Fibrolamellar Treatment Costs
Donation protected
It has been a whirl wind year for me after growing up in Derry City in Northern Ireland and moving to New york City here in the states 4 years ago, where I have settled down and got married last July to Maureen Daw with all of our families in Massachussetts.
I had been ill for a while for months leading up to the wedding, nothing so serious, mainly heartburn and vomiting sporadaically. The doctors were checking into diet, or some other gastrointestinal diseases.
Late August 2014 we did a sonogram and to everyone's dread found a 7inch tumor on my liver. A few tests and biopsies later, we discovered it was a primary tumor for an extremely rare form of cancer that very little is known about and targets young adults. It is called Fibrolamellar and less than 200 people around the world get diagnosed each year.
For more information www.fibrolamellar.org is a good source of information.
So after the tumor was diagnosed I was admitted to Memorial Sloan Kettering Hospitial here in New York City. Thankfully, it is one of the few hospitals that has experience in dealing with this disease and within a couple of weeks of the diagnosis I was on the operating table. I had a 50% liver resection, gallbladder removal, several infected lymphnodes along with some sections of the diaphragm where the liver tumor was pushing against.
The surgery went really well with no complications, and within 2 weeks I was back home rehabilitating and hoping that we were able to operate in time.
Unfortunatley in the weeks after the surgery it became apparent that my Fibrolamellar had already metastized and had moved to other locations in my body. The main ones being several tumors in each of my lungs and a tumour in my sternum.
As Fibrolamellar is a rare desease, there is little known about it and there is no treatment that is accepted as a standard form of treatment. So I have been on several clinicial trials here in the US, mainly with Memorial Sloan Kettering. Now I am also working with John Hopkins Hospital in Baltimore in the hope of finding a treatment that is effective.
I have tried 3 treatments to date and still looking for the treatment that will stop this disease spreading further. Presently it has spread to a variety of areas in my bones, including several vertebraes in my spine, my tailbone and hips. It also appears to have spread to a lot of my lymphnodes in my abdominal cavity. It is still in my lungs and possibly my bowel and liver again too. For the most part I still have a good energy, but have been unable to go back to work.
I have had radiation treatments for my sternum, tailbone and most recently an intense 10 treatment radiation therapy on my lower spinal vertebraes. It has shown sucess on my sternum so hopefully I will have more positive results.
I have tried Fulfox chemotherapy with oxyplatin which showed that it had begun to stabilize the tumors in my lungs and abdominal cavity, but new spots are appearing in my bones so now I am going to John Hopkins Hospital in Baltimore this July and August to try a brand new Immunotherapy trial which sounds great in theory and we are optimistic it will yield some positive results.
Unfortunatley my treatements will be on a trial and error basis due to the rarity of this disease. I am very fortunate to be here with my amazing supporting family and friends that are all over the world, Inluding here in New York City, Massachussets, Hong Kong and all over Ireland. Additionally, I am in the fortunate position to be located so close to great hospital care.
I have had so much support already, that we are all amazingly grateful for. It has also allowed me to research this disease in order to gain awareness which in turn will help me to focus on doing what I need to to to be as strong as I can be whilst undergoing treatments.
People have been so generous and always asking what they can do to help. I am so humbled to have received so many prayers, hopes, well wishes and donations. My friends and family have encouraged me to create this gofundme site so that there is an easy way for people to help if they wish wherever they are in the world. Gofundme seems like it is a universal way to unite any fundraising from my family and friends.
I had been ill for a while for months leading up to the wedding, nothing so serious, mainly heartburn and vomiting sporadaically. The doctors were checking into diet, or some other gastrointestinal diseases.
Late August 2014 we did a sonogram and to everyone's dread found a 7inch tumor on my liver. A few tests and biopsies later, we discovered it was a primary tumor for an extremely rare form of cancer that very little is known about and targets young adults. It is called Fibrolamellar and less than 200 people around the world get diagnosed each year.
For more information www.fibrolamellar.org is a good source of information.
So after the tumor was diagnosed I was admitted to Memorial Sloan Kettering Hospitial here in New York City. Thankfully, it is one of the few hospitals that has experience in dealing with this disease and within a couple of weeks of the diagnosis I was on the operating table. I had a 50% liver resection, gallbladder removal, several infected lymphnodes along with some sections of the diaphragm where the liver tumor was pushing against.
The surgery went really well with no complications, and within 2 weeks I was back home rehabilitating and hoping that we were able to operate in time.
Unfortunatley in the weeks after the surgery it became apparent that my Fibrolamellar had already metastized and had moved to other locations in my body. The main ones being several tumors in each of my lungs and a tumour in my sternum.
As Fibrolamellar is a rare desease, there is little known about it and there is no treatment that is accepted as a standard form of treatment. So I have been on several clinicial trials here in the US, mainly with Memorial Sloan Kettering. Now I am also working with John Hopkins Hospital in Baltimore in the hope of finding a treatment that is effective.
I have tried 3 treatments to date and still looking for the treatment that will stop this disease spreading further. Presently it has spread to a variety of areas in my bones, including several vertebraes in my spine, my tailbone and hips. It also appears to have spread to a lot of my lymphnodes in my abdominal cavity. It is still in my lungs and possibly my bowel and liver again too. For the most part I still have a good energy, but have been unable to go back to work.
I have had radiation treatments for my sternum, tailbone and most recently an intense 10 treatment radiation therapy on my lower spinal vertebraes. It has shown sucess on my sternum so hopefully I will have more positive results.
I have tried Fulfox chemotherapy with oxyplatin which showed that it had begun to stabilize the tumors in my lungs and abdominal cavity, but new spots are appearing in my bones so now I am going to John Hopkins Hospital in Baltimore this July and August to try a brand new Immunotherapy trial which sounds great in theory and we are optimistic it will yield some positive results.
Unfortunatley my treatements will be on a trial and error basis due to the rarity of this disease. I am very fortunate to be here with my amazing supporting family and friends that are all over the world, Inluding here in New York City, Massachussets, Hong Kong and all over Ireland. Additionally, I am in the fortunate position to be located so close to great hospital care.
I have had so much support already, that we are all amazingly grateful for. It has also allowed me to research this disease in order to gain awareness which in turn will help me to focus on doing what I need to to to be as strong as I can be whilst undergoing treatments.
People have been so generous and always asking what they can do to help. I am so humbled to have received so many prayers, hopes, well wishes and donations. My friends and family have encouraged me to create this gofundme site so that there is an easy way for people to help if they wish wherever they are in the world. Gofundme seems like it is a universal way to unite any fundraising from my family and friends.
Organizer
Gavin Daly
Organizer
Astoria, NY