It's been a long, long week.
I mentioned in the last post that we had decided to shift Aila's care to UCSF, and Wednesday afternoon was her first appointment. Brian took her, and he Facetimed me into the call, since I was at work and between patients. Her new doctors are fantastic--answered all of our questions patiently and calmly. We are beginning the Consolidation phase--the 2nd--of her chemotherapy protocol. Today was Day 1 of 28. After a few hours sleep, Aila and I got up at 6am and drove to UCSF in the city. The check-in was quiet and easy, and a warm child-life specialist used a set of dolls and doll hospital beds/gear to orient Aila to the procedures that lay ahead. Shortly after, we went to the pre-op area, where we put her in a gown and an anesthesiologist gently gave her some intravenous midazolam into her PICC line to calm her and begin to prepare her. I then carried her into the operating room (after I put on a long sterile gown) and held her while they gave her propofol to put her to sleep. I lay her down on the OR bed and left, with deep tears in my eyes and the same feeling of grief that I had before the last procedure that required general anesthesia.
Today, they placed her port and removed her PICC. The port is a small "door" that allows easy access to a venous catheter that has been threaded through her neck into a central vein. This is how she will receive her chemotherapy from this point forward. They also went into her spine once again, giving her another intrathecal dose of chemotherapy. She was then admitted to the hospital for the night, which was supposed to be for monitoring pain associated with the port placement as well as an IV dose of vincristine. My father came to relieve me, so I could drive back to Stanford for a full day of patients and meetings. At about 5pm, he called Brian somewhat frantic, saying that her heartrate was very high and that she had a fever of 103. When Brian arrived later in the evening to relieve my father, the doctors told him that they would be unlikely to let us go unless a fever had been absent for at least 48 hours.
Ah, we're so overwhelmed. I feel afraid to write this as I know that people who care about us immediately want to offer suggestions and ideas about how to relieve our stress. And when they do, however well-intentioned the thoughts and advice are, I can't help but feel agitated and sometimes annoyed...and then guilty, since I like when people like me and when I can please them with my agreement. I will say that this experience is unlike any other I've ever had. When I've been pregnant, and we are expecting a baby who we know will rock our world and change our lives, then I have been prepared to handle the various forms of advice, guidance, and suggestions at how to relieve stress and maximize tranquility. With these suggestions, I'm 80% grateful and only 20% annoyed. I know they are genuniely trying to pass on wisdom and help. What's been interesting for me during the past month and a half is that when people--friends, strangers, family--offer advice about how we should live our lives in respone to Aila's cancer diagnosis, I feel at last 80% agitated and annoyed and only about 20% grateful. I don't know if it's fair, but that's how I feel. On one day in August, our entire lives were turned upside down and inside out. Nothing--with the exception of work--that we do today resembles anything we did before. Our lives are the lives of people we barely know. Please give us a sweet minute to navigate our new reality.
Oh my goodness, I love her so much. I want to care for her as much as she needs me, but I even more want to model for her what her father and I think it means to take care of ourselves, our family, and our careers. I hope she always knows that we are every day making the soundest decisions that we can, in the moment.
We love you, sweet baby, with all our hearts and souls. As your mom, I know that you are going to emerge from this mess with a big smile, huge ambition, and so much hope for your future. I regret that this will shape the early years of your life as well as Declan's and Zander's, but I think it will only make our family stronger. Of course, "Aila" means "from the strong place." We will follow your lead.
Love,
Mom
Comments
Angela Tana 9 years, 2 months ago
Vicky
Link | ReplyI'm going to stick with you through your blog. We are listening. Prayers every day for you and your family.
Sherrie 9 years, 2 months ago
My dear Vic,
Link | ReplyYou are one of the strongest people I know. Dealt with some of the worst hands in life yet still able to remain such a gentle, loving and warm human being. That is amazing. I admire you for your honesty in these blog posts. You so often are so self-sacrificing for the sake of others that I am thankful you've found a way – an outlet – for you to take stock of how you're truly feeling. Especially now, it should be about you and your family's needs. You absolutely should not feel at all guilty (because I know a part of you probably does) for focusing inward instead of outward.
I feel as though by reading your posts, I can pretend that I'm back in your office, sitting on the ground and just listening to you talk during our once-frequent chats. I miss those days of when we could see each other regularly and I felt more a part of your life, but these posts make me feel as though I'm back in your office and by your side. And just maybe, on some tiny level, I hope that I can reciprocate the same comfort and emotional support you have provided me all these years. Sending all my love as always.
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