Summer Concert Event

Who: Stay For The Summer & The Side Kicks

What: Benefit party and social for Kris Cole

Where: 293 S. 2nd E. Weston, ID

When: July 10, 2010

6:00pm for food
7:30pm for the concert

All this can be yours with a donation to the Kris Cole 'Fight the Fight' Fund.

Bring yourself a drink, a blanket, and your wallet. This is going to be a hell of a good time while raising money for Kris. Look forward to dutch oven potatoes and ribs and brisket while they last. You may bring your own meat since there will be a grill available. If you can't make it to the shin dig but would like to donate, please email Sara at sarakay@plmw.com or call 208-747-3907. We still need side dishes(green salad would be fine), plates, utensils, cups, beverage dispensers, and more meat for cooking.

Younger (teenage) participants are invited since the music being performed serves more to their tastes. I describe it as punk rock, but the drummer said it is more "edgy" than that. Whatever that means. There may be an acoustic session provided by members of Stay For the Summer if I can talk them into it. Please invite anyone and everyone so this can be a success.

End of an Era

Bryon had his routine MRI this week. It was relatively uneventful...with the exception that they have declared him cancer free. The doctor stated that the drug trial is no longer necessary at this time due the fact that there is no tumor to treat. Bryon needs to be seen every two months for MRI's and checkups, but he has been cleared for take off on the runway to remission.

On a side note: Now that Bryon is able to concentrate better on other things we would like to once again extend an invitation to EVERYONE (and their unruly friends) to the benefit concert happening on July 10th in Weston, ID. It will benefit Kris Cole fight his own personal battle with his tumor. Food will be provided as well as entertainment by Stay For The Summer for those who come to donate, if you just come to rock out that's OK too...I guess.

A mass invite will go out when the event is closer, but in the mean time if you would like to donate a dutch oven full of potatoes, green salad, meat for smoking or grilling, or money for food that would be greatly appreciated. Please email Sara at sarakay@plmw.com.

Benefit Concert & Social

Great News!! We are throwing a benefit party for Kris Cole! The party location will be given as soon as final arrangements have been made, but we are going to have food, conversation and even a band. Can't beat that, can you? Cache Valley's very own local group, Stay For The Summer, will be performing for your listening pleasure, and food will be served. How much food is yet to be decided, but please plan on attending the concert and donating some funds for Kris so he can continue his cancer treatments! ROCK ON!!

MRI Series

I have finally got the hang of the MRI discs given to me about a month ago. These pictures are the series of MRI's sent in to the drug company for review and ultimate determination of their drugs effectiveness against glioblastoma tumors a.k.a. the results of poster boy Bryon Gundersen.

I will do my best to explain each photo, but no guarantees you will all be able to see what we see.
These first two pictures are from January 16, 2009 or the day of the second surgery. These are post operation pictures so all you can really see is the hole where the tumor was and the chemo wafers that were placed directly on remaining tumor tissue.(those are the little black lines you can see.)

This second photo I put in just to give you an idea of how deep they had to go to get out as much tumor as possible. It is the darker gray smudge on the right side of the photo the extends from the top of the brain, and goes almost all the way down to the brain stem, or the black spot at the bottom.

In March, we had an MRI to start the drug trial. The chemo wafers have dissolved and done a nice job at keeping the tumor nice and small. All you can see now is the hole where the tumor once was and an area of fluid that fills the void.(that would be the big black spot on the thing that looks like a brain.) All the scans from here down are viewing from the top of Bryon's head.

In May, the MRI showed some growth around the void left from surgery. Tumor cells light up with the contrast material they gave Bryon before the MRI. Any tumor growth you see will be the lighter ring around what used to be just a black space. You can see it is growing almost all the way around the area.

I messed up on this one, but you can see how the tumor had grown a bit between May and July. Again, the tumor is the lighter material you can see in the middle.

OK, so I messed up on September's MRI also, but again you can see what they were looking at. This was the largest the tumor got after surgery in 2009, at 23.4 mm the doctor was beginning to get a little nervous.

November, we held our breath. Not much change in size this time, but it was still borderline. If the tumor had grown much more than this Bryon would have been kicked out of the trial and forced to try other avenues of treatment.

December rolled around and we were preparing for some bad news. To our surprise and relief the tumor had actually shown some reduction. Exact measurements are not available, but what a relief to know we weren't headed for surgery again for the New Year.

February was significant! The radiologist was nice enough to point out where the tumor was on this scan. Obvious reduction and it was really exciting to just about everyone involved. The arrow points to a little dot that looks like a pimple...to me anyway.

So, from this point on I have no more pictures, but there is nothing to see in them anyway. Bryon's MRI's have shown no growth and the doctor feels there is absolutely no mass anymore. It wouldn't be much fun to look at a black hole in someone's brain now would it? Of course the doctor's official opinion is that there is some tumor still there, but he is definitely blown away by the progress made by Bryon and this drug trial. As for the drug company, they have no idea what to do at this point. They have not had anyone with this type of success, therefore they never considered what to do when there was no longer any tumor to treat. A conference is being held to discuss what to do with Bryon, but treatment continues till the experts can figure out what is best.

