Are you serious?

We received an email today from the trail coordinator, Travis, who communicates with the drug company regarding Bryon's treatment protocol. He said the drug people were pleased with the MRI results from two weeks ago, but they wold like a confirmation of it's results. This means on Bryon's week off of treatment he gets to go to SLC for a second MRI (that lasts only about an hour). That's nice and everything, but who is going to pay for the scan? OH RIGHT! I forgot...we do. Who is going to pay for the gas to get there? We will. Thanks to a change of insurance companies, University of Utah is now out of our network too. Yes, they cover some expenses, but if it is not medically relevant then we get the full bill. I guess every miracle has it's price. I'd rather pay for it the rest of my life as long as Bryon is in it with me.

F.Y.I.

Here is some of the information I was able to scan on to the blog. More MRI's will follow as they become available.



The above MRI shows Bryon's head in August 2008 while under growing radiation therapy in preparation to take the oral chemotherapy drug called Temodar. It was the easiest form of chemo and the one with the least amount of side effects, but also showed very ineffective on treating the tumor. Bryon would have surgery to remove the tumor in January 2009 after it re-grew to a size just larger than a quarter. The tumor has been outlined in black. You are viewing his head from the back, and you can see how far up the tumor had to grow to reach his skull.

This is the previous MRI that the drug company was using as a base to compare how much the tumor would change every eight weeks. This was the first time the tumor reacted to the MPC (the acronym for the trial drug) and had showed significant reduction in size. Shape of the tumor is never consistent, but general location has stayed the same.

What is a glioblastoma anyway?

Glioblastoma multiforme (GBM) is the most common and most aggressive type of primary brain tumor in humans, involving glial cells and accounting for 52% of all parenchymal brain tumor cases and 20% of all intracranial tumors. Despite being the most prevalent form of primary brain tumor, GBMs occur in only 2–3 cases per 100,000 people in Europe and North America. According to the WHO classification of the tumors of the central nervous system‎, the standard name for this brain tumor is "glioblastoma"; it presents two variants: giant cell glioblastoma and gliosarcoma. Glioblastomas are also an important brain tumor of the canine, and research is ongoing to use this as a model for developing treatments in humans.^[1] Treatment can involve chemotherapy, radiation radiosurgery, corticosteroids, antiangiogenic therapy, and surgery. ^[2]

Glioblastoma has a very poor prognosis, despite multimodality treatment consisting of open craniotomy with surgical resection of as much of the tumor as possible, followed by concurrent or sequential chemoradiotherapy, antiangiogenic therapy with bevacizumab, gamma knife radiosurgery, and symptomatic care with corticosteroids. Other than the brainstem gliomas, it has the worst prognosis of any CNS malignancy

Oh, by the way...

Bryon had a clean MRI yesterday. First time in 2 years. No biggie.



CONGRATS BRYON!! WE LOVE YOU SO MUCH!!


MRI series and info coming soon (we hope) so stayed tuned.

Computer Genius Wanted

I am so psyched about getting Bryon MRI's on the blog. I have a whole string of them that I would like to put on here for everyone, but I hit a few bumps right before I hit the brick wall. First off, my scanner, that I have only used once in it's entire existence, has died prematurely. No problem I have found there are other people who are willing to lend me their equipment. However, the MRI discs have special programs on them that do not want me to share the photos, so we are trying to print the photos out and scan them back into the computer...the discs didn't like that either. Maybe it was my email? my computer? or just me in general, but I know this can be done. Does anyone have any clue as to how to help me accomplish this?

February 3, 2010

It has been some time since the last post, but always keep in mind that no news is good news.

Bryon's chemo cycle started over again this past Monday, and we happen to find out some interesting news by trial and error. Bryon has been complaining that he feels more yucky than usual on his double chemo week. It is to be expected, but not when you have the best anti nausea medicine available. Turns out, it is in fact the anti nausea pills that are causing him to feel crappy. Not that he would like to try the alternative of going without them, but it is nice to know cause and effect. We have also learned Bryon is now becoming allergic to the MRI contrast. When conducting the last MRI, the process was interrupted when Bryon evacuated the contents of his stomach on to the floor (up chucked). No big deal, there are other contrasts to try, put one done for now.

As Spring is not quickly approaching, we find ourselves swimming in a pool of redundancy. Cabin fever has swept over us like a plague. Any kind of sunshine we can soak up gives minor relief. It is not that we don't have things to do, but rather we just don't want to do them. Several friends and family members have express their own concerns about their fever issues. It is nice to know that no one is suffering alone. Plenty of house work and unfinished projects are all around us. We may just have to buckle down and get it done. Then everything would be completed and we really would have reason to complain.

