Update on Trent- we found out that another nerve may have been cut- his Vegas nerve which could be why he can't keep everything down and his voice sounds like an old man . He has to go in for more testing and surgeries..... Hold on tight, here we go again...
First test is next Thursday, it is during outpatient surgery so he will be drugged, which means I get to go hang out at the hospital. Now that I am done with school,  I will have to find something else fun to do. He gets to have a small microchip put in to test the reflux and then he gets to swallow a tube and water at the same time... good luck with that. They are doing the test because he is going to have a Nissan, which means they will tie the top of the stomach around the esophagus , which will make it harder to throw up, but also harder to swallow, so if it isn't reflux caused by the surgery and is just from the vegas nerve cut, that would be horrific to do it because he wouldn't be able to swallow. If the vegas was cut that means his voice will never come back and he will have to get injections every three months until they can put a block in for a permanent solution. Fun times at the Coe house.

Update

I am so sorry I have been such a slacker with keeping up! I have been busy trying to get my schooling in and those that know me, know how I have OCD and have to have it done early and perfect. Trent has been doing good considering. We have our team of doctors and Trent's case was presented in a meeting because some of the doctors are stumped. They don't know why this mass was growing outside of a capsule because usually with Castleman's it grows within one. For this reason they were debating whether or not to do radiation . We won't be doing chemo because the Doctor was able to get the mass and taking the phrenic nerve he couldn't see it spread anywhere else in the body. At this time it looks like we will just keep getting CT scans and making sure it doesn't come back. It's frustrating when its so rare that the doctors are printing things they have found off of google to us, that I have already researched. If it wasn't for Trent's nerve being cut I think he would be feeling fine. However, he can't eat much or he throws it all up. He coughs constantly and sounds like he has some sickness. I am sure when we go into public people stare at him as if he needs to wear a mask or something! It has been hard seeing him cough so hard he is throwing up, One night he wasn't stopping and just like when I hear my kids get sick I jump out of bed and am there rubbing their back telling them it's ok. I did the same to Trent and then asked him later if that bugged him that I was in there when he was puking up his guts. Let's just say I am the type of friend that would hold your hair back as you puke, I think I get that from when I was little and my parents would come in and help me and so I do that for my kids. Trent has started going back to work because quiet frankly, he has to and you know how he can be stubborn, but I appreciate him because I don't have a job and he is doing everything he can even in his sickness to support us. We are trying to find some medications that can help him so he can eat, he has lost over 30 pounds since his first surgery 7 weeks ago. This looks like it will be our new normal for awhile. We are so grateful for all the help we have received and all the prayers. Who knows what the future holds, we just hope it's each other.

Writing on this blog has made me start writing on my family one! It's nice to see people are still out there using the blogs.

Yesterday, Trent went in for surgery and once he was dressed and had the IV in, his dr told us they had ordered the wrong medication so that we would have to wait or reschedule in the next four weeks. We had gotten there at 6:30 a.m. and by 2:00 they took him back for the hour procedure. He did really well, and he isn't allowed to talk at all for a week. I gave him a bell to ring if he needs me, and many times he rings the crap out of it. I keep thinking he is trying to be funny, but then there are times he really needs me ASAP. Point is I need to tell him the story of the "Boy Who Cried Wolf." We are hoping this will be a temporary boost to help his vocal cord. If it works, then by the time it wears off we are hoping it made improvments, if not then we may do it again until the year is up and we can do something more permanent. We go in to find out if we just need to do petscans every six months to make sure this mass doesn't come back or if we need other treatments on Monday.

Update

We now have a team of doctors working on Trent. I'm sure they are excited because its not everyday you get to work on someone rare;) jk. Anyways we do go in tomorrow to have a same day surgery to so a temp fix for his vocal cords. He still talks like a little old man, sounds like he has larengitis, and coughs so bad he pukes. He seriously sounds like he has some horrible flu bug but alas it isn't. Poor guy has lost 20 pounds already.

The Voice

The last two days have been filled with doctor visits. We saw that one of Trent's vocal cords isn't moving at all so he will need to go in for another surgery to try to temporarily help it. In a year if its not fixed then we can do something more permanent. Thanks for all your prayers. We see the oncologist here in a few weeks, otherwise nothing has changed in what we know thus far.

Rare creature

Update- We are still getting tests done, and seeing a bunch of different dr's this week so we don't have all the answers yet, but we found out Trent has something even more rare than thymoma . We are In the works of figuring out a treatment plan up at Huntsman Cancer Institute.

Trent has cancer. We find out more soon.

Today the anxiety has kicked in, and honestly I think a lot of it is due to the police officer that was killed here last night. Everywhere on my newsfeed I keep seeing this poor man and thinking about his family and I become obsessed and hope they are going to be ok. I can't watch the news ever because when I do I take the hardships to heart and I can't let it go. I empathize with them to a unhealthy degree, or in other words, I'm an empath.  I can't even imagine what his wife and kids are going through right now. My heart aches. Even yesterday I was getting frustrated over stupid little things the kids were doing. When in reality, they were just being kids and I have to realize they miss their parents and are worried about their dad. They were cute to come help take care of trent. Faith kept saying she was going to take care of him. She laid by him, and the other kids kept checking in on him. Hannah helped give him his medications.

The dr, called and told us Trent has a cancer that is even more rare than Thymoma. We have to do more testing to find out what treatment he needs. The waiting game is the hardest. The dr. is still optimistic but I think it sucked that it wasn't what we were hoping for. This type can easily turn into non Hodgkin's lymphoma because it is part of the lymph nodes. That's usually just medical mumbo jumbo and it's easier for me to tell people "Yes, Trent has cancer, we find out if he needs treatment soon." that makes sense and that's all I ever should've said in the updates because I confuse the crap out of people otherwise lol.


On Tuesday we have to go get more testing, and see a respiratory therapist, and an ENT for his voice.

Trent is already bored so I told him we could play LAST WORD. If looks could kill.....

In the meantime I am just going to stuff my face with m & m's... until I found that someone ate all of them except the red ones. (I am allergic to the red ones) someone's going to get their butt kicked. jk

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