My mom became ill in October of 2009. She woke up one morning and complained of a slight loss of balance after a cold, it lasted a few days before we decided she should see a doctor. Her primary doctor diagnosed it as vertigo and prescribed some meclizine and figured it was said and done. In January of 2010 the balance issue had not been corrected and we noticed a slight slur in her speech when she was tired, we decided a trip to the ER would give us access to some answers a lot faster.
After losing my mom somewhere between triage and a trauma room the doctor who finally found her told us that she had had a stroke. My mom’s sense of humor being what it is she turned to the doctor and said “Get the hell outta here, are you serious?” She spent 3 days in the hospital and was sent home with physical therapy instructions and a starter supply of Plavix. Two days later the vomiting started. It was just once or twice every few days at first so I followed up with her cardiologist and her neurologist. They both said it was normal because the stroke had affected her cerebellum. After three weeks went by and the vomiting increased to a minimum of 4 to 5 times a day we decided another trip to the ER was in order.
My mom was so weak at this point that my stepfather had to carry her down the steps. She sobbed uncontrollably and begged us not to make her go down the steps. This reaffirmed our need to go to the ER, you see my mom doesn’t cry and sobbing is certainly not in her. Ten years ago she was diagnosed with non-Hodgkin’s lymphoma, while in the waiting room for her first visit with the oncologist she turned to me and said “Jodey, I don’t belong here. These people are sick, they have cancer. They need this man’s time more than I do” Crying is just not how she deals.
Our second trip to the ER was not much better than the first. Although they didn’t lose her in the many rooms of the trauma center they did diagnose her with a brain tumor. Of course, they were wrong but it at least gave us an idea of where to go next. Dr Schuster (her oncologist that she thought everyone needed to see more than she did) received a phone call at his office at HUP and had her transferred to his hospital on the diagnosis. After the first day at HUP they had stopped the vomiting, put my mom back on solid foods and explained to us that she did not have a brain tumor. That is where the nightmare began…
My mom has a serious viral infection called PML. Simply put, PML is a serious progressive viral opportunistic infection of the brain's white matter. The virus responsible for PML is one that most everyone has been exposed to; the JC virus. In people with undamaged immune systems, the JC virus is harmless. However, in people with damaged immune systems, such as people living with HIV or experiencing chemotherapy, the JC virus can cause serious infections, in this case PML. The thing that makes this not so simple is that my mom does not have HIV and she has never had chemotherapy despite her lymphoma diagnosis 10 years earlier. Because there are so few cases there are no definite treatments. PML is taking away my mom’s ability to send messages within her brain. She lacks coordination needed to walk, feed herself easily, and speak clearly. Now that we have the diagnosis and know for sure what is happening to her we are left to think, “Would it be horrible of us to ask God for the stroke instead?”
After losing my mom somewhere between triage and a trauma room the doctor who finally found her told us that she had had a stroke. My mom’s sense of humor being what it is she turned to the doctor and said “Get the hell outta here, are you serious?” She spent 3 days in the hospital and was sent home with physical therapy instructions and a starter supply of Plavix. Two days later the vomiting started. It was just once or twice every few days at first so I followed up with her cardiologist and her neurologist. They both said it was normal because the stroke had affected her cerebellum. After three weeks went by and the vomiting increased to a minimum of 4 to 5 times a day we decided another trip to the ER was in order.
My mom was so weak at this point that my stepfather had to carry her down the steps. She sobbed uncontrollably and begged us not to make her go down the steps. This reaffirmed our need to go to the ER, you see my mom doesn’t cry and sobbing is certainly not in her. Ten years ago she was diagnosed with non-Hodgkin’s lymphoma, while in the waiting room for her first visit with the oncologist she turned to me and said “Jodey, I don’t belong here. These people are sick, they have cancer. They need this man’s time more than I do” Crying is just not how she deals.
Our second trip to the ER was not much better than the first. Although they didn’t lose her in the many rooms of the trauma center they did diagnose her with a brain tumor. Of course, they were wrong but it at least gave us an idea of where to go next. Dr Schuster (her oncologist that she thought everyone needed to see more than she did) received a phone call at his office at HUP and had her transferred to his hospital on the diagnosis. After the first day at HUP they had stopped the vomiting, put my mom back on solid foods and explained to us that she did not have a brain tumor. That is where the nightmare began…
My mom has a serious viral infection called PML. Simply put, PML is a serious progressive viral opportunistic infection of the brain's white matter. The virus responsible for PML is one that most everyone has been exposed to; the JC virus. In people with undamaged immune systems, the JC virus is harmless. However, in people with damaged immune systems, such as people living with HIV or experiencing chemotherapy, the JC virus can cause serious infections, in this case PML. The thing that makes this not so simple is that my mom does not have HIV and she has never had chemotherapy despite her lymphoma diagnosis 10 years earlier. Because there are so few cases there are no definite treatments. PML is taking away my mom’s ability to send messages within her brain. She lacks coordination needed to walk, feed herself easily, and speak clearly. Now that we have the diagnosis and know for sure what is happening to her we are left to think, “Would it be horrible of us to ask God for the stroke instead?”
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