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Jeremy's recovery

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Jeremy's road to recovery has been a difficult time for our family. Jeremy has always been a healthy and happy child growing up. Doctor visits were usually well checks. When he turned 18 he had started to notice his facial movement declining. He got to the point where he couldn't open his jaw. We were told that he probably had Bell’s palsy. Then we noticed that he had shortness of breath and his limbs would turn bluish pink. With no insurance, and being declined for Medicaid, I, his mom Linda, decided to just take him to the Emergency Room in hopes that they could figure out why he had these symptoms. They performed a CT scan on his brain and they diagnosed him with a rather large brain tumor. It was over a month before I could find a Doctor who would see him without us paying the $500.00+ office visit. It was painstaking for me as a mom not to be able to get him help right away. I finally found a Doctor who had a charity application. So, they got him in ASAP and ordered more tests. EKG, MRI, CT scans. You name it, he's had it. Well, the Doctor viewed his results and quickly referred him to a Neurosurgeon in Oklahoma City, 84 miles from home. The neurosurgeon ordered more tests and found that he had such a large tumor that it had grown at such a rate that it broke through his temporal bone into his brain. It grew and started to put pressure on his brain and his auditory and facial nerves. He was scheduled for brain surgery the next week. Because the tumor had gone from his facial nerve into the brain, another Doctor was consulted. This time a Neurotologist was called in and this Doctor saw the tumor putting pressure on Jeremy's inner ear canal. They decided that the surgery would be done with both Doctors on hand as a team. Jeremy's surgery, performed on November 3, 2014 lasted 11 hours. His recovery has been ongoing. After his surgery, he contracted Gillain Barre' syndrome, a condition in which the immune system attacks the nerves.  He was so weak that he couldn't walk, or even lift his arms up. They administered a feeding tube after Jeremy went four days without eating. His throat was paralyzed and couldn't swallow without the food or drink going straight into his lungs. He was in the hospital ten days and I stayed every day with him in the hospital room, while my husband and kids drove back and forth daily because of work and school.  I worked with Jeremy, massaged his neck, and tried to make his stay as comfortable as I could. I even made him some stress balls out of rubber gloves. I would put them in his hands and have him squeeze as hard as he could. I even put small water bottles in his hands and had him lift them as much as he could. He was such a wonderful patient and never complained of mom’s therapy. He was in so much pain but got such bad treatment. The RN took a great amount of time just to get Jeremy's pain medicine. I felt helpless. I would take it all away from him if I could. During the surgery, Jeremy's facial nerve and auditory nerve were severed. His face is paralyzed on the right side and he has complete loss of hearing in his right ear. On January 19, he went in and had another surgery where the Doctor connected his facial nerve to a tongue nerve in hopes Jeremy will have some facial movement in the future. The Doctor also placed a gold weight in Jeremy's right eyelid to help counterweight his eyelid being able to close, or blink. He still has problems with getting particles in his eye. Even after both surgeries, and many Doctor Appointments, Jeremy still has the bluish pink feet and numbness in his hands. The Neurosurgeon told us that the type of tumor that Jeremy had was mostly known in a hereditary manner. My father, Jeremy’s deceased grandpa was diagnosed with a brain tumor near his brain stem years ago. The Neurosurgeon sent Jeremy to a Geneticist and Genetic testing has been ordered. The Geneticist ordered a full spine MRI last week and the test results came back with another diagnosis of a tumor on Jeremy’s lower spine.  They say that with this type of tumor, they can reoccur in any nerve. Jeremy’s other siblings and I are in dire need of testing as well. David, our youngest was diagnosed with a tumor on his auditory nerve. They say that it is small and they will have to watch him closely. Jeremy’s Dad has missed a lot of work as we both take him to his Doctor appointments in Oklahoma City. We want to support him as much as possible. We applied for disability and he was denied. All of his Doctors can’t believe that he was denied either. We definitely appealed the decision, but were told it can take some time before he hears anything. Bills keep piling up and I know that that’s the last thing Jeremy needs to worry about. I thought a lot about doing this Go Fund Me. We are proud people and don’t like to ask for help but when it comes to your child, parents will swallow their pride in hopes that they will receive help.  Jeremy is suffering from depression. He has a Black Lab named Bob, who we credit for Jeremy’s recovery. That dog loves Jeremy and has been by his side every step of the way. Even the day Jeremy went in for brain surgery. Bob decided that he would go searching for Jeremy. Our family was distraught knowing that Jeremy would be crushed if we had to give him the news that his beloved Bob was gone. Fortunately, we never had to tell him. A friend of the family searched day in and day out for him and contacted us the next day with a text saying, “I have Bob!” It was the best news we could get. I only wish we could have taken Bob into the hospital to see Jeremy. He has been like therapy for Jeremy. I know it would have helped. Since Jeremy has been home, they are together every moment. When Jeremy has a Doctor appointment, Bob seems worried when he sees Jeremy getting his shoes on. We have to reassure him and someone has to stay with Bob and no going outside until Jeremy returns home.

 Due to the fact that we don’t have medical insurance, a lot of the tests and Doctor Visits have had to be paid out of pocket. Jeremy worries about these situations. I try to reassure him that everything will be okay. My husband, Jeremy’s dad, has been supportive and has helped with everyone at home while Jeremy was hospitalized. He used vacation time for Doctor Appointments and for the surgery day. Thereafter, any work that he missed was without pay. The next step is a Neurologist for the tumor on his spine. We don’t know at this time what is in store. It has been so hard for Jeremy suffering from the residuals of Gillain Barre’. He can’t even pick up Bob or throw a tennis ball for him. It’s very sad to see him like this. He spends about 90% of his day in his room. He has built a gaming computer and plays games and builds maps. He loves to learn and is always looking up information on line. Anytime our son David has a question, we send him in to ask Jeremy or his older brother Jeff, who also needs to see the Doctor as they think he might carry the same gene that has caused tumors. When he was 14, he had a tumor on his knee. They removed it but, immediately sent him to Oncology. It was not cancer but was never diagnosed as a hereditary type of tumor so we never put two and two together until now. As their mom, I ask for your help. We would really appreciate any help we can get. Thank you in advance, you can help alleviate some of our worries. I just wish we could concentrate fully on Jeremy’s recovery and make sure he gets the best medical treatments and tests that are ordered without worrying how much that will cost or worry about no one seeing him unless we have funding. I told my husband Steve, that I feel like Jeremy is a number in the medical community. I wish everyone had the honor of knowing Jeremy, before his onset of the tumor. He was always laughing, making jokes. He worked at a Dinosaur Museum. He went on a dig and the Paleontologist, Dr. Axel, said that he was the best prepper, or sand scriber, he has seen in his career. Jeremy cleaned the dinosaur bones so well that they looked new. He was also invited to another dig with Dr. Axel to Arizona’s Grand Canyon. Maybe he will be able to go one day. Well, that’s about all I can tell you at this time. Again, thank you from the bottom of our hearts. We really appreciate your help.
                                            Steve , Linda Bray and Family
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Donations 

  • Anonymous
    • $100 
    • 6 yrs
  • Anonymous
    • $500 (Offline)
    • 6 yrs
  • Bernie Taylor
    • $40 (Offline)
    • 6 yrs
  • Anonymous
    • $200 (Offline)
    • 6 yrs
  • Bernie Taylor
    • $50 (Offline)
    • 6 yrs
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Organizer

Linda Adams-Bray
Organizer
Ada, OK

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