What a big boy!!

To anyone who has not been in contact with Bryon the last two years, this news will seem rather odd. I am just so excited to report that Bryon recently made a HUGE breakthrough in his speech recovery!!

It happened on Wednesday morning before school when I was telling Anna to ride the right bus home after school. If she rode the normal bus, she would be home later and not be able to make it to gymnastics. Bryon was in the kitchen making breakfast and he made a quick addition to my speech at his mother's expense. Without waiting for the ball to drop he simply said "If you ride Granny's bus you'll never make it home."

My jaw dropped and must have had a grin from ear to ear because my face still hurts. It is offical, Bryon made a joke and followed through to the punch line without forgetting, pausing, or stuttering!

Of course he was way too groggy to care for this news, but I have publicly announced this news with him in front of friends and co-workers several times and he smiles and holds his head high. Congratulations on getting your wit back, babe!! We love you so very much!

Quiet Blog

It is weird when you forget about your own blog because there is nothing of value to report. As it is, Bryon has enjoyed his summer with his family. Lots of activities and adventures to share, but none so amazing as the fact that he is healthy. We are so astounded by his recovery and how well he functions from day to day. So I guess in a few words, everything is going great and the MRI is coming up on October 4th. There are no signs that the tumor has resurfaced, but even if it has, it would have to have made tremendous growth to start causing any interference with brain function.

I know there are other people out there who are not so lucky in their fight with cancer and that they have made their own choices for treatment. I just want you to think about it if it were you, for a moment. So what if there is no cure for what you have, that does not make you a goner. Every bit of treatment can extend your life a little more so you can build a bridge over the gap from dying, to dealing, to cured. That's all Bryon did was try to make it to the cure and he may have done it, but in doing so he may have cured others with his endeavors. Clinical trials are so important to our medical knowledge base in treating disease of all kinds. I am thankful for all the prayers and well wishes from everyone, but I would also like to thank Bryon for doing the trial that may have saved his life as well as many many others.

Sorry, I got all gushy there for a moment. It won't happen again...till the next post probably.

Results for August 10th, 2010

After the MRI on Tuesday we were informed that the doctor was out of the country and we couldn't see the results until his return next week. Being the impatient and resourceful person I am, I was determined to contact his nurse and force her to give us the results. To wait a week for such dire information is gruesome and inhumane. We had to wait an entire day(and a little bit more), but as of "some time before noon" on Thursday we were notified that there has been no change in Bryon's condition. He is still without a visible tumor and has been instructed to continue life as normal. No treatments and plan on follow ups every two months unless something should change. How freak'in awesome is that!!!?? What a way to start the day. Thanks again for all your prayers and faithful devotion to Bryon's blog. We want to continue to hope and pray for the same good news for Kris Cole as he continues his fight with cancer. He is doing well and remains active in life which is what we all want to hear. What blessings may come with faith, hope, and friends.

MRI Scheduled

Bryon received an email today confirming his next MRI on August 10th. He has also been scheduled to see the doctor about the MRI, but a week later. Results of this scan are highly anticipated by several groups so an update will be posted as soon as we know the results. We have asked that the doctor call us at his earliest convenience to discuss the scan so we are not having to drive down to hear the news.

No symptoms or indications that there is tumor growth has presented itself in the past 2 months. With this in mind we anticipate another clean scan, but nothing is certain. I have had several nightmares about it's return and it comes back with a vengeance. I tend to over react, over think, and over compensate just about everything so I will assume my brain is just protecting me in case the scans come back with tumor spots.

Anyway, that's the latest and greatest. Thanks for watching.

Thank You!

I just want to put in a quick bit here about our fundraiser/party/concert. It was AWESOME! If you didn't make it, you sooooo missed out. We had enough food, enough people, and raised enough money to make it totally worth it. The only thing we couldn't get enough of was the band. Stay For The Summer is so good and everyone was ready for more, but the band had run out of songs. I didn't care and every one seemed to recover just fine. Kris seemed to have a blast, but was slightly embarrassed when we presented the money to him. Thanks to everyone's generosity we raised $860.00 and as of today I have had more people pledge to make more donations. People are so wonderful when it comes to helping others. No one had to pay to participate, but I don't know a single person who didn't give something. There was so much support and kindness it almost felt a little like church...till The Side Kicks started to play. They managed to turn it into a concert once all the emotional stuff got done. Thank you Randy and fellow band members.

So, if you didn't make it for a legitamate reason I am sorry you missed the show. If you just didn't feel like showing up, or thought it wouldn't be any fun, well it was a blast and you missed out!

Thanks again to everyone in Cache Valley who helped make this the best party I have ever planned.

Thank you: Walt & Rosanne Povey & Family
Schreiber Foods
Cache Valley Radio
Stokes Grocery
Thuerer's Meats (sp?)
Mad Max's BBQ
Hansen Glass & Paint
Anyone who brought food...it was delicious.
My memory is awful, if I missed anyone please know I am very grateful to you even though I didn't type it.

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.