I've been away from this for awhile, not for lack of things happening or thoughts to share, more for lack of time to sit down and have five minutes to think quietly and ponder my life.
(Wasn't that something Virginia Woolf warned us women about? Anyway...)
Today one of my dearest patients died.
It wasn't an unexpected death, and truth be told, I think it is largely a relief that she died. Sad yes, but devastating, no.
This patient is 20 years old, and I have been taking part in her care, in some capacity, on and off for four years now. I first met her when I was a medical student, and she had just been diagnosed with leukemia. Since that initial diagnosis, she has been treated and then relapsed several times. She has had blood clots, strokes, major infections that nearly killed her, severe pain, and all of the other horrible side effects of chemotherapy.
Over half of her time the past four years has been in our pediatric ward. She has won over many of our hearts. Before she was ever diagnosed with cancer or dealt with any of the effects, she already had a developmental delay without any official diagnosis. She usually acted and interacted more the way you would expect a 6-10 year old child to, sometimes though, she would show a remarkable maturity and depth beyond even her 20 years.
A couple of months ago, she became ill again and was diagnosed with yet another relapse of her leukemia. She had already had nearly every possible treatment, and the cells that took over her bone marrow were clearly beyond a point of responding. The consensus was that there would be no curing her disease, but there might be medications to give to slow the progression of the disease. Since her bone marrow was full of cancer cells, she was able to make very little of the other essential cells, like red blood cells to carry oxygen, white blood cells to fight infections, or platelets to help the blood clot and keep her from bleeding heavily at the slightest of injuries. This meant daily or every other daily blood and platelet transfusions. She had little appetite and was severely protein deficient and malnourished, which meant a feeding tube had already been put in weeks prior and she was being fed through the feeding tube. Her days and her nights were full of medical interventions, not all of them pretty and some quite painful.
At first, the plan was for everything that could be done, to be done. Give the chemotherapy to slow down the leukemia, draw the blood for labwork, give the blood transfusion,s give the antibiotics, everything everything everything.
It began to seem cruel, since we knew it wouldn't change the ultimate outcome.
One of the best people I have met in life, one of the best people we have on our pediatrics care team, my dear friend Dr. Kathy Davis, began to work with this patient and her family toward determining the appropriate goals of care. It was a slow process, hours long conversations, tears, unhappiness, sometimes the patient just pulling the blanket over her head and saying "I don't want to talk about it."
One Saturday morning, I went in to see her.
The air felt different in her room. I began my usual morning talk with her, but after a few niceties back and forth, I couldn't stop myself from asking her, essentially, "If your heart stops beating, do you want us to push on your chest and do..." She cut me off. "No. Don't do those things to me! If its my time, if Jesus is ready for me, then I'm ready to go." I brought up the questions of the "breathing tube and breathing machine," again, cut off. "No! If Jesus is ready for me, I'm ready, too."
I felt so relieved, in part because she was so certain and peaceful about this decision. In selfish part because the idea of even having to consider doing a full code blue on this girl made me want to cry. Now, she had told me we shouldn't.
Over the next few days, our conversations regarding what she wanted us to keep doing and to stop doing continued. First we stopped waking her up every 6 hours to check her vital signs. We stopped keeping meticulous track of what she ate and what it did to her blood sugars. She was thrilled about no more fingersticks and no more insulin shots. Eventually, we stopped checking her labs, stopped giving her blood and platelets, stopped giving her antibiotic, stopped giving her tube feeds.
It seemed that a girl needing so much everyday, now not being give anything, would be short for this world.
Amazing things were happening, though. She was so happy and so peaceful. She began sleeping through the night, which she hadn't done in months. "I realized I just need to make decisions and stop worrying about things," she told me. She began eating her favorite foods, none of which she had touched for weeks. She was smiling, joking, happy.
Of course there were downsides. Pain became an issue that had to be dealt with, and I hope we did a fine job keeping her comfortable. She worried about how her mom would do after she died. In fact, she said, "The reason I don't want to go on machines is because they won't really help me and then my mom will just have to decide when to stop them, and she can't handle that. It would be too hard."
She told several of us that God has keys to everyone's houses, and she was going to get them from him and come to our houses when we were gone so she could play with our pets. She told us she would be watching over us. She mentioned many times that she would watch over Henry for me when I couldn't be with him. She told her family she would be waiting for them and holding out her hand to them when they were dying, and would show them the way. She was looking forward to taking care of the babies in heaven. She was also very excited about getting purple angel wings, "God waters you and you grow your wings. Mine will be purple."
She was dying, and she knew she was dying. She wasn't afraid, though. She wasn't tormented by the unknown. She had made her peace with things on earth, she was ready to move on to the place she felt she was promised to go.
I don't know how to say that I am sad but not sad for her death today.
I'm sad that she got sick and had to go through four years of pain and suffering, granted, not all bad, but any pain and suffering for her makes me sad.
I'm sad that she didn't get to go to junior college last fall like she had planned, and sad that we won't know what she might have done with more years of life.
At the same time, though, I am so happy for her. She wasn't laying in her bed her last weeks thinking of all she could have done or won't get to do with her life. She was happy with what she had already accomplished, and living each day knowing she was ready to die. I am not sad that she won't have pain anymore, won't have to worry about her mom. I am happy that any of her suffering is over, and that she went quietly, without fear.
I don't know what I believe about the afterlife. I don't know if she is now somewhere with her purple angel wings, rocking babies. I don't know if Jesus reached out his hand to her and brought her "home." I don't know if I should expect my dog to do strange things because some new spirit is here playing with her.
I want to believe she is happy. I want to believe she is watching over me, watching over all of the nurses and doctors and therapists she loved. I want to believe that Henry has a force protecting him from harm (I hear her tell her mom, "She has to go home to Little Henry, her 'Prince Charming.'" When I went to tell her I was leaving for the day.)
What I know is that the last weeks of her life were not lived in vain. They were truly a gift, in so many ways, to so many people. A gift to know she was in a peaceful state, a gift to be given hope that we might be able to bring that peaceful state to all of our patients, a gift to know that even when we, as doctors, can't cure, the we can still heal, still comfort.
I have to thank her, eternally, and know that her spirit is somewhere to feel the gratitude in my heart.