The next post is pending on my ability to run a scanner. I have a few MRI's to show off and even the actual measurements of the tumors growth pattern. Cross your fingers that I am able to work out this technical conundrum.

JANUARY 2010!!

Holy Crap! It is a new year! Bryon and I have the same old schedule as always and I am so excited! For the first time in almost 2 years we can say with some certainty that we can plan out our lives past next week. Bryon is feeling crappy from his chemo yesterday, but I am feeling recharged and ready to return to some old habits. I feel like returning to the gym and de-stressing in the hot tub!

We have decided we will need something to do this year instead of sitting around waiting for things to happen. I have arranged for Bryon and I to do some work at the Westside Nursery across the street from our house. There is no commute and it is sit down easy work so Bryon won't have to worry about working himself to death. There isn't any money in it, but I agreed to be paid in flowers and knowledge. Clint and Cheryl Buttars are happy to receive the help and are some of the nicest neighbors anyone could have.

So, now that the holidays are over we are trying to delay the bite of the gardening bug. I am more worried about it's affects on me, but I can tell Bryon wants to get out and feel useful again. Exercise doesn't hurt anyone, but the lack of it will kill you.

December 30, 2009

After a long year of travel and treatments, we have finally received the next best thing to a perfect year end event. Bryon's MRI showed his tumor has shrunk down to the smallest size since surgery in January. Dr. Jensen is very happy with the results and informed us that Bryon is the poster boy for his drug trial. Bryon is the longest lasting patient on the trial and currently is one of only two remaining candidates on the trial in Utah. Our trial coordinator, Travis, is going to email us the measurements they have been recording all year long and any other information regarding Bryon's participation in the trial. We are excited to share this news with everyone, since it has been a year of such uncertainty. When we receive all the information it will be posted for you to see how Bryon has progressed since surgery. You may even be able to compare MRI's from post surgery to the present. The MRI's are a real window into how incredible this news really is.

Bryon is very tired, but relieved to hear the good news. The cold weather wears him out very quickly and he is not very active with such temperatures looming outside. He does want to express his gratitude to all of his friends, neighbors and family memebers who helped us out over the last month.

Thank you to the neighbors who visited and kept Bryon in touch with the outside world. You are the kind of people that make us feel welcome anywhere, anytime.

Thank you to family for always being a beam of support and a light to reality when things get foggy. From Sunday dinners to extended phone calls, family is where the love begins.

The whole Gundersen family wishes to extend a huge hug of appreciation to Bryon's co-workers at Schreiber Foods. The volunteers from Schreiber's came to our home and spent much of their valuable time fixing and mending the basement of our home. It is now a comfortable place to be and easier to maintain. Although they are not finished, the projects and kind gestures have meant the world to us. Even though Bryon has completed his speech therapy, he is speechless when is comes to recalling all of the kindness that has been shown to him and his family.

We hope everyone had a Merry Christmas and we wish you all the happiest of times in 2010.

December 27, 2009

Nothing new to report other than we survived the holidays. Bryon is looking forward to a trip to Salt Lake on Tuesday for an end of the year MRI. We requested a clean image, but we will have to wait and see what the doctor has to say. Hope you all had a very Merry Christmas and that your New Year will bring great things.

December 8, 2009

Holy cow, is it December already?! Well, I think a quick update is in order. Bryon did finally finish his speech therapy, and was given an open invitation to sharpen his skills at the USU speech institute anytime in the future. He met all of his goals and has improved by 80% or more in most categories. There was only one area where he was improved by 76%, but that too exceeded our expectations.

Bryon is able to visit Schreiber's occasionally and enjoys seeing his work buddies. You know you have a good job when everyone you work with becomes your friend, even when your not at work. He misses the job, but admits that being able to improve his speech and fine motor skills was more important. Bryon is still unable to drive, even with his improvements, his attention span is still not where is should be. In a few months he will take a driving test in Salt Lake, it will tell him what he will need to work on to become a safer driver.

As of Monday Bryon started another chemo cycle. It is the same old story as usual, we are pretty used to it by now. The holiday season is fast approaching and we are counting our blessings. The fact that we get to be together every day, and not just on the weekends or holidays, is our greatest treasure. Having time to enjoy each others company and make memories with the girl's is more than Bryon can ask for. Now that we have some snow on the ground, our holiday is pretty much complete.

If the blog is not updated further down the road, Happy Holidays to everyone! Thanks for all your love and support all year round.

