Update - August 20, 2016

On Tuesday August 16th Kurt had his first MRI since completing radiation in mid-July.  We met with his oncologist soon after and reviewed the latest image.  Just as the doctor prepared us to expect, the areas of cancer weren't changed in a manner that appeared visibly different on the scan, but we were assured that we were viewing a LOT of dead cancer cells.  The good news was that the existing tumors hadn't grown, and there was no new cancer.  That latest MRI will be used as the new comparative "base line" for the scans to follow.

On Thursday Kurt started the next stage of his treatment in the form of 5 days of a "double dose" of the same chemo pills he took during his radiation treatments followed by a 23 day break.  This will continue for 6 months with regular MRIs to monitor progress.  Whereas he tolerated the lower dose of chemo quite well, this new prescription is beating him up and knocking him down.  Kurt needs all the words of encouragement, good vibes, and prayers that his friends are able to muster right now.  Please keep him in your thoughts, and if you have time give him a call and / or make plans to visit.  Kurt and his entire family would once again like to thank everyone for their continued support.

Update - July 26, 2016

Last Tuesday July 17th marked a significant milestone for my brother Kurt in his ongoing battle against cancer.  He completed his 30th radiation treatment in Duluth, and he also took the last of his 42 doses of chemotherapy pills that coincided with those treatments.  Essentia Health's Oncology staff presented him with a Certificate of Merit and Appreciation, and in keeping with the plan that he arrived at with his three doctors and the members of his family, as of last Wednesday he returned to living independently in his home without 24 hour care.  After spending 48 days of this difficult time with the safety net of 'round the clock support from his family, returning to independent living has been a bit of a transition, but he is adjusting well and feeling a little bit better with each passing day. 

On behalf of Kurt and the rest of our family, I'd like to once again say a very heartfelt "Thank You!" to each and every person who has shown us all such kindness and support.  Whether you shot him a note by email, text, on Facebook, or this blog, contributed to his Go Fund Me page, sent a care package, stopped in for a visit, gave him a phone call, mowed his lawn, took up his slack or felt his absence at work, brought over some food, sent good vibes, or said some prayers, please be assured that it made a difference - Kurt feels the love, and the rest of us do too.  As I've said before, Kurt is at his best when he's entertaining guests.  If you have a spare moment, drop him a line and make plans to stop on by.  :-)  

Update - June 17, 2016

The "information center" with meds, phone numbers,
and appointments.  We run a tight ship. ;-)

As of today my brother Kurt has been out of the hospital and living in his own home for two weeks.  Things were a bit shaky those first couple days while Kurt acclimated himself to the new realities of daily life brought about by the sudden and unpredictable shifts in his vision (“visual episodes” or “visuals” as we’ve come to call them), but thanks to his determined nature, his adaptability, and the help of his family and some dear friends, he adjusted very well even to the point of coming to terms with his 24 hour caregivers.  We all worked together to move his bed and other gear down to a first floor bedroom, and after struggling through a bit of a “learning curve,” we got his many medications arranged in a manner that works for everyone – we established a good routine.  He takes his chemotherapy drug in the form of one pill every night before bed, and so far other than some skin irritation and some fatigue, he has avoided any serious nausea.  He makes daily trips to Duluth for radiation every weekday morning.

I’ve come to the painful realization that, where Kurt’s cancer is concerned, pieces of actual good news are few and far between, so when we met with his radiologist on Tuesday morning and reported that his vision had “settled down” a bit, the doctor’s surprised reaction became cause for a minor celebration.  He said it’s unusual for a patient to have any noticeable changes after only one week of treatment, and though his eyesight is still short circuited and unpredictable, the fact that he was no longer seeing vivid hallucinations was “…a very positive sign.  Excellent!”  :-D

Kris, Gina, and Swen making short work of a big job.

On a side note, Kurt enjoys a bit of gardening, but unfortunately “life got in the way” of this year’s plantings, and he was left with a number of tomato and pepper plants that needed to be moved outside to larger containers.  Because this became a source of daily concern for him, some of his friends rose to the task and worked together to get the job done.  I snapped this photo through his kitchen window both because the scene warmed my heart and also because it’s highly symbolic of the manner by which Kurt has been able to avoid a hospital room or residential rehab facility in favor of his own home…where he’s most happy.  “…many hands…”

The outpouring of prayers, positive energy, and support continues to touch and amaze us all.  Please keep in mind that Kurt is at his best when he is entertaining visitors.  He has many of his afternoons and evenings free, so please don’t hesitate to give him a call and stop on in. 

