New Doctor's for New Problems

Not much has been going on lately except we are trying desperately to coordinate doctor visits. It seems like every time I turn around I am constantly rearranging appointments so I can be involved with my families health care. Bryon feels fine, but we are trying to keep his MRI appointment, doctor appointment, and port maintenance appointments straight. To add to the confusion, Anna has begun her adventure in orthodontics and is seeing an orthodontist in Pocatello. My poor mother took Anna for her first "fitting" visit and it just so happened to be on one of those lovely days when the snow was flying. I am very grateful to both of my parents that they are so willing to help out with these driving arrangements. Since I have an appointment every Monday in Logan and my days off limited, these little pieces of time need to be budgeted very carefully and their help has made it work.

We now add a new doctor to the pile. Anna has been complaining of stomach pain a lot for the last two weeks. It really got obvious on Thanksgiving that she was not comfortable at all. She would eat fine and play until her stomach decided it had had enough. She went for a sleepover at Grandma and Grandpa Westerberg's house and was even able to play at Granny's for a day. Saturday night she attended an Aggie basketball game(she was thrilled that they won) with her dad, sister and grandparents. By the end of her evening she was wiped out and in pretty constant pain. As a mother your heart bleeds for your child when they hurt the way Anna was, but you also have to keep a cool head for your kids sake. I tried to decide how much was drama and how much was real suffering. When the pain got bad enough she was doubled over, I asked her many times if she felt that a visit to the hospital was necessary(I was told that if there was no fever or risk of dehydration and all that stuff, then it wasn't an emergency. Hence y hesitation in this case). She said she would like to see a doctor and we packed up and headed to Logan.

That poor little girl was put through so much crap while she was trying to endure the pain and difficulty of not being able to rest. There were IV's and needles, poking and prodding,urine and blood samples, X-rays and even an ultrasound. By the time we got there and had been put through the ringer, Anna had a fever of 103. Some Tylenol and a Maalox cocktail took care of the fever and dulled the pain for a few hours so she could sleep. She was kept till 7:00am for observation and the doctor admitted she had no clue what was happening, but that there was definitely something wrong. Appendix comes to mind, but there was nothing conclusive that said for sure she was in need of surgery.

So, today we have made some arrangements to go back to the hospital and discuss the weekends events with a pediatrician and decide if the next step is to be the CAT Scan and possible surgery, or if she has some fancy disorder that I can't spell. The radiologist who did her ultrasound noted that her lymph nodes in her abdomen were very inflamed which coincided with her blood work. Apparently there is a word for it, but heck if I can recall it , let alone spell it.

In total, we have 5 doctor visits to complete in the next 9 days. Audrey seems to be the only one without an ailment and is loving the idea of taking care of her family. She has helped out enough that I agreed to pay her for every chore she completed while we were dealing with all this junk. She took to that like a fish to water. She has already earned a dollar for cleaning her room and plans to help with laundry to earn a few more. All in all I think we are busy but doing well. Results of our adventures will be eagerly anticipated, but at least we have the snow to distract us till they come in.

The final count down...

The year is rolling to a stop in about 35+ days so I figured a post before then would be good.

Bryon's next MRI will be done in Logan instead of SLC. HURRAY!! He is feeling well and making progress in his speech and cognitive functions. He is having troubles with a few things that make it difficult for me since I am not at home, but I would rather be working and having him learn by himself than having to constantly hold his hand. I think he kind of enjoys the independence as well. After watching a Warren Miller Ski Documentary he decided it was time to pick up a hobby...rather, continue an already existing hobby...snow skiing. I am anxious to see the snow fly since it has been years since we let Bryon loose on the slopes, but I am sure it is a lot like riding a bike. We'll send out a warning when he heads to Beaver Mountain, just to give you all the heads up to get out of the way.

Recently, Bryon started making appointments at Logan Regional to have his vascular port flushed once a month. Seeing how this has been done for well over a year, I joked and said I should do it. Bryon agreed! In about 30 days I will be heading into the hospital with him and I will get a crash course in how to administer Heparin (anti-coagulant) and properly flush a port with saline solution...needles and all! I am so excited that there are not words to describe it...seriously!!

So, the next time we post it should be after the last MRI of 2010 that is scheduled for December 6th. After that we will probably have lots to report about the home nursing try outs, any bets on how much blood will be wasted during my training at Bryon's expense? That should be a long enough break to get you through the holidays and on to the new year. As a side note, for anyone who reads the families private blog, it will be discontinued by the end of the year. This will be easier and more efficient to update only one blog.

Honorable Mention

Business first: The next MRI will be in the first weeks of December at a new hospital that is covered by our insurance. Dr. Jensen at the Huntsman Cancer Hospital will still be Bryon's primary physician. Hurray...now on to more exciting news.

Bryon and I have been asked to participate in an interview with Myrexis; the drug company formally known as Myriad and the creators of Azixa.(The wonder drug that Bryon's trial was based on.)Typically when a company has success in a clinical trial they tend to publish the results and make it public what happened during the trial. The purpose of the interview would be to get a patients perspective regarding how the drug (azixa) changed their life. Myrexis would like to get a quote or two from us which they would include in the articles made in a formal report of the drug trial.

I received this request in my email today and didn't know what to think of it, but it sure makes me proud of Bryon and how strong his faith must have been in order to keep going when the cancer got tough. He really is a trooper and I hope he is proud of himself for all that he has done for himself, his family, and other patients needing to be treated. Even if he decides not to participate in the interview it is a huge deal to be considered for something like this and it proves he really is a super hero. My hero!

A New Adventure Begins

We are so fortunate to live in a time when health care and technology are as advanced as they are. The MRI machine alone is a miracle worker and it doesn't even treat anything! What I am trying to say is that Bryon's tumor is still at bay and considered stable. We have been warned it will return someday, but Bryon has already lived long enough to be in a time and place that will give him the best opportunity for treatment and a healthy future. The doctor has stated that the drug trial is officially over since their is nothing left to experiment on and that Bryon will not be eligible for the drug in the future. Not to worry though, there are drugs now on the market that are as effective or more so than the drugs he was receiving. The new drugs are based on the additive that Bryon was on in conjunction with his traditional chemo. So things are looking up for Bryon and all the others we know with this strange tumor. I hope everyone knows that a person can live with this tumor now, it isn't an immediate death sentence anymore, like it was only two or three years ago. Bryon is moving on to a new adventure of living living with a tumor, and he improves every day. Speech, motor function, memory, attention span; it is all getting better with time and the proper attitude.

City Kids

Bryon and I are going to Salt Lake for our regular MRI and doctor visit. Bryon will get his MRI on Monday afternoon and then we will hang around till Tuesday morning when we will check the results with Dr. Jensen. This should be an interesting visit since we never got to see the last MRI. We will be able to compare the last one to the latest and see if there is ANY change at all. Bryon was very worried earlier this week, as was I, but now we are anxious and waiting to see what our future holds. As always, no news is good news so don't panic if nothing gets posted right away. We have lots to do so I will get around to do the new posting as soon as I can, so don't touch that dial as we will return after a brief break.

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.