Joe Cummins

First post: Jan 3, 2018 Latest post: Mar 23, 2018
We’ve started this CaringBridge to keep Joe’s friends and family updated. Joe is currently fighting brain cancer, and we appreciate all your kind words and support during this time!

For those new to Joe’s story, it all began about a year and a half ago. Joe started experiencing extreme nausea, vomiting, tiredness, intense thirst and unexplained weight loss. He was referred to a GI doctor, as everyone thought this was related to a stomach issue. Joe described these symptoms as if he were waking up with the worst hangover of his life every single morning. His day to day life was deteriorating right before our eyes. There were several tests, procedures, and stays in the hospital, yet doctors continued saying Joe was a healthy 25-year-old guy.  It seemed so wrong to want to find something...anything wrong, yet that's where we were as we continued to watch Joe spiral downward. A healthy, young male should not lose 70lbs without any explanation. The diagnosis they finally settled on was Gastroparesis, a lifelong condition where your stomach becomes paralyzed. 

In August, Joe was admitted to KU Med. At first, we felt helpless as they agreed with other doctors. He was discharged and went home on steroids. Shortly after arriving home that day, we received a call from a nurse. She stated test results indicated his cortisol levels were dramatically off and referred him to an endocrinologist. 

The endocrinologist ran several labs, where he found his hormones were extremely out of whack. Since your hormones are controlled by your pituitary gland, the doctor was quick to suspect a brain tumor located on his pituitary gland. An MRI was scheduled, where it was discovered that Joe had not one, not two, but three brain tumors.

The next month was a complete whirlwind for us and family. We met with two members of his medical team, an ENT doctor and a neurosurgeon. The ENT doctor was able to remove the tumor located behind his nose (nasopharynx) and pathology came back benign. Just like that, Joe went from 3 to 2 tumors!! The remaining tumors are located on his pituitary gland and pineal gland. A brain biopsy was successfully performed in November 2017. Joe recovered quickly as we waited for results.

Our fears were confirmed when pathology came back and we heard the word malignant. Joe’s tumors are known as germinomas, an inoperable and very rare type of brain cancer. Although we hear these words, we remain extremely upbeat and hopeful as we also hear the words “curable” and “treatable”. 

Additional tests, MRI, and spinal tap to search for cancer cells in his cerebral spinal fluid and spine luckily came back negative. We are also grateful his eyesight hasn't been compromised--a concern since one of the tumors is pressing against his optic chiasm.

Currently, Joe has good days and bad days. He works as often as he is able, but some days are rough for him. He wasn't able to get out of bed on Christmas, but has rallied over the past few days.

The oncologist currently has Joe set up on an aggressive treatment plan. It consists of 4 rounds of chemotherapy, each round lasting three weeks, beginning the first week of January. After 12 weeks, his medical team will evaluate his progress. Once Joe’s chemo is finished, he will start 5-6 weeks of radiation. This has been a very bittersweet journey for us, as we are so relieved to finally know what Joe has been up against for far too long. He is tough as nails, and we know he is going to attack this head on (literally!).

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