Update - June 3, 2016 (Home!)

This morning started in Duluth at Essentia Health St. Mary's with a mix of the appreciated appearances of cheery visitors and the harsh review of all the bad news.  This afternoon we reimagined Kurt's home, and thanks to "many hands," things moved.  This evening ended in the familiar embrace of a comfy leather couch with chips and salsa in the company of family and friends...and his own bed.

 Kurt is back home, and a small force of committed allies intendeds to keep him here.  Ring him up and pop in for a visit.  :-)

Update - June 1, 2016

When I went down to hang out with Kurt yesterday, I found him in poor spirits.  Obviously that saddened me terribly, so we had a long talk, and he expressed his deep frustration with the continuing disturbances to his vision and his inability to see clearly.  I decided to read to him the many kind words and lovely comments that have already appeared on this blog and the related links on social media - because he hadn't yet been able to see them on his own - and that brightened his day...a LOT.  On behalf of my brother Kurt and our entire family, thanks SO much for the flood of support.  We're all touched beyond words.

After the unfortunate delay related to the complex and (as we're learning) extremely UNcommon nature of his cancer, it wasn't until yesterday's analysis of the MRI conducted on Monday that Kurt had a comprehensive diagnosis clear enough to allow the formulation of a treatment plan, and he met with the radiologist today.  He had a CT scan for the purpose of mapping a plan of attack, and he hopes to start radiation and chemotherapy as early as Monday. 

He also met with a doctor of physical therapy, and we're all working on a plan to get him home as soon as possible.  I intend to stay with him for the first couple days, and my sisters and our dad are making plans to live with him in shifts as long as is necessary.  I opted to go first so that I can drink all his whiskey and raid his 'fridge and freezer in advance of the arrival of my other family members.  Kurt laughed at that idea, so...I'm assuming it's ok.  ;-) 

As of this update, he is still in room 8241 at St. Mary's (Essentia) in Duluth.  Feel free to drop him a line, and we'll keep posting updates.  Thanks Again.  :-)

Update - Sunday May 29

I received a call from Kurt this morning, and he reported that his vision had deteriorated to the point that it was difficult for him to see.  After a couple calls to St. Mary's, we drove to Duluth, and he was admitted first to oncology and then, after a CT scan and an MRI, to the neurology ward.  I stayed with him as long as I was able, and then he received a number of visitors - the best sorts of people, too.  :-D  According to the latest report, he is resting comfortably despite continued visual issues.  He has an EEG scheduled for Tuesday morning.  He's currently in room 8241.  Send some love his way.

Overview

At some point in April of 2016, my brother Kurt noticed a slight "fluttering" in his field of vision.  He thought nothing of it and continued on with his day.  A couple weeks later, it happened again, and that time the visual event lingered and was accompanied by a spike in his blood pressure.  Because he was already being treated for hypertension, he checked himself into the local emergency room, and they conducted a CT scan.  The scan revealed the presence of PRES...along with an unrelated spot on his brain.  I drove him to St. Mary's in Duluth MN the following afternoon, and he was admitted for a couple days.  They did some more scans, got his blood pressure under control, and sent him home opting to take a "wait and see" approach to the spot on his brain that, due to his age and medical history, appeared to be of only moderate concern.  They guessed that the disturbances to his vision were caused by the way that PRES exerts pressure on the occipital lobe of the brain.  The plan was to do another scan in a couple weeks to see if the spot changed at all and then order a possible biopsy after that IF needed.

Kurt went home and tried to get on with his life until less than a week later when he experienced a blood pressure spike and serious visual distortions while shopping at a local hardware store.  Because small town life is not without its advantages, the staff went above and beyond and drove both Kurt and his vehicle to the local hospital.  While in the ER that second time, Kurt had a seizure and was rushed by ambulance to St. Mary's once again. 

During this second stay in the neuro-trauma ward, he underwent biopsy surgery, and once again they stabilized him and sent him home.  At his follow-up appointment, the neurologist told him that he did indeed have a tumor that was likely very serious, and last Friday May 27, Kurt and I met with his new oncologist in what was without question the most momentously saddening day of both of our lives.

Kurt has been diagnosed with grade 4 Glioblastoma - an aggressive from of brain cancer.  We aren't sure what the coming months and years hold in store, but Kurt expressed his great determination to fight this illness for all that he's worth.  Any and all positive thoughts, good vibes, kind words, and prayers that you can send his way will be much appreciated.  Please book mark and check back to this blog on a regular basis as I intend to update it frequently.