Treatment Update: Day 147

Posted on May 7, 2012 by nashi

After a very rough weekend, Tyler has woken up this morning to come out of his foggy state. This is a huge relief and I cannot help but feel like this is the start of the upswing. His white count is up, hasn’t had a fever in days, and bilirubin, after spiking again yesterday, has come down slightly today.
Tyler had an array of visitors this past weekend, from his SD ‘aunts’ and Persian family, to his roomie Bones and Tao. All were a great uplift and spark for healing.
This has been a very physically painful last two weeks for Ty and I hope he gets some relief from the constant discomfort. Pneumonia is still haunting him and he thinks the bronchoscope stirred up havoc in his chest. It is still difficult to breath and he is on and off oxygen as needed.
Thank you all for the positive energy. Let’s now focus on getting him out of the hospital!

Ty a few days ago in Team Tyler colors

Yellow (no) Fever

Posted on May 4, 2012 by nashi

In true Team Tyler spirit, we have an unpredictable turn of events. Tyler is still at Thornton Hospital as an inpatient being treated with neutropenic pneumonia. His white blood cell count has been slowly creeping up and his fevers lessening. However, in a very strange twist, Tyler is yellow!

For the last 3 days, Ty has been very sleepy. Much like someone with narcolepsy, he would fall asleep while sitting up in a chair and immediately act like he was in a deep dream. He also stated that he felt like he was having conversations with people, who were not there when he would wake up. Two days ago we noticed the whites of his eyes were getting a yellow tinge. We figured it was the increase in medications and thought nothing of it. He had the bronchoscopy yesterday and underwent sedation, and today, he is still groggy and acting ‘funny’, think of the YouTube, ‘David After the Dentist’. His skin is also extremely yellow. As the self-proclaimed ‘BananaMan’, we were starting to wonder what was going on. As a neutropenic patient in a fragile state, we were also getting very concerned.

Today Tyler’s blood tests revealed very elevated levels of bilirubin – a pigment that comes from the breakdown of red blood cells. Bilirubin gets processed in the liver, and an excess means the liver is having issues and cannot metabolize the bilirubin, therefore there is an excess of bilirubin accumulating in the blood. In other words, liver function is now in question.

As of today, Ty’s liver does not show abnormalities under ultrasound, so no stones or visible defects. We were informed that one of the preventative anti-fungal medications Tyler was on is processed through the liver and has the potential to be liver damaging.

This medication was recently doubled in dosage…

The side effects of this medication are: hallucinations, drowsiness, jaundice…

Tyler was immediately removed from this anti-fungal today. He is seriously BananaMan yellow, and his demeanor is still ‘funny’. We are all hoping they found the culprit in the anti-fungal medication, but we will have to wait and see. One day at a time.

Thank you for your continued thoughts and well-wishes.

Treatment Update: Day 141

Posted on May 1, 2012 by nashi

Angels in the outfield?
Although Tyler has made huge strides in how he is feeling, I will be the first to admit that the last few days haven’t been any less scary than the few before them. In fact, things got pretty heavy when we realized that Ty has been over a week with fever and no resignation of the bacteria infesting his body.
I will spare the Team of the dramatic details, long story short…
We found out tonight that Tyler’s infection/cause of pneumonia is resistant to the specific antibiotic he was receiving. The pneumonia has now spread into both lungs and the bacteria is prevalent in the blood. Bad news.

Good news: thanks to a new crew of specialists on Team Tyler we have a quick change in antibiotics, much stronger and more targeted to the strain specific to Ty’s illness. They are confident that this is what he needs to make a full recovery. He will also undergo a bronchoscopy to make sure they are not missing additional invaders.
Good news: Tyler is otherwise kicking hard, we’ve got a slight bump in white cell count and a day spent with minimal fever. He’s discovered a new respect for ‘rest’, and how important sleep is to rebuild his systems.
Thank you for your prayers and well wishes, I think we got some extra help this week…

Quick Update

Posted on April 29, 2012 by Ty_Wags

Just wanted to keep everyone up to speed.
I’m still battling persistent, recurring fevers, which tells us that the infection hasn’t cleared yet. My breathing has been easier the past few days, and I’ve lost a lot of the fluid that I was retaining in my feet and ankles. We could really use some white cells to help fight, but unfortunately we haven’t seen any significant movement there yet–it can be a slow process.

