Bill needs NGS testing for Cancer Treatment

Hi everyone,

I understand this may seem strange, that I am writing this rather than my Mom. At first, I thought she was taking her time posting this because she is busy; as she is in the middle of another training session at work. However, when she first joked to me that I should just write this for her, I realized it wasn’t because she was busy, it was because she could not relive the past year by putting it into words. Not that writing this has been any easier for me, but if I can support my Mom in any way through this, I am certainly going to try.

Our journey over the past year has been absolutely wild to say the least. My Dad was not fortunate enough to have a straight diagnoses. Together, we went through many worm holes of “you have cancer” to “no you don’t have cancer” over and over again. I am going to explain the last year as best as I can. If you have heard it all already, feel free to skip to the last paragraph where I explain the reason for this go fund me, if you’d like.

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In the winter/spring of 2019, my Dad started having some stomach pain. He went to our family doctor, and was then diagnosed with stomach ulcers. He was given some medication then that was that. So we thought.

Fast forward to the fall of 2019 (keeping in mind he had never really stopped having troubles with his “stomach ulcers”), my Dad started having excruciating back pain. Back pain so bad that he couldn’t drive, barely walk, or even lay down in his own bed. He slept kneeling in front of a recliner for weeks. With the help of a walker and me being his personal chauffeur (not complaining of course, lol!), my Dad started seeing a physiotherapist multiple times per week. Unfortunately, he still wasn’t getting relief from his back pain.  Mom decided to take him to the hospital. On their way out of the door Mom realized that my Dad was jaundice. He looked like a Simpson’s character! On to the hospital they go. There, he received meds for his back pain, then they immediately started looking into why he was jaundice. After some tests, they found out that Dad had a mass in his bile duct and would need to have a stint put in it to help the bile drain properly. While waiting for this stint to get put in, he was still in a lot of pain from his back – even while being maxed out on pain medication, he was in agony. Finally, a nurse saw him basically dragging himself to the bathroom, and ordered a neuro consultation. Turns out, one of his spinal discs were compressing his spine, almost paralyzing him. Off he went to emergency spinal surgery.  This was early November.

Five days after his spinal surgery (which went great, by the way!), it was time to get this stint put into the mass in his bile duct, through a procedure called ERCP (basically it was an endoscopic procedure in which they go down the throat to do). During this procedure, the doctor’s took a “brushing” of the mass – similar to a biopsy. The results from this brushing, came back non-malignant! Great! We thought this was the beginning to the end of hospital visits – the road to recovery! Turns out, we were wrong.

After the stint was put in, my Dad’s gallbladder “rotted,” for lack of better terms. He went septic and had to have emergency gallbladder removal surgery. After the surgery he stayed in the hospital for two nights to recover, and then was able to go home. Not long after, they called him in for an endoscopic ultrasound (this also goes down the throat and takes a biopsy). Then another one about a few weeks later. Get this, BOTH biopsies came back non-malignant! However, we still had doctors telling us they think it’s cancer. But that didn’t make any sense! All three tests that had been done on the mass had all come back negative, and while his cancer enzymes in his blood were slightly elevated, they weren’t high enough to confirm cancer. We were holding onto hope that these doctors were wrong.

My Dad continued with regular bloodwork and CT scans to monitor the development of the mass and check in on the stint. But then, they called him for surgery. They were going to do  a bile duct bypass which removed the portion of bile duct that had the blockage and the stint. They also took multiple biopsies. And after testing those biopsies, they have officially confirmed my Dad to have pancreatic cancer. My Dad is starting chemotherapy on December 10, 2020.

Reason for the Go Fund Me starts here:

Another treatment that we have been told about from the oncologist is something called “Next Generation Sequencing.” This is a beyond confusing concept, in which my best understanding of it is: it is a test that looks at the different components on the DNA and studies all of the possible mutations that can come from the DNA. Because cancer is a type of mutation, they can find out what medications can attack those very specific mutations. Which in turn, can be used to treat cancer. Because it is truly a confusing topic, unless maybe you’re a biologist or something, I will leave a few links in case anyone wanted to look it over for themselves.

As a family, we are willing to try absolutely anything we can to help my Dad beat this cancer. If this test can help him, we will try it. That being said, it is an expensive test. We are looking at about $8000 dollars. From what I have seen growing up, my parents try to remain low key and be very independent with anything that stands in their way. My Mom always remains so strong in every situation – never tries to allow anyone to see her emotions or pain. My Dad, well he’s one of the most private people I know. The man just started using Facebook a few months ago, lol! My point being, my family aren’t usually the type of people to ask for help, even if they need it. But for this particular situation, we are looking to our friends and family for help. We are making this go fund me for any help we can receive on the financial aspect of my Dad’s treatment. I have set it up for the full $8000, not that we expect that much from our friends and family, but simply because that is the amount that this test costs. Anything anyone could donate would be amazing, and us as a family will be forever grateful.

If you managed to read through what could be made into a trilogy of my family’s reality of the past year and a half, I thank you. We will forever cherish the amount of prayers and thoughts that have been sent our way.

Thank you again,

Kelsey


Here is a link regarding the Next Generation Sequencing: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3841808/

We also have a PDF file that was sent to us by my Dad’s oncologist, if anyone would like to see it just send us a message and we can send it your way!