November 30, 2009

Sorry to be such a fuddy duddy, but you know how it is around the holidays. Bryon is doing well since his last round of treatment. He has a week off and it's a good thing. He needs time to get over another head cold. They seem to hit him harder than they used to, but he is such a trooper. He has done the dishes voluntarily the last tow days and was able to muster up the energy to enjoy an Aggie b-ball game. We have become home a little more home bound since starting a few projects on the house, but we don't mind. The projects keep us busy and it makes Bryon feel like his electrical knowledge has not gone to waste.

Bryon will be completing his speech and occupational therapy this week. After speaking with the therapists, Bryon is very pleased to announce he has achieved and even exceeded his goals set at the beginning of his therapy almost 8 weeks ago. He has improved in most areas by 80% or more and is so close to be considered 'independent' by hospital standards he can taste it with a tooth pick. Congratulations Bryon!

Bryon will start another round of chemo on Monday and have his last MRI of the year on December 29th. If all goes well, he should be able to continue on the clinical trial in 2010. Bryon wants to thank everyone for keeping in touch and sharing your thoughts with him. Believe it or not he does read the blog and is so glad to have this convenient connection with family and friends.

November 17, 2009

Treatment went great this week. We had good driving weather and it got done early in the afternoon. Bryon was able to go to the Point Restaurant and get his own lunch for a change, and then we headed out well before rush hour. We kept a steady pace all the way to Preston which gave us a total return travel time of two hours. We will not disclose how fast we were going, but we made it to the Health Department just as the H1N1 vaccines were starting. Bryon and I got through the line and headed to Dayton to pick up Anna. Then we drove to Weston to pick up Audrey. Both parents and children made the return trip to the Health Dept. to travel through the vaccination line a few more times. You can never be too safe when it comes to the flu.

Everything seems to be running as smoothly as possible. The only hiccup we have now is that both of the girl's are getting sick of staying at the same house for sleepovers when mom and dad leave. Anna is going to try a night at her friend Brinlee's house(thanks Jill!), and Audrey's sleep over location is yet to be decided. I am glad that is the only thing I have to worry about when I take Bryon to SLC.

Thanks for reading and for all of your continued support.

Apron for Auction

This darling apron is handmade and comes with two oven mits! Bidding starts at $15.
Thanks, Ashley M. for the donation.

November 10, 2009

Here is a quick update on Bryon since last week. He has started a new cycle of chemotherapy and is feeling the side effects as we speak. He is tired and worn out, but happy to take his antinausea medications. We are looking forward to the next treatment since it is much shorter and not near as difficult to endure.
Bryon wants to attempt some pheasant hunting this week if we get some snow, we will have to wait and see. He has also mentioned how neat it would be to see Tran Siberian Orchestra in concert, but it might just be easier to hear it all in the comfort of our home on CD. The sounds of the season have begun and we are looking forward to decorating with tacky colored ribbons and gaudy figurines. Feel the joy.

and the survey says...

I love that line from Family Feud. I don't know why but it is kind of catchy...to me any way.

So, to make short of a long story this is what happened after the MRI. Dr. Jensen and Dr. Yuko as well as Travis the trial coordinator all met with us in the exam room. There was some complicated debate about whether or not Bryon was still eligible for the trial. However, thanks to our super hero Dr. Jensen, Bryon will be able to continue treatment on Monday. The scan showed a small decrease in the tumor size, about 2 mm to be exact. This is extremely good news considering we saw growth in the previous scan. Dr. Jensen is going to meet with the drug company on Friday and fight for Bryon to stay in the trial. He strongly opposes the method being used to calculate the tumor growth. He says it is counter productive and not medically relevant to what is really going on. Thank you Dr. Jensen for fighting for Bryon.

Treatment begins again on Monday and the next MRI is scheduled for December 29th. Kind of like deja vu really, since the last time we got bad news it was the same date one year ago. Things are looking good and we'll keep on truck'in.

MRI Day!

Not that we are super excited to have another MRI, it is actually quite stressful, but at least we will know what's been going on. Bryon suffers silently most of the time since he has a hard time describing things in words. He has manged to tell me about his headaches the last few weeks. It may be nothing, but it is not like this man to have pain between the ears. I firmly believe that steel head fishing was good therapy for him, even though we all came home tired and ornery. We will go to Salt Lake on Tuesday, November 3 to have a scan and shortly after we will review the scan with Dr. Jensen.

Just a re-cap: If the tumor has grown 20% or more he is no longer eligible for the trial and will have to be referred to other methods of treatment. If the tumor is significantly larger (whatever size significant means.) surgery is always the best medicine. Thank heaven and prayers that we have seen little to no growth on the scans since surgery in January.

An update will be posted as soon as Bryon gets home from his appointments.