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Friday, April 29, 2011
Skye is 15 years old. In fact, we share birthdays, and I will remember her every year for the rest of my life. She has brain cancer, gleomastoma multiforme, and she has been fighting it since she was 11. We have her now for end of life care after a series of palliative operations and radiation. It has been along four years for Skye and her family.
She cannot talk or use any of her extremities, her arms and legs as flaccid as cooked spaghetti. Occasionally she opens her eyes, but it is impossible to determined whether or not she sees anything. Probably not. What is certain, however, is that she responds to the closeness of her mother. When Amanda climbs into bed with her, or even when she sits at her side and holds her hand, Skye’s face visibly relaxes. Even though in a coma now, she knows when her mother is near, and I believe she hears her voice, in spite of profound hearing loss brought on by the aggressive tumors in her brain.
Why Baby Skye, you may ask? When her cancer was diagnosed at age 11, her growth stopped, due in part to the radiation treatments meant to shrink her tumors and relieve her of the headaches that attend this kind of cancer. She has an infantile demeanor, a round face which was caused by all the steroids used to relieve her symptoms. She stopped swallowing before she came to us and was getting tube feedings, and she continued to get them until her system could no longer tolerate them, was too tired to process nutrients. The skin on her hairless scalp is mottled from the same radiation that stunted her growth. She indeed, looks like a baby angel as she moves toward her passing. As always, Simba, souvenir of her trip to see "The Lion King" on Broadway is tucked under her left arm.
It has been my honor to care for her, advocate for her, support her parents through Skye’s inevitable passing from this world. We, her parents and I, have prayed for her, for a peaceful passing. We have prayed that our hands be blessed as we minister to her final needs. We have cried together, laughed together, and loved this precious child together.
Back at their home, Skye’s younger sister, Mia, waits. Her grandmother is with her, trying to make her life as normal as possible, packing her lunch and sending her off to school every day, helping with her homework. Mia is afraid of Skye’s cancer. She wonders if it will happen to her. Cancer affects everyone close to it and some who aren’t. It is a monster with a long reach.
I am going to climb up on my soap box for just one paragraph.
Last Tuesday, when I first met her, Skye was suffering with a harsh death rattle, sounding as though she were drowning in her own respiratory secretions. She had mucous draining out of her nose and the corners of her mouth. The night nurse didn’t work on them as hard as she should have. She tried to suction them out, but to no avail. Suctioning secretions is, for me, a last resort. It traumatizes the patient and never produces the desired result because it does nothing to dry the secretions at the source. Believe me when I say that I would never hand a patient over to the next shift in that condition. We have a plethora of standing orders to treat pain and secretions. If they didn’t do the job, then the nurse should have called our medical director, even if it was the middle of night. (End of rant).
I spent 12 hours working to dry those secretions, giving her something about every 30 minutes for the first 6 hours of my shift. When my shift was over, I handed her care over to a wonderful nurse in whom I have complete confidence. Skye was breathing easy and her secretions were almost gone. I knew Hannah would finish what I had started.
When I arrived at work the next morning, I found Skye at peace and breathing without difficulty. Amanda and her husband, Keith, were asleep in the daybed in Skye’s room, so I quietly checked on my Baby Skye and tiptoed out of the room, breathing a sigh.
Before being downsized, I was to have worked yesterday. Instead I found myself at home and thinking about Skye and her family. So, I dressed to do my errands, loaded my dogs into the car and went to see her. I found her peaceful and breathing easy, actively dying, her angelic face relaxed and her eyes closed. The ever present Simba was tucked under her left arm, just like always.
I spent about an hour with Amanda, and she didn’t stop talking the whole time. She showed me pictures of Skye before she got sick. She talked about how brave her little girl is, what a tough fighter she is. We shared stories about our pets, about men, about parenting and about death. Amanda is ready to let Skye go. All she asks is that she be comfortable.
Likely, Skye will be gone when I return to work next Wednesday. She came into my life just a few days ago, but she will never leave. She is the first child I have cared for, and though I knew it would be hard, I never dreamed it could be this beautiful.
© cj Schlottman