About nashi

Half scientist, half artist. One whole lotta sass.

Treatment Update: Day 161

After a great and long day of deliberation yesterday, the specialty team following Tyler’s case has come to one agreement: they are not confident they know the full story of his current state.

His situation is getting somewhat complex. Yes, he has bacterial pneumonia, that is showing up as ‘worse’ in his most recent ct scan. Yes, he has tested with in vitro resistance to the latest slew of antibiotics he has been taking. Yes, he did have several cavities in his lungs burst and show damage from his last hospital escapade. Yes, it is possible the fever is still the pneumonia healing. But. What if it’s not just that?

Its enough of a lingering question to make the team want to conduct another bronchoscopy this week. Following the nightmare of the first procedure, this was a tough decision. For those of you who don’t know, Tyler ‘woke up’ in the middle of the procedure, with a tube down his throat. This is the kind of thing they show on TV, patients able to feel procedures and unable to communicate. They increased sedation and wreaked havoc on his liver that was already in a compromised state. Due to his inflammation and movement, the bronchoscopy was deemed ‘unsuccessful’, they were not able to obtain a good sample. The result was traumatic to say the least. Therefore, a second bronchoscopy is a big decision. It became somewhat easy to consent to after hearing that an undiagnosed hidden fungal infection could be devastating. This time the attending pulmonary doctor will perform the procedure and he will be under full general anesthesia so they can get an ideal sample.

In the meantime, he is trying new antibiotics to calm the bacteria while he waits for the bronchoscopy on Thursday, possibly.

He is still in quarantine until the virus tests are revealed tomorrow. He can have visitors but they must fully gown up before entering his room.

Treatment Update: Day 154

Tyler has left the hospital. Let the healing resume. Complications were determined to be from combination of lung damage from severe pneumonia and low platelet levels from being knocked so low from last chemo. Next chemo start is tbd. He is feeling better every day and gaining strength.

Treatment Update: Day 152

Ty had to go to the ER last night after coughing up blood and running a low grade fever. He had just received a blood transfusion and might have had a slight reaction to the blood. This, in combination with declining platelet levels may be the cause. He received platelets in the ER early this morning and was transferred to the cancer ward to receive more blood and undergo further testing to eliminate the sources of other complications. Let’s cross our fingers for a Very short hospital rendezvous

Home is where the lung healing is

Ty has been released from the hospital. He is no longer neutropenic, his fevers have stopped for the last few days, and he is left with pneumonia to fight. His antibiotic load is still quite intense and he will have a home nurse to help administer and be hooked up to an IV pump. Jim, aka Dad, aka Gentleman Jim will arrive tonight so Ty will have an additional nurse. Next round of chemo will probably be delayed a few weeks while he recovers from the pneumonia. The pneumonia is still quite painful, as Tyler has just recently acquired an immature immune system and he also has a pre-existing asthma. He will have to take it nice and easy, and really focus on nutrition, exercise, and healing the lungs. 🙂

Treatment Update: Day 147

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

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

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…

Treatment Update: Day 135


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

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

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’: