Bryon's Kryptonite

This week has gone very well for Bryon since his treatment on Monday. He admitted to feeling a bit yucky the first couple of days, but went to work none the less.

Tonight, as he prepared for work, he said he felt kind of sick. The doctor's told him to take anti nausea medication any time he felt the need. He was being a bit brave and took the pill only after he started feeling sick instead of before. The poor guy vomited on his work clothes on all over the kitchen floor. If that wasn't bad enough, he tried to call in sick to work and couldn't remember the number he was supposed to call. The numbers in the phone book were no good, so he looked up the numbers for a co-worker. He spoke with the lady of the house and found out his friend was already at work. Not thinking straight he forgot to ask for his friends cell phone number. With a little encouragement from Sara, Bryon called back to his friends wife and got the contact info he needed.

After much effort he finally got himself excused from work. Next, a shower and some toothpaste, and Bryon should feel a bit better by morning. Let's just hope this is the worst he will have to endure for this month.

Hurray for today!

Today, March 23, 2009, marked the first day of Bryon's clinical trial. The trial was conducted at the University Hospital and overseen by Dr. "can't remember the name." He was very nice and informative, but couldn't scare Bryon enough to make him forgo the treatment.

The weather was absolutely brutal, so to save some sleep and stress, Bryon and his wife stayed Sunday night in Salt Lake. The trip the next morning to the hospital was white out conditions, as a winter storm rolled over the state. They made it to their appointment on time, however, right at 7:30 AM.

Meals were provided by the hospital, as well as a bed for Sara to camp out on during the day. Treatment began after a sermon of side effects and and disclaimers. This would be the longest day of the treatment because of all the explanations and tests. The nurses ultimate goal was to have Bryon out by 7:00 PM.

Bryon received several ECG's and gave multiple ounces of blood throughout the day. They confirmed Bryon was anemic before the trial even started and warned him to eat his vegetables. It was not terribly concerning, since they went ahead with the experimental drug and the Carboplatin (chemo) anyway. MPC is what they referred to the trial drug as, and it took 4 hours to be pumped through Bryon's veins. Then, after drawing more blood, they pumped in the Carboplatin. No matter how fast the chemo goes in, Bryon still has a four hour waiting period to make sure he has no ill affects from the MPC. It made for a very long afternoon.

The good news was, during the final assessment, the doctor concluded Bryon handled both drugs extremely well. He said that however Bryon tolerated the drug in the next 24 hours, is probably how it will affect him throughout the rest of the trial. This process will happen two more times, minus the Carbotplatin, and then Bryon will go in for an MRI. They should be able to tell by then if it is working. This is a very exciting time and we hope Bryon's body will tolerate the drugs well enough for him to function. Going back work seems to have lifted his spirits, but he will have to be careful around others as he is more susceptible to illness while on this chemo.

Clinical Trial Pre-screening Day

Tuesday, March 17, 2009 Bryon went to Salt Lake City to have his health screen. It is required in order to qualify him for the clinical trial that starts on Monday. The whole process made for a long day though.

Bryon went to his first night of work since surgery Monday night. He stuck it out for 7 hours, then caved in and came home for two hours of sleep. His wife, Sara, woke him up and dragged him down to Salt Lake where the first appointment took place at the Imaging and Neuroscience building. He was very early, but anxious to get the process started. Another couple who was there, also dealing with brain tumor issues, kept Sara and Bryon company while they waited for their turn. Michael and Patrice Miller were kind enough to share their 10 years of experience with the Gundersen's which made the day seem a little brighter.

After the MRI, the next appointment was at the Cardiovascular Lab at the University Hospital. They were running about an hour late so, immediately they new Bryon would be late for his final appointment with the doctor. The lab tech was named Steve, and he conducted Bryon's echo cardiogram. He did not indicate anything was wrong with Bryon's heart and held a very pleasant conversation with them, since it took nearly 25 minutes to complete.

The final appointment was with Dr. Randy Jensen at the Huntsman Center. Bryon was the only one left besides two nurses and the clinical trial coordinator, Chris. Bryon was asked to give a few blood samples for testing, a urine sample, and participate in an EKG. All of the tests on his heart are to verify he is the best candidate for the trial, and that his heart was not weakened from previous chemo treatments. After all the poking and prodding, the doctor came in for a visit. He was very impressed with the days MRI. He said it was best you could have to start the clinical trial with. He also stated that Bryon's involuntary leg tremors were actually micro seizures from continued healing in the brain. Bryon also has intermediate problems with vision in his left eye, but that too would go away as things start to heal up.

Overall, the day gave positive results and Bryon will make the journey, once again, on Monday to start his new therapy. We wish you the best of luck Bryon, and hope we can give you all the support you need to continue through your adventure.

In reference to the previous post, the auction is being done by cousin Christina. A few people have inquired as to what items will be needed for the auction. Please feel free to comment on this blog and ask questions. This is our best means for communication right now. Thanks again for your continued support.

