Saturday, August 5, 2017

From one trial drug to another

Talan so exhausted he fell over asleep from his new shots he gets once a month

Talan enjoys playing xbox

We met with Senator Orin Hatch today before our genetic testing appt.

Talan meeting with Senator Hatch

On our way to the Geneticist we stopped at Senator Orin Hatch's office. Senator Hatch wanted to meet Talan. He has been trying to pass bills for the rare disease community in Washington D.C.

Geneticist day, we got genetic tested..... Best day ever!

Primary Childrens Hospital, Genetic testing day

This was an amazing day!!! The day we have been waiting for a long time. Genetic testing was done

Tal on our way home from the Dr. poor kid

Braeden taking Talan shooting for his bday. Braeden packed everything up for Tal and unpacked so he didnt have to do anything but shoot.

Caught Tal in this position sleeping and he doesnt even know he fell asleep. The disease just really does weird things to him and then add on a new medication that exhausts him to the limit.

This is how Talan gets with his new medication the shots he gets once a month. It kicks his butt

Eating for Tals bday with the family

celebrating Talans 26th Bday

Tal going to blow out his candles, lungs were bad but couldnt pass up blowing out his candles. No O2 around fire!

Talans 26 bday trying on his new hat

Talans 26 bday

Talans 26 bday kiss from mom

Dad and Talan on his 26 bday, pure love

Talan totally exhausted and fell asleep like this

Braeden came and took Talan for his Bday to go shooting

There is a difference between empathy and sympathy

This was after shooting on his bday, it took it all out of him

Talans feet swelled up so bad after he went shooting it was misery for him

swelling with water is not a good time for him

Easter 2017 he was very miserable

Talans friend Dustin came to visit with his little boy Beck

Talan out shooting for his 26 bday with Braeden.
 Braedon was so good to him this day

Tal out shooting on the range on his bday. We cant thank Braeden enough for doing all the hard work to get Talan out of the house for his bday.

Tal getting his first IL5 (Nucala) shot. He gets them once a month

Talan exhausted and cant function due to his shot of IL5 (Nucala)

On our way home from Salt Lake, Tal got his shot this day

Talans shot still taking its toll on him

I took Tal to his Dr. appt at the U of U. Not so good news today and he was out as soon as he hit the car seat.

Tal after his Dr. appt at the U of U exhausted

This is what Talans skin is doing. His poor feet hurt so bad. Can you imagine what its doing inside of his body?

Tals legs are going red. The Dr. says this is due to the fibrosing and the blood flow is not good anymore. They are literally pretty hard when you touch them

Tals leg and feet swelling

swelling and redness in his fibrosing legs


Its been awhile since I have updated Talans blog. I have had my own health issues and its been hard to keep up for awhile. I will try and keep this short and sweet and to the point. 
Since March we have had a lot go on. In March we were able to get genetic tested what an answer to our prayers. Its been a long time coming that we have awaited this day. It was by miracle we were able to get it done. I will never question who is in charge, because faith has a lot to do with everything! We have still not got our results back yet. They told us that it could take up to 6 months to get them back. The longer it takes to get them back the better it is because they are tying to decode the DNA. So we are going on 5 months now. Im hoping we get some answers. If not they told us not to worry because we would probably be candidates for more in depth testing. Right now we have only had exome sequencing and that is only a 1/3 of your DNA. We dont expect answers but hope there is some to this madness we call RARE! As you can see in the pictures above how this affects Talan. Its not fun....
On our way to the Geneticist we were privileged to stop and meet with Senator Orin Hatch. He has done so much for the rare community and getting bills passed in D.C. for all of us. He wanted to meet Talan, one of the many he is fighting for. Thank you to his staff for getting it set up and for letting Talan have the experience he will never forget.

Next we have the month of April and that is Talans birthday month. He turned 26 years old, oh my Im getting old. But how grateful I am that Talan is still with us. Sometimes he gives us quite the scare and we never know when the day will be that he will be called home with his Heavenly Father. I cherish each moment I get with him. I may not always have the patience but I sure try. I cant imagine how he feels. But he sure puts up a fight and shows us how to never give up!
For his Birthday a friend of his Braeden came and brought him lunch and then packed all of Talans guns up and everything that goes with that, packed Talan up with his oxygen and took off for a couple of hours to go shooting. Talans favorite thing to do. They had so much fun, but oh did Talan ever get sick from going out. We cant thank Braeden enough for coming and getting Tal out of the house for a few hours to try and feel like he had somewhat of a normal life. Braeden had so much compassion for Talan it literally brought us to tears. Unfortunately Talan paid the price for going out. It broke our hearts and this is one of those scary times we thought we were going to lose him. He started to swell you can see that in the pictures above. He started to throw up uncontrollable. That horrific sound of him throwing up so hard that you dont think he can make it through it. It makes my husband and I cry. He got so bad I thought at one time we were going to have to call an ambulance. Thank goodness he pulled out of it on his own. But the problem is he still hasnt pulled out of it all the way, hes still in it. Everyday his life just becomes dimmer and dimmer for him. We constantly talk about death and what it will be like and how I will make sure he doesnt suffer to breathe at the end, and what is on the other side. No parent should have to have these talks with their kids, EVER!!!! But I can say how beautiful it is to feel the spirits around us that we cant see and the overwhelming feelings you get that seems to comfort you at those moments of grief. I grieve everyday for him but I know that we arent given more than we can handle. Talan is a very strong soul and builds me and his dad up more than we probably build him up. Just recently Stan his dad took Talan to the Dr and they got stuck in traffic. They got talking and he told his dad "Dad at least we get to be together a little longer" and then the conversation started about life and all that he's been through, he said dad if I die don't be sad, I know where Im going. It just makes me nervous who is going to be there to meet me there. Oh if he only knew how many are there to greet him especially his Savior. He is my HERO!

