Home Again

Posted on June 9, 2012 by Ty_Wags

I hope everyone is having a nice weekend. Just wanted to give a quick update and let you all know that I’m out of the hospital and back home.

It’s been a tough couple of months, and to be honest, I’m getting really tired of this. I want my life back. I want my body back. I want this to be over…and yet, as rough as this has been, I realize how much worse it could be, and how fortunate I am in so many regards. It’s a very strange place that I’m in mentally and emotionally. I’m just trying to focus on whats in front of me and try not to get ahead of myself.

They sent me home with a LOT of IV medication. I’m on four different antibiotics, each with a different schedule and a slightly different method for infusion. It’s a lot to manage, and will basically be my full-time job for the next month while we make sure that the bacteria in my lungs is dead and gone. As for chemo, according to my doctor, I’ve seen my last round of Hyper C-VAD. It’s an intense regimen, and after six rounds, my body has had enough. I will have more chemo, but the drugs and dosage is still TBD. For now, the focus is on beating the pneumonia–which we will.

Thanks as always for your love and support. It helps more than you know.
–T

Team in Training

Posted on May 31, 2012 by nashi

For as much as we are Team Tyler, I have started to realize in the last several weeks how we are part of a much larger team. As we meet and chat with fellow patients and families in the Blood and Marrow Transplant ward, it becomes evident that our stories often intersect, and we are all rooted in the same fight. I have learned that what we do know, we share, and it is often tremendous help in our personal battles. I have also learned, that as a unified Team against cancer, we really do not know that much. Even small strides in cancer therapy research are giant improvements in our understanding of this disease and treatment. That being said, several people have asked how they can help with Team Tyler, such as donations for our bracelets. I would like to extend an opportunity for us to help with a bigger picture, the war on cancer.

Continue reading →

Treatment Update: Day 168

Posted on May 29, 2012 by nashi

Results are in from the Bronchoscopy of last Thursday. Besides the pseudomonas bacteria that we already knew about, there is nothing else showing up from Tyler’s lungs.

Although the test results are good news, Ty is still in a rough spot. He said this is harder than he could have ever imagined. The pneumonia has left cavities in his lungs and he is so congested that he can barely sit up out of bed. He is on oxygen, either with a nasal canula or an over the mouth mask. Walking five feet to the bathroom is a big challenge. The docs think this case of pneumonia will take months, not weeks, to recover from.

Besides the challenges, Tyler is making steady improvements daily. The fevers are decreasing in temperature and frequency. Although they did not detect a fungus, he is on a general anti-fungal, which they are still deciding how long he should be taking without a known infection. Right now Ty’s focus is on trying to regain breathing strength so he can come off oxygen.

Treatment Update: Day 163

Posted on May 24, 2012 by nashi

Ty had the bronchoscopy under general anesthesia today at 10:30 am. The procedure was deemed a success, as the pulmonologist was able to obtain 4 biopsy samples and a wash sample of the lung. However, the procedure caused a stir-up in the lungs, releasing bacteria and sending Ty into fever. This was to be expected, as the body responds to the sudden surge of bacteria, possibly into the bloodstream. Hopefully, as this stirred-up bacteria gets hit with antibiotic, the fever and rigors will subside. We will find out results of the bronchoscopy in a couple days.

Treatment Update: Day 162

Posted on May 23, 2012 by nashi

Thanks to everyone for their love and support.
Tyler’s fevers have subsided for over 24 hours now. This is a good sign that the most recent antibiotics are kicking in. He is scheduled for a bronchoscopy tomorrow at 10 am, which we hope will rule out the possibility of additional infection in his lungs. He is out of quarantine and was able to go for a walk outside today. Overall, his symptoms seem to be improving steadily.

Treatment Update: Day 161

Posted on May 22, 2012 by nashi

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 160

Posted on May 20, 2012 by GoodKarme

Tyler spiked a fever early this morning, and he’s now back in 3 West at the UCSD Hospital. After an x-ray this morning, they determined the pneumonia has worsened in his right lung. His medical team says it’s likely that the pseudomonas (the pneumonia bug) is resistant to the antibiotics, so they are switching him to an antibiotic that can be inhaled; the idea being that it will directly target the lung tissue. Apparently, this isn’t something new to the team, and there are other medications that can be used.

I’m glad that both our parents are out there with Tyler… Tasha continues to amaze me with her grace, love and uplifting spirit.

As always, positive thoughts, prayers, energy, and uplifting messages are warmly welcomed.

Love from Kansas City,

Leigh

Treatment Update: Day 154

Posted on May 14, 2012 by nashi

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

Posted on May 12, 2012 by nashi

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

Posted on May 9, 2012 by nashi

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. 🙂