Christmas with the girls...

A darling picture on Marge, Norm, Lucy and Sofie!

New Developments

Well, things continue to change. Norm heard from one of his doctors, Greg Clark, yesterday, and as it turns out, he did indeed have a stroke on Thanksgiving morning.

They are calling it a medullary stroke, which accounts for the dysphagia (trouble swallowing) and gait difficulties. This makes more sense to everyone, since nobody could quite explain how these were related to the brain tumor as these functions were in a different area of the brain than the tumor itself. The doctor feels that the stroke was totally separate from the tumor, and that he is actually fortunate that the stoke ultimately revealed the presentation of the tumor. Had the stroke not occured, who knows when the tumor might have beed discovered.

In Norm's own words... "How unusual and interesting!"

As Norm prepares to start radiation and chemo next week, he is taking Marge to see Pink Martini on New Years Eve!!! Maybe Marge can even convince him to dance with her! :)

2009 Holiday Greetings

Although we enter the 2009 holiday season with the big "C" word hanging over our heads, I can only reflect with gratitude on the many blessings I have been given: The love of a wonderful woman, two terrific and responsible sons, two beautiful and patient daughters-in-law who love their husbands and adore their children, four fantastically adorable grandchildren, a grand-dog who gives unconditional love regardless of my condition, wonderful friends, neighbors, and co-workers...I could go on and on. Diagnosis is a glioblastoma, brain cancer with not the best prognosis. I've already had a craniotomy with tumor excision. I will start radiation therapy and oral chemotherapy early in January.

Through all of this, I've gained a little insight.... Christmastime is for children, with cookies and ornaments, and visions of presents. Give your significant other and children plenty of hugs and kisses, and do it now, and tell them you love them, and show that you love them. All families are faced with some sort of adversity, and we are no different. We just need to face it head on with hope and optimism. This diagnosis is one that often comes with an admonition to "get your affairs in order." (Tiger Woods should have paid attention to that a few years ago.)

I've learned some new names for Santa's reindeer: "Now, Dasher! now, Dancer! now, Prancer and Vixen! On, Ataxia! on Apraxia! on, Dysphagia and Blitzen!

Darling Drew was born last December 30, so he is approaching his first birthday. And Sweet Sofie, our mellow Muilenburg, was born March 24. Boisterous Brady will be 3 on our 40th wedding anniversary in February, and Lovely Lucy will be 3 in October. Four grandchildren born within 26 months of each other. So magical and wondrous!

We took a wonderful trip to Santa Fe with our good friends (and Pete's in-laws) the Jendrzejewskis in May, and a baseball trip to St. Louis in July to watch my beloved Dodgers get their hats handed to them 3 out of 4 games by Marge's Cardinals. Our gracious hosts, the Cavanaughs, didn't even rub it in.

Marge is recovering nicely from her hip replacement done in late October. We can join a mixed rolling walker basketball league!

We are happy to have Pete and Tracy back in the U.S. after two years at the Canadian International School of Hong Kong. They are both now at Marist Catholic High School in Eugene, OR. Andy and Ali both work for her family’s business, Mill Power Inc. You can check out photos of their impressive operation at http://www.millpower.com.

Ali created a blog to follow my progress:
http://normmuilenburg.blogspot.com/

We are looking forward to seeing what 2010 brings! Wishing you all the best for an enjoyable holiday; excuse the lateness of this if it reaches you post-holiday. I borrowed this from Bill Cole:

May you always have
Love to share,
Health to spare, and
Friends that care.

Two out of three ain't bad!

Love,
Norm and Marge Muilenburg

A few pictures...

Norm and Marge in their "Christmas Cracker" crowns.

Norm and his Grandog, Larue.

Norm, Larue and Brady watching a show.

The Week

Its been a few days, but we are pleased to report that Norm continues to do well at home. Andy and Pete and their families are here this weekend for "Muilenburg Christmas". It will no doubt be total chaos with 4 kids under 3, but we will enjoy every single second. Marge is pleased to report that we are having a total Costco meal - with the exception of the Epicurious marinade she made for the tenderloin. Papa is loving holding his favorite dog on his lap and getting hugs from his grandbabies.

The coming week will test Norm's strength. He has one or two appointments every day except Thursday (but someone from home health will likely come to the house). Norm will see radiation/oncology, oncology and neuro for follow ups. As of today, the pathology report is still not back. They sent his slides up to OHSU for review and are still waiting for results. We continue to hope for the best.

We will try to get some new pictures this weekend and pass them along soon.

Hugs from all.

 

Home at Last

Norm called this evening and was thrilled to report that he was HOME and headed for his recliner (if fact, now that I think of it, I think he was probably calling from his recliner). I can only imaging how good it must feel to be back in his own house. Norm sounded great - it was so good to hear his voice and be reassured that everything really is okay.

Norm did say that he had all sorts of appointments all over town in the next few days, so that will keep him busy - and exhausted I'm sure.

Now that they are home, Norm and Marge will have better access to their e-mail and phone messages. Please keep them coming.

