We took a vacation in October 2018 to see his family in Kentucky. Before leaving he stated he wasn’t feeling well but he was just getting over a cold so I didn’t think anything of it. He then stated his nose and the upper part of his mouth was numb, again I didn’t think anything of it.
When we got back from vacation he went to his doctor because his symptoms never went away. His doctor prescribed him allergy medications and sent him on his way.
On October, 24 2018 after having multiple tests done he was hospitalized due to a mass in his brain. We were then in for the worst ride of our lives.
We went to Shands Hospital in Gainesville, FL for more testing and confirmation of the mass that was found. After rounds of steroids and multiple other tests the doctors still didn’t know what the mass was and would need to do a biopsy to find out answers. We were sent home November 2, 2018.
Just days after being discharged from the hospital we went back in on November 5, 2018 the night before his biopsy because he was having double vision and more facial numbness and felt it would be good to go back to the hospital. The next day November 6, 2018 after having an MRI the night before we were told that the tumor had grown.
JJ was ultimately diagnosed with a cancerous grade 4 Glioma Brain Stem Tumor.
His only chances of “getting better” would be having speech therapy, occupational therapy, and physical therapy. At this time I became his primary caregiver and all I could do was watch him deteriorate. I quit my job to care for him. I bathed him, dressed him, helped him walk, fed him, he had to use a walker, cane and wheelchair. I had to see him struggle and become completely dependent on me and his family. He went from being a loving, caring, and hardworking man to nothing.
Seeing him deteriorate in front of my eyes made me feel helpless, all I could do was watch my husband fade away and there was nothing I could do about it. The neuro oncology team and neuro surgery team told us what to expect and all we could do was expect the worse. We found there was no cure for this tumor and with it being in this brain stem he had a lower chance of survival.
The neuro oncologist took a chance on us and started JJ on Avastin and would then begin him on chemo, knowing this wasn’t a cure but hopefully it would help to ease the symptoms and give us more time with him. But because of a previous diagnosis at age 15 with a PNET brain tumor we found JJ was unable to have radiation treatments and all he could do was Avastin infusions and chemo.
We were then released from the hospital November 10, 2018 but would return again November 10, 2018 due to symptoms getting worse. On November 15, 2018 we were back in the hospital because JJ had become unresponsive to any of his family. We were discharged 2 days later. On November 21, 2018 after his first round of Avastin, JJ had become unresponsive and was admitted into the hospital once again, he wasn’t talking, drinking, and couldn’t walk.
We came to find that his body was no longer strong enough to receive treatment and from then there was nothing else anyone could do for us. JJ was then taken from the hospital, into hospice care on November 27, 2018. I stayed with him every day, every night and wouldn’t leave his side just like I did in the hospital the weeks before. At the age of 28, and after a year and 20 days of marriage, JJ passed away on December 8, 2018.
I would like to see more research done on this disease, more time and effort put into finding a cure. I wish we knew more information and had more time to prepare for the things we dealt with. I would like to see more done in finding ways to raise awareness for this horrible disease.
– Wendy Eaton