PART II: Brain Cancer Fight Patrick Nelms

This Fundraiser was REACTIVATED by GoFundMe, original funds raised 3 years ago were $14,720.

Please see updates area for latest. Thank you. 

New update as of June 14th, 2021

The update I thought would be different…

DEC 2020
Pat lost his job, then came weeks of confusing texts, phone calls and visits.

2 JAN 2021
Communications from some of Pat’s friends and my concerns after speaking with him that day took us to getting Pat to Mercy ER. He was very confused, had lost significant weight and was visibly physically impaired. Pat was in big Mercy until January 8th. They put him on some high powered steroids to reduce the swelling they found on his brain after CTs and 2 MRIs. There was a considerable enhanced area of his brain that could be new tumor growth in his medial right temporal lobe, the area of the brain that is important to cognitive and emotional functions. We left Mercy thinking the original cancer had grown into Glioblastoma, a monster form of brain cancer that takes lives quickly.

Pat could no longer live alone, he could no longer drive, he needed supervision to make sure meds were taken at the bare minimum. His short term memory was non-existent. There would be no new job.

Over the next 10 days there were many home health visits including Speech therapy, they test for memory and cognitive skills amongst many other things. Pat’s test results were similar to those of a dementia patient. He was physically in better shape as far as getting around etc. but the cognitive and memory impairment was still very significant. We struggled to make sense of what was happening. Our brother seemed to be slipping away. We saw glimpses of the Pat we knew from time to time with sarcasm and the occasional finger flip if we said something he wasn’t happy about. We saw his frustration with not even being the Pat we knew in mid-2020. He would say “I keep doing stupid shit” and “I can’t remember shit”.

19 JAN 2021
Brain biopsy was performed on the area of concern, then the wait for results. Good news…it was NOT thought to be new cancer growth. Unfortunately, there was some bad news, Pat was diagnosed with radiation therapy induced brain necrosis. This means that part of his brain near the original tumor site has died off (created a lesion) and significant swelling is occurring. It’s known, although supposedly rare, to creep in up to 2-3 years post radiation which is where we are now.
Over the past 6 months Pat has been in the hospital twice since the original January admittance. The latest being a five-day stay after ambulance ride to the ER at the end of April. Best I can estimate based on the calendar of events between office visits, home health visits and treatments at Pratt Center he’s had about 44 appointments. It’s taken a family care team to get those scheduled and completed.

Is there a treatment for brain necrosis?
Up until about a month ago doctors were trying to gauge how Pat was responding to continued steroid treatment. The steroids have significant side effects so long term is not a good option. We moved down in dosage gradually with very poor results, hence the latest hospital stay. The last resort treatment which we started May 18th is an infusion chemotherapy drug. I say last resort due to cost and that there really isn’t another option out there. It has been known to improve some patients with radiation necrosis. There is no way to know for sure if it will and could take up to 6 months of treatment to see what level of “Pat” we will have. Each infusion visit can last up to 3-4 hours with testing and doc visit.

Where we are now…
In the past couple of months Pat has become more non-verbal and has had issues with falling. We do still see some glimpses of humor and sarcasm occasionally. Majority of conversations are one-way with some hand signals like thumbs up from him. There are some bad days, then some days not as bad. I’d like to say there are good days but I am unsure how to define that right now. He still loves his music and will tap to the beat of a song. Every once in a while he will even repeat a few of the lyrics. Pat requires significant direction, guidance and some physical help to complete tasks like taking a shower and getting dressed. He is unable to focus on a task at hand, the next step does not come to him. I could go on here with dozens of examples but I won’t. I am the one writing this update but I am not alone in caring for my little brother who will turn 51 on July 14th. My Dad and brothers; Steve, Andy and Matt are all on the care team along with major supporting roles of spouses, family, friends and even co-workers. I am updating this now reactivated GoFundMe page because many have asked about helping and for an update. This is not an update I had hoped to write at the almost 3.5-year mark post brain surgery for the tumor removal. We do have hope though…yep we have to be strong for Pat and each other. I truly hope one day soon he reads this and says what the hell?!! Thank you to everyone that has reached out to check on Pat and us. We appreciate all the prayers, support messages and phone calls. We can’t get through this monumental challenge without all of you. I will end this as Pat always does…

Peace and Love,
Mike
On behalf of our brother







Brain Games (name coined by Pat of course, he's still got his sense of humor)

 

December 18th, 2017 Seattle Washington

 

Pat had traveled there for work at one of his company’s locations. During that day he had a seizure in the warehouse, collapsed, and hit his head, his coworkers found him and had him taken to Harborview Medical Center. He was 2,086 miles from home and had no family members to help him get through this. Luckily, Pat works with some great people, Skyler (sp?) and Louis there in Seattle to mention just two. They made sure he was not alone and that Pat’s wife Karen and other family members were up to date on his condition.

 

Over the next 24 hours, the doctors discovered a large mass on his brain. Pat was now on strong anti-seizure medication and working to convince the doctors to let him fly home alone on December 20th to continue his treatment back home in St. Louis. He managed to do just that!

 

The next several weeks were a blur of appointments, scans and tests. Pat sought out the opinions of 3 top Neurosurgeons in St. Louis. He decided on one and the brain surgery took place at Mercy St. Louis on Wednesday January 24th.

 

The findings…

 

The tumor was/is in two lobes of his brain.  Right frontal and temporal.  It surrounded a couple of arteries that are very important to supplying blood to the parts of his brain that control vision, speech and motor skills.  They had to leave roughly 10% of the tumor in place to help avoid those arteries.

 

Friday January 26th, yes just 2 days later, he was home sitting in his recliner eating a pizza.

 

The tumor…”tangerine”

 

Pat started calling his tumor tangerine because he wanted a size reference. Tangerine is a grade 3 anaplastic astrocytoma. Chemotherapy and radiation have started and as of today, 5 days have been completed and many more weeks to go.

 

The Fight…

 

As you all know, not only is the fight physical and mental, it comes with a huge monetary cost. Pat has medical insurance through his employer and they provide short-term disability but that has run out. He is determined to return to work but cannot. Many of you have asked how you can help. Well, through your donations, no matter the size, you can help pay for medical expenses, transportation to treatments, and basic living costs. Thank you for your prayers and support throughout this fight!

Mike Nelms

Pat’s older brother

 

 

PS. For those of you trying to count, 57, yes 57 staples. Pat brought them home of course, being an avid Fly Fisherman he may try to figure out a way to make some unique "flys" during his recovery.