What do we do now?

For awhile now we have been telling you how great Bryon is doing and that things are continuing as normal. We had our eight week MRI this past Monday and stayed overnight to see the Dr. on Tuesday.

After viewing the slides Dr. Jensen just chuckled and said "Exactly what am I supposed to measure? There is nothing there! I have never seen anything like this before."

We asked a few questions about Bryon's current medications and he has been instructed to stop taking his seizure medication, as a seizure is most unlikely in his current condition. That type of medication makes a person feel very "weird" as Bryon puts it, but really any drug could do that. He is very excited that he has one less drug on the menu.

I dared to ask the question about when will we take Bryon off the medication to see if the tumor is truly gone? Dr. Jensen admitted that no matter how awesome the results are, a person cannot be on chemo forever. He is going to discuss it with the drug company and see what they want to do. He is also going to press that if the tumor comes back, Bryon must be able to restart the treatments. We felt it was a reasonable proposal since it would really test the drugs capabilities. Regular chemo treatments are generally done for one year and Bryon is now a good month into the second year of the same treatment. Keep in mind, also, that remission is not possible without going ten years without re-occurrence after treatment. That's a long time for such an aggressive cancer.

In the previous post I mentioned that we would like all readers to list names of cancer victims. Unfortunately, we have another one to add to the pile. Bryon's 1st cousin and good friend was recently diagnosed with melanoma. It was one of those bad moles that we all ignore, and he was sent to the Huntsman Center on Monday and Tuesday for tests. Even though he may be out of the woods, the doctor he visited suggested that the entire Jacobson family (Bryon's mother's side) get a check up. Bryon has had two uncles, his mother, grandmother, and now his cousin with some type of cancer. Let this be a friendly reminder that even though some cancers are not genetic, you may be in a family that is prone to cancer in general.

What a remarkable brain you have!

Here is some 'for fun' news that we received on Monday. The drug company is having a conference to talk about their trial drugs awesomeness with other health care professionals. The clinical trial patients files and MRI's will be presented for many doctors and researchers, just to show off how great it is doing in phases I and II. Bryon's MRI is going to be front and center since he has shown the most progress in reducing tumor size and increased brain function. His name will not be mentioned, but he is the official poster brain at this conference.

On the way home yesterday, Bryon mentioned he had just drank the worst Coke he had ever had. The chemo is apparently getting to him a bit, and it isn't that surprising after being on it for the past year. His body is adjusting to it well now so his weight loss is not as dramatic as it used to be, and he can bounce back quite quickly when his white cell counts are not too low. His counts are lower this week, but not terrible, so he is up and moving while fighting the fatigue.

In my next post I hope to start up the online auction as mentioned in previous posts. Please tell as many people as you can about this blog so we can get some major support for our friends.

Do unto others as you would have done to you. Cancer is a continuous battle and no one should have to suffer from it's terrible tolls on income and mental and physical strain. Prayers are always welcome. If you know anyone who is fighting cancer, has passed away from cancer, or has managed to beat their cancer please leave their name in the comments for us so that we may forward prayers to them as well.

NEW TOPICS!

I know it has been way too long since I gave you an update, but you'll be happy to know everything is smoothing out quite nicely. The second MRI was no different than the first, and the drug company paid for it along with an echo cardiogram that is required yearly. Treatment continues and Bryon feels like maybe he is ready to take on household responsibilities. I am grateful for that since I have been begging him to let me get a job for the last two years and he has finally granted my request. I turned in an application today and was told that I was more than likely to be hired on graveyard at Schreiber Foods. HURRAY FOR HEALTH BENEFITS!!

Our predicament now is that Bryon still has to go to SLC on Mondays for treatment. If I get the graveyard shift I will be able to take him, but was wondering if we could get any volunteers to to help out if needed? We have wonderful family members who said I should go ahead and get the job and we'll work the rest out later. It is now officially later, for me anyway, so if you feel you need to get out of town on someone else's dime and car let me know.

AUCTION NOTICE!!

There will be no more auction items put out for Bryon's cause. We feel that we are no longer the ones in most need of help and would like to use the online auction and remaining items to better serve a friend who is just starting the same journey as Bryon. Kris Cole is 19 years old and has recently been diagnosed with a stage 4 glioblastoma tumor. He has had one surgery and is currently undergoing radiation therapy. When the radiation is complete, he will have a month off and then start a clinical drug trial at McKay Dee Hospital in Ogden, UT. Anything auctioned on this blog will go directly to his travel expenses and needs during this difficult time. I also want everyone to know you can donate $5.00 at Hansen's Glass & Paint store in Preston, ID and receive a black bracelet that says'Fight The Fight KC #24' on it. It is an awesome way to show your support for all cancer patients who are fighting for their lives. If you have any items you would like to donate please email me or leave a comment on this post. Thanks for everything, and stay tuned for further updates on Bryon and Kris.

sarakay@plmw.com

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.