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On January 6, 2017 Rick went to the doctor with what presented as stroke symptoms. His physician informed him that she believed he was having or had a stroke and ordered him to go to the ER at Sparrow Hospital. A few hours later Rick, Ricky, and I were sitting in the waiting room with dozens suffering from the flu. Little did we know that our lives would be forever changed that night.
Technicians performed an EKG and took Rick for a CT scan. Shortly after returning to the waiting room the ER staff found Rick an ER room and escorted us all into it while we waited for the doctor. Sitting there waiting we assumed that Rick would need physical therapy, but we hoped he would make a full recovery. A few minutes later we were informed that Rick had a large mass on his brain. Needless to say we were stunned, but our thoughts turned quickly to the little boy that would permanently have those words etched in his brain.
Rick was moved to the neurology floor that night. We met a man that thought he would be Rick’s neurosurgeon Saturday morning. He informed us that he would do the surgery Monday morning, removing the tumor completely. He informed us that when Rick woke up from surgery that there was a possibility that Rick would be paralyzed on his right side. We were to let him know the next morning how we would like to proceed. We spoke with family and it was decided that it would be in Rick’s best interest to get a second opinion from U of M. The transfer wouldn’t happen until Monday, which would put the surgery out until later the following week. Thankfully that day we met our angel nurse, Faith. She made phone calls, told us who to call, let us use her cell phone, but at every turn we were running into the same non-business day problems…insurance wasn’t open, case workers weren’t available, surgeons were off. That evening before I left Faith informed us that they had a surgeon at U of M that would accept Rick’s case and the transfer was being processed. There was a chance he would be transferred to U of M before the weekend was over.
Sunday afternoon Faith informed us that Rick would be transferred to U of M by ambulance that day, and the next day we would meet the man that gave us hope, Sean Hervey-Jumper. He provided an educational synopsis of what the tumor may be and he informed us about the “awake” procedure he would be performing. His goal was to give Rick the best quality of life while removing as much of the tumor as possible. Rick was sent home a few days later with steroids to prepare for surgery.
January 17, 2017 Rick went into surgery with a team of 12, and most of the tumor was removed. We were told at the end of the surgery that it was likely a Glioblastoma Multiforme, but pathology would take several days to confirm. Unfortunately the results returned and confirmed that the diagnosis given after surgery was correct. It was decided that Rick would receive the standard treatment and he would try to get into a Phase III clinical trial that creates a personalized vaccine. He completed his first round of chemotherapy and 6 weeks of radiation on April 4th. Rick, the first patient at U of M, qualified for the clinical trial and has received three of his four induction dose vaccines. He will receive the last induction dose May 8th. Future injections will occur once a month for 11 months or until the tumor looks to be worsening.
Today Rick suffers from fatigue and his “stroke symptoms” seem to be more bothersome, but both are thought to be due to the after-effects of the radiation. MRIs show that he does have some swelling where the tumor used to be, but again this is thought to be from the radiation. We’ll know more after the next MRI in July. Until then we are doing our best as a family to stay busy and positive while we try to maneuver this bumpy road. Our life will never be the same as it was, but we still have each other right now, and THAT is all that matters. So, if you see me around and want to say hi or you want to call or text, please know that I will answer you when I have a few extra moments (please be patient…this family is keeping me hoppin’) but I will get back to you and NO, YOU ARE NOT BOTHERING ME!
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