Then we have the month of May, this was the month that Talans medicine was approved called IL5, Interleukin 5 or also known as (Nucala) why so many names and abbreviations if you only knew all the abbreviations and words we have had to learn. But any how the shots are once a month and they are to try and control his eosinophils from producing and turning him hard. Which that is only one type of cell in his disease that is turning him hard. This cell is the contributor for him throwing up a lot! We were praying they would work. The IL5 is an anitbody being put into his body. His body is now rejecting it.
As time has gone on now over that past few months we started to see a trend. They seemed to work a little but they were making him so tired that he has been sleeping 18-20 hours a day. The shots are making him not able to function at all and its a chore for him to do anything even get out of his chair. He has had three of them and will have one more this month and then changes will be made.

In between the month of May and June Talan was given a wish trip to Alaska by two different foundations. We had it all set up flights bought and the place to stay. But because Talan became so ill we had to cancel his wish trip to Alaska. It wasnt easy on any of us especially Talan. He wanted nothing more than to be able to go and to know his body couldnt do it crushed him. So one of the foundations asked if there was anything else he could use or want to do. Well as reality is, he needed a lift chair with vibration in it and heat. So the One wish foundation got him a nice lift chair. We cant thank them enough for their generosity in giving him something he needed. Ill post a picture of it soon. We are so thankful for foundations out there that help others needs. Thank you One Wish!
Talan went to the Dr last week and was given methods of choices he has to choose. NONE of them are easy and can make him really sick. A few of those choices are a feeding tube, but that will only take care of the stomach area and no meds to help the rest of the body. The one she would like to put him on can have a lot of side effects to it. It also will be a shot. If he chooses it she told him any fever, a sneeze, cough anything he has to head to the University of Utah ER and be checked out by her. It is more of an invasive drug than what he is getting now. She says the one he is on now is not making him better its making him worse. Quality of life sleeping all the time is not working for her or him. So he is contemplating his decisions of what to do. He keeps telling us he isnt going to be here for much longer whatever that means? It could be a year or sooner or later we just dont know. It is very hard as a parent to watch your child suffer and you are helpless, feel lonely, its trying, how many episodes can you watch without your heart aching for them? The past couple of days he's started to retain water again and losing bodily functions he cant control. His oral topical steroid he's taking isnt doing its job and he cant stand to take it. So in turn he gets to throw up the most slimy vomit that even makes me sick. I have to help him, and sometimes it clogs everything up. Sorry for the up close and personal TMI but unless you see it or hear it you just dont get it. HE IS SO SICK, it makes me so sad. This is why I dont keep the blog up to date better because I get to emotional writing it. But here I tell it how it is.
 Please keep us in your prayers, my health isnt doing very well right now either and its making it harder for me to care for Talan. But I will NEVER GIVE UP, that is something we don't do around here is give up! Keep on keepin on......
Thank you for all of your love and support you give our family, we feel your love and prayers. We couldn't get through all of this without all of you out there cheering us on! Much love to you all! Talans' mom (Jen)

Monday, March 13, 2017

Never Give Up....

Just a quick update on Talan. In the past few months he has actually been diagnosed with HES (Hyper Eosinophilia Syndrome) this attacks his tissues also and turns them hard to, and can make you very sick and especially nauseous all of the time. He is affected everywhere in his body with it. His stomach and especially is lungs are affected. He recently had a CT scan that showed he has eosinophil pneumonia. This means it is turning his lungs hard and he has widespread air trapping in his lungs. He says it feels like he his breathing through a straw. He is on 5 liters of oxygen full time and has a hard time getting around. Most of his time is spent gaming on xbox live with his buddies from around the world. They have no idea the impact they have on him. They are his lifeline. Talan struggles daily to breathe, to eat, to get around, and sleeping. He is so miserable but makes the best of his situation. Some of the pictures above are to show you how his body just gains weight and he cant control it and as fast as he gains it the faster it goes hard.
Talan's eating has started to become and issue a recent endo scope has been done and he is turning hard all the way through the digestive tract and its hard to swallow. He has high amounts of eosinophils eating away at his stomach. We are in the process of getting him approved through insurance infusions to help his disease slow down. It is called interluekin 5, but its not promised to help him. IF not he will be eventually looking at a feeding tube in the near future.
Our time is spent a lot at the Dr and no it is not fun and he hates nothing more than to have to go. I cant blame him at all.
Today Talans' dad Stan was able to meet with President Donald Trump for a health care briefing at the White House. He represented Utah, our son and all those affected by our health care system. Thank you to Stan, Talans' dad for going and letting his voice be heard on rare diseases! Watch Stan talking with President Trump at this link:

Tonight on channel 5, KSL Talans story will be updated on the 6:30 news cast. I help advocate for rare diseases through Utah Rare and Im on the advisory board for RUN rare and undiagnosed diseases. Without the help of the rare community I would be lost. Its such a lonely world out there when your affected by a rare disease. Please know there are so many others of you out there that feel alone there is help, just reach out to me and I will help you find support groups. Talan has a facebook page called Talans fight-never give up. It should be posted here on his blog. Watch the KSL video at this link:

Last and not least Talan has a dream to go on a fishing trip to Alaska, we are in the process of applying for his wish to come true. It is very hard for Talan to travel anymore and we would love to help him have his wish come true before it gets to a point he cannot do it anymore. He is about there. Please keep Talan in your prayers, he could use them to fight his daily battles!
Thank you to Sandy at channel 5 KSL news for doing his story and following him on his journey battling for his life!
Love always,
Talans Mom, Jen