Olga Terezia Walsh

I once read somewhere that roughly 3 in 100,000 people will be diagnosed with a “rare” Glioblastoma.

My June of 2021 began having never heard of the word “Glioblastoma.” Come mid July, my mother had been diagnosed and two separate families from our inner circle of friends also found themselves battling this terrible disease in some way. It just does not make sense…

Olga Terezia Walsh was a one-of-a-kind mother, babka (Slovak for grandmother), sister, friend and an overall selfless and loving human being.

She was born to Jan and Maria Pastor on February 10th, 1951 in Kosice, Czechoslovakia (what is now Slovakia.) My mom moved to the United States from Czechoslovakia. Fresh out of high school she went right to it. She didn’t wait around for something to land in her lap or make excuses. She took courses to learn the English and she was proud to have officially become a U.S. citizen in 1978.

For over 20 years she worked as an Exceptional Student Education Paraprofessional at a local elementary school. She loved working with children and had a true passion for learning. We were in luck when she retired in 2018 and eagerly took on the role of caregiver for our then newborn son Jack.

Since July of 2018 right up until June 10th, 2021, for 3-4 days a week, 5-8 hours per day, my mom called herself “so lucky” to spend time with her little pumpkin. Every morning Babka would come barreling through our front door in waaaay too good of a mood for 8am. “YoooooooooHooooooo!” she would call out to Jack as she pulled her rolling cart behind her filled with that day’s goodies. Garage sale gems, Dollar Tree or Target steals or long ago forgotten school treasures - whatever was in “Babka’s Rolly” brought hours upon hours of joy and entertainment to not only Jack, but to her as well.

On June 27th, 2021 our lives forever changed. My mother was diagnosed with a Glioblastoma at the Mayo Clinic. Due to the size and location of my mother’s tumor, it was deemed inoperable by even the best neurosurgeons they had to offer. The tumor created a lot of swelling and took over her brain going from the right side, crossing over into the left. After 2 days of medical counseling and much debating, we felt OK with my mother’s decision for “quality vs. quantity.” 2-3 months they gave her. It was “God’s will” she said.

Almost 2 months from the day of diagnosis, my mom experienced (4) back-to-back seizures at our home that ultimately led to her admission into the local hospice facility. She went 6 days with no food or water and passed away on September 4th. Minutes before her first witnessed seizure, my mom was coloring with my 3 year old son and stood up as they were then planning on moving on to Play-Doh. She had eaten a large portion of lasagna and broccoli just hours before. She was still mobile and able to do many things without assistance. Although we knew that seizures were a possibility, it completely took us by surprise as things appeared that day to be so “normal.” What was our new normal at least.

I cover so much here so that you not only get a sense of who my mom was - how important she was in our lives, but also in the hopes that something will benefit someone, in some type of way.

In hindsight, some of the symptoms that my husband and I can recall, prior to her diagnosis, that may have been associated with her Glioblastoma were:

ER visit in February 2021 due to my mother’s complaints of nausea, shortness of breath and heart palpitations. This was ultimately attributed to her blood pressure medications and high blood pressure. In hindsight, we realize these may be some of the symptoms one can experience with a GBM. A friend who is a Nurse Practitioner in the ER said that had my mom complained of a headache, they would have ordered a CT scan though since she did not, no imaging was ordered. What seemed to be “normal” age related cognitive/memory issues (misplaced cell phone, misplaced wallet, etc.) and other memory issues such as continually referring to her then unborn grandson as “Sam” when in fact his name was to be Max (both in speaking and when writing)
Minor personality changes - i.e., no longer concerned with being on time for things, increasingly unorganized, etc
Appetite for sugar and carbohydrates increased substantially
Weight loss (for when brought up, she attributed to cutting down on sweets/sugar)
Daily water intake decreased (we would hound her about drinking more water)
Depth perception off (we thought was result of recent cataract surgery)
Issues with driving, got lost returning from a frequently visited store near her home of over 20 years

I gave birth to her 2nd grandson on May 15th (for which she spent the weekend at our home with our soon-to-be three year old as due to COVID, children were not allowed to visit.) Since both my husband and I were off of work for the new baby, we told my mom to “take a break” as we wanted to take that time to acclimate to the new family dynamics.

She came back to watch Jack a few days a week starting the week of June 7th. We noticed some of the aforementioned symptoms during this time. We however attributed them to her recent cataract surgery and to her newly improved vision after so long of basically not being able to see out of her right eye. She was one to never complain about physical ailments and was one of “those" people who “didn’t like taking chemicals” - she very rarely even consumed Tylenol.

In mid-June, my brother, who resided with my mother, said that my mom had not been eating and had been sleeping the day away. This was very unlike her.

In the week leading up to 6/27/21 diagnosis, we went to her home to have her spend time with the new baby and observed how disheveled both she and her home were. On her nightstand, we saw an unfinished rotting sandwich in her lunch box from when she was last at our home the week before; her clothes were on inside out and backwards.

