Jose’s inoperable brain tumor relapse fund
Donation protected
Hello family and friends. Our son, Jose, was diagnosed in 2015 with pleomorphic xanthoastrocytoma (PXA) an inoperable brain tumor adhered to his thalamus. Jose will never be in remission due to the location of the tumor and it continues to be an active cancer that creates cyst fluid which requires to be drained every 3 to 4 weeks. In April of 2021 Jose had eye surgery due to the result of his tumor damaging the nerve of his eye. If he did not have this surgery, Jose would have continued to suffer from blurry vision and crossing of his right eye. In addition, Jose has minimal function of his right hand and is a self taught lefty due to being unable to use his right arm. He also has a permanent tremor and foot drag.
Our son has gone through two rounds of chemotherapy, one while his father was deployed. After thanksgiving of 2021, Jose’s tumor became troublesome again and my wife and I went into caregiver mode. Jose spent many days in a two week span having early morning MRIs and neurological check ups. Before Christmas of 2021, Jose had his monthly MRI and tap. My wife and I disclosed our concerns with his medical team and we all came to the conclusion that Jose’s current treatment plan of 7 years is no longer affective. Unfortunately there are no chemotherapy treatments that will work for the tumor. His medical team has advised us that they will be speaking with other hospitals and colleagues out of state for second and third opinions. This is the heart breaking news my wife and I did not want to get 4 days before Christmas.
On Dec 28th jose had his 11th brain surgery to replace his Omaya implant which assists his neurosurgeon with removing fluid from the tumor. Jose’s brain ventricles have also become enlarged which is also concerning because it means his shunt isn’t working as well. Jose also had another biopsy done of his tumor in order to send it to UCSF in order to have a genetic sequence done of the tumor and hopefully this test will tell us which treatment is best. Jose Woke up from surgery with no feeling of his right arm and leg. Jose will start PT and OT very soon.
My wife is a social worker and I am active duty military. Depending on which treatment we choose is best for jose, my wife will have to take time off from her job or reduce her hours. We have tricare(military medical insurance, which most people think is free) but we have Tricare Select, which allows my family to choose our own doctors. With this benefit comes high out of pocket cost for us yearly. Jose sees multiple doctors, therapist and specialists throughout the year and we want to make sure we can support him every step of the way.
Our warrior will be turning 14 years old on Valentine’s Day!! He has been a true warrior throughout his fight. Jose was supposed to test for his black belt in a few weeks which unfortunately had to be paused. Starting the fundraiser will assist us in paying all of our out of pocket cost and also assist us with the wages lost due to my wife not being able to work as before. This was something we did not plan on and it breaks our hearts that our son has to suffer so much.
Our son has gone through two rounds of chemotherapy, one while his father was deployed. After thanksgiving of 2021, Jose’s tumor became troublesome again and my wife and I went into caregiver mode. Jose spent many days in a two week span having early morning MRIs and neurological check ups. Before Christmas of 2021, Jose had his monthly MRI and tap. My wife and I disclosed our concerns with his medical team and we all came to the conclusion that Jose’s current treatment plan of 7 years is no longer affective. Unfortunately there are no chemotherapy treatments that will work for the tumor. His medical team has advised us that they will be speaking with other hospitals and colleagues out of state for second and third opinions. This is the heart breaking news my wife and I did not want to get 4 days before Christmas.
On Dec 28th jose had his 11th brain surgery to replace his Omaya implant which assists his neurosurgeon with removing fluid from the tumor. Jose’s brain ventricles have also become enlarged which is also concerning because it means his shunt isn’t working as well. Jose also had another biopsy done of his tumor in order to send it to UCSF in order to have a genetic sequence done of the tumor and hopefully this test will tell us which treatment is best. Jose Woke up from surgery with no feeling of his right arm and leg. Jose will start PT and OT very soon.
My wife is a social worker and I am active duty military. Depending on which treatment we choose is best for jose, my wife will have to take time off from her job or reduce her hours. We have tricare(military medical insurance, which most people think is free) but we have Tricare Select, which allows my family to choose our own doctors. With this benefit comes high out of pocket cost for us yearly. Jose sees multiple doctors, therapist and specialists throughout the year and we want to make sure we can support him every step of the way.
Our warrior will be turning 14 years old on Valentine’s Day!! He has been a true warrior throughout his fight. Jose was supposed to test for his black belt in a few weeks which unfortunately had to be paused. Starting the fundraiser will assist us in paying all of our out of pocket cost and also assist us with the wages lost due to my wife not being able to work as before. This was something we did not plan on and it breaks our hearts that our son has to suffer so much.
Co-organizers (2)
Jose Rodriguez
Organizer
Virginia Beach, VA
Sigmarie Rodriguez
Co-organizer