On May 6th, 2015, our son Dillon-Patrick suffered a major brain hemorrhage while getting prepared for a baseball game to start. His words were "Dad my head feels like it is gonna explode " and it sure did. He passed out into my arms and became unconscious on the way home. We received help at Valley Care hospital and Dillon was air lifted to UCSF Benioff Children's Hospital Oakland (CHO). We were told the worse news one can hear and it was that he may not make it pass 2 days, so we needed to call who we need to call, and get our affairs in order.
Dillon went into a medically induced coma for a time and had spent 3 months in the PICU at CHO. He showed signs of being able to respond to commands, and after 5 surgeries ( emergency brain surgery, EVD (Ventricular Drains and Intracranial Pressure Monitoring) craniotomy to relieve brain swelling pressure , tracheostomy surgery, Dillon had proven enough to the PICU staff to allow him to be taken to the 4th floor... rehab floor. With even more tests, at this point, we still had no answers as to what had happen to Dillon (undiagnosed). After 4 1/2 months on the rehab floor, working hard and thinking we just need to recover, they were still trying to figure out what had caused Dillon's rupture; They found out... Unfortunately they discovered he had Ependymomas.
http://www.abta.org/brain-tumor-information/types-of-tumors/ependymoma.html.
After the Diagnosis, another Surgery had taken place to get a peanut M&M sized tumor out of his back and relieve a cyst that was blocking his spinal fluid from flowing. Surgery has been ruled out due to the location of the tumors in his brain. Chemotherapy is not a viable option, because it does not preform well with these type of Cancers. So they have suggested 6 weeks of radiation, 5 days a week. There is a 25% chance that this will work... that's a 1 out of 4 chance to live past 3 years and the (neurologist, oncologist, the team) are not to positive about the radiation. When we asked how do you think the radiation will do, It was answered with an "ehhh! It could work", above all else we are also told the collateral damage that Dillon will endure, for the present and the long term will be very substanital.
From barely touching the yes and no buttons in the hospital, to now sitting up, feeding himself, writing, talking, and the big one... wheeling himself in his wheelchair. AMAZING... Dillon had his Tracheostomy Tube removed in January. Remarkable. A cure would be great, God based Miracles are what we are praying for, and any subsiding of the tumors would be just as great. We are finding out more and more everyday and quite frankly if you can subside tumors and continue on your life, we are all for it.
Dillon is absolutely killin it, he says he feels like he is healing. Dillon knows It will take time but we all do believe he will walk again, and beat this disease one hundred percent. We are looking forward to sharing this amazing feat of Faith, Family, Friends, Food, and the amazing support of the community of Pleasanton, and all the communities supporting Dillon and his fight, to be healed and defy the odds that they have given him.
The donations that we have received have gone towards so much for Dillon! For example, Dillon's bed at home that was purchased ( thank you sleep number for expediting this bed for Dillon ) it has provided him comfort and allows us to care for him. Dillon's food is $1,000.00 a month, and has been on it for almost 1 year, and possibly another year of it. His current medication that is not covered by insurance runs $50.00 - $75.00 a day. Dillon has (as we expected) progressed amazingly since we have been home. Patrick and Karina have been Dillon's SOLE cargivers, and we would not have it any other way. That means that this is our job, and because of that we have close to zero income coming in. We need help with rent, food, gas to get to radiation and hospital appointments, and so much more. Every small donation means SO much to our family! It has been near impossible to get help inside our home, making life difficult.
On a positive note, just last week Dillon started school. His teacher comes here a few times a week and works with him on a varity of things. She is AMAZING!!!! But there are NO other support systems coming in to help us here. Dillon's Tumors are growing, we decided Dillon needs more help with killing these tumors, so we started radaition last week. As I mentioned, 5 days a week, 6:45am arrival time in Berkeley for 6 weeks. We are blessed with having an amazing support system, including family and friends, who are here, and who see where we need help, and absolutly step in. This family, through this tragedy has been shown so much love and we will never be able to show our gratitude to everyone but we hope each and everyone of you know we are extremly grateful. DILLON STRONG!
