Our family is reeling from the positive results of the PCR. The experimental treatment that we pinned all our hopes on has not worked and now the fear of losing our mom is a harsh reality hovering on the horizon. Each time I let myself think of life without my mom an overwhelming panic rises in my chest. It takes so much effort to stop it from clawing its way out that I am truly exhausted at the end of each day.
Another MRI will be performed on Friday to see if the lesion in my mom's brain stem has gotten worse or remained the same. The results of this test will decide whether or not it is worth proceeding with the final round of cells that was stated in the original protocol. I feel in my heart that this final treatment will not make a difference, but I know how it feels to not want to stop too. The question I ask myself every minute of each day: Is acceptance of a situation the same as quitting? I don't want to lose my mom, she is a huge part of my heart and my soul but I don't want to make her stay in a life she doesn't want. My mom always laughed, I can see her smile and hear the sound of it ringing in my head. I miss those moments when trivial things were so amusing and we would laugh until tears came. My mom doesn't laugh anymore, things are not funny and our sadness is great.
Her doctor's keep talking about my mom's level of awareness and responsiveness and this seems to be of so much importance to them. I know my mom is with us, I see the recognition in her eyes when she sees our family, but it doesn't carry the importance for me that it does for her doctors. I brought Cadence to the hospital with me that day to visit my mom and I saw my mom's eyes on her; my mom was seeing her granddaughter, really seeing her. The heartache for me is that my mom cannot interact with the people she loves; she watched Cadence that day and listened to her sing and tell stories but she couldn't talk to her, hug her, touch her silky baby hair. What kind of life is that when those you love become nothing more than a picture show.
There is still the chance that the third treatment will kill the virus, but the prognosis is grim for my mom's recovery of functionality. What is the point of killing a virus if the affects of it can never be taken away. I don't want to condemn my mom to a life without her own laughter, her own independence and I know she would not want that either. The hard part is knowing when to stop hoping and whether or not you can live the rest of your life with the decisions you make. I carry a lot of guilt over some decisions I made in my mom's care and despite the fact that others tell me I made the best choices possible with the information I had, I know it is still baggage that I will carry for a long time to come. I will do anything in my power to ensure that no one else in my family has to endure the weight of guilt like I do, but I also have to keep my mom's wishes in my sight as we move forward. This is an emotional balance beam that I am not sure how to move across and the consequences of a fall are very steep.
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