Many thanks from all of the Muilenburg's for all of the support!

Going Home Tomorrow

Norm continues to recover well from surgery. He has been up walking around (with a walker) and is feeling pretty good. It sounds like Norm and Marge will go home Monday afternoon - where Norm will continue to recover in the comfort of his own home. Andy and Pete have both gone home to their families for the week, but will return to Portland this weekend.
Norm and Marge continue to express their gratitude for all the calls and messages - please keep them coming. They really do help to lift spirits!!!

A Good Day

Today was a good day for Norm and family. Norm had a pretty good night, considering they cut into his brain the day before! He had a follow up MRI this morning to check for swelling or bleeding and then was discharged from ICU and sent back to the oncology wing to recover in a normal room for a few days. He seems to have come through the surgery with little or no loss of function. He is still having trouble swallowing, so they will run a few more tests in the next day or two. I think he's probably getting tired of pudding.
If everything continues on the track he is on, it looks like Norm will go home Monday or Tuesday to recover from the surgery.
Marge and Norm are blown away by the support they have been getting from friends near and far. They appreciate every one of you and are grateful for all of the positive encouragement.
Marge and Norm will make quite the pair now, Marge with a titanium hip and Norm with a steel plate! Don't get caught behind them in the airport security line!

Wonderful News

Marge, Andy and Pete were able to go into the ICU this evening to see Norm. When they walked in, they we're shocked to hear "Hi, guys!" Norm was awake, alert and happy to see them. He has full function of both legs, arms and seems to be doing better than anyone could imagine after just going through brain surgery. The nurses even let them turn on the football game (as long as they kept the sound low and no yelling at the refs!) There is also a rumor that the nurses somehow managed to log Norm in to the Kaiser work computer and he was "working" about an hour before his surgery this morning.
Needless to say we are thrilled than Norm came through the surgery so well. He is tired, but resting and has a wonderful team of nurses and doctors caring for him.
I also strongly beleive that all the positive energy flowing his way is helping give him the strength he needs to fight.
Marge is exhausted and going home tonight for the first time in a week. Pete will stay the night at the hospital to be with Norm.
Please keep Norm in your thoughts and prayers - there is still going to be a long road ahead.

We love you Norm!!!

Out of Surgery

Marge just called and Norm made it through surgery just fine. The doctor said the surgery went just as he expected. He removed everything that he could see and some surrounding tissue - but did indicate that the tumor's margins were not clear and that it indeed looks cancerous. We will know for sure in 4-5 days when final pathology comes back.
Norm is in recovery now and will be moved to the Intensive Care Unit in a couple of hours. Marge and the boys should be able to see him then.
One hurdle down. Great job Norm!

Update

Update - we thought the surgery would be about 1/2 over, but doctor paged and said they spent the morning running a few more scans and a MRI - took Norm to surgery at 11:00am. Will be a few more hours.

In Surgery as of 9:00am

There was a last minute change of plans (late last night/early this morning). Norm's surgery was moved up and he went in about 8:30AM. Should be about 4 hours before we know more.
As my dad just said... "Kick ass Norm!"

A Poem by Norm

Trip to the Hospital

TIA?
Pass it may.
Is it a stroke?
No; no joke.
There's a rumor.
It's a tumor.
Glioblastoma?
I hit a homer.
Not rocket science; just brain surgery.
Look ma, the cran(e), the cran(e)

By Norm Muilenburg
December 2, 2009

Diagnosis and Game Plan

It all started on Thanksgiving morning. Norm went to the emergency room with symptoms including trouble swallowing, tingling in his hands and feet - indications of a mild stroke. After an incredibly long day of tests including a CAT scan and MRI, the doctors found what appeared to be a tumor in the left parietal lobe of Norm's brain. After being transferred from St. Vincent's to Kaiser Sunnyside, Norm and Marge met with the Neurosurgeon who has diagnosed Norm with Glioblastoma. A brain tumor. They won't know 100% until after the surgery and biopsy, so there is still hope that it is not as malicious as it appears.

Norm is scheduled for surgery on Thursday afternoon. We hope that they will be able to remove all or most of the tumor which will reduce some of the pressure on his brain. Norm is expected to be in ICU for a day or two to recover. After a few days in the hospital, we hope he will be able to go home for 3-4 weeks before he begins a rigorous radiation and chemo regimen.

At this point, Norm, Marge and their family need your love and support. Whether it is a prayer, a wishing well, a shooting star, or just good vibes - please send them Norm's way. We all know the power of positive thinking.

Norm's News

We (The Muilenburg Family) have set up this page as a way to keep friends and family up to date on Norm and this battle he is just beginning to fight. As you all know he is an incredibly strong man and we have no doubt that he will attack this thing with all his might. Please save this page to your favorites and check often for updates on Norm.

Please also feel free to post comments and well wishes for Norm and Marge to read.

You can also e-mail Ali with any news that you would like to share on this site at alimuilenburg@bendbroadband.com.