We obviously knew then that there was something very wrong.

We brought her to our home and spent that week making appointments with her various doctor office’s and attempting to collect medical records. A couple different doctors ordered comprehensive bloodwork and urinalysis. Her new PCP ordered an MRI for that Friday. At the imaging center, she was very emotional, almost childlike, crying and saying she was scared. At that point we had not been given results from any of the tests ordered by her doctors.

Problem with her medication again? Bad UTI or kidney infection? Electrolyte imbalance? Minor stroke? We didn’t know and neither did any doctor’s office representative we spoke with. My mom had no other health conditions other than the high blood pressure and had never smoked and rarely drank alcohol. No one even mentioned the word tumor to us.

Sunday came around with still no contact from either of the doctor’s offices with test results. Thankfully I ended up calling my friend (the Nurse Practitioner at Mayo ER) and her professional opinion was for us to go to the ER immediately. She suggested this as to her, these symptoms were very troubling and obviously waiting around for the offices to reach out was not resulting in any answers for us. We were told to mention headaches.

Within 2 hours of checking in to the ER, a CT scan and second MRI with contrast later, we received the results. I even found out that the MRI done at a separate facility days before was done incorrectly. To this day, we have never been contacted by her primary doctor’s office with those results.

Her brain swelling was so bad that they put her on a high dose of steroids and admitted her to the hospital immediately. The numerous medical professionals that we met with were all “97% confident that it was a GMB.” Since my mother refused a biopsy and ultimately chose the quality route, she signed up with our local Hospice. All of our points of contact at the Hospice facility and all of the folks on her care team made this whole situation somewhat manageable. They showed compassion and almost everyone made me feel as though they truly cared. Not sure what my husband and I would have done without their resources. Being a caregiver for my mother has been the toughest challenge that I have faced so far. Not because she was unruly or immobile, but frankly because it is very hard to watch someone you love so much die in front of you, especially when there is nothing you can do to stop it.

Thankfully over the two month span from diagnosis to what would be her fatal seizure episodes she never lost mobility. She had a decent appetite and fluid intake. She was able to feed herself and swallow. As long as we provided some direction, still complete basic personal hygiene tasks. Talk and write and draw. She was mostly pleasant and maintained a great sense of humor. For the most part she never forgot our names or who we were to her.

Some symptoms/things we experienced post diagnosis while she was staying with us:

Post nap day/night confusion (one time she asked if we were in another dimension after waking up while it was still daylight after going to sleep during the day)
Manic-like episodes
Times of paranoia and delusional thoughts (for a period of time she was convinced that this resulted from her cataract surgery)
She wrote a lot and some days it would be normal and others, double letters or repeated words or phrases
Distaste for foods/drinks that she once enjoyed
Things that would have normally worried her (for example fast driving always made her nervous) no longer did
Complete loss of sense of direction. We hung up neon orange directional signs through out the house so she that was able to find her bedroom and bathroom
We hid the knives at night because she would be up at odd hours of the night randomly cutting fruit and bread, making sandwiches, etc.
Unable to regulate body temperature (towards what would be near “the end,” she actually no longer got cold)
Completely forgot about any sort of housekeeping or financial responsibilities
Memory loss both short and long term. At times she recounted stories from her early childhood, things she had never told us before but then could not remember what community her current home was located in. She couldn’t recall what she ate for breakfast but remembered the countries and places that we visited on a Europe road trip in 2019
She was aware something was happening in her brain. She would often say, “things are changing and happening in my head, I can feel it but just can not describe it”
She did not lose her fondness for chocolate or coffee : )
Emotions were all over the place
There were times that she wrote on the walls because she was unable to find paper and “had things to say”
One week prior to her series of fatal seizures, she fell straight back onto our tile floor. A hematoma on the back of her head and a bruised elbow were the only injuries. It was only after she was in Hospice, that we were lead to believe that she must have instead had her very first seizure as opposed to just a random fall. She had no defensive injuries and was unable to recall how she ended up on the floor just minutes later.

My mother’s tenacity and kind heart allowed her to feel satisfied with her life and the way that she lived it. She loved the simple things and truly lived for her family. My mom was one-of-a-kind and very special to all of those that knew and loved her. Knowing this helps me to be somewhat at peace.

How we managed life watching my mother succumb to this along with caring for a toddler and a newborn is beyond me. We were in a global pandemic and our closest extended family was across the country, with her side of the relatives literally across the world. There are things that I wish we did, that I wish I had said, that I wish had happened differently…. wishes upon wishes. I most certainly have PTSD. What has been therapeutic to me though has been to write about it, to read about it and to talk about it - especially with those that have gone through similar hardships. I hate the fact that people reading this most likely are because they are going through “it” one way or another.

My advice is to cherish the good moments, document them as much as possible, to speak from your heart and to accept help offered from others.

The current standard of care for glioblastoma consisting of radiation and chemotherapy is ineffective.

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