My mom continues to have her good days and bad days, making this roller coaster ride that much worse. Some days I will walk into her hospital room with Dana and she will not even be aware of us, but then the very next day she will be answering the questions Chris asks while she sits at her bedside or trying to mouth Helen’s name through her lips. Yesterday was a very good visit; my mom was alert and aware as we all filed into her room with our gowns and surgical gloves in place. Because we are all fairly broke after this month of traveling between home and HUP we arranged to ride together yesterday. Dana, Kelly, Chris, Helen and I arrived at HUP courtesy of my minivan, so when we file into my mom’s room we are a parade without the float.
We helped Dan wash my mom’s hair because the dry, leave-in shampoo the hospital offers is totally unacceptable to him. “Your mom would not like that,” he says each time her hair goes unwashed for more than a day. Dana trimmed and filed her fingernails and covered her hands in lotion while Kelly did her feet. During this entire “spa” excursion we chatted to each other and watched as my mom’s eyes went to the person who was speaking. She watched each of us intently as we spoke from different areas of the room. It was wonderful to see her so aware of us and she even managed to push sound from her mouth. It was just an “ahhh” sound but it was her voice and I didn’t realize until then how much I missed the simple things about my mom; the sound of her voice, the smell of her newly washed hair. We love her so much, would God really take her?
My Aunt Cathy came to visit my mom over the weekend and I saw how difficult this is for her. Her last visit with my mom was in February when we received the PML diagnosis. At that time my mom was still able to move and talk, so I am sure it was quite a shock for her to be faced with my mom’s immobility and the trach and feeding tubes. As I dressed into a gown outside my mom’s room with Cathy I tried to tell her every detail of my mom’s appearance to eliminate the shock of her deterioration. I warned her about the trach, what it looks like when they suction her lungs, the fact that her tongue doesn’t always stay in her mouth and sometimes her eyes glaze and don’t focus; I told her all these things and she assured me she was fine. “If you’re not fine and the tears start, make sure you tell her it is because you are so glad to see her,” I said. The changes in my mom’s condition have been gradual for me but I have to remember the shock it is for those who haven’t seen her every day. For some reason, it is important to me that my mom not see fear in our eyes and so I try to cover it, despite the fact that I know she sees right through us all and always has. As Cathy came through the doorway and looked to my mom in her bed, the tears came. She smoothed back my mom’s hair as she spoke to her and told her she was so happy to see her. I realized instantly that she meant those words, she cried over the joy of seeing my mom not over sadness of the disease she endures. What I say in that moment were two sisters who missed one another dearly. And for a bit my mom wasn’t sick, she was just enjoying her sister and the shock was all mine.
Because of my mom’s inconsistent responsiveness, her doctors thought it would be a good idea to perform an EEG to check her brain activity. An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. These special sensors called electrodes are attached to your head with glue that is almost impossible to get off and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. These lines mean pretty much nothing to me and after talking to the neurologists who read these tests I realize it means little more to them. Certain conditions can be seen by the changes in the normal pattern of the brain's electrical activity. This seems like such a simple thing but things aren’t always as they seem. After the test was performed the doctors came to tell us that there was a lot of brain activity from my mom where they had expected to not find anything. This was great news, but before we could even crack a smile they explained a bit more. Although the activity level was high they still needed to decide if the brain activity was cognitive thought or just reflex. In my heart I know my mom is there, but I am forced to wait for further interpretation of the EEG results.
The activity level of the EEG did push us forward to having a lumbar puncture performed the next day. A lumbar puncture is a procedure to collect and look at the fluid surrounding the brain and spinal cord. During the lumbar puncture, a needle is inserted into my mom’s spinal canal low in her back. Samples of fluid are taken and a test called a polymerase chain reaction or PCR will be performed to look for levels of the JC virus. PCR is a complicated test to explain and required a conversation with the MD I work with before I could begin to understand it; in no way should my lame explanation of this theory reflect on her brilliance! Basically, PCR is a way to amplify a piece of DNA containing a particular sequence or target (JC virus, in our case). The method relies on thermal cycling; a process of repeated heating and cooling to start DNA replication, each strand is then used as the blueprint to selectively amplify the target DNA.
The problem with this test is that it is positive or negative not quantitative, which means it does not measure the level of the virus, only whether or not it is there. This leaves us with more questions just as the EEG did. If the test comes back positive do we decide the T cell therapy did not work for my mom or do we consider the fact that the first two treatments could have lowered the virus level and we still have a chance of killing it if we move forward with the third, postponed therapy? If the test is negative do we do the third round of T cells as an insurance policy against the fact that the level is too low to be detected but still there with the ability to grow? I used to think that decisions like these were based on medical facts, but through this experience with my mom’s illness I have come to realize that there are actually very few medical facts. The practice of medicine is just like any other part of life, you do the best you can with the information you have and people are always your most unpredictable variable.
