Vincent Grigoletti, a beautiful and courageous young man, has been fighting medulloblastoma brain cancer since he was 10, in fall of 2010. He has been full of life and love for the 19 years he has been with us.
He has gone through standard therapies for medulloblastoma as well as numerous research studies and clinical trials, including immunotherapy, personalized medicine (DNA/RNA analysis), and while we were optimistic each time he received a new agent, it worked for awhile but eventually the tumor became resistant to the agents and progressed. He has gotten help from Loyola, Lurie, Devos, most recently three different plans involving TB403, then Nifurtomox, then Vinblastine, usually combined with other agents orally or infused. He has gone through three tumor resections:
2010 - the original medulloblastoma tumor at Chicago Children's/Lurie 2013 - the relapsed meduloblastoma tumor at Lurie 2019 - one of the tumor masses in his head, of which there are now many at DeVos
All this time, he has hardly cried except in physical pain, and has never felt sorry for himself. He has experienced countless hospital stays, tests, infusions, needle sticks and devices being put into him. He has both an Ommaya catheter (to access CSF and administer agents) and a Shunt (to relieve pressure in his brain/CSF, draining into his abdomen, currently in his head, as well as a port in his chest for accessing blood. Vincent has endured severe pain from the treatments and attempts be more mobile, causing a few falls over the years. He has lost over half of his hearing from the treatments, and has severe challenges to his vision. He has also had speech issues since the last resection on May 31, 2019. We've had him utilize physical and occupational therapists at home.
He has been amazing in how fiercely he has fought this terrible disease. We were overjoyed to see him complete grade school, complete high school and complete two online courses last year at Triton College. As our youngest boy of 4, he has seen two of his brothers, Mark and Louis finish college, and has lived to see 19 of his birthdays.
He wants to drive a car, and have the simple ability to walk and run with his friends and brothers. However, now he has only a walker to help him since he's had steadiness issues after the latest tumor progression. He will probably need a wheelchair in the coming weeks.
We have received help for him from Ann & Robert H. Lurie Hospital, back when they were still in Lincoln Park, but are now in Streeterville. We have received help for him from Loyola University Medical Center (radiation, chemo), and tests to determine his counts for blood transfusions or other infusions. We have received help for him from Cinncinnati Children's Hospital, as a 2nd opinion to his time at Lurie. He received maximum doses of radiation from the beginning and including proton therapy, but his body cannot take much more of this we are told.
The Helen DeVos Children's hospital has helped Vincent since March, 2018, upon recommendation from the Lurie doctors who ran out of options for him last year.
We are told after 18 months from Helen DeVos Children's Hospital in Grand Rapids that the MRI Vincent had on Wednesday, 8/21/19, is showing progression, thus the current treatment is not working. They have told us that he has limited time left with us, 1-5 months depending upon how fast the tumors grow and potentially block the fluid in his brain. He will likely sleep longer and longer each day. He will need hospice care very shortly. We are done with the visits to Grand Rapids, many of which were once a week. They have stopped the current chemo treatment plan as of now.
We are taking Vincent to Northwestern University Hospital, since he is now an adult, on Wednesday, 8/28/19 for an additional opinion. Lurie Children's Hospital is right next door to NUH and we hope there is something more that they can offer which will help Vincent to keep fighting.
We greatly appreciate all of the prayers, kindness and assistance which our family and friends, as well as the generous foundations and communities have provided for Vincent and us. You are all wonderful and Vincent will be forever grateful for your love and support! Feel free to come visit Vincent, please call Laurine 708-805-3305 if you want to greet Vincent at our home 3827 Woodside, Brookfield, IL 60513, to celebrate his life and give him a hug. We are not sure how many more good days he will have.