Bryon's Story

In April 2008, Bryon suffered a seizure in the last hour of his graveyard shift at work. His concerned co-workers called for an ambulance to take him to Logan Regional Hospital, where he was taken to get a CT scan and blood work done. After his wife arrived, and the results were in, the ER doctor informed Bryon that he had a mass in his brain on the left frontal lobe. This most likely caused the seizure, and he immediately referred Bryon to a neurosurgeon at McKay Dee Hospital in Ogden, UT.

Dr. Winters ordered a contrast MRI that revealed a golf ball sized tumor and explained that surgery was the best option. The surgery was scheduled, and took place in Ogden Regional Hospital, about one week later. The scar was the shape of a horse shoe and held together with metal staples. Bryon’s face swelled with the increased amount of fluids, and he was taking steroids to try to reduce the swelling. The drugs made him short tempered and vicious towards his f amily. He even ripped a bathroom drawer a part when he couldn’t find his tooth brush.

The surgeon assured the family that the tumor, from what he could tell, was a stage 2 tumor and did not appear to be aggressive. There was also a small calcium deposit that had developed on top of the tumor. This was a good indicator that the tumor was not aggressive and that it had grown over a period of several years

rather than months. Some tumor matter was left behind during the surgery, since the doctor did not want to interfere with his patient’s speech or motor skill unless there was no other option. The pathology report would be the deciding factor when it came in. It didn’t take long, but about a week after surgery, the report was a stage two astrocytoma diagnosis. Since brain tumors are very difficult to diagnose, the tumor was sent to the University Hospital in Salt Lake City. There, a tumor board consisting of doctor’s practicing at the Huntsman Cancer Institute, gathered to discuss the pathology report. Their decision was a terminal diagnosis of a stage four, glioblastoma. An aggressive tumor that gives the patient a very short life expectancy without treatment, Bryon’s tumor was now a major threat to his life.

Once again, Bryon was referred to a new doctor. This time it was a Dr. Glantz at the Huntsman Center. This doctor was supposed to suggest and direct the next course of treatment which was radiation and chemotherapy. Before he made the definite decision to do these therapies, he referred Bryon to yet another doctor. Dr.Shrieve did not impress Bryon or his wife and they were extremely disappointed that no one would return their phone calls. When trying to get some idea of when treatment would start, the staff for Dr. Glantz became rude or totally unavailable. Needless to say Bryon had to find himself another doctor.

By this time, it was about a month and half since surgery and no treatment had been done on Bryon’s tumor. Feeling desperate, Bryon and his wife sought out a local oncologist at the Logan Cancer Treatment center in Logan, UT. This facility had just opened and Dr. Ben Jacobs was well known in the community. He was appalled to hear of the delay in treatment and without fail, got Bryon the coordination between doctors’s that he so desperately needed. Dr. Whipple was his radiation oncologist and directed the 6 weeks of radiation treatment, and Dr. Choucair from Intermountain Medical Center in Murray, UT directed the chemotherapy treatments. The chemotherapy was a pill called Temodar, and was taken everyday while on radiation. Then Bryon went on a cycle and only took the drug 5 days out of every month.

Treatment continued on through the fall and into the early part of winter. Bryon was healthy enough to go to work and support his family of a wife and two children. In December, he was scheduled to have a contrast MRI to see if any progress was being made. One week after Christmas, Bryon and his wife went to Dr. Choucair’s office and was told the chemo had been ineffective and the tumor had grown back. Surgery was the best option, until another treatment plan could be decided. At that point, without any further treatment Bryon was told he would have three months to live, and six months if his surgery was successful.

The second surgery happened in January 2009 at University Hospital under the direction of Dr. Randy Jensen. This surgeon was confident he could remove the entire tumor and place chemotherapy wafers in the remaining tumor bed to slow the progress of new growth. It was a success and the post surgery MRI showed all the residual tumor had been removed. Chemotherapy wafers take six to eight weeks to dissolve so no other treatment could be done until that time.

In the mean time, Bryon was recovering from his ordeal. His right side was greatly weakened and he had lost the ability to speak. While in the ICU, Bryon vomited from the anesthesia and due to steroids in his IV his blood pressure went through the roof. The first night was touch and go, but he made it through. After several more days of vomiting and not having any food twelve hours prior to surgery, Bryon’s sodium levels were dangerously low. Nurses put a feeding tube through his nose and fed him a high sodium puree until he was strong enough to eat on his own. Before leaving the ICU, Bryon managed to say the words ‘yes’ and ‘no’ which made communication of pain much easier on him. His entire stay in the hospital was 7 days.

Upon returning home Bryon endured 6 weeks of physical, speech, and occupational therapies to speed up his recovery process. Ironically, Friday March 13^th, Bryon graduated from his therapies and was released to return to work. At the time this post was written, Bryon had not yet gone back to work, but eagerly waits to see his friends and co-workers at Schreiber Foods in Logan, UT. He has been enrolled in a clinical trial at the University Hospital and will receive treatment once a week for a few weeks, then gets a one week break. The process will repeat itself until they know it is working or if he needs to find another course of treatment. Dr. Jensen feels this could make or break the one year life expectancy he has at this time.