We helped Dan wash my mom’s hair because the dry, leave-in shampoo the hospital offers is totally unacceptable to him. “Your mom would not like that,” he says each time her hair goes unwashed for more than a day. Dana trimmed and filed her fingernails and covered her hands in lotion while Kelly did her feet. During this entire “spa” excursion we chatted to each other and watched as my mom’s eyes went to the person who was speaking. She watched each of us intently as we spoke from different areas of the room. It was wonderful to see her so aware of us and she even managed to push sound from her mouth. It was just an “ahhh” sound but it was her voice and I didn’t realize until then how much I missed the simple things about my mom; the sound of her voice, the smell of her newly washed hair. We love her so much, would God really take her?
My Aunt Cathy came to visit my mom over the weekend and I saw how difficult this is for her. Her last visit with my mom was in February when we received the PML diagnosis. At that time my mom was still able to move and talk, so I am sure it was quite a shock for her to be faced with my mom’s immobility and the trach and feeding tubes. As I dressed into a gown outside my mom’s room with Cathy I tried to tell her every detail of my mom’s appearance to eliminate the shock of her deterioration. I warned her about the trach, what it looks like when they suction her lungs, the fact that her tongue doesn’t always stay in her mouth and sometimes her eyes glaze and don’t focus; I told her all these things and she assured me she was fine. “If you’re not fine and the tears start, make sure you tell her it is because you are so glad to see her,” I said. The changes in my mom’s condition have been gradual for me but I have to remember the shock it is for those who haven’t seen her every day. For some reason, it is important to me that my mom not see fear in our eyes and so I try to cover it, despite the fact that I know she sees right through us all and always has. As Cathy came through the doorway and looked to my mom in her bed, the tears came. She smoothed back my mom’s hair as she spoke to her and told her she was so happy to see her. I realized instantly that she meant those words, she cried over the joy of seeing my mom not over sadness of the disease she endures. What I say in that moment were two sisters who missed one another dearly. And for a bit my mom wasn’t sick, she was just enjoying her sister and the shock was all mine.
Because of my mom’s inconsistent responsiveness, her doctors thought it would be a good idea to perform an EEG to check her brain activity. An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. These special sensors called electrodes are attached to your head with glue that is almost impossible to get off and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. These lines mean pretty much nothing to me and after talking to the neurologists who read these tests I realize it means little more to them. Certain conditions can be seen by the changes in the normal pattern of the brain's electrical activity. This seems like such a simple thing but things aren’t always as they seem. After the test was performed the doctors came to tell us that there was a lot of brain activity from my mom where they had expected to not find anything. This was great news, but before we could even crack a smile they explained a bit more. Although the activity level was high they still needed to decide if the brain activity was cognitive thought or just reflex. In my heart I know my mom is there, but I am forced to wait for further interpretation of the EEG results.
The activity level of the EEG did push us forward to having a lumbar puncture performed the next day. A lumbar puncture is a procedure to collect and look at the fluid surrounding the brain and spinal cord. During the lumbar puncture, a needle is inserted into my mom’s spinal canal low in her back. Samples of fluid are taken and a test called a polymerase chain reaction or PCR will be performed to look for levels of the JC virus. PCR is a complicated test to explain and required a conversation with the MD I work with before I could begin to understand it; in no way should my lame explanation of this theory reflect on her brilliance! Basically, PCR is a way to amplify a piece of DNA containing a particular sequence or target (JC virus, in our case). The method relies on thermal cycling; a process of repeated heating and cooling to start DNA replication, each strand is then used as the blueprint to selectively amplify the target DNA.
The problem with this test is that it is positive or negative not quantitative, which means it does not measure the level of the virus, only whether or not it is there. This leaves us with more questions just as the EEG did. If the test comes back positive do we decide the T cell therapy did not work for my mom or do we consider the fact that the first two treatments could have lowered the virus level and we still have a chance of killing it if we move forward with the third, postponed therapy? If the test is negative do we do the third round of T cells as an insurance policy against the fact that the level is too low to be detected but still there with the ability to grow? I used to think that decisions like these were based on medical facts, but through this experience with my mom’s illness I have come to realize that there are actually very few medical facts. The practice of medicine is just like any other part of life, you do the best you can with the information you have and people are always your most unpredictable variable.
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