After months of missing my husband and children, hundreds of hours praying, countless silent meals shared with Dana in the HUP cafeteria and developing an addiction to Rolaid Soft Chews (I recommend the tropical fruit flavor) we have reached our first positive milestone in the PML battle—T cells are ready!
We are 3 days ahead of schedule due to the excellent response of the cells, so hopes are extremely high as we all gather around my mom’s ICU bed to watch a small bag get hooked to the IV pole. To most people it is just another IV bag being added to the half dozen already on my mom’s IV pole, but to us it is monumental. That tiny bag of milky fluid holds the path of our future and lets us know that God is listening. Our prayers, along with those of so many others—family, friends, and sometimes complete strangers— have been answered. We have been given this moment to forget the horrors we have struggled through and focus on rebuilding. I watch Dana at my mom’s bedside and see her beautiful smile, the moment is fleeting but glorious all the same, before it fades and she lowers her head. I know in my heart that she has moved beyond the infusion of the cells and is starting to pray for their success and so I do the same. As we look to each other I can feel the connection of our thoughts, hopes and prayers and I am overwhelmed once again by Dana’s faith.
It will be at least 2 weeks before we witness any results from the T cells, two weeks of praying for success while blocking worries of adverse events. This treatment does not come without a price, side effects that make me wish for ignorance. Our worst fear would be that the cells do nothing and as I refuse to entertain that thought I will focus on our next greatest concern. Immune reconstitution inflammatory syndrome (IRIS) is a condition in which the immune system begins to recover, but then responds to anopportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse.
My mom developed PML because for some reason her T cells were suppressed and her body’s normal response to fight the virus never stepped up. Not only does this make it more difficult to fight the infection; it may mean that a level of infection that would normally produce symptoms is instead undetected. By adding these stimulated T cells back to my mom’s immune system we are rapidly increasing her body’s reaction to the virus, a sudden increase in the inflammatory response produces nonspecific symptoms such as fever, and in some cases a worsening of damage to the infected tissue. We will need to worry about swelling of her brain caused by the attacking cells, if this happens she will be treated with corticosteroids to keep the inflammation under control. The only issue is that the T cells will be compromised by the corticosteroids and thus begins a scary balancing act. These are the fears we will live with for the next 2 weeks, but we won't dwell on them because that feels too much like admitting defeat.
We are 3 days ahead of schedule due to the excellent response of the cells, so hopes are extremely high as we all gather around my mom’s ICU bed to watch a small bag get hooked to the IV pole. To most people it is just another IV bag being added to the half dozen already on my mom’s IV pole, but to us it is monumental. That tiny bag of milky fluid holds the path of our future and lets us know that God is listening. Our prayers, along with those of so many others—family, friends, and sometimes complete strangers— have been answered. We have been given this moment to forget the horrors we have struggled through and focus on rebuilding. I watch Dana at my mom’s bedside and see her beautiful smile, the moment is fleeting but glorious all the same, before it fades and she lowers her head. I know in my heart that she has moved beyond the infusion of the cells and is starting to pray for their success and so I do the same. As we look to each other I can feel the connection of our thoughts, hopes and prayers and I am overwhelmed once again by Dana’s faith.
It will be at least 2 weeks before we witness any results from the T cells, two weeks of praying for success while blocking worries of adverse events. This treatment does not come without a price, side effects that make me wish for ignorance. Our worst fear would be that the cells do nothing and as I refuse to entertain that thought I will focus on our next greatest concern. Immune reconstitution inflammatory syndrome (IRIS) is a condition in which the immune system begins to recover, but then responds to anopportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse.
My mom developed PML because for some reason her T cells were suppressed and her body’s normal response to fight the virus never stepped up. Not only does this make it more difficult to fight the infection; it may mean that a level of infection that would normally produce symptoms is instead undetected. By adding these stimulated T cells back to my mom’s immune system we are rapidly increasing her body’s reaction to the virus, a sudden increase in the inflammatory response produces nonspecific symptoms such as fever, and in some cases a worsening of damage to the infected tissue. We will need to worry about swelling of her brain caused by the attacking cells, if this happens she will be treated with corticosteroids to keep the inflammation under control. The only issue is that the T cells will be compromised by the corticosteroids and thus begins a scary balancing act. These are the fears we will live with for the next 2 weeks, but we won't dwell on them because that feels too much like admitting defeat.
During the cell infusion Dan, Dana, Chris and I stood around my mom's bed staring at her until Chris pointed out how much she hated to be stared at. We stepped aside to allow Dr Schuster and his team to stare at her instead! It was funny to see the doctors watching my mom, excited and anxious just like us. Dr Schuster admitted that he was afraid we wouldn't make it to this point and we could certainly relate. "This disease just started galloping" he said "I gave her the mefloquine, hell I threw the kitchen sink at her! Just to buy us some time." I guess it should have been scary to hear him admit that but for some reason it was comforting. For all his medical knowledge he was admitting that some things are just love. And we have love....and hope.
Strange as it may be, we are now praying for a fever...
Everyone deals with dark times in their own way, but what I can't understand is how you can be missing your Husband and Children when you have enough time on your hands to share those dark times with a whole population of internet users who you don't even know? Your family is probably missing you too, and can be a great source of support for you during these times.
ReplyDeleteFor what it's worth, I hope things look up as much as they can and wish you and your family some ease, peace, and comfort during your suffering.
Sometimes when you are the person everyone turns to for strength your options of an outlet for your grief and worry cannot be to lean on your family because it increases their worry when their pillar starts to crumble.
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