The thrill of hope, a new and glorious morning

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The Gift Wrap Crusher

I have a dog. A unique and curious fellow, and although I try hard not to talk about him too much, I feel he is the best one to tell this story. He is the kind of dog that yelps when you touch his armpits, smiles when you frolic with him, and tries with all his might to be a real boy. His face has more expressions than mine, and we have become expert conversationalists. Perhaps it is in his genes, or perhaps it is in mine, but we are the peas and carrots of man and his dog.

A year ago this month, I had to wake my dog up in the middle of the night. He was sound asleep at my feet, but when I got the call that Tyler was sitting in the emergency room with an abnormal X-ray, I couldn’t move fast enough. I picked him up, quickly and suddenly. My little man screamed. He shook and he glared at me, and when I tried to pick him up again, he screamed once more. My heart was pounding and all I could think was, I still couldn’t move fast enough.  Continue reading

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One small step

I just had a chat with an old friend from college days. It could have been a conversation from September 13, 2004, but it was today – 2012. It is like we took one small step in our goals, and one giant step in our lifetimes. Some dreams are not yet realized, but we are still working at them, and we still have hope. We came to the conclusion that goals have to interlace with life as it unravels, twists and turns and all. This lifetime is a marathon and we can only set milestones to get us through to the end.

A couple members of Team Tyler embarked on their own ‘marathons’ in the past weeks. Both chose to raise money for the Leukemia and Lymphoma Society’s Team in Training, and both trained long and hard to reach personal goals in their feats.

Our Stunner of a Runner – Marjan!!!

My aunt Marjan completed her half marathon at Disneyland in killer time. We are very proud of her accomplishment, especially because I know bad knees run in the family. Marjan trained and ran like a champ (now I just need to work a little harder to convince her to get into cycling- haha!).

Lindsay the Triple Threat!!!

 

 

 

 

The newest green bracelet member of Team Tyler, our friend Lindsay, participated in the San Diego Tri Classic. Lindsay just started seriously cycling a few months ago, and we have had the pleasure of showing her a few San Diego roads. Lindsay hit her time goal on the minute and said it was due in part to her Team Tyler cheer squad.

Tyler hit a milestone last Monday. He completed his final session of radiation therapy and got to ring the Graduation Bell.

Tyler getting snapped in and lined up

Aside from finishing a major step in his treatment plan, this is also a momentous occasion because for exactly a week and three days more from today, Tyler will be free. No IV, no pills, no laser beams.

When Tyler and I would dream about getting him through the rough stages of chemo, we set the goal of taking a road trip. It was our light at the end of the tunnel as we were sitting in the cancer ward. As Tyler was hooked up to constant IVs, blood transfusions, pneumonia; very scary days, this was our light. So now that he has a break in his treatments, and his oncologist gave his blessing, we are off! Life happens, and we are weaving our goal in. This Saturday we will drive up the California coast- camping, biking, the works. A huge milestone for us, and we are beyond excited.

When we return in a week, Tyler will start chemo the next Monday. Until then, we have one free bird on our hands.

At the start of the Red Sea, Two winners watching a huge LOSS!

Good Legs

Ladies and Gentleman,

A quick update on Tyler’s status. I have great news and bad news. Great news is, Tyler beat the heck out of me on our bike ride this morning. Bad news is, Tyler beat the heck out of me on our bike ride this morning. Yes, I know what you’re thinking, I openly admit I was hoping Ty’s treatments would give me the edge. Not so much. Ladies and gentleman the speed racer is back in business!
Radiation has one more week left. So far, slight fatigue and a tiny bit of skin redness. Nothing a little afternoon nap doesn’t take care of.

Happy labor day weekend everyone! Stay safe and happy
❤ Natasha

Team Tyler – 4 legs are better than 2

Team Tyler lost a very special 4-legged friend last night. Sir Winston Churchill, my Aunt Monica and Brad’s giant bulldog passed, a very dedicated member of Team Tyler as you will see below. I would like to dedicate this post to our faithful friends that always support us, and love us unconditionally. I hope there are giant bones in doggie heaven, Winston.

Let Freedom Ring (in Tyler’s ears)

Happy Summer Team Tyler. A little update on the state of this union.

  • Ty has been out of the hospital and walking the walk of healing every day. His latest CT scan has shown significant improvements in the pneumonia. The cavitation has shrunk to about half its original size and the active infection is showing only in small amounts. The doctors estimate that 4 more weeks on double duty antibiotics should do the trick…speaking of antibiotics…
  • The most recent IV antibiotic that Tyler has been carrying around 24/7 in a ‘Freedom Pump’ man-satchel has just shown signs of an adverse immune reaction (just like the last one he was on). It causes an immune response that suppresses bone marrow production, which then causes white blood cells to drop – potentially leading to fevers and a debilitated immune system (the cause of Ty’s last hospital stay). Not what you want when you are fighting an infection. Good thing Ty was on top of his cell counts and caught this reaction before he ended up in the hospital again.
  • Ty is still suffering from tinnitus from a reaction to 1 or more of the antibiotics he has been on. This side effect had the potential to cause permanent hearing loss, but docs think it was caught in time and should heal eventually.
  • A new IV antibiotic will start tomorrow, this one should not cause bone marrow suppression but is not ideal because it didn’t do as well in in-vitro sensitivity. Hopefully there isn’t much infection left and it will do the trick!
  • The GREAT news is that Tyler has been getting back to a pretty normal life routine. He can go on long hikes, gained 11 pounds, has lots of hair, itching to get back on the bike, enjoyed a great time with cousins from Sac-town, about to enjoy a great time with college buddies. Plus, its Tour de France time. Besides the major medical issues – can’t complain too much!
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4th of July (not in the hospital- yesss!)

 

Team in Training

         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.

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Treatment Update: Day 163

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 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.

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. 🙂

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.