Update 5/17/2020: Since my last update, my wife, myself and our oldest son have moved to Florida in 2017. Not long after we moved to Florida, my wife became pregnant with our second son, Tatum.
I continue to travel to Henry Ford in Detroit, Michigan for treatment of my Anaplastic Astrocytoma. I also see a team of doctors locally at Moffitt Cancer Center.
My Tocagen trial has recently been cancelled; however, they are still allowing me to take part in it. I travel every three months to Henry Ford to be seen by my doctor and receive my medication.
Life is busy and always changing.
I would just like to say, when given a diagnosis don't let anyone tell you your prognosis. Keep your faith strong and fight. I started thinking that way after I was diagnosed and I have outlived what my first doctor told me. Keep up the fight. My wife and I are here for all of you that have been diagnosed or are caregivers. Caregivers please feel free to reach out. My wife Sarah is more than willing to talk with you. Being a caregiver I believe is a difficult job, and is under appreciated by the patient. As a patient I have taken notice and tell my wife thanks for just being there for me.
Update 7/3/21: Since my last update I have continued my clinical trial for my AA3. I have said and will continue to say that having an AA3 has been a blessing for me. I have learned to live in the moment and not be weighed down by life. Family is top priority. I have had one set back where my seizure medication stopped working for me. I had multiple mini seizures and lost my ability to speak for a week. I had my medications switched and, after a few days regained my speech slowly. I now have no residual effects. My tumor has been stable throughout the process. My family has been supportive as I travel back and forth to doctor appointments in Detroit. I continue to live my dream of watching my boy's grow and conquer different aspect of their lives. They have accomplished many first like: going to pre-school, riding a bike, and fishing. If any patients or caregivers have any questions dealing with an anaplastic astrocytoma, please feel free to email me or text me. Caregivers, my wife is a rockstar when it comes to being a caregiver. My email is firstname.lastname@example.org, cell # is (586) 552-3158
Since my last update, everything has been stable. I continue to take my trial medication and will continue to take for as long as I can. Thankfully my scans have stayed stable and I don't have any new symptoms.
I continue to work roughly 50 hours per week and spend as much time as I can with my wife and boys. My oldest son started kindergarten this year. He loves school and learning new languages like Spanish. My youngest son is preparing for preschool in the fall.
I can't complain about life, because I am still living and any time with family is a blessing. In a few days. we will be going on a cruise for the first time. My boys and my wife are so excited for a trip together that does not revolve around a doctors appointment.
Again, if any patients or caregivers have any questions dealing with an anaplastic astrocytoma, feel free to reach out through the Musella website or to me directly. My email is email@example.com and my cell # is (586)552-3158.