Thanks for your continued love and support,
–T

The Waiting Game

Posted on April 27, 2012 by Ty_Wags

Greetings to the whole Team Tyler Family,

Why beat around the bush? I’m just gonna come out and say it: I am feeling noticeably better today. My breathing has become easier, chest tightness seems to have decreased, and I’m actually coughing some of this nasty stuff out of my body! I’ve still got some pain around my right ribcage, and an acute pain on my side at the base of my ribs when I cough. My headaches seem to have calmed a bit, so that’s encouraging.

Okley showing his support for Team Tyler. Asked for comment he said "We're starting a four-legged revolution for Tyler." With dogs already joining the movement in Colorado, Nebraska, and New York, he just might be right.

My White Cell Count has improved from an undetectable level of <;0.1 to 0.1. Although it may not seem like much, this is great news. It means my body is slowly beginning to produce infection fighting cells.

So basically we're playing the waiting game–waiting for the combination of antibiotics, anti-virals and my own (weakened but recovering) immune system to knock these bugs out of my body.

Next goal is to stop the fever. While my "fever curves" have been improving my body temperature still hasn't normalized–again, something which we would expect to see as my white count grows. The "bad news" if any, is that I'm battling three significant bugs at the same time, and it's just probably not going to be something that turns around completely overnight. Patience, then, is the lesson of they day, I suppose.

Leigh arrives this afternoon for a long weekend, so I'm excited to see her. Will keep you updated as the healing continues! Thank you for your ongoing thoughts and prayers–they give me and my family so much strength.

Lots of love,
–T

Treatment Update: Day 135

Posted on April 25, 2012 by nashi

Tyler post CT chest scan (just got back from the moon)

Tyler had a chest CT last night, which unfortunately shows that the pneumonia is much worse than the doctors thought from xrays. He will have a bronchoscopy in the next hour to test the actual lung area. Ty also just had a minor surgery to remove the portacath (the little alien-looking thing under his skin) from his chest in case that is a source of infection. So far, they have detected a bacteria in his blood and a viral infection. He is on antibiotic and antiviral IV meds and is still waiting on some more virus results. He is still in ‘quarantine’, confined to his room, until a few more blood-tests come back. There are so many immuno-supressed patients on the floor that they want to make sure Ty doesn’t spread infection that he doesn’t even know he has. Everyone–Doctors, nurses, Murt, and me must wear full protective gear when entering.

Treatment Update: Day 134

Posted on April 24, 2012 by nashi

Hello Team Tyler.
Ty is now out of ICU and moved to the cancer ward to continue recovery. Fevers still coming and going, pneumonia still alive and kicking. Good news is blood pressure and oxygen are stabilized enough to get him out of ICU. He looks much better and got out to walk a lap around the ward last night.
Thanks for all your thoughts and prayers.
Ty has one question for the Team: Why is no one laughing at the Shit Song???

Treatment Update: Day 132

Posted on April 22, 2012 by nashi

Ty burning up in the ICU

Quick update on Tyler’s progress with round 3B. Once again, the B cycle has proved to work its bite with a somewhat surprise attack. A week ago today, Tyler was released from the hospital after his 3B delivery and spend the week in top form. He was feeling strong and healthy, and we thought this B round may prove to be a little less vicious. As a HUGE surprise, early Saturday morning Tyler got hit with rigors and a fever that landed him in the ER. Within a few hours, infection fluid accumulated in his lungs and he developed severe pneumonia. His blood oxygen and blood pressure have both been low, and he remains in intensive care. Fevers are coming and going and he seems to be in some pain. He is currently on broad spectrum antibiotics, but as blood results come back in the next few days these will become more specific. Doctors said after a ‘dicey’ evening, he took a turn for the better this morning, and are hoping to see positive trends in recovery. He has already received blood and platelet transfusions and will probably need more in the next few days. Ty is in pretty good spirits and in full fight mode.

