Wilsons Need Your Love/Large Marge is discharged!
Donation protected
Late November of 2018 Joe woke up with a sore upper back that progressed into nerve pain radiating down his arm. After two trips to the ER and finally getting an MRI they not only diagnosed that he had a compressed disc at the C6-C7 location causing this pain, but they found a large tumor at C1 right under his brain stem. It was super scary and overwhelming. The tumor was so complex that the surgeons here in Lafayette cancelled the surgery on December 28th and sent Joe to see specialists at the Neurological Institute in Indianapolis at St. Vincent.
A team of surgeons consulted and studied Joe's tumor to determine the best way to take it out. We had SO MANY tests, scans, a cerebral angiogram etc. The good news the tumor was not cancer. The bad news it was in his spinal column and potentially attached to his spinal cord and it was large. We named it LARGE MARGE. Marge got the axe on April 26th. There is only a small part of the tumor still on the spine but the veinous structure feeding Marge was totally removed.
As many of you know Joe and Rowan have a disease called Charcot Marie Tooth (CMT) Disease. Our daughter Rowan has had 3 surgeries in 5 years and now Joe has had surgery. We will be financially tapped I think for life as we will be paying medical bills forever. While we have insurance, we do have a max out of pocket now of $7750 annually. We have hit that every year for 5 years. We haven't been able to save money due to this so I am not sure how to do things differently.
The challenge this time is also trying to make ends meet while Joe is not working. That is half of our income on hold till he is well enough to get back at it. Living the life of a barkeep is a decent living but it doesn't have any benefits to protect in these situations. There is no paid time off. We already live paycheck to paycheck with his income. Without it...we are on the struggle bus. The Dive family has been amazeballs though and we cannot thank them enough for their support and flexibility.
Joe was off for six weeks in December/January and now he is off until they give him the okay to go back to work. It will be at least be 6-8 weeks. We aren't sure if he will be able to do full time right away. So far, Joe doesn't show any major deficits. He still has some dizziness and weakness. He is working really hard with physical therapy. He is totally motivated to be back to his normal routine.
Any help is appreciated. I hate asking for help. It is hard to swallow your pride especially when you know life is hard for all of us sometimes. But what comes around goes around...The Wilsons will pay it forward. We love you guys to the moon and back.
A team of surgeons consulted and studied Joe's tumor to determine the best way to take it out. We had SO MANY tests, scans, a cerebral angiogram etc. The good news the tumor was not cancer. The bad news it was in his spinal column and potentially attached to his spinal cord and it was large. We named it LARGE MARGE. Marge got the axe on April 26th. There is only a small part of the tumor still on the spine but the veinous structure feeding Marge was totally removed.
As many of you know Joe and Rowan have a disease called Charcot Marie Tooth (CMT) Disease. Our daughter Rowan has had 3 surgeries in 5 years and now Joe has had surgery. We will be financially tapped I think for life as we will be paying medical bills forever. While we have insurance, we do have a max out of pocket now of $7750 annually. We have hit that every year for 5 years. We haven't been able to save money due to this so I am not sure how to do things differently.
The challenge this time is also trying to make ends meet while Joe is not working. That is half of our income on hold till he is well enough to get back at it. Living the life of a barkeep is a decent living but it doesn't have any benefits to protect in these situations. There is no paid time off. We already live paycheck to paycheck with his income. Without it...we are on the struggle bus. The Dive family has been amazeballs though and we cannot thank them enough for their support and flexibility.
Joe was off for six weeks in December/January and now he is off until they give him the okay to go back to work. It will be at least be 6-8 weeks. We aren't sure if he will be able to do full time right away. So far, Joe doesn't show any major deficits. He still has some dizziness and weakness. He is working really hard with physical therapy. He is totally motivated to be back to his normal routine.
Any help is appreciated. I hate asking for help. It is hard to swallow your pride especially when you know life is hard for all of us sometimes. But what comes around goes around...The Wilsons will pay it forward. We love you guys to the moon and back.
Organizer
Erica De La Wilson
Organizer
Lafayette, IN
