Friday, December 23, 2011

Another brain scan

Well it is here again, dum dum dum, it's time for another scan of my brain. I had it done last week and now it will be the Tuesday of the next week before I know what it says.

I had a scare that had me going in a month early for an MRI. So if you are praying send one up for me.

Also, Kenny Jacobson has been brought into our group with a stage 4 melanoma.

Cancer sucks!!!!

Tuesday, December 28, 2010

Bryon the Superstar

Check out this site and see if you can find Bryon in the recently released study information from Myrexis Inc. This is what the official word is on the drug treatment that made Bryon's recovery such a success!

Bryon's a SUPERSTAR!! (anonymously of course)

Wednesday, December 15, 2010

The truth about us...

Life is great when you know exactly who you are and what is important to you. I have recently discovered that I do not know myself at all. Back in June I bought a sexy economical 4 door sedan built by Dodge. A car that most people know as a Charger. I got a heck of a deal on it and I love the way you could drive it at crazy speeds and feel like you were only going 40. I am sad to report, however, that I have found out the inevitable truth that we are not Dodge people. It is a nice car, has great gas mileage, and I can even make the payments without complaint, but it just isn't a GM car. I find myself dreaming of screaming down the highway in a Pontiac Grand Prix and enjoying flaws that I have become accustom to over the past 7 years with my first Grand Prix. I guess you could say I love my clunker at heart, but who wouldn't after 220,000 miles and no serious problems. In closing I would like to ask you all to get the word out that a sexy, well maintained, almost new 2008 Charger is on the market. I am asking $15,500 and it has 23,000 miles and there is absolutely nothing wrong with it except the owner has issues...but I've heard all the cool people do.

Tuesday, December 7, 2010

Quick Blurb

The sun is shining through my window today so I am sure that means good things are coming. Bryon has shipped himself to SLC today to cover the radiologist report with the doctor. Thanks to his wonderful mother Lana who graciously escorted Bryon to the big city, I am able to take Anna to her orthodontist appointment in Pocatello. We seem to be multitasking very well and I hope it pays off with some good new and as a little pain as possible.

Just as an update; Anna is feeling much better after her adventures in the ER. Turns out her tummy is quite upset with her eating habits and it needs more variety than what she restricts herself to. I think the whole experience has taught her a lesson and she seems to be more inclined to eat her fruits and veggies. I even saw her eat half a can of green beans and she was happy about it. She has had a few moments of pain since the ordeal, but at least we know she isn't in any immediate danger. The appendix theory is still up in the air since it is a possibility that it is having some trouble, but until something serious arises there isn't much we can do. I am just glad Anna is more willing to try new foods now, and she seems to be making a game out it. Way to go Anna!

I am excited to say that I will officially be certified as a forklift driver this week. I have passed training even though I was extremely hard on myself through the whole thing. I was told during my review last week that I am doing average to above average for this phase in my employment and as long as I do what I am supposed to do, they anticipate I will be a pro in under 6 months. I already have 2 1/2 months down so I am anxious to see how the next few months go. This week I will be officially alone since my trainer has taken another shift, but I am getting along very well with the boys I work with on the night shift. I say boys, because that seems to be the general attitude of most them. The horse play that goes on when they all get together is incredible.

So, off I go to Pocatello now with Anna and Audrey. Anna gets her first oral appliance and Audrey gets to play video games while we wait...oh goody. We will let you know how Anna fares after the ordeal is over.

Wednesday, December 1, 2010


Anna and Audrey are notorious for fighting and being exact opposites in just about everything they do and say. Lately, I have been taking double takes when I see them together because not only are they not fighting, but they team up and work together to achieve whatever it is they are trying to do. Tonight was the best example yet of my girls getting along. Audrey is definitely the boss, but Anna doesn't seem to mind the directions being forced at her. I told Audrey maybe she should encourage Anna to do her homework instead of play games, and the next time I turned around, Audrey had Anna at the table working on her math.

It was simple subtraction problems 1-10's and Anna had several practice sheets. Anna had one and Audrey had one. Audrey instructed both of them to put their names at the top and begin working. Anna of course was much faster, but Audrey seemed to grasp the concept quite well. We counted on fingers and she was able to understand that if you have 8 apples and you eat 3 of them you come up with 5. She was also doing well writing her numbers legibly and I was proud of both of them for their efforts at working together. Even if it was just Anna's homework and not Audrey's.

You can tell from the photos they are deep in thought and very serious about their education at the moment. Grandma Westerberg would be so proud.

Prelimanary Results of MRI

Bryon and I just returned from Logan and his appointment in Radiology at the Specialty Hospital. The appt. went well with no reactions to the contrast this time, but Bryon was pretty bummed out that they did not offer to let him listen to music during the scan. I guess when you have been doing this as long as he has you get used to doing things a certain way, but he got to listen to Tom Petty on the way home so it wasn't too tough.

Immediately after we arrived home, we gathered all the expert knowledge we have acquired over the past 2 1/2 years to read the results of the MRI. The actual report has not been written yet, but we were able to score a CD so gives us a visual. According to our not so expert opinions, the growth has remained stable and looks to be the size of a pencil eraser. That's good news if in fact that is what the doctor see's. We were a little surprised to see so much fluid in his head though. It has always been there since they removed the tumor during the last surgery in January of 2009. Maybe it is just that we are not used to seeing such large voids since they are generally full of cancer cells growing rapidly out of control.

At any rate, we feel a slight sense of relief that Bryon most likely will not have to endure another surgery in the immediate future. As for the written report, we will have it summarized by the doctor and be able to visit with him about it next week.

Monday, November 29, 2010

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.

Monday, November 22, 2010

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.

Saturday, October 23, 2010

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. 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!

Thursday, October 7, 2010

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.

Sunday, October 3, 2010

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.

Monday, September 20, 2010

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!

Tuesday, September 14, 2010

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.

Thursday, August 12, 2010

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.

Wednesday, July 21, 2010

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.