A personal note:
I had my 100 mi charity bike ride yesterday, the one Tyler has been coaching me for. I didn’t know Tyler was in the hospital until I reached the finish line and saw two missing faces from the crowd. I knew something was wrong, but held back the tears so I could say thank you to my friends and family that were waiting. He had texted me along the entire route, cheering me on and ‘coaching’ the entire way. Little did I know he was in the emergency room and ICU the entire time. Couldn’t have done it without him, and he didn’t want to tell me his status to make sure I finished the ride. Not only did I finish, but I kicked the 100 miles’ butt, thanks in huge part to Ty and his contagious competitive spirit.

Tyler would like to say hello to everyone, and include a link to his ‘anthem on days he feels like shit’:

A Daddy Wags-approved update

Posted on April 8, 2012 by GoodKarme

I realize that there are other “Daddy Wags” out there reading, but I’m referring to my dad, Jimbo “Daddy Wags” Wagner. He prefers things short, sweet (this term being used loosely) and to-the-point…

I was reminded this week that silence on the GoTeamTyler blogosphere leaves one to wonder if Tyler is doing ok or not… often leading one to the “worst-case-scenario” if you don’t have direct contact with the Moshirians or the Wagners. Thus, I thought a concise, bulleted (Jim Wagner-style) update would be appropriate. (The comments in parens are added Leigh-esque touches… I can’t resist):

Tyler and Natasha rode 70 miles yesterday. (seriously?! yes, seriously. Tasha is getting ready for a century ride to raise money for Diabetes & Lymphoma research)
Ty is in between A and B cycles. (He’ll start his “B-sandwich” next week… he has 2 B’s and 1 A cycle yet to go).
Per Ty, Tuesday was one of the best days he’s felt since starting treatment (WooHoo!)
Ty and Tasha will spend Easter with Tasha’s family out in SD. (My parents and I are back in “The Good Life” (Nebraska) for the holiday).
Murt (my mother) will head out to SD for his next round on Monday.

My dad would think anything over 5 bullet points is overkill… 😉

Happy Easter, all! Lots of love,

Leigh

Hats

Posted on March 23, 2012 by nashi

I’m about 85% into a book Tyler has lent me, Lance Armstrong’s War, not quite the war you might guess. It is a detailed account of Lance’s 2004 Tour de France journey. A war after beating cancer, after winning five other Tours. This is a detailed account of a struggle, that never quite seems to be a struggle for the hero of the story. A hero with superhuman strength and an uncanny ability to conceal his suffering. Although, if you read a little deeper, this is an epic struggle for that reason. One man’s battle, of which steepness can be measured by how effortless his triumph appears.

The climax of the story is not in the beginning, nor the end. The assembling of the ‘super team’, the winning of the Yellow Jersey; neither holds any weight to the middle of this saga: the struggle of the long road.

You see, there’s a competitive edge to the start of the race. Exhilaration from the task ahead, mental toughness setting roots, adrenaline from the new event. There’s competitive edge at the end of a race, the light at the end of a tunnel starts to shine. 5k away and you can here the crowd cheering, bells ringing, beer gardens pouring.

So how do you get through the middle?
Ask Lance. Or, ask Tyler.
Ladies and gentlemen, this part sucks. Coasting. Where you cannot see the start or the finish very clearly. When all you can use as fuel is the deepest, strongest will to triumph. This is the part of the race that separates the contenders from the pack, and this part of the race is hard, mentally and physically hard.

In the book, one of Lance’s greatest skills was his ability to hide his struggle. Stone faced and focused at all times, his race was won during each stage, not just the final finish line.

Tyler has been struggling to update this blog in the last week or so…
He is winning stages, but this one is difficult, and to this enemy- he is, and appears, strong. With superhuman strength he shocks me everyday with his urge and desire to stay as fit as possible. With his competitive drive he never lets on of his sufferings. He is a man who puts on a hat and you’d never know there was a single flaw in his body. This is a true hero.

Tyler has just finished round 3A and is now recovering at home.