Jonathan’s Story

Site created on March 4, 2020

While at work on May 14, 2018, Jon felt a pop below his left ear followed by numbness in his left hand, a headache, vision changes, and slurred speech. Something was definitely off, so Jon decided to drive himself to the ER where he was immediately admitted for signs of a stroke. An MRI and CT scan revealed a tumor the size of a kidney bean surrounded by swelling. This growth had caused his brain to shift resulting in the symptoms that Jon had experienced while at work. At the time, doctors believed that his tumor was operable and a plan was put in place to perform a biopsy to confirm their findings.

On May 23, 2018, Jon underwent a brain biopsy where it was revealed that the swelling around the kidney bean-sized tumor was actually a tumor itself the size of a tennis ball. Because of its size and location, the tumor was no longer operable as it would likely cause a severe deficiency.

On June 4th, 2018 Jon received his official diagnosis: Stage 3 Anaplastic Astrocytoma (AA3). Jon’s next step was to undergo aggressive chemotherapy and radiation in the hopes that this treatment will shrink the tumor.

In September of 2018, Jon was back at work!

Fast forward to June 2019, Jon was now at Cedars-Sinai getting routine MRIs and checking in with his NO.
One scan however did not come back as the doctor expected and showed that the tumor had actually grown.
June 26, 2019 Jon underwent a craniotomy. They doctors were able to remove 80% of the tumor but were unable to remove the other 20% due to it being too close to critical structures. The pathology report came back from the removed tumor and Jons cancer had metastasized. Jon was diagnosed with a Glioblastoma (GBM).
Jon started a new treatment regimen two weeks after the tumor had been removed. His treatment would consist of an iv treatment every two weeks (avastin) and chemo every six weeks! Toward the end of 2019 Jon was approved for an optune cap. He would add this cap to his list of treatments! The cap was to be worn everyday for a minimum of 16 hours in the hopes of stopping the cancer cells from dividing.

February 24, 2020 Jon went in for a routine appointment and an MRI scan. The scan was only done on this day because Jon had previously been experiencing seizures, slurred speech and stroke like symptoms the days leading up to the appointment.
The scan revealed swelling in the right frontal lobe and the looks of what could be tumor growth. The doctors decided another surgery would be needed.
On March 5, 2020 Jon will undergo his next surgery in hopes of removing/debulking the area with swelling and tumor growth.

Newest Update

immunotherapy and radiation

Journal entry by Lauren Jarema —

It’s been a little while since I have posted on here. This whole pandemic thing has really changed things up in our house.

Jon’s still recovering well from surgery on March 5th. However, the road to get to where he is now has been anything but easy. While the physical pain was not nearly as bad after this surgery the side effects have been his biggest hurdles. 

Jon attends occupational therapy once a week to regain strength in his left had. He is making such great progress with the help of his therapist. He has also just recently decided to take up banjo lessons again! This will help him with his finger and hand movements as well!!! It will also allow him to find some time for himself doing something he enjoys!!

On April 13th Jon started his immunotherapy therapy as well as his avastin treatments (IV infusions). These treatments will be done every three weeks (next one is May 4th).  He tolerated the treatments like a champ! However, there have been many side effects that have come along with this treatment. All ranging from short term memory issues, headaches, seizures and exhaustion. While his doctor does not see these side effects as a concern and believes they will go away as time goes on we can only pray that he doesn’t have to experience them for much longer. I do not like seeing him in pain and at times not remembering something we just talked about. 💔

On top of the IV infusions Jon started radiation on April 27th at Hoag hospital. He will be continuing radiation until May 1st. This round of radiation is is extremely short but is the absolute last round his body can receive. The radiation is suppose to work injunction with the immunotherapy! So once again let’s pray that this is the case.

Overall, Jon is doing well! Some days are harder than others but the good days definitely out weigh the bad.  We are enjoying our family walks everyday and enjoying building these small precious moments with the twins we will never get back.

Please continue to pray for Jon!

Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 4:10


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