficult for us as parents to be helpless and we are doing our best to help him and we are not going to give up! We just ask for your continued love, support, and not hurtful rumors. Please if you have any questions please just ask Stan or I and we will be gladly to answer them to the best of our ability. Thank you for your friendships! I will try and keep this update as time goes by. Thanks again everyone....
May 23,2012
As Talan grew up, he had a full of life personality and was able to play sports and have fun with friends. He was a natural athlete and had many talents. He also loved to ride his four wheeler with friends at the dunes and out and about around our house. He was always full of life and full of shit, I would call it! He has such a funny personality and always was cracking jokes.
When Talan was a freshman he started having more health problems with sinus' and had two sinus surgeries back to back within six months of each other to get rid of staph. He still to this day fights problems with his sinus'. He made the basketball team for Bear River as a Freshman and played well even though he was sick. He also played football that year and did very well.
His sophomore year he made the football team and basketball team and also played very well and loved to play his sports. In fact Talan even lettered in football his sophomore year. There were only 3 sophs that lettered that year and he was one of them. We were so proud of him. As the year came to an end at school, football camp was coming up. He went to football camp and he practiced and practiced. At one of the practices he was in a drill of blocking and he hit head on with another player and he said he practically decleated the opponent. Ha ha..... but as he went to stand up he really couldnt, his back had a severe pain and so did his leg and it was numb. He was not able to play the rest of the camp. Come to find out he had broke his back. He was in a turtle shell for 3 months to try to heal it but it did not work. He ended up having back surgery.
Talan ended up with 4 screws and wire to hold him together. After this his health went into a tail spin. After a year and a half, Tal went back into surgery to remove the hardware because it was to painful to leave in. Talan never has recovered from his back injury and he also has a 3 curve scoliosis in his spine to boot. He ended up not going back to High School but he did finish.
As time went on his health started to decline. He would lose weight and then gain weight, his pain was unbearable. His joints hurt, and he has had multiple other issues way too many to go into that you wouldnt understand if I explained them because it is complicated for me to understand.
We have went to the National Institutes of Health twice in Maryland for a possible cushings disease. They discovered there that he did not have cushings but that he had something that was systemic. This means that this rare disease is affecting every system in his body and thats why he has weight loss and weight gain and many other symptoms. This is why it is hard to diagnose him because it affects systems and then all of the sudden they become normal again. The NIH said that he has a rare disease that they cannot pinpoint!
We are now into our 7th year with his rare disease and he is still fighting hard for his life! He never gives up and the day he does we are no longer going to see our Talan!
Talan and I (mom) just went out to the Mayo clinic for more testing. We went out for them to test him for a disease they thought he had called IGg4 sclerosing systemic disease. Talans back you can see has had ulcers on it and now it is sclerosing. Which means his tissue is dying clear through the muscle. He is doing this in his abdomen, buttocks, back, and now thighs. We have no idea if he is doing it other places but it can reach his internal organs.
MAYO UPDATE, MAY 21,2012
On May 21, 2012 the Dr. from the Mayo called us and told us this. "We know he is sclerosing but we dont know why? He is having an inflammatory process, and edema and we dont know why? He has a positive autoimmune test but we just cant put our finger on what disease it is. We know that it is causing systemic issues in his body along with lots of pain. He is on the verge of scleroderma and the IGg4 disease. But we do not feel comfortable enough to make the call just yet. He needs to get worse before we can name it. (I thought really? Can it get any worse?) He is already almost bed ridden and cant walk very far. He is also very fatigued and sometimes even falls because his right leg goes numb and its just not there. He almost weighs 300 lbs., alot of it is water retention. So for now the Dr.s orders are to keep doing what we are doing and they are going to watch him close for more changes. They want him to do some kind of rehabilitation so his muscles wont get contractures, because when you scleros it affects the muscles. The sclerosing can reach the internal organs and we do not know if it is at this point or not? We asked for a scan to be done to see and they told us it would be a waste of time and money because if he was there was nothing they could do for it. There is no medicine to stop sclerosing! The Dr. explained it like this, its like going outside and its cloudy and you wonder is it going to rain or not?" He also told us just because he does not have a clear diagnosis it does not mean he is not sick. He is very sick, and we wish we had more answers.
I asked the Dr. if the environment could have anything to do with causing him to sclerose. Like chemicals or toxins in the air or that he has come in contact with. He said YES! It was up to me to look into that with the EPA of things that have been burned in the area and so forth. I wonder, is it really worth it? Sounds like a lot of leg work that I dont know if I have the knowledge to do. There are some tests to test him to see if that toxin or chemical is in his body and possibly some medicines to counter act it?
Talan not only has the rare disease to deal with but also his back issues.
All Dr.s he has seen said that his pain meds are warranted and that they are not the cause of his rare disease. I know there have been a lot of people with questions to this. This is why Im telling you it is not the cause! When someone has chronic pain, they are not addicted to drugs but they may be dependent on them. This is something we define all of the time. I think there needs to be more awareness for people to understand the difference.
This is a difficult challenge for Talan and for us as a family! Everyday living is not easy, but we know that our Heavenly Father is very aware of our situation and we receive blessings everyday. The biggest blessing is that we still have our Talan! His humor is buried and sometimes comes out and it is very joyous to hear it when it is shown. Talan needs friends, he has had so many of his High School friends that still come and see him and this is what keeps him going. It is hard for him to see them all move on with missions, college, marriage and so forth. Thank you so much for all your love and concern, thoughts, and prayers! He may not be healed with the prayers but it is helping him fight to his fullest ability and helping us stay strong. I know sometimes that I put things on Facebook that might offend people but there comes a time that you just cant take anymore and Im sorry if I offended you! Please understand that it is difficult for us as parents to be helpless and we are doing our best to help him and we are not going to give up! We just ask for your continued love, support, and not hurtful rumors. Please if you have any questions please just ask Stan or I and we will be gladly to answer them to the best of our ability. Thank you for your friendships! I will try and keep this update as time goes by. Thanks again everyone....
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