Follow Dillon-Patrick's progress at:
https://www.facebook.com/Dillon-Strong-100830100270550/
Dillon went into a medically induced coma for a time and had spent 3 months in the PICU at CHO. He showed signs of being able to respond to commands, and after 5 surgeries ( emergency brain surgery, EVD (Ventricular Drains and Intracranial Pressure Monitoring) craniotomy to relieve brain swelling pressure , tracheostomy surgery, Dillon had proven enough to the PICU staff to allow him to be taken to the 4th floor... rehab floor. With even more tests, at this point, we still had no answers as to what had happen to Dillon (undiagnosed). After 4 1/2 months on the rehab floor, working hard and thinking we just need to recover, they were still trying to figure out what had caused Dillon's rupture; They found out... Unfortunately they discovered he had Ependymomas.
http://www.abta.org/brain-tumor-information/types-of-tumors/ependymoma.html.
After the Diagnosis, another Surgery had taken place to get a peanut M&M sized tumor out of his back and relieve a cyst that was blocking his spinal fluid from flowing. Surgery has been ruled out due to the location of the tumors in his brain. Chemotherapy is not a viable option, because it does not preform well with these type of Cancers. So they have suggested 6 weeks of radiation, 5 days a week. There is a 25% chance that this will work... that's a 1 out of 4 chance to live past 3 years and the (neurologist, oncologist, the team) are not to positive about the radiation. When we asked how do you think the radiation will do, It was answered with an "ehhh! It could work", above all else we are also told the collateral damage that Dillon will endure, for the present and the long term will be very substanital.
From barely touching the yes and no buttons in the hospital, to now sitting up, feeding himself, writing, talking, and the big one... wheeling himself in his wheelchair. AMAZING... Dillon had his Tracheostomy Tube removed in January. Remarkable. A cure would be great, God based Miracles are what we are praying for, and any subsiding of the tumors would be just as great. We are finding out more and more everyday and quite frankly if you can subside tumors and continue on your life, we are all for it.
Dillon is absolutely killin it, he says he feels like he is healing. Dillon knows It will take time but we all do believe he will walk again, and beat this disease one hundred percent. We are looking forward to sharing this amazing feat of Faith, Family, Friends, Food, and the amazing support of the community of Pleasanton, and all the communities supporting Dillon and his fight, to be healed and defy the odds that they have given him.
The donations that we have received have gone towards so much for Dillon! For example, Dillon's bed at home that was purchased ( thank you sleep number for expediting this bed for Dillon ) it has provided him comfort and allows us to care for him. Dillon's food is $1,000.00 a month, and has been on it for almost 1 year, and possibly another year of it. His current medication that is not covered by insurance runs $50.00 - $75.00 a day. Dillon has (as we expected) progressed amazingly since we have been home. Patrick and Karina have been Dillon's SOLE cargivers, and we would not have it any other way. That means that this is our job, and because of that we have close to zero income coming in. We need help with rent, food, gas to get to radiation and hospital appointments, and so much more. Every small donation means SO much to our family! It has been near impossible to get help inside our home, making life difficult.
On a positive note, just last week Dillon started school. His teacher comes here a few times a week and works with him on a varity of things. She is AMAZING!!!! But there are NO other support systems coming in to help us here. Dillon's Tumors are growing, we decided Dillon needs more help with killing these tumors, so we started radaition last week. As I mentioned, 5 days a week, 6:45am arrival time in Berkeley for 6 weeks. We are blessed with having an amazing support system, including family and friends, who are here, and who see where we need help, and absolutly step in. This family, through this tragedy has been shown so much love and we will never be able to show our gratitude to everyone but we hope each and everyone of you know we are extremly grateful. DILLON STRONG!
Follow Dillon-Patrick's progress at:
https://www.facebook.com/Dillon-Strong-100830100270550/