Support for Dominic Nesta
Donation protected
Dom Nesta is a most beloved member of the Gloucester and Rocky Neck community who needs our help at this time. Dom very recently had brain surgery, his 15 surgery since being diagnosed with Von Hipple Lindau disease at age 11. Dom is having another surgery on June 22 to repair a severed tendon, this surgery has a 12 week recovery period. Between his brain and tendon surgery, Dom will be unable to work for several months, and his wife Nicole is unable to work as well, as taking care of and managing Dom's health issues is her full time job. The funds raised will go directly to Dom and Nicole to help sustain their living expenses for the duration of his healing process.
Here is their June 4 facebook post if you'd like more insight into their journey. They had just returned to Gloucester after sailing the intracoastal to Florida over the winter: (their facebook page if you'd like to follow: https://www.facebook.com/SVPatrickJohn/?ref=page_internal)their facebook page
We got home at the end of April, as you know. It was several days of rough sailing to get here and we were thrilled to be home. However, that very same night, Dominic started to experience some symptoms of his disease. We rescheduled his appointment for sooner, but he couldn't wait that long so we rushed him in to the emergency room. They couldn't pinpoint exactly what was wrong, though we knew it was something related to a spinal tumor and we knew that one of the cysts in his brain had grown. They sent him home on some medication to ease the pain and we waited.
A week later we went to his scheduled appointment with his specialist, where they were hoping his symptoms had improved. They had not and his pain level was very high. Thankfully, his specialist is the leading neuro-oncologist for his disease and was able to find the problem. Dominic has 2-3 new spinal tumors in his spinal cord. They are so tiny that they barely were visible on his scan. His doctor was hopeful that this was the source of all of his symptoms, and gave us steroids to reduce the swelling they caused as well as help with the pain. He sent us home with optimistic thoughts about how it would go, and we waited.
Pause the story for just a minute, what are we waiting for? We have recently become aware of a new medication, which even the doctor is calling a "miracle drug". It is specifically for VHL and has the potential to be a therapy which could eventually put Dom's tumors in remission. Only problem? It won't be FDA approved and available to the public until September... Ok, back to the story.
Fast forward another 3 weeks, to yesterday. Dom has been in pain for all this time, though some of his other symptoms have subsided from the steroids. We had a phone appointment with the doctor, who was expecting good news. We don't have good news. The main issue is Dom's balance at this point. A lot of you know how we are used to doing 4-6 mile hikes everyday, now he can barely stay upright for 100 feet. His doctor was hoping the steroid would solve this, but the fact that it didn't indicates that it is the cyst in his brain causing these problems. We were hoping to wait for the new medication to solve it, but that will not be possible.
Dominic will have to get his 13th brain surgery, 14th major surgery overall.
On top of that, the medication for his pain has not been helping. We have one more to try, but if that doesn't help he will need chemotherapy for the tumors in his spine.
We are currently waiting to schedule his brain surgery. We had been working all this time, up to this point, but that won't be possible for much longer. We are planning to move Patrick John over to the inner harbor very soon to make it easier to deal with in the future.
We appreciate all the well wishes and prayers being sent to us, and if there is anything you can do to help we will let you know. We sincerely enjoyed and remember fondly our trip and all of the interactions we had with you guys. It was an adventure we'll never forget and it was made all the more special by you all.
Thank you, thank you, thank you.
Here is their June 4 facebook post if you'd like more insight into their journey. They had just returned to Gloucester after sailing the intracoastal to Florida over the winter: (their facebook page if you'd like to follow: https://www.facebook.com/SVPatrickJohn/?ref=page_internal)their facebook page
We got home at the end of April, as you know. It was several days of rough sailing to get here and we were thrilled to be home. However, that very same night, Dominic started to experience some symptoms of his disease. We rescheduled his appointment for sooner, but he couldn't wait that long so we rushed him in to the emergency room. They couldn't pinpoint exactly what was wrong, though we knew it was something related to a spinal tumor and we knew that one of the cysts in his brain had grown. They sent him home on some medication to ease the pain and we waited.
A week later we went to his scheduled appointment with his specialist, where they were hoping his symptoms had improved. They had not and his pain level was very high. Thankfully, his specialist is the leading neuro-oncologist for his disease and was able to find the problem. Dominic has 2-3 new spinal tumors in his spinal cord. They are so tiny that they barely were visible on his scan. His doctor was hopeful that this was the source of all of his symptoms, and gave us steroids to reduce the swelling they caused as well as help with the pain. He sent us home with optimistic thoughts about how it would go, and we waited.
Pause the story for just a minute, what are we waiting for? We have recently become aware of a new medication, which even the doctor is calling a "miracle drug". It is specifically for VHL and has the potential to be a therapy which could eventually put Dom's tumors in remission. Only problem? It won't be FDA approved and available to the public until September... Ok, back to the story.
Fast forward another 3 weeks, to yesterday. Dom has been in pain for all this time, though some of his other symptoms have subsided from the steroids. We had a phone appointment with the doctor, who was expecting good news. We don't have good news. The main issue is Dom's balance at this point. A lot of you know how we are used to doing 4-6 mile hikes everyday, now he can barely stay upright for 100 feet. His doctor was hoping the steroid would solve this, but the fact that it didn't indicates that it is the cyst in his brain causing these problems. We were hoping to wait for the new medication to solve it, but that will not be possible.
Dominic will have to get his 13th brain surgery, 14th major surgery overall.
On top of that, the medication for his pain has not been helping. We have one more to try, but if that doesn't help he will need chemotherapy for the tumors in his spine.
We are currently waiting to schedule his brain surgery. We had been working all this time, up to this point, but that won't be possible for much longer. We are planning to move Patrick John over to the inner harbor very soon to make it easier to deal with in the future.
We appreciate all the well wishes and prayers being sent to us, and if there is anything you can do to help we will let you know. We sincerely enjoyed and remember fondly our trip and all of the interactions we had with you guys. It was an adventure we'll never forget and it was made all the more special by you all.
Thank you, thank you, thank you.
Organizer
Brenda Malloy
Organizer
Gloucester, MA
